Let It Rain

The Dance

2012-02-17T14:07:00.000-05:00

Wondering what to say here.

Seems as if things are very different then when I started this blog. My world was turned upside down then. Getting the diagnosis of cancer at 33 is nothing anyone wants to hear. Especially when I was getting married and heading down that path of ....well...what is that path anyway? It's the fool for thinking that we have this all figured out. haha. When I have these thoughts I'll just return to my pretty pretty princess bed in the Mexican forest and remember....(right girls??)

A distinct memory that sticks in my mind is when I met my friend Laura in 2009. I was still a newbie at all of this. She was 3 years in the battle, and had a confidence about her even though her prognosis was not good (and has since passed on last summer). The fear didn't seem to overcome. She was cheerful and optimistic. And I was in awe. I had a fear, and an emotion that gripped--like, why me?, this is horrible and I can't believe this is happening? In looking back, I wonder what I was so afraid of. Hodgkins is a disease that is curable in 80% of people with first-line therapy, and 90% of people who add second-line therapy (yes, yes, Pam, I hear you saying...don't let me ever hear you say those stats again...). Those days I was wrought with the heaviness of it and it was nothing compared to these days--or I guess it was just different. The fear of dying never really entered my psyche. Now it does. But I go back and read my journal entries from those first months...and the pain was real too. It was uncomfortable. It was out of the norm. I go back to something a Qigong teacher mentioned to me this summer...the worst thing that has ever happened to you is the worst thing that has ever happened to you. Get it? I did.

I understand now how Laura acted as she did. Life. Life does that to you. Life gives that to you. Tolerance for pain, for disappointment, for fear...the tolerance grows strong. And the reason is because it is fed by the strength that you get from the experience. The good things. The meaningful things. The love. The fierce understanding that you can't take things for granted. The fact that you can get through. The realization that where you are now is no where you would ever be without what you've just been through--and being happy about that.

So where are we now?

Well, last time I wrote we had just found out that my PET scan showed progression of FGD avid disease. The morning after hearing this news I couldn't get out of bed. I didn't care about my responsibilities, I didn't want the curtains opened, I didn't respond to Michael's sweet words of encouragement. I just wanted to be left alone and put my head under the covers again. Michael finally left me and went to work. And in that silence and stillness, it happened...I had an awakening with the realization that I am strong and this is absurd...and then there was a true physical pain and then relief resulting from a break in my being. And by break, I mean in a good way, like I broke the chains of my fear. I looked around my room and felt suffocated and said...we are going to sell this house and move to the mountains! And I thought about my job and said I am quitting and making room for my healing and for my new life in the mountains! And I thought about what truly mattered to me and asked myself why am I waiting for a cancer-free diagnosis to realize it? It was the most freeing moment of my life, and I'll never forget it.

I can honestly say, with out pretense, or the desire to make you feel more comfortable about my situation...I AM doing well. Better than ever really. My path right now is going to be tough, but I am attacking it from a different angle. And I have prolonged moments lately of knowing I am going to beat this and live for many many years. I have never really ever truly believed it--because the fear gripped me--like a holding my breath kind of fear. I am missing out on the normal experiences of my life that I have grown accustomed to, but I am filling that up with new experiences that feel really good.

I want you to read Patty's posts about my experiences and about my next months of treatment. She has been intimately involved in this process--has been all along, and can seem to speak the heart speak so much better than I can...

Cashing in Chips

Travels in a Stone Canoe

Since our news in January, Michael and I have completed a 21-day Standard Process Purification program, I've been to Florida to swim with the manatees and be with those I love dearly, and then to Mexico for a dance teacher training workshop where I met the most amazing people, danced my heart and soul out, and released and received such amazing energy in the beautiful bosom of the Mexican rainforest. I came home to our second retreat at Landsong with my women's circle. I found my power animal on the Shamanic Journey...the snake, and I love her, and she's already given me so many lessons. Which leads me to now, on my journey still, with my sweet husband (who has bought himself a new motorcycle---and totally deserves it, and says he bought it for us so we can ride together :)) and lovable doggies, and juicing!!! What a journey. I know now it always won't be easy, but it will be meaningful.

I would like to share this song with you. It has filled my heart up full (thanks Dan), and allowed me to share with others in the dance. I ask you to close your eyes and just listen. Move if you want to, even get up off the chair and dance your heart speak. I promise, it will make you feel better.

these boots are made for walking...

2012-01-04T18:04:00.000-05:00

I left Kaiser at 10:30 am, and my doctor had contacted me by 12:30 with the results. What a blessing he is to our family. I am so grateful that this painful thing called scanxiety only lasted 2 hours! And the best part is that I was with my mother, father, brothers and husband--all about to sit down for lunch when we found out. It couldn't have been planned more perfectly.

The news that was delivered however wasn't what we'd hoped for. But, it could definitely have been worse. Back in September the scan showed suspicious nodes. I had a handful of nodes that lit up lightly, and were small. We had suspicions that one might have been my thymus gland again. The doctors decided to watch and wait.

Today all the nodes that lit up before were still there, and were slightly larger with equal or slightly greater SUV. I also have one more node that has appeared that is 1cm x 1 cm. The largest one is 3 cm. The greatest SUV is 10, with many ranging from 4-10. I know this doesn't mean much to most of you, but in cancer speak, size and SUV are what matter. I have no metasteses, and all my other organs look great and nothing in my bones. The final comment from the radiologist is that I have mild progression of FGD-avid disease.

My oncologist contacted my specialist doctor and my surgeon and they all agreed that we still shouldn't do any treatment until we biopsy to see what we are even dealing with. There are reports of misleading PET scans. There are reactive lymphnodes after something like what I went through. It could also be recurrence. They also said I could continue to watch and wait.

I haven't written anything on this blog in three months save last night. I went way inward, and have explored a whole new realm of healing. It is hard to write about these experiences, but I would like to let you know that I have been doing intense energy work sessions with different healers. What I have learned from this is that no matter what, this will be in my life going forward and always. I look forward to delving even more deeply into this medicine.

As for what next. ... we are only t plus 5 hours from hearing the news. So we don't know what next. I might still be a bit numb. But we are all doing okay. We have each other. We have you. We have options. We are hopeful. We will beat this...the journey is just not over yet.

I truly and deeply appreciate your emails, texts, calls, fb comments, blog comments. You really know how to make me feel loved. And I love you.

And I'll leave you with a quote Augustin sent to me today:

"The world is full of suffering. It is also filled with overcoming it."
--Helen Keller

And here is one that my friend Heather posted on her wall today. I don't know the author, but I like it:
"Stop holding on to what hurts and make room for what feels good."

Don't think about all those things you fear...

2012-01-03T21:56:00.000-05:00

PET scan tomorrow morning. Tears are streaming easily today in anticipation, fear and worry. But these three months of our watch and wait game have given me so much out of this precious life. I am grateful for the love of my family and friends. I am grateful for being able to tap into the stream of life, this energy that heals, loves, runs through us all. I am grateful for my meditation. I am grateful for those who have helped me along the way. I hope to pay it back with all that I am learning. I hope that I can help make a difference someday.

So here's to belly breathing, and sleeping tiger, and mantras, and adventure, and dreams.

...just be glad to be here

Watch and Wait

2011-09-29T23:42:00.002-04:00

Less than a week ago...Saturday to be exact, I had waves of emotion flood through me like shock waves as I rode on the back of a motorcycle with the sun setting over the fall sky, arms wrapped around my love. I held on tight, and the wind was sharp against my helmet...the stars just beginning to come out. We'd just spent the day on a rented motorcycle touring...first stop... a fall festival filled with laughter and memories, and then on to a fundraiser for a man who has sacrificed so much for our freedom. The outpouring of love that came from the community for him totally overwhelmed me and gave my so much hope for this human race.

As we rode home that night the sensation came to me again that if I died tomorrow I would take comfort in knowing that I have lived a good life--a life worth living. These 35 years have blessed me with amazing family, friends, and experiences that leave me feeling fulfilled. I've had these waves of realization a lot lately, joy I would call it...JOY. And joy was something that I thought I'd lost the months following my stem cell transplant. What a gift to feel that again.

That night...on that bike, as I rode home embracing Michael as I trusted my life with him--those waves of joy would come. I felt such a deep love for him. A love so deep that it almost hurt. And in those moments...it was like he knew what I was thinking and he would lift his arm from the handle bar and reach around and touch my leg in a loving embrace. I could hardly believe it...and then...I could. We are connected.

So we come around to today. I get the results of my PET scan and they tell me that there are suspicious nodes lighting up. They are in the same place as before. We need to do a biopsy to confirm if it is cancer.

I was with my parent's for the bad news...delivered yet again by my wonderfully kind and supportive oncologist.

And so we follow up with the research again and we see that PET scans can be misleading and in many cases give alarm when alarm isn't necessary. But then again, maybe it is real...we just don't know.

So my options are to watch and wait, or to biopsy.

When faced with these options, we sit, and we have to listen to what feels right. And what feels right is that we don't want to go in again. I don't want another surgery, some more drugs, a hospital stay, and all that drama. I want to just live my life in a full way. And not in a hospital.

So we will wait. We will scan again in 3 months and decide what to do then.

Tonight Michael and I cooked kale and radishes from our garden and warmed up a soup that Michael made for me...okra, turkey, sweet potatoes and (I say love....). We had wine and watched Modern Family.

He, out of no where, played for me a song and we danced. I was stunned because it was one of my favorite songs of old and there he was, just playing it for us to dance to ... take a listen and smile, and I hope you dance...

Another song that came on later and that brought back such strong memories was this song by Thievery Corporation. It was a song that Michaelle and I performed to way back when at the 40 Watt in Athens with snakes. That was a pivotal time in my life and it was nice to live that memory again...

And then finally, as I head to bed tonight, this song plays...a song that I treasure, a remake that give honor to its creator...

I feel amazingly calm. Like all this work I have been doing all these months has amounted to something good. I am learning how to really move to that part in myself that is grounded and connected. I am a fighter and I don't plan on going anywhere soon. I have so much more of life to live!!

So good night to you all. I love you. And I am so happy that you are in my life. You make my life better. So thank you. With total sincerity, I thank you. Without you, (and you know who you are!!!!) I wouldn't be here today.

Saying Goodbye

2011-07-24T21:18:00.003-04:00

http://news.nationalgeographic.com/news/2006/06/060619-rainbow-fire.html

Well folks, I last left you with the good news that I was cancer-free. I was now set free from the constraints of quarantine, and I was set to getting on with my life. I have certainly taken advantage of this new found freedom. The scare of relapse changed something in me. Before I even heard of the news that I was indeed in remission, I had truly surrendered to the fact that this life is fleeting, and I needed to take a real quick look at what matters. What rose to the top were two things. Community and Divine, and the common thread that weaves those two together is LOVE.

While I had been focusing most of my energies on the divine these past months, I found my past weeks swinging towards the community end of "that which matters." Patty spoke it perfectly, and with comfort, when she said that my life was swinging in the pendulum. Before my pendulum was swinging high on the divine, healing energies end, and then now, when constraints were lifted, I swung high on the community end. My life has been completely engulfed in enjoying others and landing back on this earth...laughter, love, togetherness, work, craziness, and just living...in...the...moment.....While I take great joy in that life, I do look forward to swinging back into balance...something I haven't had for quite awhile.

I went from 0-60 in seconds. And I like it, but it seems like a whole lot to process. In fact, this past two years seems like a whole lot to process. And it is weighing heavily on this sweet soul right now.

But the main reason that I am getting on here to write is to send my respects and deepest love to my friend Laura's family. I met Laura within weeks after my diagnosis. She had been in this battle for awhile and always had the best attitude. There were several times when I thought she truly was going to beat the cancer in her body, so it is hard for me to see that it has overtaken her. Her attitude and spark were admirable and got me by several hard days. I have lost so many friend in the past two years, sometimes it is just too painful to bear. But in the same breath, I have peace that she is not suffering anymore. My tears are streaming, and sometimes I just don't know how to make sense out of this life. In the end, I am happy that I had this time I had with Laura. She brought lots of light to my life. My hope is for happiness for her children and strength in what is to come. I have a strong feeling that they already know how awesome she was, because she was an amazing mother...someone who brought light and happiness in a dark time, yet still remained true to what was real. I will miss Laura in a way like no other--losing life to cancer hits very close to home. But I am ever grateful for knowing her in the time that I did.

So if I can ask one thing of you right now...please look around you and see who is in your life. Take a real good look at them and remember that their smile, their love, their words, their way....their actions are what you remember and what you love. And that is what matters. So make it good, because you never know when it will be taken away from you.

Loving you all. Deeply.

Living and Loving

2011-06-23T10:01:00.003-04:00

This was taken by dad mere minutes after hearing the good news!

Well, I think most of you know by now, I am officially considered cancer-free!! And oh boy, what a road we've taken to get here--almost two years of it! It has been a 10 days since I found out that my stem-cell transplant might not have worked...they found "suspicious nodes" lighting up. This past 10 days has been one wild ride I tell you! I have faced my own mortality directly in the face and had to sit with that discomfort until it became comfortable. I was torn in a million pieces most of the time, and spent much of it trying to distract myself. And you out there, you reading, you sending me love, you, my friends and family, have helped keep me alive and going during this crazy time. And then I have you to rejoice with when we hear good news like we heard yesterday. It feels amazing. Better than amazing. Like I truly have been reborn.

We were surprised to actually get the results yesterday. I already had a pre-arranged appointment with my bone marrow doc scheduled for yesterday to go over the results of my 100 days post test. So, with surgery Monday, we didn't think that the results of the biopsy would be back in time for the appointment. Apparently my bone marrow doc has pull with the pathologist at the hospital and not only did the pathologist have time to read the biopsy, he had time to sit down with my doc and the PA and go over the slides in detail and really make sure/explain that the biopsy showed no signs of cancer. Now, there indeed was a mass that lit up, and one that the doc took out, but what we've found is that it is an enlarged thymus gland. The thymus gland is important for your immune system, but apparently atrophies in all humans by about the age of 15. It has happened in some cases of Hodgkins after chemo that the thymus gland is re-ignited and I guess that is what happened to me! My immune system was raring to go!!

This whole week has been surreal. We've received bad news after bad news for so long that we all went into this appointment somber and bracing ourselves for what we could possibly hear again. Fact is, if this came back with a positive biopsy, the disease is considered incurable, because of the short duration on relapse, and I enter into a world of clinical trials and unknowns. This is hard news to swallow. And it does happen to people.

So you can imagine the emotion in the room when my PA, the most wonderful PA ever, didn't even bother with the niceties and got immediately down to the real info....that I had a PET last week, that it showed suspicious nodes, that I had a biopsy, and that the biopsy showed NO CANCER!!! Unbelievable. There were tears, I lost it of course. Even the PA was tearing up. There aren't words to describe the emotions. LOVE LOVE LOVE was the biggest, and I was there with mom, dad and Michael, and we FELT it. Deeply, strongly.

The doctor comes in, and of course squelches a bit of our happiness, but even that was hard for him to do. He said that the surgeon only got 2/3 of the mass...so there could still be cancer there. But there was a 95% chance that that isn't so. I also mentioned to him that really we can't exhale completely for 5 years, and he said true, but if I relapse again year 2-5 I have a much greater chance of cure than if I did now.

So we came back to our home...and mom, dad, Michael and I sat on our porch, like we did just over a week ago. Except this time, instead of having the breath knocked out of us depressed, we were giddy, laughing, crying, loving, and letting the world know that I am cancer-free!!! And then a storm rolled in and we basked in the loveliness that is the summer thunderstorm. Yes, let it rain, let it wash away your fears.

I had bought tickets over a month ago to see Chris Isaak at Chastain Park last night. I had forgotten I had done so when all this craziness was swelling around us. And then on Tuesday I get an e-mail event reminder. I knew that if I hadn't gotten the results we were wanting, we probably wouldn't have gone. I am still recovering from surgery too. But, with this good news, we couldn't help but pack a picnic, put on some rain gear and head to the park, one of our favorite places to go. (for those of you who don't know I absolutely ADORE summer. LOVE it. It is the happiest time of year for me.) So we got to go out, smile, laugh, love and enjoy living another summer night together. It was incredibly romantic. The best part of the night was when he sang Elvis's "I can't help falling in love with you". It was raining, we were cuddled under the umbrella, singing to each other. It was so so nice. We exhaled...

So my biggest love to you all. Thank you for your outpouring of love and sharing this time with us. I do plan to respond to you all on FB, but for now I am going to pack up and head TO WORK! First time in 4 months. I also am sending buckets of love to my dear sister Dawn who is finishing up her own struggles. Dawn, you are going to ROCK it!!! And will be done in time to return to your beautiful kids at school. We are going to be rocking on a porch swing 50 years from now together talking about the good ole days!!

post surgery

2011-06-21T21:40:00.000-04:00

Hi all. Feeling a bit drained, so I am not going to spend much time writing, but I wanted to let you all know that I made it through surgery okay. They kept me overnight with a chest tube to drain the fluids that collected in my thoracic cavity. Fortunately I checked out fine today and they let me go home--tube removed. Now I am recovering at home from another painful surgery. The good news is that we did this last year and know more now what to expect. We know that the pain will eventually go away and I will breathe normally again.

We don't have the results of the biopsy and should know by next Monday at the latest. We are keeping hopes alive that this is just a false positive. The doctor said he removed "unusual tissue" but it wasn't like a swollen lymph node. It was more like thickened lymph tissue. I hope this is a good thing.

The night before the surgery I went and read all the comments you all left me on my previous blog and I can't tell you how much that helped me. You all are so wise, and kind, and loving. And I thank you from the bottom of my heart!

Alright, well, sweet dreams. I'll keep you posted!

Let it Rain

2011-06-15T22:27:00.001-04:00

So here I sit, another rainy summer (almost) night in Georgia. The rain feels like a glorious blessing upon the hard, hot earth around us. The lightening and thunder are a magical play between beauty and rage. As I sit here on my porch, soaking it in, I can't help but feel content, safe, refreshed, cozy, loved. There is something about a summer storm that stirs me.

First of all, I'd like to put out a huge thank you to all of you who have sent your love my way. I have no words to describe how much it means to me that you spent the time to spread your love and open your heart in such a difficult time. I need your love, and you totally delivered. So I thank you from the bottom of my heart. Goodness, my words can't even express my gratitude.

The news I heard on Tuesday knocked the breath out of me.

"Possible recurrence"

"Suspicious nodes"

"this is shitty shitty news"

"remember, you are a survivor"

By some sort of grace...people say the grace of god....which, in this instance makes me believe, I was with my aunt Becky when Dr. Hamrick called me. I was with Becky, she's a therapist/energy worker, because I knew that the waiting game excruciating. I knew that she could help me move the energy that was stress, that was pain, that was fear. We worked for 45 minutes on this before I even got the call. And then, the phone rang, and I heard the news, and Becky held my hand tight and gave me confidence to keep listening. Dr. Hamrick delivered bad news again, how many times now is this??? And again, he imbued kindness, and compassion, and courage and hope. I still can't believe how much this meant to me, but his words, and his way...I carry with me. He is a good doctor. Becky is an amazing aunt. She held me and sang to me and let me cry. She even cancelled her next clients because she didn't want to leave me alone. Expansive love.

When I hung up the phone with my doctor I experienced a rage like I have never had before. I screamed like I had gone haywire. I pounded pillows. I cried. I yelled. Until I felt hollow.

And I sat with that for quite awhile.

Michael and my mom came to get me from Becky's. Dad came later and we sat on our front porch for a long time processing, and being together, and trying to laugh.

So the news...there are three areas that are lighting up on the PET scan, all in the same area as I have have had before, in the mediastinium (heart area). Two are very very small lymph nodes that are lighting up very dimly, barely above background. The other is sort of a sheath that is above my heart, but in front of my thymus. Dr. Hamrick consulted with Dr. Bashey, my bone marrow doc, and they decided that before we do anything, we need to do a biopsy of the area to confirm that there is even anything to worry about.

Patty sent the most elevating e-mail I've read in a long time listing several scientific articles talking about the incidence of false positives on PET scan with lymphomas after treatment. From reading, it looks like we somewhere like a 40% chance that there is a false positive. Wouldn't that be lovely!!??

Last night Patty and Mary came over for meditation. I was present, kind of. It was nice to have them there. Our time together has been solid, and meaningful, and a transformation. Where this goes, we don't know, but it feels deep, and real, and magical. Michael cuddled me to sleep last night. And this morning, I woke with a face swollen from crying like several bees had stung my face.

Mom picked me up at 7am, like old times! And we headed to Northside Hospital to meet with the surgeon. I am scheduled for a biopsy on Monday morning. So we hold our breaths and wait. ... again...

I also had an appointment with the pulmonologist today because I failed my preliminary test with at the oncologist on Monday. Back in January when I was tested I had perfect lung function, and now I am at 75%. The good news is that it is repairable, and I just need to exercise the lungs and the body.

Mom has been keeping me company, and I really have enjoyed the perks of being 100 days past transplant. I've enjoyed salads, shopping, walking around without a mask, and even enjoying moments where I take off my head scarf without caring what anyone else thinks.

So this past day has left me sitting in a depression that seems hard to shake. But it seems as if it is not coming from fear of the future, nor out of sadness or worry even. What I feel is this. I feel 1. angry, angry that I even have to deal with this, again. 2. jealous, jealous that other's have been healed from this and I keep struggling, (this is the "good cancer" after all), and 3. like a failure, a failure because I feel like if you just work hard enough, you can succeed (remember, I am an A student). We've tried so many things, and still, we have to sit with this.

And just stating that makes me even more pissed off because all three of those statements are disgusting. One, anger...well, this is life sweetheart, and shit happens. Look at all the people suffering right now. What makes you so special? Two, jealousy? I should be happy for the people who have survived and thrived, and I AM, but why can't it be me too? And three? well, everyone says this isn't your fault. And yes, okay, it isn't. Let's believe it.

So speaking my mind does ease my suffering. And in the words of my mother and husband....stop worrying about stuff that you don't even know to be true. It is true that we don't know what is going on. We need more information. So yes, that does bring comfort.

Where my mind goes to when it eases away from the suffering is that I can just imagine myself a month, or two months, or a year from now thinking how I've felt as recently as a week ago. That this journey has been one that has been tough, but has been one of the best things that could have happened to me. I have a richness to my life that wasn't there before, in mind, body and spirit. I have made connections with people, myself, and the divine that trump any experience thus far. I have soaked in the deliciousness of love, of living in the moment, and of appreciation and gratitude. And I just hope that the lessons going forward will enrich these facets even more. I believe they will.

So on with living. I've decided that if I am not in treatment I am going to continue living my life FOR the living, and not put plans on hold because of the "what ifs". Michael deserves it, and so do I.

Again, you all totally make the world go round. Thanks for your love, for your kind words, for your support, your hope, and for just being you! I look forward to many many more years with you.

Let It Rain

Checking In

2011-05-28T09:23:00.000-04:00

Hi all! I just wanted to spend a moment to check in here with you all. I know that when I go silent for awhile you start to worry, so thank you for your worries and thoughts. But the good news is I am doing just fine!

We are back in the waiting game however (PET scan in two weeks!), and we all know what that means. This time I feel better equipped to deal with it as I have been spending most of my time working on ways to deal with it, such as qigong practice, meditation practice, walking, and seeing energy healers.

So I am feeling more solid going into this next PET scan and there are times that I truly believe and feel that I am cancer-free, and that melts away all the worry. These thoughts of believing I am cancer-free are very new to me as I have never been able to truly go there through this whole journey--through what I think? fear? the fact that I wasn't? my spiritual practice wasn't as strong? But I do have tastes of this feeling and it feels great, and solid. So I am going to sit with that loveliness when it comes, and when fear sets in, which it does, I am going just keep going.

So PET scan is on Monday, June 13th. That will be day 101 +. I will also have blood work and another bone marrow biopsy (yuck!). The Cook family is coming to visit the weekend before, so I am thrilled to have that distraction, let alone a weekend filled with laughter and love.

Once I get clean PET results, which I will!, I will go back to work! I will also be able to eat raw veggies again, and go shopping for myself in PUBLIC!! So we are on the countdown now to a more normal life. Just a little over two weeks folks! And to put it in perspective, I've been in quarantine since Feburary 1st. That is 4 months! And I've been on this phase of the Healing Journey since the beginning of December. So we are all ready for some normalcy :) I never really knew until this experience how much I enjoy/need human interaction.

In the meantime, I will be thinking so strongly with my heart and soul of my dear friends who are really struggling with their own journey. My heart breaks when I think of all the friends I've lost, and I know the story isn't over. We live and we die, yet the dying part can be so painful for those left here living.

So let's all enjoy each moment and love as much as possible because we all never know when we will take our last breath.

Love you!

The Butterfly

2011-05-05T11:41:00.002-04:00

Okay, here we go. I am sitting down to write this blog post. I know it has been forever since I've updated and I've been wondering why it has been so difficult for me to get here and tell you how things are going. And, I guess what it comes down to is that I am still trying to figure that out for myself, so how can I tell you? I think people, when they ask me how I am doing, are really wondering how's my energy? how's my nausea? etc. And I can answer all those questions, but what is really going on with me is so multi-faceted that I find lack of words to truly explain it (and I wonder how many people really care to hear it). There is the surface layer which encompasses the physical well-being, there is the mental/emotional layer that is still processing what I just went through--good and bad, there is the intellectual layer that has spent hours pouring over scientific literature trying to make sense of my disease, treatment and recovery, there is the social layer with me dabbling back into my circles and wondering how I can relate back to my friends when our lives have taken such different paths, and then there is the spiritual layer that has deeply seated into my psyche yet yearns for more answers and experiences. Now add to that the mixed bag of emotions that comes with the upcoming PET/CT scan, bone marrow biopsy and lab tests that marks my 100 days post transplant mark (38 days from now). Excitement for the 100 day restrictions to be lifted and life getting back to more normalcy, nervousness for the results.... SO---lot's going on in this ole noggin. And outside of the noggin for that matter...(I am trying to get out of there as much as possible!!!)

Yesterday was my 2 month anniversary of my "rebirth." I spent it outside most of the day, in the sunshine, with the breeze blowing through my head scarf :p. I read a lot, laughed, enjoyed the company of my parents and got to people watch. I am not allowed in public, but I did sit outside in a public park at a coffee shop. I, for all intents and purposes, can say that I am doing pretty well. That is the down and dirty. But this whole experience has left a deep impact on me and it is going to take years, if not my lifetime to sift through the pages. I am changed, am changing, and am also the same ole Evie. My eyebrows are even starting to grow back!

Gosh, it's crazy....I have SO much to say, I am tearing up just writing this and the fullness of content I could be relating to you. But I just don't have it in me right now to share. I hope I do capture these feelings, at least for me. Maybe by writing it will help me sift it out. But for now I think I'll just leave you with some photos of me at different points in the journey. At the onset I wanted to take a picture of me every week to mark progress, but in the trenches, I really had no care in the world to do anything but survive each day. So here's what I got....

This is the morning of discharge after 8 days in the hospital. My mouth sores had healed by then, but you can see my mouth is still a bit swollen. I look grey and pasty. But, it just a few short minutes after this photo was taken I ate a bowl of cheerios...the first solid food I had in 8 days.

This is the same morning, I turned around to get a picture with the rising sun on my face. I wanted you to see the IV pole that at one point had something running into all three of my catheter lines. That was a noisy sucker, but kept me alive. Those drugs that were pumped into me cost $48,000 over the 8 days.

This is me on the day I got my catheter removed. In retrospect I am surprised I was smiling as I had just been through an incredibly painful procedure that was supposed to "not hurt at all." I was given no drugs, and there were complications with getting the catheter out. But, like so many times in these past two years, I was saved by the kindness of strangers. The nurse that was assisting let me squeeze the heck out of his hand and he had a large belly that was pressed up against my shaking body that oddly felt comforting.

This is me on the land, and boy can I tell you how fast my recovery moves when I am out there? This is halfway up the mountain that I've hiked now several times since transplant. It is invigorating and makes me feel alive. That earth is healing.

Mom took this of me. I was really in the middle of fixing my hat, but I love this picture because it reminds me of how I feel when I am doing qigong--like I am washing bliss energy from the earth and the heavens all through my body as white light shines down upon me.

Happy happy happy. Me on the land, resting during a 4.5 hour hike!!

In Love

One weekend when we were up in the mountains, we laid a blanket down by the waterfall and just soaked in the beauty of it all. This was the view I looked up at for almost an hour. It was a lovely day.

Day +30

2011-04-04T18:45:00.003-04:00

30 days. It is amazing how so much yet so little can happen in 30 days. I guess it is all in how you look at it.

These 30 days have taught me that I must learn patience or else I suffer. These 30 days have taught me that I must learn to live in the moment and not worry for the future or else I suffer. These 30 days have taught me that I need to give up control over my recovery or else I suffer. These 30 days have taught me that I can cry and get angry and depressed and it is okay, and it is only when I resist, I suffer.

These 30 days have also taught me that I can find joy that transcends the physical body if I just listen. These 30 days have taught me that I am strong despite my second guessing. These 30 days have taught me abundant and unconditional love. These 30 days have taught me that my soul is fueled by mother nature and by the connections I have with those around me. These 30 days have taught me joy in simple things, which brings intense gratitude.

These 30 days have taught me that life is hard, but there is always someone else it is harder for, so count my blessings. These 30 days have also taught me that despite everything I and my family have had to go through I sometimes feel like the luckiest person alive.

.....and then, sometimes within the blink of an eye, I find myself cycling back to having to learn those first lesson's again.....

This was taken on New Years Day 2011. Michael and I had a ceremony on the land under the grand Hemlock tree to set intentions for the new year and to ask to let go of what no longer serves us. It was a special day and I call on it often for strength

---------

I know I've been silent here. I've also been silent on e-mail's and I apologize.

Like I said in my first sentence, seems like so much, yet so little has happened this past month. On the so much end of things, I am doing so well at the bone marrow clinic, that I get my catheter taken out on Thursday (the three-pronged port they surgically put in my chest that has kept me from having a proper bath in 2 months...). Next Wednesday, the 13th I have my discharge appointment from the bone marrow clinic and will go back to being followed by my regular oncologist!! Which means I can drive again (even though I can't go anywhere in public), and I won't have to be babysat 24/7!! I am being discharged 10 days earlier than expected, so we are thrilled about this. I am still not allowed to be in public places until 100 days post transplant (June). uugh...

Because of my progress, I haven't had to go into the clinic the past two weekends so we headed up to the mountains to get healing of the best kind there. Relatives visited both weekends and I felt the most alive I've felt in two months while there. I hiked the mountains, and even though it tired me out, I did it and it gave me hope for my body.

Other victories...I am eating better now, even though my taste buds are still making most things taste either bland, or a hint of the food flavor laced with vinegar, or absolutely disgusting. I am taking my supplements which I am hoping will help in the recovery process.

I am napping less (really not at all), and generally feel my energy level slowly inching back. I am walking every day. Nausea is improving, yet still ever present. I feel like once I can get this under wraps my motivation for doing anything will get better. I never realized how debilitating nausea was.

Now for the slow part of this past 30 days. Well, it really can all be summed up into one thought...I am ready to be healed. I am ready to rejoin the world, feel healthy, get on with my life. I am ready to be scanned again and hear the doctor say you are in remission. And the fact is, I won't get my wish right away. I have to wait. I have to go through these next months in seclusion and heal. It takes time. It takes time. It takes time. But I am hoping that with each minute I'll get a little better so that soon my brain will ask me for books to read, and my soul will crave meditation and qi gong and I will remember what it feels like to tap into the energy of the heartbeat of the universe, and my creativity will blossom and I will do all these things I have in my head to do that are merely being held captive by my fatigue, poor attention and laziness. I welcome dreams of healing retreats and helping others. The chemo crystals just need to cracked and be set free. The good news is, there is movement, and that is the best I can hope for right now, right?

Okay, and so as long as I am sharing all this....I've also come to realize that I am living in a totally selfish world right now. Because of my seclusion and the intensity of my treatment and my caregiving, everything revolves around me, and with that realization I almost got sick to my stomach. All of our conversations surround how I feel, what is next, what are my counts, who will watch me, what do I need, etc. etc. etc....Even this blog perpetuates it. I am stuck in an Eve world and am too fatigued to get out of my head and out into the world (even from seclusion). That was a big awakening and I am hoping these coming weeks will give me strength and mental focus to shift the course of this ship. I think that is why I have enjoyed the small amount of visitors I have had, and the weekends with relatives at the cabin. I get to get out of my world.

Well, that's what I have for you today. Happy day 30! I am happy to be alive. And I have a lot of life left in this ole gal. It is a beautiful spring day today, and our neighborhood is bursting with color. All the windows are open and I am sitting here with my sweetie. This moment is a good one. Here's hoping you all a good moment...this one, and the next, and the next...

It's Springtime!

2011-03-21T16:34:00.000-04:00

Brian Cole made this for me!! It is called "Stem Cell" Notice the jail cell he made for the stems. Brilliant!!!

We made it through the winter folks! I remembered thinking way back in early December when I started this whole process that I was grateful that I'd be going through this during the winter, and how wonderful it was that I would be coming out of it in the Spring. Spring is a time of rebirth and growth. It makes me happy. And that is just the kind of medicine I need right now. I need to remember though that Spring means growth...it doesn't mean grown.

Mom has been keeping a journal on her calendar of everything we've gone through since starting this journey at the bone marrow clinic in January. She read it to me today as I was lying on the couch completely exhausted and wondering if this was ever going to end. After she finished reading off every day for the past two months I thought, WOW, we have been through SO MUCH. It is really unbelievable. She's even been noting things like if I've walked for the day, or if I've gotten blood products, or even if I've done a happy dance, or worn a bra (finally put one on on day 8 at the hospital...we saw it as progress....), or felt an interest in playing words with friends. (She is probably going to write down that I wrote a blog post today, because I haven't felt like doing this in a long time).

So, let's start with the good news. I am out of the hospital and my mouth sores are all healed. Hallelujah!! I haven't been on pain meds since last Friday. My labs look better than they have looked in a couple of months!!! My absolute neutrophils, a sign of how well my body is engrafting the stem cells, look great, within normal range. All of my red blood cell markers are normal...meaning I am not anemic...something I have been since starting ICE back in December!!! My white blood cells are hanging in there....waivering between normal and just barely low. Platelets are normal and growing in number everyday. My liver and kidney function are normal. The clinic has decreased my IV fluid to one bag instead of two, meaning 3-hours less in this clinic everyday. The best news is that we hear I might start going to every other day starting as early as this Friday!!!

So we are making good improvements.

I need to keep reminding myself of all of these improvements when I start to get down about the things that aren't moving as quickly as I'd like. Namely I have no energy. Zip, zero, nada, none. I sleep all the time and when I am not sleeping I feel like doing nothing else. I am walking a mile every single day, albeit very slowly. I've lost 12 pounds since transplant, and while you think this big lady would be jumping for joy, I'd be much happier if it didn't leave me feeling like a shell of a person. My face is sunken in, dark circles under my eyes, cracked, dry lips, no eyebrows or eyelashes. I look rough, and not healthy at all. I started to tear up when I got out of the bath the other day seeing how bad I looked, and Michael told me I looked beautiful. And I cried and hugged him more. And then he said you should have seen yourself last week, you look much better than you did then! haha.

I am not eating very much. My appetite is really poor, and nausea is ever present. Mom and Michael are keeping me eating at least some good protein shakes with lots of nutrients supplemented in them. Michael put a bunch of nuts in my most recent one which was a good idea to get some good protein and fat. They are bribing me...saying if I drink my shake then they will give me a foot massage. And that works :) I am eating bone broths made with love by Pat and Becky whom I am forever grateful for. Mom meticulously froze in individual portion sizes the food that the chef made for me the week of the transplant, so I am trying to get some of that food down, although solid food is a bit cumbersome and I don't have much interest in it.

So I've had a few pity parties the past couple of days about why me and blah blah blah but I cry it out and then move on.

On a lighter note...I am typing this at the clinic and in walks my friend who I met when I first got here. She is a very similar case to me....Hodgkins in the same areas as me, 10 ABVD, remission, and then relapse within 3 months just like me. She is about 35 days ahead of me and today is her discharge day!! She is looking GREAT and says she feels better than she's felt in as long as she can remember. I needed to see that encouragement today. And, I just got my labs back from today and everything looks even better than yesterday. WBCs, RBCs, hemoglobin, hematocrit, platelets, neutrophils, liver, kidney all within NORMAL range!! yippie! So we have hope. My body will catch up....

And lastly, I never posted about my stay in the hospital, but I wanted to send a bundle of thanks to those of you who made the extra effort to make me feel loved. To my visitors, you brightened my day, thank you Linda, Michaelle, Becky, Patty, and Karen and Brian. To all those who e-mailed me, thank you, your letters were read and I hope you forgive me for not writing back. To Metametrix, Amanda and Mark, Bonnie and Rob, Karen and Brian, Deana and Milburn for sweet gifts to lighten the soul. To my women's circle for skyping me in, what a bright shining light in my day. Rin, Chuck and Dawn, your daily check-ins and love, and skyping were so nice and made me feel so loved. I can't believe I lucked out to have such great inlaws. And to my loving parent's who visited, cared for me, loved me, walked with me, kept me company, bathed me (mom), you are the best. And last but certainly not least, my dear sweet husband who suffered three overnight stays with me despite the incessant beeping of the pumps, the constant interruptions, and the hourly trips to the bathroom, you are my light, my love. You worked all day, and stayed with me every night. You have proved time and time again you are in this with me for the long haul and I sometimes feel like I am the luckiest person on the planet that I found you to walk through life with. I look forward to happier times when we can frolic and play and live life to the fullest.

Karen and Brian's visit :)

Day + 11

2011-03-15T23:03:00.003-04:00

Hi all. Me checking in with you all to let you know I am doing better every day. I've been trying to get a post in for two days now and I realize I just don't have the focus I need right now to really put into the words I want to use to describe this past weeks experience because it certainly has been on heck of an experience, unlike anything I have ever lived before.

So what I will leave you with is a mandala picture I worked on this week. It is from a book called Coloring Mandalas by Susanne Fincher and gifted to me by my dear friend Lori. Susanne explains different archetypal stages of personal growth, and pairs them with mandalas inspired by different cultures. The one I chose for this week was from Stage 12, Transcendent Ecstasy, in which you experience a shift from chaos to transformative wisdom, a reordering of all that was broken. This stage is a coming together of all that went before, a time of profound joy, when you feel perfectly in step with the cosmic dance.

...yes, I like this. ... although I can't say I am basking in profound joy as the physicalities of the body are still very present. But I do feel connected to the cosmic dance.

So I will be discharged from the hospital either tomorrow or Thursday. And then we keep on keepin' on!!

Eve, checking in!

2011-03-11T12:22:00.001-05:00

Misty moisty second night--view from my room. Not bad!

Here's a big shout out thank you to mom for taking on blog responsibilities this past week. As you can see, we've been through some stuff, so it was nice of her to keep you informed. I appreciate all of your e-mails and concerns, and I apologize for not getting back to you sooner (or if at all yet).

So in a nutshell I have to say I am doing as well as can be expected (even better actually). We were prepared with the knowledge that I might be admitted for fevers and mucositis (mouth sores). And indeed I was. But what I was not prepared for was having the hospital stay feel like such a blessing. I have a very comfortable, clean, room with a great view. The hospital staff is very nice and are really encouraging that I will be over this hard part soon. Because of the way I've been feeling this past week, I am intensely grateful that I can be here at the hospital and not having to figure all this out at home while still making the 6 am trekks to the clinic for the necessary IVs.

long day...time for rest!

There was a bit of a tough landing here on Tuesday night with vomiting right at shift change. It took awhile for everyone to get things together and realize that I simply can't swallow hardly anything. So the had to get all my meds switched over from pills to liquid (still not great) or, even better, IV. It also took awhile to get the ideal nausea med schedule figured out, but now it is like clockwork, and my team here is awesome. So nausea is controlled.

It then took us really about until Thursday late-morning for me to get this pain pump thing figured out on dosage, etc. My goal is to get SOMETHING caloric down, without feeling totally drugged and out of it (I hate that feeling). I don't mind a little bit of standing pain if it means that I am not zonkered and don't have to eat.

Now, to those nutritionists out there, please plug your ears as what I am about to say will make you cringe. Believe me, it does me too. My goal for today is to get 3 Ensures down the gullet. Wednesday I managed to get one down, and yesterday I had a butterscotch pudding cup and a scoop and a half of (ORGANIC, hahahah) ice cream that Michael brought for me. Yesterday I even finished an entire glass of water (a first since I have been here).

I know what you are thinking....we have access to all of these healthy shakes and protein powders, etc. And yes, we do, but some nutrients in these things are like pouring battery acid on open wounds. Mom is bringing a plain protein powder shake today with a frozen banana and we'll see how that goes down (I hope it is yummy). She's tried different versions and so far we haven't found a winner.

You can imagine my disappointment with all of this food/nutrient issue, when I've been saying from the start that this rebirth period is probably the most important time for good nutrition. We've even hired a fantastic chef because I felt it is so important. But what this is teaching me is that I simply have to let go of stressing about this. Everyone tells me my mouth will be better in 2-5 more days. And when I can settle into this routine here at the hospital without resistance to or depression or guilt about the food then my life is much happier here.

I am doing vit D dops and am also opening up capsules of vit E and rubbing it into the sores. My mouth was regime is brings the biggest relief from the pain that last for about 10 minutes.

So I have settled in quite nicely here. I have found the routine that works for me. I am comfortable, and feel well cared for. Mom and I walked 2/3 of a mile on Wednesday, and a whole mile yesterday (after blood products!!) around the unit yesterday. Mom also gave me a sponge bath yesterday that felt divine, and we laughed about the rebirth theme again...

Michael has been keeping me company at nights. He spent the first two nights over night with me, but he was getting no sleep at all because of the constant interruptions, so I insisted he sleep at home last night. I missed him, but felt the best knowing that he was getting good sleep. And I don't feel alone here.

I had to visitors yesterday...thank you!!! It was so nice to see friendly faces :) I am tired though and can't really talk much so the visits were short but sweet. I appreciate the calls too, but unfortunately I can't talk very well, so it is hard for me to call you back. But thanks thanks for the thoughts!!

So there you go, all is well. I am not feeling depressed or anxious or upset. I am just "being" and that is just fine for right now. My grandmother has been doing a lot of reiki on me, and I can feel her calming presence. It is nice.

I always have lots of things dripping into me....see Michael's bed in the background.

view from the window this morning.

Admission

2011-03-09T15:22:00.000-05:00

Mom is doing this post again today since Evie still isn't up to it herself. Seems like my Day 4 post was a little premature, since it didn't really cover the lowest point after all. After Evie and I returned to her house yesterday and I posted the entry to her blog, we decided to take her temperature (which we had been instructed to do every 4 hours). We had been told to call the clinic if her temperature exceeded 100.5 degrees. So, with the new digital thermometer in mouth, we registered 100.4, 99.6, 99.8, 100.5 and 100.7 all within the space of 5 minutes! Whatever happened to the good old mercury thermometer!! We didn't know what to do, so Evie called Michael. Within an hour or so Michael was home with a fancy electronic thermometer from the lab, which required sticking a wire in the mouth (it was designed to be used with lab instruments). As I left to go home, Evie's temperature was bordering on 100.5 consistently with the new thermometer. Shortly thereafter, it went past 100.5 and Michael called the clinic, and then Evie was admitted to the hospital.

She has a nice room here at Northside in the special wing where all the bone marrow transplant people stay since it has specially filtered air and cleanliness standards for people with low immunity. It was a rough evening for her with some upchucking and mouth sore pain, but Michael spent the night and she made it through okay. I'm here now and she's feeling better -- her fever dropped to 100.3 but she cannot eat or drink anything, even water, without pain. They just hooked her up to some pain med pump in hopes that she will at least be able to drink and maybe eat some soft food. She has an appetite, just can't endure the pain of eating!!! So she is watching cooking shows on tv to pass the time. I have been enjoying some of the hospital food they bring her -- feel a little guilty eating in front of her, but oh well!

Speaking of food, Evie and Michael had hired a chef to make some special organic, tasty food to help rebuild Evie's strength and to nourish the caregivers (Michael and me). This very talented chef spent Monday and Tuesday preparing all sorts of amazing dishes and storing them in containers in their refrigerator for us all to eat this week. The house was fragrant with delightful smells when we returned from the clinic yesterday. But -- you guessed it! -- Evie won't be eating any of that tasty food for awhile. I brought a salad and pot roast home for Andy to eat yesterday -- boy, was he happy!

No one knows for sure what the timeline is from here, but the best guess so far is that she will be here for maybe 3 days until her white cell counts start going up. If she is feeling better then, and if she doesn't have a fever, they'll let her out and we will resume the treks each morning to the clinic at 7 a.m. for a seven-hour stay involving blood tests and more fluids.

We count off the days. Next week she will feel much better; the week after even better, a month from today these mouth sores will be just a dream.

The Pits

2011-03-08T17:15:00.002-05:00

Mom here, reporting in on Day 4 post transplant, since our dear patient isn’t up to it. She wants everyone to know she is progressing along the path of recovery, but it is without doubt “mind over matter” time. That is because Day 4 is the bottoming out of her neutrophils in preparation for the new stem cells to grow and flourish. This time is associated with a very sore mouth and throat, which makes it very painful to swallow and, along with the underlying nausea, a time of no appetite. She does her best to get her pills (anti-microbials and pain meds) down and some liquids with as many nutrients as possible, but that takes a lot of will power to do.

And she doesn’t feel like doing much of anything at all. With some good drugs that we will pick up today, she will hopefully be able to sleep through this time. Everyone tells us her mouth will be sore for another 3-5 days and then she will be feeling better and better each day. So, we are keeping a positive outlook and enduring this painful time.

The good news is that we were prepared for this. The past month we have bonded with many other patients in the clinic – some further down the path than Evie, some behind her, and we all share experiences. So the patients and the nurses and doctors keep her informed on a daily basis about what to expect, how not to worry, how it will suck for a few days but then will be over. Armed with this knowledge, she is hunkered down waiting for the upside of all this.

So, it’s the pits – literally the low point of the entire experience. It’s also like the bowl of cherry pits – the hard inner part of the cherry that isn’t tasty or edible. But these pits are seeds of new beginnings, like today, Day 4, is for Evie.

Day +1 thoughts

2011-03-05T11:44:00.001-05:00

So it is Saturday morning (day +1) and Michael and are are hunkered down in our corner of the bone marrow transplant clinic where we will be for six hours today getting iv fluids. We are on the 10th floor overlooking the skyline. This is where I will be everyday for the next 30 days at least.

Everything up until now has been preparation for this--ICE x 2, catheter placement, cytoxan, nupagen shots and stem cell mobilization, stem cell collection, drug education, pharmacy runs, high-dose chemo, rest day and then transplant. ...following the schedule, making it happen, eyes on the prize...

So now we are here. The day we've been waiting for and I am feeling a little out of control. There are so many unknowns that could happen for me in the coming weeks and I guess I didn't stop to worry about them until just a few minutes ago. Fortunately Michael is here and he let's me get teary and then helps me move the worry from my head.

I feel like I was in the middle of a whirlwind on a specific path and now the winds have died down and we don't have a hundred things on the schedule to check off. The calendar is blank...we play it by ear. We wait to see how my body does with the procedure.

There is a very great chance I'll be admitted to the hospital (95% of people do) for either fever or mucositis. I find fear and anxiety welling up in me surrounding this. ...okay...so I feel it. There you go.

When I get worried I find myself asking a lot of questions. I spoke to a friend today who is 30 days post transplant and she said everything that could have happened, did...fever, mucositis, bladder infection, rash. She stayed in the hospital two weeks. But she said the good thing was that the medical team didn't seem worried, they had it under control. That is what they are there for. And today she is up walking around, out of the hospital, and getting stronger everyday.

Patty is coming over today, she's been coming a lot lately and I feel our work on the energetic level will help me with all of this. And as Adya says - just allow everything to be as it is...

...and then I can exhale

...and then I think of the sweetness of yesterday. Love billowing from every angle. And I realize, everything will be okay. Even if there are bumps in the road.

WBC: 3.2
Hematocrit: 29.9
Platelets: 244
Neutrophils: 2.8
Mucositis: 1 on scale of 10
Temp: 98.7

So here are my thoughts this drizzly Atlanta morn

Rebirth

2011-03-04T18:36:00.000-05:00

Just a quick note to let you know that all went well today. All my sweet little stem cells went in without any complication, and we were out of the hospital and home by 1:30 where we dined on delicious homemade spinach pie and brown rice from my dear dad. Thanks for all of the love you sent today. It was a good day. Now time for sleep.

The time is almost here!

2011-03-03T16:48:00.003-05:00

Dr. Hartle sent this to me yesterday titled "Stem Cell Art" Such beauty, it brings tears to my eyes.

Not much in me to give a great big post, but I wanted to pop in to say I am doing well and we are going along right on schedule for transplant tomorrow. High-dose chemo went without a hitch, and we all celebrated yesterday with the thought that, universe willing, it will be my last chemotherapy I will ever have to do.

I appreciate so much the outpouring of love I am getting from you all--words cannot describe my gratitude. Your love comes in so many forms, and I cherish each and every last one of them, from texts, to e-mails, to facebook comments, to phone calls, to re-birthday presents, to feeding us, to meditations, and most importantly daily thoughts, positive energies and prayers for my full recovery.

The high-dose chemotherapy is now in my body and it is working its magic. We asked it to be here, we welcomed it in to seek out and destroy the errant cancer cells that have found a warm home these past years. The chemotherapy is also working to eradicate my bone marrow so as there is plenty of room for these beautiful, healthy 4.5 million stem cells to move right in tomorrow and develop into strong and healthy blood cells that will bring me back to a full and vibrant life I fully expect to achieve.

This has certainly been a journey of the mind, body and the spirit. I have grown exponentially through all of these trials, and have been blown open by the power of love, the power of giving, and our connection to the heartbeat of the universe.

So with that, a big big I LOVE YOU to all you out there reading.

p.s. everyone says the hardest days are the ones directly after the transplant, so if I am MIA, know that I am here, just recovering.

Life is a Cosmic Joke

2011-02-28T17:04:00.003-05:00

These are the words of my very wise grandmother. We giggle about them often when life throws us curve balls. Well let me explain to you how we got to laughing this day. (I haven't posted in awhile, so I am picking up where I left off in my previous post.)

I left you, sleepless, but determined to get some more stem cells. I had collected 0.7 million and I needed at least 2M for the transplant, and ideally 5M. I had done energy work with Patty and Mary and taken a very expensive shot to help make this happen. I was very hopeful.

So mom picks me up and we head to the hospital for another round with the machine. My bones had stopped hurting (had only really hurt the first morning of my collection). I get hooked up and cozy for the 4 hour event when in walks the doctor. He looks at my chart and mentions something under his breath to the nurse, and then left. So I start asking questions! I've learned it is not uncommon for Hodgkins patients to take 2-3 days to get all the stem cells we need because of all the chemo we've been through. But I didn't realize that some fail to mobilize the first time around, and in fact this could be a prognostic factor in overall survival rate.

I got it out of the nurse that the doctor saw my progress and said that if I didn't get as much or more today then we will postpone the collection, give my body a break and resume again in 7 days where I would start the twice daily dose of shots again. Which means at least 12-14 more days ... my... face... went... pale. The very thought of postponing this any further was utterly unsettling. Mom had gone to the bathroom during my interrogation, and when she walked back to my chair she saw how I'd lost my color, my sparkle. And so I told her what I learned...and I saw the pain jolt through her body too. And we looked at each other, held each others hands and just kept telling ourselves that the path unfolds as it should...it has been this way so far, why stop now?

So I had one more hour of collection and then we went home. As I was packing up my belongings, I honed in on a quote on the curtain around my chair..."be gentle with yourself" aaaahhh, yes, be gentle. be gentle. be gentle. be gentle. be gentle. be gentle with yourself.

At home we had 3 hours to wait until we heard the count from the nurse. It was a LONG three hours. I hadn't slept the night before, but I couldn't settle enough to sleep. I was feeling the yuck from all of these drugs. I had trouble concentrating on things and I was trying not to stress, but was a nervous little wreck, and then release, and the nervous wreck...the release...a cycle.

I got out my Mandala coloring book and colored, and that was about what my brain could handle at the moment. Bright beautiful colors to calm the soul. And then the mailman came and delivered a book a dear friend sent to me. It was a comedy and mom I and read the first chapter aloud together. I was laughing!! It was a very welcome distraction and perfect timing.

...and then back to waiting....it was an even longer wait than the day before, and in my past experience the longer I've had to wait for news the worse it was--usually because the doctors had to talk amongst themselves as what to do next....so you can see where my brain was going with each passing minute.

The phone finally rings, I pick up on the first ring, and immediately I can tell by the "Eve?" that it good news. Christine, the awesome nurse who I had for collection called to say that not only did I get at least 0.7M, I got 3.8 M totaling a whopping 4.5 MILLION stem cells!!!

WHAT a roller coaster ride that day turned out to be. I went from deep worry to incredible ecstasy within the space of a couple of a couple of words exchanged. GOOD news feels SO GOOD TO HEAR!!! I immediately began crying, and laughing, and thanking her, and my bones, and it was a big mush of emotions---that had to get it together just enough to hear the final drug instructions from the nurse for the weekend.

So I hung up the phone, mom and I cheered, high-fived, and I totally broke down crying, a deep sobbing cry from the depths of my soul. Carthasis. I had to move that energy. And I did, and mom so lovingly, tenderly held the space for me to do it. It was a very sweet moment. And then tears turned to laughter--a deep laughter, as we channeled in my dear grandmother hearing her say "Life is a Cosmic Joke!!!" Here we were...if we had never known about the possibility of postponement we wouldn't have endured those several hours of torture waiting for the results. But if I didn't know about that, I would never had felt as good as I felt at that moment. I was high, happier than I had been in awhile. So which would I choose if I had to do it again....? Not sure if I could choose anyway....

4.5 million stemmies baby!! Means we can do the transplant as scheduled, I should recover faster since I have more cells to start with, and a good mobilization bodes well for a successful transplant.

Now...lets just get through this high-dose chemo.....

week in review

2011-02-18T05:18:00.000-05:00

It is 4 AM and I am wide awake...so what better a time to write a post!

I really need to update everyday as so many little gems show themselves each day and I never seem to capture them if I wait. But I do want to do a recap of the week to keep the stem-cell process journaled, and also to give you an update as to where we are in the process. It is late, and I am drugged, so please forgive the disjointedness.... :)

Sunday--platelets

Monday--day off! Valentines Day! Mom delivered groceries from Whole Foods! She is amazing, have I mentioned that before? I am learning how to ask for what I need, as being home-bound, and car-forbidden makes you dependent. I spent the day mostly on the couch. Michael cooked dinner (with delicious homemade bread from Pat!) and bought me beautiful flowers, and came to bed with me at 8:30 when I simply couldn't keep my eyes open any longer. He IS love. And has given up so much for me. I hope to spoil him to death one day soon.

Tuesday--blood work revealed severe anemia, which was no surprise after a 12-hour nights sleep and I still didn't want to get out of bed...So I got my first red blood cell transfusion, also without a hitch. I also met a new friend...a hodgkins patient who's story mirrors mine in a lot of ways. She is 18 days post-transplant and doing better each day. It was so nice to connect with her, and see someone on the other side of this. Mom also got to meet her mother, and they could share experiences there too.

Blood-work also revealed that my stem cells were no where near being ready for harvest. This was a bit of a disappointment, but I was relieved when the nurses said that Hodgkins patients took longer to mobilize because of all the chemo we've done. So they told us to come back on Thursday to check again, and realistically, it might not even be until Friday or Saturday that we can collect.

Wednesday--feeling BETTER, finally!! Amazing what a few red blood cells can do! I called into grand rounds at work, and that was a nice distraction. I am SO so so grateful for those who donated blood. I have donated regularly through out my adult life, but I realize now, it wasn't often enough. And, I never donated platelets. I knew blood donation was important, that's why I did it, but I would have done it more often if I had really known the impact. It is too bad that it takes a personal experience like this to realize such an important thing. I can never give blood again, but I hope to raise awareness to others. I am a believer!! What an easy way to save lives.

I was thinking a lot about my dear sister-in-law, Dawn that day. She is such a fighter and was in chemo that day! She is almost done with her several month struggle against triple-negative breast cancer. She is on the home stretch and I am SO proud of her for her strength, her positivity, her courage, and the beautiful heart in her. She is awesome and I am sending her so much love. I can't wait until the two of us are romping around in the woods together, laughing, and putting these chemo memories behind us.

Thursday--WE have Stem Cells Baby!!! And I could tell my bones were working hard for them! I hadn't had bone pain until I jumped up out of bed Thursday morning and almost fell flat on my face from the pain in my pelvis!! So those little guys are working, and I thank you.

The collection went without a hitch, it wasn't painful at all. Mom donated platelets in the chair right across from me! We joke about how fun our ladies day out was!! haha. She was such a trooper!! It was her first blood donation, and she did it!!

A couple of hours later the lab called and said that we've only collected 0.7 million, with the goal being 2-5 million cells. Because I was under 1 million on the first collection I have to take another drug called Mozabil. Side effects include....nausea, diarrhea, and insomnia, and yep folks, I got 'em. But, if it means I will get enough stem cells for transplant to save my life, well so be it. I am grateful!! It was a bit of a wild goose chase to track down this drug in Atlanta rush-hour traffic, but I've got a stellar healthcare team that knew I needed this tonight. Amazing people. I realized later that part of the reason it was so hard to come by is that it is $6500 per SHOT!!! And I might have to have 2 more! yikes!

Patty and Mary came over for the second time this week. Our work is feeling extremely sacred and powerful, and I LOVE those women dearly.

So that puts us to now...I did sleep for a few hours tonight. I am waking up every hour with hot flashes, this has been going on for over a month now, so I am getting used to that. But I guess the Mozabil put me over the line with the sleep disturbances...

It is 5 AM now. In an hour I wake Michael up to give me a double dose of the nupagen, and mom will be here at 7 to pick me up to take me to the clinic. Wish us luck for more stemmies!!

Good night and much love!!
Evie

Our Oregon Trip!

2011-02-14T19:14:00.002-05:00

These pictures are from our trip we took the end of January, just before the beginning of this bone marrow transplant process that started February 3rd. The write-up below is from the photo book we've put together chronicling our journey.

Pre Lockdown Trip

Oregon bound, what?? Yep folks, that’s how we roll! J We’ve been expecting a quarantine period ever since we decided to go forward with the high-dose chemotherapy and stem-cell transplant, but it wasn’t until two weeks before it all started that we found out that quarantine would be for 3 months—way longer than we expected!! So what have these two travel-hungry, nature-seeking, adventure-loving people decided to do to make the most out of the time left? We go for a trip!!

The question was, where to go? Eve’s passport had expired, so that ruled out any international travel. It was snowy in much of the country, which just sounded too cold. We’d been to California recently, so that left us with either the dry New Mexico desert or the lush, green Oregon. We checked our sky miles and found round trip tickets to Portland OR for the cheapest possible miles! And SO we booked it! Oh yeah, and then got permission to go and HAVE FUN from Eve’s oncologist, her bone marrow transplant specialist, and her naturopathic physician.

Eve immediately contacted her dear friend Sarah Lopath who she met in Oregon 15 years ago and “Lopes” proved to be the best travel agent we could have hoped for! A week later we were on the plane! Eve, donned her mask….and we set out with determination to eek out every bit of fun to be had.

…as you will see we were successful!

Platelets (with updates!)

2011-02-13T11:10:00.007-05:00

I am here at the doctor today to check my counts. They were low on Friday. And we just found out they are even lower today. I am trying not to worry...it is amazing where my brain goes. I wish there was someone here I could talk to and ask if this is normal even though I am taking nupagen? My bones aren't hurting like everyone said they would, and my counts are still low...white blood cells, 0.3 where normal is 4.8-10.8. But it is known that the chemo I got last Friday causes the lowest counts 7-10 days after...which is now...so it is probably all fine. I just never noticed before because we weren't monitoring my blood everyday.

But they say I need platelets today. So now we are waiting for Atlanta Blood Services to drop off platelets for transfusion. I am scared. I have never received blood products before. But my platelets are 17,000 when normal is 150,000.

The patient next to me just got platelets and now he is feeling some reaction and the nurses are paying him attention. I can't take Benedryl and they don't have an alternative. If I have a reaction they are going to have to shoot me with hydrocortisone.

But, Michael is here with me. He helps keep me grounded. We are working on our photo book from our trip to Oregon. That makes me happy.

Please send your love and most importantly your strength today. I know you will, you always do.

p.s things you learn around here...take your hat off and let your ears breathe before they take your temperature from your ear-drum. If not, they freak out when the thermometer reads 99.4! I almost got antibiotics again...but I let my ears breathe and it came down to 97.9. ... sheesh...

UPDATE:
I have successfully received my first bag of donor platelets! I am so very grateful for whoever was kind enough to spend the time to donate these. The kindness of strangers is pretty amazing. Secondly, I did not have a reaction!! And I was spared having to get benedryl OR hydrocortisone! And thirdly, I want to thank Skype for getting me connected with my dear friend Dawn who called in just as the platelets were just beginning to go in. She was there for me with love and support and strength...I asked and she gave. And it has been like that since day one. Dawn has always always been there on my rough days, just when I need her most. Thank you Dawn. And finally, my women's circle Skyped me in!!!! AHHH!! How cool is that?? They put my little computer face head in the circle and I got to be there for check-in :) All while sitting here in the infusion center with platelets bringing me life. I just love those women and are so grateful for them!

So we are done. Time to pack up the computer and enjoy the rest of this beautiful sunny day!

Love you all!

UPDATE 2:
On our way out of the infusion center I ran into a nurse practitioner. Now was my chance to ask about the low blood counts and if it was normal. She calmed my fears and said yes, don't worry. It takes time for the cells to come back after chemo even with the nupagen. So okay...exhale...and I did, and Michael and I came home, made a healthy and tasty lunch and went out for a long walk to enjoy this sunny 65 degree weather. :)

Quick Update

2011-02-11T16:30:00.000-05:00

Photo by audi_insperation

Hi All, me here just to say I am doing well. Lockdown is taking some getting used to, but it is all part of the process. Right now I am feeling on the upside of the chemo a week ago :) Still a bit ADD and fatigued, but not sick. Blood counts are down, but I am doing shots to stimulate my bones to produce. I love my bones. Thank you for working so hard for me :) We know you will work hard enough to get my counts up high enough to start the stem cell collection next week.

So we are going through the motions. Mom and I are spending a lot of time together but it hasn't been bad as we've been keeping busy with walks, cooking yummy food, reading, meditations, massages, and getting my house organized! Oh, and naps...did I mention that? haha. Lockdown is hard for this roaming soul, but it will be a good practice on moving inward.

So there you have it! One foot in front of the other and trying to live in the moment.

YOU can save lives!!

2011-02-11T16:16:00.002-05:00

Fight cancer while watching a movie! Please help save my life and peoples lives like me who are receiving a bone marrow transplant with your generous donation of platelets or blood. There is a critical shortage and your donation will be a great help towards successful recoveries of blood cancer patients! Atlanta Blood Services supplies my clinic, but volunteer anywhere to make sure there is enough to go around!

Platelets are of highest demand for blood cancer patients and volunteers can donate every 7 days up to 24 times a year!

the good things

2011-02-05T19:55:00.004-05:00

The things I hope to always remember...

I was lying on the couch last night after a really rough day and Michael comes and cradles me in his lap. We just lie there, lights almost out, no music on, no tv on. Just us. Him holding me, me feeing his breath, comforting, and loving. I know he is with me for this long haul, he is my rock, my best friend, one of the best things that has ever happened to me. He knew that we needed no words, we just needed to be there in the arms of each other, feeling our hearts beat. He knew I needed to be held up in his arms, he can give me strength.

After awhile my parent's call to check on us with such love. They let me cry, without rescue. I get to talk to dad for awhile and he shares with me wonderful things that get my mind off the day. We say our loving goodnights and I make my way to bed.

It was early still, so Michael was up and around making food for us for the weekend. I put on Adyashanti's meditation CD which has become such a source of strength for me even though I fade in and out of listening. In my veil between the worlds of sleep and wakefulness I have these amazing sensations of being cradled by loving hands. It was an extension of my meditation with Patty and Mary the night before where we did some amazing energy work and I truly felt the arms of many, of us, of you, of the divine, cradling us. It was incredibly powerful and also a source of strength.

So that is how I drifted off to sleep, cradled in love, with a sense of protection and hopefulness.

And that is how I want to remember yesterday...not the ins and outs of yesterday...which were...

I had begun to notice the night before that my heart kept fluttering when I sat in certain positions. From my previous experience being awake during my port procedure a year and a half ago, I remembered that if the catheter was in too far that it would cause heart arrhythmia's. So this was my concern that I brought to the chemo nurses attention yesterday morning. So began the day where mom and I toured 9 rooms of Northside Hospital between x-rays, EKGs, admissions for surgery, and then surgery to correct the catheter that was too far into my heart. I couldn't go under sedation for this procedure since I had eaten, so I bit the bullet and went under the knife with an Ativan under my tongue. Needless to say, the procedure was extremely painful--going into a fresh wound and all with a whole lot of tugging and pushing and pulling, but I had the best team of nurses and doctor's there for me. It was incredible. The one nurse that was by my side every step of the way...I'll never ever forget him. He let me squeeze his hand so hard I am sure I bruised it. They had complications because they had to put this port on my left side (they normally do the right because it is the straightest shot, but I already have a port on my right side). So in correcting the problem, they had to bend the catheter in newly damaged tissue, which was inflamed already. Because of the complication, and my obvious scared reaction they decided to give something to me to help calm me down, which made things better. Finally they got it, and in the nick of time...because we had to be back for chemo!

As you know I already had to postpone chemo one day because of the benedryl reaction, and I was NOT interested in postponing another day. AT ALL. I wanted to get the show on the road! There was a bit of a flexing muscles show between the nurses and the pharmacist. The doctor was fine with it. I got agitated and tearful...I think that melted a heart a bit. So it all came down to ... if I could be back by 2:00pm, they'd consider it. And, if there were some real reason I needed to postpone, I would have. So by gosh, my mom and I high tailed it all over that hospital. She even took me by wheel chair back to the chemo place after surgery promising that she'd bring it back (we didn't want to wait for someone to haul me over there). And we made it back by 1:45!! My mom is totally awesome. Have I mentioned this before?? :)

So they hooked me up to the pre-meds, then the chemo and we left the hospital at 5 pm, 10 hours after we got there.

I felt pretty terrible by the time I left the hospital. Nausea, head fog. I got side-tracked before I could even count the number of drugs they put in my body yesterday. But I was home, and I figure I have gotten off to a rocky start, but there will be rocky times during this, and we see that I still make it out okay. If I have times like my night last night, then it will all be okay.

I slept well last night and have been feeling much better today. I met a new friend at the transplant center today and she is a week post transplant with the best attitude. She looks great, and says even though she's had her share of hurdles, she is doing better each day. What an inspiration!!

SO in deep deep appreciation to you all for your cradling hands that comfort me as I drift off to sleep. I love you!!

(how do you like my fat, red little steroid face??, Oh, I just love it.)

Two days in...

2011-02-03T16:19:00.001-05:00

and I am still here! But, there have been some bumps along the road.

New catheter was placed yesterday, with more conscious memory of the whole thing than I'd hoped for (the nurses too). But it is done, and I am hardly traumatized at all (I am getting tough!!). I just let out a little yell when he pushed the thing through my chest cavity...So success! I am feeling the usual pain of surgery again, and last night brought back memories of nights after surgery...Michael helping me get in and out of bed, getting me pain meds, comforting me sweetly when I jolt awake from some nightmare. He is so amazing, I can't imagine having a better husband, really I feel like won the lottery finding him. I just feel sorry for him that he doesn't get much sleep. And, it is sad, we were talking last night and couldn't recall how many nights we've had like this anymore...We are getting good at just dealing with it, and not bringing the emotion with it. So that is good--progress!

So today, mom, my excellent, most awesome daytime caregiver, comes and gets me at 7AM for our first chemo appointment. All goes smoothly to start, they hook me up to IV fluids, give me IV anti-nausea meds, and steroids. Just when the nurse practitioner walked up to check on me, the infusion nurse comes in and pushes a syringe of benedryl in my line. Immediately I begin to feel really weird, my heart starts racing, I get really dizzy and have to hold my head because I feel like it is going to explode, or my eyes will bug out, or I will let out screams of panic, tear off my IVs and take off running through the hallways. I could barely talk, and my words sounded garbled. And then I started uncontrollably shivering all over my body and was freezing cold. It was really really scary. Fortunately the team of nurses there are right on top of things, the nurse practitioner held my hand, my mom came by me and put her hands on my shoulder. She could relate as this type of adverse drug reaction happened to her with novocaine at the dentist. I remembered just thinking to breathe this out, breathe this out. So I would close my eyes and take deep breaths and imagine I was on a sunny beach. I kept being ripped away from that beach in fear, but came back to it, and the breath. Meanwhile the nurses are putting oxygen on me, doing and EKG, and taking my temperature and blood pressure (159/99)!! and then give me some IV Ativan. That also helped me come out of this scary time. And now it is all over my chart says all over it not to give me IV benedryl ever again...

The bad news though is that I find out in the middle of all this that they also worry about my reaction being a display of a systemic infection. If there were a bacterial infection in my line, they could have pushed it into the blood stream with the benedryl dose. The onset of symptoms can be just as fast, which is partly why I have to have a 24/7 caregiver. (I couldn't have driven myself anywhere during that). They kept taking my temperature and it went from 98.4 to 98.9 to 99.7 even though I was shivering so much. They said shivering was a sign of infection. SO, they hooked me up pronto to IV antibiotics just in case. They took blood to culture, but that won't be ready for 48 hours.

So needless to say, they didn't do chemo on me today. I had a day of lots of drugs, just no chemo. :( I was pretty bummed out, feeling depressed because the last thing I wanted to do was create such a dramatic scene on my first day here. I also didn't want to get off schedule. But none of this can be helped. I just need to be grateful that that horrible feeling DIDN'T last and I didn't need to be admitted to the hospital. They are taking precautions by waiting because if it is an infection, the last thing I need is chemo to hurt my immunity. So I trust these nurses and doctors and go with the flow.

So I moved out of the scary part, it did end. :)

Mom and I spent a bit of time de-stressing and reminding ourselves that this will just all be as it is, and it will be perfect. Everything will be OK, right mom!? It is okay that the schedule is off, it is okay that I took all these extra drugs for nothing (or maybe not if it was an infection!). Then, I dig out my ipod and listen to Adayshanti's Meditation CD on "let everything be as it is" and I drift in an out of drug induced sleep haze with his calm voice in the background.

And then my drips are done, and we go home! Mom is here with me now--babysitting day two. Yesterday we tackled laundry, today Mom is cleaning up the kitchen disaster leftover from 3 days with a clogged sink (Michael finally got it fixed this morning after a late night with a hired plumber...) So she is busy-bodying herself while I lie on the sofa still feeling like I got chemo, but didn't...makes you realize how much these other drugs can make you feel like poo too...

So I am good. I feel proud of myself for not freaking out and causing a scene...I was so very on the verge of having a panic attack, but I talked myself down. Well, I guess I did cause a scene just from all of the medical attention, but I didn't cry (I think there was one tear..). I just breathed, in and out, in and out. And closed my eyes and held on. And I made it through the other side.

P.S.

2011-02-01T20:28:00.001-05:00

It is raining really hard right now in Georgia. I checked the weather and there is 100% chance of heavy rain tonight. I seem to have noticed that rain seems to be surrounding my heavy experiences. I like that just fine...kind of comforting. It gives my tears some company :) And it washes over me...

Such love

2011-02-01T20:00:00.001-05:00

I am in tears reading this post from my Aunt Patty. She has been a pillar of strength these trying months and I couldn't feel more lucky. So here we go! Tomorrow starts the ctrl-alt-delete! Here's to reprogramming!

http://patriciabralley.blogspot.com/2011/02/stem-cell-evie.html

there is a crack In everything...that's how the light gets in

2011-02-01T17:05:00.003-05:00

Okay, this is just too much. I've been reading Rob Brezsny's Astrology Newsletter each week when it arrives in my e-mail. Time and time again I am amazed at how his words fit with what I am going through at the moment. Now, I realize that it is just great advice that most anyone can benefit from reading, but it is always nice how when I read the horoscope for Virgo, it fits...

Anyway, I get it today, and here are his words:

VIRGO (Aug. 23-Sept. 22): In Leonard Cohen's song "Anthem," he sings
"There is a crack in everything / That's how the light gets in." From what
I can tell, Virgo, the week ahead will be one of the best times all year for
welcoming the light that comes through the cracks. In fact, I urge you to
consider widening the cracks a little -- maybe even splitting open a few
new cracks -- so that the wildly healing light can pour down on you in
profusion.

I am a huge Leonard Cohen fan (his concert is where Michael proposed to me). And I have often thought of these words during this journey. But to read this today, on the eve of the biggest hurdle of my life so far...brings tears to my eyes. Thank you Rob!

Friendship

2011-01-31T17:39:00.001-05:00

www.paintingsbykate.com

Friendship can develop in the most unexpected ways. And I've been fortunate to experience this a few times since beginning this journey. Cancer can take a lot from you, but I have found that it gives a lot back too. It opens the space for greater possibility. There is a richness to experience that comes after looking at life through different colored glasses.

I'd like to write today about the people I've made friends with because of this experience, and what a gift it has been.

I'd like to start with my now dear dear friend Dr. Lori. We've talked many times before, professionally, going over Metametrix test results. For a few months I noticed she wasn't on my calendar to consult with. And when we finally reconnected I found out she was away treating cancer. A few months later I found out about my cancer, and when it was difficult for her to reach me for consults I finally told her what was going on. We've bonded because of this big C word, but it has become much more than that. We've never met, but she's become one of my favorite people to talk to on the phone (and for those of you who know me know I DON'T like to talk on the phone). I've never met her but our friendship has developed strongly and deeply via shared experiences not only on the cancer realm, but on the living life realm. I know we will meet one day, and have a long, loving embrace and then share lots of laughter and fun times. (as a side note, as I was writing this, she called me!!! We haven't talked in a couple of weeks because of all the craziness in each others lives, and now, while she is heavily on my mind, she calls. I have a huge smile on my face. I love the way she helps me process my fears, and experiences, and I also love how we can talk about fun stuff too.)

My next friendship developed after a short lunch shared together at one of the Metametrix seminars I lectured at. M found out I was battling this by doing more research on Metametrix, and me, as the speaker, and stumbled upon my blog. Since then she has become a devoted friend and checks on me frequently, sends the sweetest, most thoughtful gifts, and is THERE for me! She is a gem (and SMART!) and I feel honored to know her.

My friends I've met at the alternative clinic where I received care for a year will always be a reminder of the laughter we can experience despite the struggle. To Karen, Laura, Robyn, Jim, Andre, Patty, Lupa, Sandy, and to Holly, Michelle who were brave and strong and loving.

To Connie, Michael's aunt, whom I've never met. She lost her husband to a many years long struggle with lymphoma. Even though we've never met, she continues to send me sweet e-mails and encouragement. Today is the 4 year anniversary since she lost her husband. We joke that even though we've never met, it seems like we know each other. I look forward to the day when we do meet.

To Franny, who I've also never met. We have a connection because we've both been diagnosed with Hodgkins Lymphoma. ...me a month away from getting married, and you a month after having your second baby. Neither time good for hearing the news (if there ever is a good time), but you with two children to survive for. I am so happy to know you, so happy that you've shared your experience via blog, and so happy that you are cancer free and singing again.

A few weeks after hearing the news that I relapsed my aunt Patty offered to get together each week and practice Taoist meditation with me. She'd come to my house and bring her friend Mary whom she'd been meditating with for years. We'd just see what would develop, and at the time we thought I might be going straight into stem cell transplant, so it might be a lot of sitting around watching me sleep...But the three of us have been getting together since August, once a week, meditating, doing readings, guided movement, energy work, talking, laughing, crying, emoting...it has been amazing, incredible, life changing. I am so grateful for Patty and also so happy to know Mary. She is an amazing woman.

Next doesn't technically fall into a new friendship, but a changed friendship. Dr. Hartle, my major advisor in graduate school, has been so amazingly supportive during this tough time. I see her brilliant heart lights shining bright with her strong words of encouragement, love, and the most amazing ways of creating visualizations for healing. I won't forget it, and will certainly pull up her e-mails when I am feeling crummy and needs words of encouragement.

And finally, the most recent friendship developed is with Kate Blue. Remember this post when I went searching for a picture to post and found this amazing artist named Kate Blue, with her painting, Walk the Path? Well, she has the computer technology to know when people have used her photos illegally and she caught me! But instead of being angry, she has been the most kind person! We've developed a sweet friendship and she is rooting me on! She even offered to paint me my own soul painting and DID!! See above :) :) I absolutely LOVE love love this painting and it is on the altar in the basement where we meditate. each time I look at it I see something different. It is a painting that speaks, it has words, and imagination. It is very special. She did a reading too, before the painting, and asked her spirit guides about me. I am totally stunned by this act of kindness. And to top it all off, I just got a t-shirt in the mail from her, with hand-painted hearts on it. Please check out her website, she has so much to offer...www.paintingsbykate.com I really can't believe the kindness of strangers. It changes my whole world and makes me realize the importance of human interaction.

So here is a post to honor my newly made friendships. I in no way want to undermine those who I've been friends with and are there for me 100%. Your love means the world and really does keep me going. Love makes the world go round, (and makes Evie want to fight even harder!!!).

My love to you all!!!

the next steps...

2011-01-31T11:57:00.001-05:00

In life, some memories are move vivid than others. One very vivid memory I have is when I was 16 and I heard that a classmate of mine had to donate her bone marrow to her sibling because she had leukemia. It was the first time I had ever heard of a bone marrow transplant, and it was also the first time I had seen someone show such an incredible act of kindness like that. It was her sister, and she'd do anything to save her. Things have changed since then to where the process of bone marrow harvest is easier, and less traumatic, but back then, they had to go right into the pelvic bone 75 times with a large needle to get enough marrow (bone marrow biopsy times a million).

I remember being scared about this and thinking of all the hard things people encounter in life. I remember thinking how lucky it was that I didn't have leukemia. And even though I wasn't very close with either of them, it still sat with me...the heaviness of the whole situation. But, the sister ended up surviving and it was a good thing.

So now here I am 18 years later facing my own bone marrow transplant. Fortunately I don't have to have a donor, I can donate my own stem cells. It is called an autologous stem cell transplant instead of an allogeneic transplant and comes with much much fewer complications.

Some people have asked me why I need to do this transplant when I am in complete remission according to PET scan. I am sorry I didn't explain this earlier, but to clear up the confusion...here's how we got to where we are today.

I have met with the bone marrow transplant specialist doctor twice now. He seems pretty confident that more ABVD wouldn't have helped the situation because I was in complete remission, continued 2 more ABVD therapies after that and the cancer still grew back so quickly (4 months). That seems to be the key. There are lingering cells in my body that are resistant to that chemotherapy. He did order the lab to check my original biopsy and they did find I was in the highest risk group according to a certain cell marker, highest risk meaning most likely to relapse.

Other areas for concern were that the tumors grew back so quickly after my biopsy this August when the surgeon thought he got the whole tumor out. And I was doing heavy duty alternative treatments.

So we opted for the mainstream method for treating relapsed Hodgkins Lymphoma--ICE therapy to put me back into complete remission via PET and then high-dose chemotherapy and stem cell transplant. It was IMPERATIVE that I went into complete remission via PET before moving on. If I hadn't, my chances of the second phase working were slim. It puts me into the category of refractory Hodgkins lymphoma, and the high-dose might not work either (might be resistant). It also means that the high-dose would have had to work on bulky tumors, not just stray cells. You just do the high-dose once (over 5 days).

Basically, the high-dose chemotherapy is killing my bone marrow which might be a source of the tumor cells. It is also coursing through my veins and working hard on scouring the entire body. My stem cells are harvested before the high-dose chemo, then frozen, and then put back in me two days after the high-dose. The day my stem cells go back in is called my "rebirthday". From then on out I work each day to regain my strength, my immune system, my health, and celebrate my new cancer-free life!

During the anticipation phase of this process I thought I'd have to be quarantined for 30 days after the stem cell transplant. Well, turns out that the process is much more complicated. The stem cell collection, called mobilization, starts this Wednesday. I have to get a new port put in that is external, so I have to deal with tubes sticking out of my chest for two months! Thursday I get another round of regular chemotherapy and then I have to take a lot of bone growth stimulators for 10 days to help kick the stem cells out of my bone marrow into my blood stream. Once my counts are high enough then they harvest the cells through my new port. It could take up to three 7 hour days! Once the stem cells are collected, I start the 5 days of high-dose chemotherapy and then two days later have my rebirthday (if all goes well, March 4th). I have to go in every day after that for 6-7 hours for blood products, fluids, etc. Several of the people I met with on my education day say that the worst part of it all is the two weeks after transplant. The pharmacist also said to me that just be prepared to be admitted to the hospital for some reason or another...usually everyone does. Wouldn't it be nice to prove him wrong!

So this is at least a two month process, and instead of being quarantined after the transplant, it starts THIS WEDNESDAY and lasts until after the transplant. It means that I can't drive myself anywhere, I can't be left alone, I can't go into public places, not even the grocery store. It is to the doctor's office (almost everyday) and then back home where I must be babysat. One month after transplant I will probably be released from going to the doctor all the time and be babysat, and I think I can start to drive but I can't go in public places for 3 months! I can't garden this spring either. Needless to say, I was not to happy to learn this. But they were pretty strict about these rules and said my caregivers (Michael and my mom) are responsible for enforcing these rules because it means my life.

The good news is that they said I could have visitors to the house as long as they weren't children under 10, they aren't sick, or around anyone sick, and it is a small number at a time. So yay!

It has been a long road to get here. I am happy to begin to see the light at the end of the tunnel. I am ready to get this started as I want to get it over with even faster. I have fears around this, I am scared, but I have love and support and I am strong, both physically, mentally and spiritually. So when those fears rise up, I feel them and then release them until they come again.

So here we go!

First day of school

2011-01-13T19:18:00.000-05:00

I finally took a picture of the painting I did a couple of weeks ago!

Well, despite the continued icy road conditions, my evaluation day was still on! Mom picked me up at 8:30 and we headed to the hospital. I slept last night, thankfully, but my dreams were filled with stress dreams about the looming bone marrow biopsy.

Fortunately the biopsy was scheduled for early in the day so I wouldn't wait in anticipation for too long. The nurses at the Bone Marrow Transplant of Georgia group are all really nice, and when I expressed my concern about this whole thing they said not to worry, they would give me something to take the edge off. Take the edge off???!!! I thought, hmmm...not cool. I don't want to remember the edge, or anything near it. They said they can't give me sedation because of risks, and recovery time. They did calm my worries a bit saying that they do 5-6 a day, so they knew what they were doing. I thought this is good....maybe we can avoid the 6 tries to get some marrow like last time.

So I really had no choice but to suck it up and do this. I get on the table, mom holds my hand, and they give me some sort of calming drug. I could feel it relaxing me, thankfully. But I could also still feel the needles for the lidocaine injections, and I started to get pretty scared. But by the grace of god, this wasn't torture. Turns out what the previous nurse said about my bones being really hard IS true. This nurse said of all of these she's done, I was number 2 in hardest bones. My pelvis is also tilted a bit so she had to readjust her angle. I felt the pressure, and I felt the marrow being sucked out, and it didn't feel great, but I didn't freak out, I didn't scream bloody murder coming from the bowels of the earth. I was able to deal and the experience wasn't horrible. Good thing too, because apparently I have to do these again over the next year. I am so so so grateful that these nurses have made me less scared of this. Now I am just sitting here with a pain in my ass, but I can also deal with that. :)

Anyway, that was just a part of this big evaluation day. I told mom as we were nearing our last appointment that it felt like the first day of college (without all the excitement though....). We had a schedule and went from appointment to appointment and had to find our way around the maze of Northside Hospital.

So today I have been evaluated:
1. Labs/Bloodwork 10 tubes, I counted!
2. EKG
3. Bacterial Infection swabs
4. Bone marrow aspirate
5. CT scan of the brain
6. Echocardiogram
7. Pulmonary Function tests
8. Blood bank services
9. Financial services
10. Psychological evaluation had to be rescheduled due to weather.

This is real. This is all real, and it is really happening. It hit me like a ton of bricks as I was sitting on the table, getting my labs drawn. I was asking the nurse all kinds of questions. I do have to get another port put in, it will be above the surface of the skin, and I have to leave it there for at least 30 days post-transplant. My red blood cells are so low right now they are considering giving me a transfusion. I have to be in everyday for up to 50 days to get labs, transfusions, IVs. They say to expect being there 4-6 hours each time.

I also read in the little booklet that I got today that I really shouldn't be in public for 3 months post transplant. 3 MONTHS!! I was thinking 30 days...this makes me sad. But really, 3 months is nothing compared to a lifetime. I get happier when I think of it that way. I also get happier when I see that I can have more visitors than I thought (I thought it could only be two)...so silver linings :)

So I am sitting here on the couch, feeling exhausted. Michael is making dinner--he got me a nice good quality steak to help those little blood cells. A lot is going through my mind and I realize this is a chance for growth. A lot of people have done this and survived and are cured!! I also read in the booklet today that for most people we can stop taking medications after a time and resume a normal lifestyle--I won't be tied to the medications for life. This is a relief. I am also very grateful that I can use my own stem cells. This process is infinitely easier than those who have to get a donor. So gratitude still is beaming bright despite my fears and trepidations.

Finally, as far as logistics...I won't go back again until January 25th for my "Education Day" where we discuss my results from today and the plan going forward. So I won't be getting more chemo until at least after the 25th. That is two more weekends of living!!

Thanks to you all who sent me love and prayers today for a good day. You are the best!!

Bone marrow biopsy...what??

2011-01-12T22:39:00.002-05:00

So it is a funny testament to my personality...We found out the results last Thursday afternoon (much earlier than expected) of my PET scan that showed complete remission, and by Friday afternoon I was frustrated that I didn't have the complete plan as to what was next yet.

I have now been released from my regular oncologist to a specialist for the stem cell transplant process. I've been in touch with them before now, I have been talking with the nurse who I adore already even though I haven't met her. She has been aware of my current ICE treatments and said to let them know when we have good PET scan results...so I did. And I am ready to go!!!!

I had to have reality check when I didn't get all the answers as to what is next, right away. Fortunately the nurse realizes my anxious personality and sent me what she had so far late Friday afternoon. It wasn't the final plan, but it was everything she knew by then. And there was nothing planned until this Thursday, and it was more testing, no treatment....I felt a bit disappointed by this.

On top of that, the buzz of the clean PET scan fizzled a bit when I read that I am scheduled for another bone marrow biopsy. I don't know if you remember, but I can guarantee you that that was the worst possible thing I have experienced yet in my lifetime. My mom is there to attest...she refuses to witness another one of those without some sort of sedation. Barbaric is the term we use...

For those of you who haven't been here to experience it, or haven't read about it in the news, Atlanta has been hit by a huge snow storm. We got 5 inches Sunday night, and the city has been shut down ever since. All my testing for the next phase is scheduled for tomorrow, and until today I didn't even know if it was going to be possible. Fortunately then nurse called me today and said, yes, let's go!! No time for delays. All that was on my mind was, .... will you sedate me for the bone marrow biopsy???? And she said yes, no problem. We take good care of you. PHEW!!!!

So tomorrow I will go for an entire day of testing to prepare me for what is next. I hope to know soon what the schedule is for the next couple of months. I am a planner, and the not knowing is tough on me. But we are on the path!

So there we are for now. I have had a great week. Michael and I went up to the mountains last weekend, and even though my stamina and strength aren't great I still managed to get to the top of the mountains (slowly...) The snow hit on Sunday night and I had a nice time feeling cozy with my love. We went for walks, enjoyed the crystal brightness of the snow and ice, made our snow family and cuddled savoring each moment for what it is, and bracing for what is next.

Here's to staying warm and feeling loved. Sending love to you all!

Scan is CLEAN!!

2011-01-06T21:24:00.003-05:00

Dad took this picture. I asked him to send me one of his sunset pictures because I felt like the sun is setting on this disease! I love this photo. Thanks dad!

Yep, that's right folks. Those pesky little tumors are gone!!! It is the most we could have asked for today. And I am ecstatic!! I made a scene in the radiology department, but the people there are like family and just helped me right along with making it...crying and hugs and joy and laughter and YES!!! Michael was there with me to hear the good news. It was awesome. It IS awesome!! So nice to get good news after all the bad news we've heard.

So now we move on to the process for the stem cell transplant. I am not sure what that will be exactly yet. I'll keep you posted, you know I will!!!

I couldn't have done this without you all. Truly. You are my strength. You are my encouragement. You lift me up and keep me going. I am incredibly grateful for you...every cell of my body says so.

Much love and sweet dreams!!!
Evie
p.s. edit for Friday morning...Dr. Hamrick e-mailed me the final report from the radiologist this morning and all over it it reads COMPLETE REMISSION!!!! yipppppeee!!! And, all other organs look good, my lungs look BETTER. My bones are showing some wear from the chemo, increased metabolic activity, meaning they are working hard to get those blood cells up. Go little bones!!! I'll feed you all the good stuff to repay you...

He also sent me this one...said it was one of his favorites. He took this of Curtis and me soaking in the sunset December, 2004. I love it too.

Journal Entry to Remember

2011-01-04T10:56:00.005-05:00

Last Wednesday I feel like I had a glimpse of what scholars call enlightenment, or the awakening. I have never thought much of it before. It always seemed so abstract to me that I could never quite get my brain around it. I've certainly had my share of experiences in life to know that there is something greater than we can understand or explain. Then my brain gets too involved, and feels like I need to put definitions to it and rationally can't do it. How can we explain something we don't understand, or know, or have proof, other than talking about the experience? I can't seem to go on blind faith.

Anyway, I still struggle with the definitions, and have realized that it doesn't matter. Just feel, just experience, just lessen the resistance, open the senses....and see what happens.

So Wednesday...well, I guess I can say it started on Tuesday night. My dear friend Erin, who've I've known since I was 14 was in town for the holidays. She's a planner, and two months ago sent out an e-mail inviting people to a Cork and Canvas event where you go and paint and drink wine (kombucha for me!) with your friends. Now, remember two months ago...everything was up in the air. And then even two weeks ago, I knew I'd be getting chemo and not really sure if I would feel up to it. But, last round of ICE left me feeling pretty good by Tuesday, so I thought this would be the same so I said, YES! I'll go!

Well, ICE did not leave me feeling great by Tuesday. It was actually a pretty rough few days leading up to it. But, my mom said, don't worry, I'll come and get you and we can go together and we can leave early if you want to. This was so sweet of her because I was definitely not on the way, and I knew it was a late night adventure that'd put her even later after dropping me off again. But she insisted and I was grateful because I get so spacey that driving is a chore.

SO I get myself off the couch, put on makeup and try to make myself presentable. And we show up and immediately I feel better from all the warmth of Erin and her family there. They are like family to us and so much fun to be around. There are always smiles and laughter, and that can be healing of the best kind.

And then we got to paint!!! It was SO much fun!!!! Three hours flew by like it was nothing and we all said we could have kept painting! Art therapy...boy I tell you, it is good!! I wish I had a picture to post of the paintings.

So that night helped so much in bringing me out of the chemo funk. I awaken on Wednesday morning and head to yoga. My body is still achey and weak and trying to talk myself out of going. But I went with the promise that I could just lie there, as long as I was there. Fortunately it was a small class because of the holiday, and the wonderful teacher, Essud, seemed to pick up on the fact that I needed a restorative yoga class that day.

Now, I've done my share of yoga in my day. I even attribute it to the reason I am married to that sweet man of mine. Since this illness I haven't done as much yoga, but have been introduced to QiGong and have found it resonates really well with where I am...learning to be aware of the subtle energies, and the movement of the energies. I have really been charged by this practice and found it more uplifting than my previous yoga classes. Essud also teaches QiGong, and that is why I started going to him. But there was no Qigong that morning, just yoga. Either way though, I needed to move my body.

Little did I expect, but that yoga class totally blew my mind. I realized that yoga awakens the subtle energies too, moves them and uplifts the soul too. I just had to be open to it--I had to situate the brain that way. I took moments to stop and just feel, and it was ecstatic!

So I left class buzzing in the soul despite the dumpy physical drag. It was a strange combination of feeling good and bad all at the same time.

...and then I had to go to the post office....where there was a line out the door with one clerk on the job. But instead of getting bothered, I found myself in a place of profound love and connection with all of the people in that line and the clerk himself. I felt that cosmic collective consciousness and connection between us all, and got totally zoned out on the heartbeat there.

After that strange experience I headed to the local tea shop where we hold our women's circle. I had to pay for the next round and stopped in for a cup of tea while I was at it. I was sitting at the bar and I hear the door open with a jingle and I look over and this woman is coming towards me with tears in her eyes. And all I could think to do was to give her a big hug. We embraced and then she sat next to me and told me that a week ago she went in for a mammogram and found out that she had breast cancer. She was still in shock, and in the whirlwind of appointment nightmare, decision making, fear, and the unknown. She said when she walked in and saw me with my scarf covering my bald head, all she could think of is this might be me.

So we talked for about an hour. And I was working hard to hold her up in my heart and help lift some of this heavy burden she was carrying for I know all to well that the phase she was in is one of the hardest she will have to go through. The beginning is scary. Very scary. And during that time of fear and emotional havoc you are called on to make important decisions and deal with insurance companies and choose doctors, etc. It is tough. So I listened and tried to give encouragement and love. And now we've got this connection and I think we are going to have tea again sometime soon! I hope that I helped ease some of her worries and fears.

I sailed on to the rest of my day with a call from Michael, my beloved, who never ever ever leaves work early. But today he said he was coming home and we were going to go buy a 4-wheeler. A back story---he has been obsessively looking for the best 4-wheelers to buy for a couple of weeks now. He's been up at 6 in the morning to go look at possibilities. We've been looking because we've got land that we need to develop. So no, this isn't a toy...it is an essential work vehicle ;p. But he had finally found the perfect one, the only problem was it was south of Atlanta, and the dealer was only open until 5pm.

He picked me up and was giddy like a little boy. It was so cute. I enjoyed so much seeing him happy and smiling, he has certainly deserved it. He brought me along because I am the haggler...he's so nice that if he were left to his own devices, he'd buy it outright at sticker price! So despite the nausea in my belly, and the ache in my head, I was still high from the day and seeing him made it even better. We went, we haggled, and we bought the best 4-wheeler ever :-)

And we made it home just in time for Patty and Mary to come over for meditation group...I couldn't believe how lucky I was to end such a cool and strange day with meditation with those two. I wasn't disappointed. Far from it. I think we had some of the most intense mediations of yet. We had several meditations, back to back with different intentions, and boy, how powerful. We were all three together, yet all had deeply intensely different meditations. My most memorable left me in a puddle of ecstatic bliss that I couldn't put words to afterwards when talking about the experience. Silence seemed to be the best words.

I was totally blown away by my day. The yin and yang. Interesting to have such a good day while still feeling physically blah. It was a nice lesson.

Thursday was an interesting one as I had to pack for Michael and me to go out of town. It took me forever because my brain just wasn't working. I even had to stop and throw a bit of a tantrum because I just couldn't get it together to figure out why I was in this room or that, or what I had packed and what I hadn't and even find some kind of order to the way I was going about all the tasks. After that difficult experience I went for acupuncture with the pleading begging to fix my brain. So I had a pretty intense session. My brain has truly suffered from these drugs and I just hope that it finds its way back to health. It has gotten better since then so I am hopeful. We did make it out of town, finally, after an even more surreal trip to Whole Foods for groceries for the weekend. I walked around that store, spacey and a bit sweaty, probably 10 times trying to figure out what to bring. But I made it, and Michael and Curtis and I escaped to the mountains for an incredible start to the new year. I had a noticeably harder time hiking the mountains, but slow and steady, I made it to the top by golly!! I just hope I get my stamina back. I will.... In the meantime, the peaks are even brighter the harder you work to get there (or that is what I am telling myself :). We had a beautiful ceremony under the Hemlock tree in the rain to let go of the lessons from 2010 and welcome health, gratitude and love for 2011. It was the highlight of the weekend.

I am back now, and expecting to be back to normal. But again, toss those expectations out the window. I was extremely fatigued yesterday that I, after a 10 hour nights rest, slept for a solid 3 hours in the middle of the day. It was crazy how tired I was, and I didn't even party hard for the new year!! And I slept like a baby last night too. It didn't occur to me until I read my friends post this morning about how her 6-year old son slept 12 hours last night and woke up visibly taller. And I thought, hey! That's my problem! I've been taking these shots that stimulate my bone marrow to produce cells, and my body is warn out from all that work! I'll listen to the words of my Qigong teacher and say "I love my body, and thank you for taking care of me" So I just need to be gentle with myself. Take each day and each experience as it comes.

I also found out yesterday that a friends husband has passed on, and my heart breaks for my her and their young daughter. Life is delicate and fleeting. We need to cherish each moment because you never know when it will be your last. I don't envy this healing process for them and I hold them solidly in my heart for strength and love and rememberance.

Well, this was a long post, and I think I mainly wrote it because I wanted to remember this time for me. I wish I were better at explaining the mystery, and have had so many of these experiences these past months that I guess I am just going to have to go on memory until my tongue catches up with the sensations.

Love to you all, and Happy New Year!!! 2011 will be one to remember, it will be a great year.

Expect little and you will never be disappointed

2011-01-04T09:29:00.000-05:00

Paintings by Kate: Art with Spirit www.paintingsbykate.com

What a way to leave you hanging! Last you knew I got sleep, which I was insanely grateful for. Phew. I took another 1/2 ambien on Christmas Eve night and then we were good to go...my sleeping powers were returned.

The thing about chemotherapy....is....expect nothing as it will always surprise you. These were the wise words of the nurse on the very first day I started chemo back in 10/2010.

So I guess I can't expect ICE regimen to be the same as ABVD. And for that matter, you can't expect one ICE treatment to be the same as the one before!

Here's the strange thing. Physically ICE is doing a number on me, but spiritually I am soaring to new heights. I guess this is what happens when you are faced with a life-threatening illness, you find ways to step up to the plate. I mean books upon books are written about it, I am no exception.

I am faced with my next PET scan on Thursday. Please please, I ask that you put me in your heart, send me strength and thoughts of health, pray for me, do whatever you do that can help lift me up on Thursday. It is a big day, we need to see that the tumors are gone before we can move on to the next step. If they are not gone, it means more chemo, but more worrisome is that it might mean they are chemoresistant and the stem cell transplant might be less effective (if they even do it at all). So I believe in the power of thought, the power of love, and the energetic shifts that can occur when you spend time with it. You can make a difference. So I thank you in advance for it. It means the world.

P.S. So I go to think of a title for this post...and this is what came to me...expect little and you will never be disappointed. So I will go in on Thursday with no expectations and will deal with whatever life chooses for me. Even as I type this I realize how hard this is. ... I want to go in with warrior spirit and say YES, we've beat it! How could that be bad? hmmm.....time for more reflection...

P.P.S. And then I go to look for a picture to post and I find this by Kate. It is called Walk the Path and is beautiful. I love this painting. Reminds me what I need to be reminded of. Thank you Kate.

Sleep sweet sleep....

2010-12-24T08:44:00.000-05:00

Ah well, I couldn't have expected round two of ICE to go as smoothly as round one. I mean, you start off healthy, so it is easier to combat the yucky side effects, but round two, your defenses are compromised. For me so far it has been steroid-induced insomnia, LIKE NO SLEEP on Wednesday night. And for those of you who know me, know that Eve on no sleep makes for one unhappy girl. I have never once pulled an all nighter for school, I've always had to plan ahead enough to allow a little sleep, and I've been through A LOT of school! I've always been the first one to poop out on late nights. I love my sleep. Period. Like 8 or 9 hours of it. It makes me a happy girl, easy to be around, positive, playful, and able to cope with the stresses in life (I might have a few right now). So no sleep Wednesday night delivered a sobbing weepy girl to day two of chemo. Not to mention I felt like I felt all the symptoms of chemo sickness much worse (probably because of the no sleep). But, the nurses there were awesome and supportive and working quickly to get me some help for tonight as I was getting depressed that I had two more days of steroids to take!!

Now, I am not a prescription med pill girl (which if funny based on all the drugs I am putting in my body now--I mean healing elixirs!!!). But frankly, I have gotten exhausted worrying about herbal/nutrient interactions with these chemo drugs. I am doing this chemo and I want it to work. So, I was given the choice to take Ambien. And I said YES! I need my sleep or else I am not going to make it (sobbing)! Michael was worried about this because we've heard of all kinds of weird stories about Ambien and sleep walking. And I am hooked up to this pump were I can't go anywhere besides a two-foot radius without it pulling on my port. We teased and said he could hand-cuff me to the bed...With this chemo drug I also have to make sure I get up and pee every couple of hours because it can ruin my bladder. I didn't want to just sleep through that.

So it was a tough decision to finally make, but 9:30 rolled around and I felt the steroid jitters and started to freak. So we cut the little pill in half and set Michael's alarm for couple hour increments to remind me to pee and compromised with that. AND IT WORKED!!!! I slept for almost 10 hours!! Like a baby! I am just so happy!!! Maybe you other fellow sleep-lovers will know the joy I am feeling right now. I do know many of you live in the mind set of :"sleep, who needs that?" (including my husband).

Anyway, kind of a simple check in and probably TMI. But, I've got energy to put something down on paper this morning. So yay!

I hope everyone is having a wonderful holiday season!! I am looking forward to spending mine with family and friends.

Many blessings and love to you all!

Reporting In

2010-12-19T18:46:00.001-05:00

Here's me coming out of the woodwork to let you all know that I am doing really well. Chemo does make me less focused, which is probably what is to blame for not sitting down long enough to write a blog post. But I do want to let you all know I survived round one of ICE pretty well less some nausea, couch surfing for 6 days, bone pain, space-cadetedness, and....loss of hair....again....I actually have less hair now than I did after 10 treatments of ABVD, but okay, I can deal. What is funny is that the night before my hair started coming out in clumps it was long enough to actually put in a pony tail!!! A small one, granted, but a pony tail no less!! I bounced around the house all night showing Michael my nubby, and then the next morning in the shower...clumps...so I cried. And then tightened up my bootstraps and didn't leave the shower until I made artwork on the wall with my hair (gross I know, but it felt like a way to deal with it). I have pictures but it might be in poor taste to show...

So with all of the bad, the good has made up for it in spades, like triple spades. I want to give words to these experiences, but they have been so deeply meaningful that my words just take away from the depth. Maybe one day I can learn to articulate the beauty in life. But for now I just want to give gratitude to my Shakti family, to my meditations, to the processing, to the movement, to your amazing amazing, unfaltering love and support, to the lovely winter solstice celebration with the women's circle and the warming of our home, and last but certainly not least, my parent's and the magical land to which we love and honor and explore.

I go in on Wednesday for another ICE treatment--three days worth. And then celebration of this special time with family and friends. So happy holidays to you all! I hope we all get to see and enjoy this lunar eclipse on the solstice on a full moon!! Seems like a once in a lifetime event, but who knows...maybe it happens more often than I think. Either way, sending love and gratitude to you!

the shift

2010-12-02T20:40:00.006-05:00

Warning: this post is disjointed with a poor, and rambling flow...but I wanted to put down on paper my thoughts these past days even though I am under the influence of drugs...my intentions are good.

Well folks, so far I am surprising the hell out of myself (in a good way!). And my only explanation is that I've earned it! haha (I've had help!) I really think that following the path that I have has made me ready for this next phase. I couldn't have done this any other way, I realize that now...all those worries about decisions, etc...well, all those decisions got me here, and here is me feeling really like I can BEAT this.

I am sitting in a space of being okay with what is next. I am hooked up to a pump that injects ifosfomide in my veins every 2 seconds for 24 hours, and that is just one of the three drugs I've been given so far. And I didn't cry once today!! This is HUGE! I am seeing these drugs as healing elixirs instead of poison, which I thought of before.

I slept fine Tuesday night before starting chemo again...that never happened during the 10 treatments I had last year. I cried at every one of those treatments except the last one. The chemo sickness started on day one of chemo and it lasted a week. I am on day 2 now and still feel pretty okay.

Instead of crying I even had a fun day being silly with Michael at the infusion center and then eating the MOST delicious bowl of Pho (everything tastes really good on steroids). And then mom went with me to the acupuncturist and we shopped for christmas trees! And then Krishan called and it was so nice to connect with him.

I also woke up this morning thinking that this stem cell transplant is going to give me a second chance at making my immune system right. I wasn't born unhealthy...something happened between when those stem cells reproduced, and I got sick with serious allergies, and then cancer.

So I've toughened up, or softened up...depending on how you look at it. The energy has shifted in my body. And I dream of land and retreat and health. That wouldn't have happened if we had taken any other path.

I wanted to tell you about my spirit animal experience I had on Tuesday, but then I got on Patty's blog and she does such a very good job of telling the story plus giving great bits of inspiration...so please go here and read. The snake... Patty knows how to use words so eloquently, I just love reading her posts.

So I am doing pretty good. Now lets just hope that this isn't the steroids talking ;p But, when they wear off, I also believe I can deal with what comes. I don't expect all sunshine...but like Michael pointed out this weekend at the beach, the sunsets aren't as brilliant without the clouds.

chemo take two

2010-11-30T16:02:00.001-05:00

First of all, thanks to everyone who has taken the time to send messages and leave voicemails (I haven't been the best at responding). Your words give me strength and make me feel like I am on this journey not just with my immediate family, but with an army of folks who support me and love me, and that alone makes the world a better place and leaves me in a better place to conquer this thing.

I went to work today thinking I'd go and help tie up things, but it was hard. It is hard to go and realize that I can't be all and do all. Fortunately I work with a bunch of amazing people who can step up and take charge and pick up my slack. They are supportive and encouraging, and know I will be back to put my best foot forward (something that has been lacking for a long while).

So I start chemo tomorrow. ICE therapy. It is 3 days of chemo, I have a pump installed for a continuous infusion. Then I go back again in 3 weeks for more. I'll be sick again for Michael's birthday which makes me very sad (he is so sweet though and doesn't seem to care). Fortunately Lia has offered to share her birthday celebration with Michael in a couple of weeks--go karts and video games!! sounds perfect :). And Michaelle has offered to come over on Friday and bring cake and celebrate Michael even though I'll be sick on the couch. (sounds like last year!) I feel so lucky to have such amazing friends to pick up where I lack.

We hope that after two infusions of ICE that my PET will show no signs of disease. This is when we start the conditioning phase of the SCT. They will give me Nupagen to mobilize my bone marrow to produce stem cells. Then it will take three days to harvest my stem cells. Once that is done I'll have the atomic bomb dropped on me to kill every last ornery cancer cell in my body. I'll be in quarantine for the next month as they replace the stem cells and rebuild my immune system. This will leave me cancer free and ready to rebuild my new cancer-free life.

Patty today found an amazing story of the battle and recovery and the mind/body connection. I've been drawn to qigong for awhile, and my acupuncturist supports it wholly. I think there is something to this...http://www.bobellal.com/articles/standing-post-meditation/

So I look forward to my meditation group tonight with Mary and Patty and I am going into this next round with hope and positivity and I will visualize these drugs working to put down this disease in my body.

Next round...here we go...I am ready!

.

news

2010-11-24T18:15:00.003-05:00

I am typing this post after watching beautiful sunset with my family over the marsh at the Aerie. After the initial shock and emotional release, I am feeling amazingly calm for hearing bad news for the third time.   I asked Michael if I am handling this better because bad news gets easier to hear. And he says well, yes, that can be, or it can be that you are stronger than you have ever been (Becky fiercly confirmed this to me today too), and we know that we can keep fighting and move forward.   This is our path now, and it is what it is.

Dr. Hamrick delivered the bad news with most kind spirit. He said that the tumor has returned in my mediastinum (chest). But, it hasn't spread to other organs, and he says we are in the same place as we were this summer before the biopsy. I said, well, we gave it our best shot. He responded without any hint of ego, but just pure encouragement and faith with saying you did what you needed to do, and we will keep fighting to beat this.   I won't forget his kindness. He e-mailed me the PET results and said in the e-mail enjoy my Thankgiving holiday and we will begin to fight again next week. I read Love, Medicine and Miracles by Bernie Seigal this fall and think I lucked out finding a doctor who seems to fall into this special set of doctors who understand and embrace the doctor patient relationship.

So I am here with my family and I am going to enjoy this weekend for what it is...a celebration for the good in life. Love, family, nature, laughter, and relaxation in a beautiful place. ... a reminder for all that we are grateful for.

Part of me feels solid about going forward with this harsh treatment because I know we tried our best with the less toxic treatments. They didn't work, but at least I won't be years out from a stem cell transplant, suffering from the side effects, and wondering what would have happened if I just took those three months to see if other things would work.

This is the path we've chosen. And I am surprisingly okay with it. We held true to our beliefs, and still do.   There will still be fears, and sadness, and pain, but it won't last forever. And thank goodness I have spent these past months really working on the mental/emotional/spiritual side of my life because that will help make this whole thing easier.

So next week I start ICE chemotherapy in preparation for and high-dose chemotherapy and autologous stem cell transplant. This will heal me once and for all. And, we do have the best medical care available for recovery from these treatments.

Onward and upward. My deepest love to you all. I wish you a very happy Thanksgiving and you better believe I will be thinking of you with gratitude in my heart.

...and p.s.. I am signing off, and what song comes over satellite radio while my family is buzzing around making a delicious dinner? Shower the People you Love with Love by James Taylor. It brings tears to my sappy soul...

the Spectrum

2010-11-22T18:16:00.004-05:00

Today = fear and courage, strength and weakness, love and hate, joy and sadness, grief and relief, anger and release, gratitude and resentment, tears and laughter, doctor's offices and my feet on the earth. I am totally exhausted. Time for the couch, and a good book. I'm checkin' out.

The outpouring of love from those of you who sent messages to me today was amazing. I know we've been fighting this thing for awhile so thanks for staying with me on this journey.

I'll let you know when I hear something!

Thanks-giving

2010-11-21T12:14:00.002-05:00

Well, on the eve of my next PET scan I am finding myself in a place of incredible gratitude. I have cried several times this week...ranging all the way from fear and anger to being touched by incredible love and beauty. It is such an interesting thing...to experience the swing of the pendulum. Senses are heightened right now and I guess I am just holding on for the ride. What I have found is that I can influence this swing of the pendulum...I can catch air on the love and gratitude side of things...hang tight for awhile, and bask in that loveliness. And then fear steps back in, but I don't linger for long.

On the eve of this national holiday, Thanksgiving, I have many thanks to give. I thank my dear friends for their friendship. Lori, I loved loved loved our conversation this morning and look forward to the day when I can embrace you and we can laugh and play together and enjoy this gift of life. To M in Fl, your dedication and support...I have no way to repay you. It touches me deeply. And to Mary and Patty who let me cry and beat pillows, I am grateful for the love and energy you bring to me and our home.

Yesterday morning I was reminded yet again how deeply I love this soul mate of mine (not that that is hard...), and how much he loves me. I've been having trouble with my port access this week, and we've had to jerry-rig the IV to get the fluids in fast enough. I ended up having to do an IV on Saturday morning (long story...) but, because of this problem with the port Michael had to put the IV pole on the coffee table, and I had to lie of the floor to use gravity to our advantage. Instead of him leaving me and doing normal Saturday morning things he plopped right down next to me on the floor (even though his butt went numb--I used up all the pillows) and we made the most of an annoying time. We spent a couple of hours pouring over our wedding photos trying once again to make an album (progress was put on hold when our Mac Book pro was stolen in the break-in...not to mention the year delay with all the other stuff going on...). So we got to re-live that amazing weekend again. And then my friend Dee posted this video of facebook that immediately put me into tears...ain't love grand???

So with all the anxiety of the test tomorrow...which keeps liking to show itself, I am also feeling grateful for all that I have despite what the results will tell me. After the scan, which Augustin is taking me too, I get to spend time with my amazing grandmother for her 84th birthday, and then enjoy the holiday with my parents, my brothers, Michael's parents and Margie and Ray. Life is good. We are surrounded in love and good people.

Soul food

2010-11-12T17:46:00.002-05:00

Ahhhh....just had a lovely day with mom at the Piedmont Cancer Wellness Center. We started off with an amazing Qi Gong class, had lunch overlooking the city, and then let our creative juices flow at the art of Mandala making class. My dear friend Karen also came after a grueling morning of chemo...bless her. After we created our Mandalas, the teacher read to us about the 12 different stages of "the round" and which style mandala fit with each. Mine fit the 8th stage, the Functioning Ego:

ability to work comfortably in group settings, organizations, or alone, whichever is needed to accomplish your goals
inspiration becomes reality through great effort, and takes on a form that is seen and appreciated by others
you are actively engaged toward personal goals, living life on life’s terms, using the imagination to the fullest to create new and wondrous things
on the spiritual level, healing takes place through finding ways of sharing wisdom gently and respectfully with others, in ways they can understand

The description seems so great for the timing. And, my picture looks somewhat similar to the one I picked for my last post. I must be channeling that wavelength these days.

Mom's was the stage of Transcendent Ecstasy! That's a good one, eh? I wished I had taken a picture of her's to post here. I'll try to get my hands on it. But here is the description for hers:

"A change of consciousness – a feeling of fulfilment, of awareness of our relationship to a higher power, a sensation of rising from the earth in exultant joy. Images more often than not have an uplifting quality about them and contain only the one single image (although sometimes there tends to be a focal point implied above or near the top of the image). The images are powerful, yet playful. The task at this stage is to accept the gift of grace and to plant the seed for a new cycle to begin."

So another day of soul-food. I just can't seem to get enough lately! And these experiences, each one, gives us greater inspiration of how we look at moving forward. There is such a rich source of good people in Atlanta to welcome to the retreat to teach, lead courses, and heal people. We certainly are fortunate!

Happy Friday everyone, I hope you have a great weekend! I know mine is off to a good start. Now to get ready to have my brothers over for dinner tonight. Oh, how I love those boys and feel incredibly grateful for them.

PET Scan

2010-11-09T20:28:00.000-05:00

Well folks, the time is almost here that we've been waiting for. I finally bit the bullet and contacted my oncologist so that he can order the PET scan. I scheduled it for the Monday, November 22nd. I asked my doctor if he was going to be going on vacation that week which would delay him being able to give me the results, and he said no, other than Thanksgiving. So I hope to have the results by Tuesday or Wednesday. And then either way, I'll be surrounded by family for celebration, or support during the holiday.

Overall I am doing pretty well. I am working hard on keeping my energies pointed in a positive direction, and grounding myself in a way that releases the fear. It doesn't work all the time, but I have learned some wonderful tools to help with this. Meditation, energy work, acupuncture, plenty of sleep...I have found that this time the fear is sitting in my brain instead of my heart, and doesn't hurt as badly.

Scheduling the PET was very stressful and anxiety provoking, but now that I've done it, I feel a bit more sturdy. It doesn't hurt that Sunday I spent all day working on the spirit with my women's circle and a breathwork class, and continued right into Monday with an another amazing energy meditation and therapy appointment with Becky and meditation with Patty and Mary in the evening. And this morning I started the day off with acupuncture with the intention of balance. So I am trying to stay ahead of this emotion beast! haha. I am off for a warm bath after I get done typing this before crawling into bed with my sweetie.

My friend Lara just sent this link to me, it is so neat, I find myself mesmerized...I especially love the first song, the Gayatri mantra. Moving Mandalas

p.s. I got some test results back today and they look normal!! (now, granted, this doesn't mean there is no cancer, but abnormal means cancer....) And, my CRP, a marker of inflammation that I have been monitoring, is lower than it has been in YEARS!! Guess that helps justify the 87 pills I take everyday!

Here's hoping you all are doing well. My love and gratitude to you all!!

In the lap of Jesus

2010-11-02T22:14:00.000-04:00

Sunday afternoon a sweet friend of mine lost her battle against cancer--and boy did she put up a good fight. She is survived by her three teenage children and her deeply devoted husband, and the most loving and supportive parents and sisters.

I've typed and erased several things here, as I guess I am just struggling about what to say--I keep tearing up with memories and stories. Bottom line is Holly was a vibrant, loving and passionate person who's faith was unwavering. I am deeply saddened by the loss for her family, but know that with that faith she is now home with her maker.

I know we all have our crosses to bear, but I guess in times like this I always wonder why bad things can happen to such good people. Pointless to ask these questions I guess.

In the meantime I'll just be grateful that our paths crossed and I got to experience yet one more person on this earth who is good, and loving.

Sunday I went walking the land with my family and there was a part that was full of Holly bushes. I remember thinking of her so strongly, and I realized later that that was right around the time when she was making her transition.

Cancer takes a lot from you. So here is my blessing tonight...I hope for peace of mind, love and courage for all of those I know out there right now struggling with this disease, which is too damn many of you if you ask me! And I also hope that despite what it has taken away from you, you get something back in return. I know I did with Holly's friendship.

Much love and many blessings to you all.

time for an update??

2010-10-25T21:56:00.002-04:00

It has been forever, and I apologize for being so absent in blog land. You are so sweet to be checking in on me and seeing how I am doing despite my silence here.

Since I've left you I've visited the depths of fear and depression that comes from the unknown and the decision, but I have also recovered from that stronger than I have ever been before. I'll always remember the distinct moment when the fear left my body, and I'll be forever grateful to Becky for that. That fear was replaced with a tangible lair of safety in my heart, full of white light and love, and safety and warmth. I can still conjure it up now as I sit here.

We've been working hard towards healing with IV therapy, supplements, chiropractics, meditation and I've added in the mix a new doctor who is absolutely amazing. Not only is he managing all my inlets for health on the integrative medicine realm, he is also an incredible acupuncturist and Chinese Medicine doctor. I see him twice a week and leave there with waves of joy coursing through my body.

I've since celebrated my one year anniversary with my love and that weekend was a brilliant highlight to the wonderful reminder that is life and love. We celebrated with a deep connection and set intentions for this new year together. We even enjoyed cake (well he mostly...) from our wedding day, and bought for each other a crystal signing bowl in the chord C sharp for the root chakra.

Shortly after that we realized the passing of our one year anniversary of my first chemotherapy. I remember so vividly that day...we rode over together in silence, scared. But we made it through that day, and 10 others like it. And I survived. And I will again.

We've got the excitement of land on our fingertips. Mom and Dad, oooh, how I feel so incredibly lucky, are in the works to buy this amazing...utterly amazing...piece of property in North Georgia. This is a place of healing, you can feel it within in a minute of stepping foot on the property. I am excited for this, and day dream of the dream becoming reality...

So that is where we are now. Feeling grateful. Feeling at peace with where I am right now. ...and hoping I don't visit the dark side again. But if I do I know I have the tools to crawl out again. I am less than a month away from the next PET scan (still haven't scheduled it) but I am bracing myself for whatever it tells me. If I am cancer free, than YES!!!! Joyous celebration!! But if I am not, well, it is okay, I can fight some more and still win.

So there you have it! An update!! I feel like I have left SO much out but that is what being silent for almost two months will get you. hahah.

Oh, and I want to leave you with a video that touches me to my soul. We are all connected through the dance of life. We are all human, and experience joy, pain, love, and the dance...

Click on this link:
Where the Hell is Matt

And here are the lyrics:
Stream of Life
by Rabindranath Tagore
The same stream of life that runs through my veins night and day
runs through the world and dances in rhythmic measures.
It is the same life that shoots in joy through the dust of the earth
in numberless blades of grass
and breaks into tumultuous waves of leaves and flowers.
It is the same life that is rocked in the ocean-cradle of birth
and of death, in ebb and in flow.
I feel my limbs are made glorious by the touch of this world of life.
And my pride is from the life-throb of ages dancing in my blood this moment.

the letter

2010-09-03T10:49:00.005-04:00

Here is what I wrote to Dr. Hamrick this morning:

Dear Dr. Hamrick,

It isn't without great thought, and research that we've decided to take the path of less harm to begin with. I feel like if we give this a try for a little bit longer just to see what comes of it, then we will know. We can always move forward with the harsher treatment, but we can't go back. I hope you understand.

If I start experiencing any symptoms then I will certainly pay attention and step up to more tried and true treatments.

I ask a favor, will you order a PET scan for me? I'd like to do one end of October, beginning of November.

I am forever grateful for your patience and your guidance and support during this tough time.

All the best,
Eve Bralley

That is about all I have in me to say right now other than we are all very positive and hopeful. We have done extensive research and feel like we made this decision not out of emotion, but out of understanding and knowledge, and most importantly, out of love and the soul's speak. The people who want me to live more than anyone else in the world support and encourage this decision and we feel lucky that we have this option open to us, where many don't have it available.

Everyone always asks what they can do to help me, well I have an answer for you now. Help lift us up with positivity and encouragement. I don't want to hear negativity and I don't want to hear your opinions unless they support our decision. No one is more informed about this than my little medical team.

I'd like you to read this post by Patty, it explains a bit more: http://patriciabralley.blogspot.com/2010/08/sailing-off-edge.html

Onward and upwards! We are headed to visit Michael's parents later this afternoon, then a quick overnight camp and caving adventure in Chattanooga. I am going to pack Curtis with me on Tuesday after my IV and head to Kiawah to spend a couple of days with my parent's relaxing and rejuvenating in the magic of that place. Move into the Waaaah! (right Becky!) Decision making took a lot out of me, and telling my doctor what our decision was was also very tough. I need the magic now more than ever so I am looking forward to these next days of rejuvenation.

So, as Michael says, our decison is made! Let's batten down the hatches and make the most of it!

My birthday

2010-08-26T21:40:00.001-04:00

Well I have to say, my birthday ended up being just perfect. It didn't start that way, but thankfully I have such love in my life that you all were determined to make it end that way. So I thank you.

I started the day with a follow-up surgeon's appointment. I thought this would be quick, I'd be in and out because I seem to be healing very well from the surgery. Two hours of waiting in the waiting room later...the surgeon finally comes in. He immediately starts in on how he's talked to my oncologist and he strongly recommends I start chemo right away. Time is of the essence. I wasn't prepared for this conversation and felt sabotaged and was there with no one to defend myself but me. So that left me very rattled.

And again, these dang hormones...but I can't complain, I certainly brought it on myself. So I was fragile yesterday and very teary. Fortunately I got to talk for a nice long time with Rin, momma2, and that was nice. She makes me smile even though she is also going through a really tough time.

When I got to work Michael, my mom and my dad huddled, and we had some good conversations. And Michael, oh my goodness, all he has to do is lay his hand on me and I immediately feel better. His presence is so calming for me and I am so grateful for his strength.

I left work early for a birthday colonic appointment, and as much as I hate those, it seemed to also calm me a bit more. I guess it feels good to feel cleansed.

Anyway, I got home just in time to get dolled up for our big night!!!! Michael had made reservations for Woodfire Grill, an AMAZING restaurant. We've only been there one other time...for Michael's birthday. The chef was second place winner for Top Chef fall of 2009. His theme is based on the use of local foods and sustainability. We ordered the 7-course chef's tasting....and...oh....my....goodness...I don't think I've ever had such yummy food. It was the most romantic night we've had in a very long time and I had a smile on my face from ear to ear the entire night.

So as I was going to bed last night I was happy. This is a new year, full of possibilities. Full of hope.

I thank all of you for the love and sweet messages and cards and presents!! I love you!! You are certainly special to me.

just breathe...

2010-08-23T17:28:00.001-04:00

I am having a hard time coming up with titles for my posts lately. They all revolve around decisions or updates or waiting...This one is no different...haha...maybe a title will come to me by the time I finish the post.

I am recovering noticeably each day from they surgery. Every time I show people the pictures they say, wow! that came out of you? And I say, yes! through my rib cage...no wonder it hurts so bad! haha. But, I am able to lie down and sit up by myself now and decreased my pain meds from a gazillion a day down to only one on Saturday morning, one Saturday night and one Sunday morning. I am now on Advil...watch out world! I don't know how Michael feels about it because apparently I kicked him HARD twice last night...the opiates I guess gave me more restful sleep anyway. But I am grateful to be noticing improvements.

I had a nice weekend and actually LEFT MY HOUSE for a little bit. Can you believe it?? It was nice to see friends and hang out with Augman, and have a really nice low-key family birthday party at Margie and Ray's on Sunday. (Don't tell but I even had wine AND cake!) yeah yeah, it is my birthday and I am going to celebrate!

This morning, after a rough one of choking on my vitamins and dealing with the 15 minute ordeal it takes to get them unstuck, Michael and I made it to Dr. Hamrick's office. He had the results of the biopsy and ...duh duh duuunnnnn.......sure enough, it is Hodgkins Lymphoma. What has changed is the morphology of the disease. It is now nodular sclerosing, where before it was mixed cellularity, and the CD 68+ macrophages have GONE DOWN!!!! WhoooooooPeeeeee!!! I am now a category II risk instead of a III on a scale of I-III.

So where does that leave us? Well, Dr. Hamrick is ready to get started ASAP. Like this week. He explained to me the ICE regimen. Three days hooked up to a chemo pump. We'd only have to do 2 rounds now instead of 3 because there is no evidence of tumor in my body as the surgeon removed all that was lighting up on the PET. Then off to high-dose chemo and stem cell transplant.

I started freaking a little on the inside in that office. He was so confident, ready to go, let's do it. And I was like, WAIT, we don't have to rush now do we??

So I started to tell him what was on my mind, and of course I started crying, so Michael comes to the rescue yet again and explains everything else. i.e. we might want to stick with alternative for awhile just to see where that will get us...etc.

Dr. Hamrick was as nice as I could hope for. He is going to call the bone marrow specialist guy to ask him to speak with me again to talk about all of the side effects again. I need to hear some good stuff after stem cell transplant, because my latest thing I heard was someone had permanent hearing loss!

In the end Dr. Hamrick said he would support any decision we make, but he strongly suggests we take his advice.

.....do...you....know...how...hard...it...is..to go against his advice?

I have been numb most of today. Well, aside from the 30 minute crying jag I had when I got to Progressive for my Vitamin C IV. Thank goodness for the love there. The IV room is a safe space for experiencing life in all of its joys and sorrows. A dear friend of mine who has had to face the same decisions as I have and is still in a great struggle came to my side today and prayed for me. It was so amazingly beautiful and she gave me the gift of peace. I will always remember it.

So here I sit. Again with having to make decisions and feeling well, kinda just pissed. Angry. Upset that I have to deal with this shit.

And I think it is finally sinking in the realization of ALL I HAVE GONE THROUGH in these past two weeks. Fertility visits to the doctor every day, egg harvest, PET scan, major surgery, and now a hundred other appointments and discussions I have to have regarding what to do next. I was just doing before, and now that it is done...well, time to decompress.

Well, not much time, because we've got to get a plan together! Patty's already on the collection phase of all the articles we've read and discussed put together in one place highlighting the reasons that support the use of alternatives. I have an e-mail in to Dr. Drisko to her advice, and of course I am going to talk to the bone marrow doctor.

And of course, all this emotional upheaval I am feeling right now might be stemming from the fact that all those little 17 eggs that were growing and producing estrogen are now getting me ready to bleed a very big bleed. I am feeling PMS'y so I might just come back strong after all this and laugh at how hormones can mess with your mind.

I think I am going to go back to Piedmont Cancer Center tomorrow. It is a place that makes me happy and supported.

Wednesday is my birthday and despite my surgeon appointment and a colonic Michael has something up his sleeve for me. I am excited. At least I won't be in surgery like I was last year! See, there is always an upside.

I want to thank everyone for your e-mails and advice. I also want to apologize from the bottom of my heart that I haven't been able to keep up with responding to you. Know that your love is received in the greatest sense of gratitude.

P.S. I went to look for a photo and breathe came to my mind...here is what I found, and just breathe is what the title has to be!

good news comes in threes!

2010-08-19T12:00:00.002-04:00

We get three pieces of good news in one week! I think this is some sort of record! But the surgery went well and the surgeon was able to remove the entire tumor! Now, he says this doesn't mean that I am cured as Hodgkins is a systemic disease, but at least we don't have to debulk a bulky tumor! And, of course, I keep calling it a tumor, but there is a small chance that it isn't even Hodgkins, so we will know in a week when the biopsy results come back.

Yesterday was quite the day. Mom picked me up at 10 am and we headed to Northside Hospital. They took me back to the pre-op room and I sat there by myself for about 30 minutes before the nurse came in. I was scared and started to tear up but then realized this was just one more opportunity for practicing relaxation and controlling my brain. So I got in my little hospital gown and sat on the bed cross-legged and meditated. When the nurse finally came in my BP was 120/72!!! I was so proud of myself. So she hooked me up to IV fluids and my mom was able to come in.

Mom was SOOo so fantastic yesterday. She was a trooper and in for the long haul. Initially we were to be there by 10:30, surgery from 12:30-3:00, and recovery for 2 hours. But the surgeon came in and said that the OR that we were to use had an emergency case in it and my surgery would be delayed by 3 hours!! So mom hung tight with me, while dad exchanged text messages with us. It was as nice of a time as you can expect for something like that.

When the surgeon was talking to me I asked him why he can't just remove the whole thing, and he said, well, he will try, but the tumor is located in such a dangerous area for cutting--snuggled up to my heart, next to my lung, and right by the superior vena cava. He said I had a better chance because I haven't had radiation, which can cause scar tissue.

So I went into surgery and woke up sometime later with him showing me pictures of the ENTIRE tumor!! I was so happy, despite my anesthesia related crying fits. Once I find a scanner I'll scan the shots and post so you can see. The tumor looks like a turtle! He showed the before shot and he had to cut through all of this connective tissue that the tumor was pulling on my lung. Kinda scary.

Anyway, the surgery lasted longer than we thought, and my poor mother was out in the waiting room getting pretty nervous. But thankfully the surgeon came out and said everything was fine. Michael joined her at that point and they met me in the recovery room.

I had a real tough time with nausea, but passed all my other tests like walking by myself, peeing and drinking water. So they decided that I didn't need to stay overnight and discharged us around 10 pm. My nausea finally abated when I got home and dug out some chemo anti-nausea meds. Thank goodness because I was in such pain that I need to take a pain pill, but I couldn't get anything down until the nausea went away.

Last night was a crazy one, and I thank the stars above for that incredible man of mine. I am in such pain that I can't sit up or lie down by myself. So he is right there by my side to help lift me. I woke him up at 3 in the morning when it was time for another pain pill, but he had to make me some food for me to take it with. So there we were, laughing (well, me trying not to laugh because it hurt) that we were sitting in bed while I sipped mushroom broth and ate saltine crackers while he rubbed my aching back in the middle of the night. I am so lucky to have him.

This morning he stayed with me until about 11, and mom and dad will be here about 1. So here I had a few minutes to write to you all and give an update. I am a little loopy, but grateful for a bit of relief from the pain. I have a call into the doctor to just be sure it is the normal kind of pain and nothing to worry about. (you know me, I like to worry).

I can't tell you how blown-away I am by all of your facebook comments and love you gave me yesterday. It definitely put a happy light to my day.

And we celebrate again for the successful removal of whatever mass likes to light up so brightly on my PET scan!!!

Love to you all, now time for rest.
Evie

Good News!!

2010-08-17T10:11:00.001-04:00

Dr. Hamrick, bless his soul, called me first thing this morning and said "Ms. Bralley, I have good news...your tumor has not spread, it basically looks the same as it did 2 months ago. "

It isn't gone, but I'll take it!!!! Neither of my dreams came true, haha, we found middle ground. We've halted the progression of this thing in a safe way. And this gives us such encouragement for going forward!!

So back to decision making, but for today I am just going to celebrate!!!!

I am shaking all over with joy.

Now I am sending all that happy love to my new sister Dawn and hoping she hears good news today.

another wait

2010-08-16T17:06:00.001-04:00

I can't tell you how loved you all have made me feel these past days (and always!!!!). Your e-mails, and your cards, your phone calls, and your presence in my life help during this crazy time. I know I've said it before, but we truly are on a roller coaster ride.

The ups: I got the call on Sunday morning reporting on the egg harvest. I had 13 eggs retrieved, 9 were mature, and 5 fertilized. So, as mom says, we've got five little blueprints :) I like that. I heard the news when I was surrounded by some of my favorite people in the world. And of course I broke down crying. I was crying because I was happy for the successful completion of this ordeal, I was crying because it was one stressful ordeal and it is over, I was crying because it meant that we now have to face the reality of what is next, and I was crying because I got to hug that sweet lover of mine and feel his love so deeply. Michaelle, Lia and Claire were there to hold space and Michaelle raced to my side and let me cry all over her too, I just love those girls. Today the doctor's office called and said that we've had another successful fertilization after one more day, so that makes 6 total. So our options are open.

The downs: Well, the PET scan was this morning, and there is no escaping the stress from that. And now we wait again. I went to my past PET scan by myself and realized that was a huge mistake. Even if something like that seems like no big deal (it isn't painful at all) it IS a big deal and I realized I needed support. And so my mom was right there with me by my side, no questions asked. She picked me up, we rode together, and then she waited for me in the lobby for 2.5 hours. So it is done. And we wait. I do have the disk that has the scan on it..and I am tempted to look at it, but I am also terrified to. So we'll see. ...

I had my pre-registration appointment for the biospy surgery on Wednesday and then mom came with me to Progressive for the C IV. So it has been a full day of medical again. But that is life right now.

So I wanted to get on here and let you all know what has gone on. I'll let you know tomorrow when I hear something!

My most gigantic love to you all!!

The Count

2010-08-14T11:15:00.001-04:00

13 eggs harvested and Michael's swimmers look good! We'll know by tomorrow how many embryos survived. All went well and was uneventful just how we like it :)

Dreams

2010-08-12T13:07:00.000-04:00

Psyches Dream by Josephine Wall

Last night I went to bed and dreamed that we had the PET scan and the results showed I was cancer free. We were all celebrating and happy, it was a beautiful dream! I woke up and thought, wow! I hope that is a good premonition! And then dozed off again...where my dreams took me to the PET scan again. I was in the room while the radiologist was reading the results and we saw the PET light up all over my body, and even in my brain. And it was really scary. So I went on to therapy, but was surrounded by all these other people my age going through the same therapy and so it didn't seem as scary. ...And then I woke up.

So who knows what dreams are supposed to mean...

The Medical

2010-08-11T22:01:00.002-04:00

Two posts in one night you say?? What can I say, I guess I am on a roll. But, as interested as I am in the mind, I know many of you want to know the medical update as well.

As of today I have 13 follicles ripened and ready for the picking! They plan to take the eggs on Saturday morning and we should know how many embryos we will have by Monday. The whole thing is still kind of strange to me..the idea of making frozen babies. But hey, there is a lot that has gone on this year that seems strange to me. Regardless of all of that, this experience has been quite an amazing one. First of all, it has bought us time to really do the due diligence needed to feel good about our decisions going forward.

Secondly, it has allowed me to meet the most wonderful group of medical professionals that I have come in contact with yet. The crew at Reproductive Biology Associates is amazing. Everyone there from my doctor to the nurses to the ultrasound ladies to the billing specialists are nothing but heart. I am blown away by this and visiting them everyday these past two weeks has become something I look forward to. It is like walking into an office full of smiles, encouragement and love each morning. I have had to talk to the nurse on the phone so many times I can't even count and she never got irritated with me!

And finally, it has shown me yet again how much Michael loves me. I was ready to hang up my hat and get started with treatment several times, and it was he that encouraged me to keep going as he knew this was something that we needed to do to make these next months more bearable. He is steadfast in his love and support for me and I tear up every time I think of how good I have it. (although it was like looking at a deer in headlights when I told him yesterday that we had 13 follicles developing! haha, I could tell the poor boy had flashes of Cheaper by the Dozen movies running through his head). P.S. 13 follicles developing doesn't mean that many eggs. They hope to get 6 or 7 out of these to use for embryos.

Okay, so that is the egg story.

The rest of the story....

Well, we are in a holding pattern. These two months have sent us on a crazy journey of discovery. I mentioned in a previous post that my biopsy results came back with putting me in the worst category of Hodgkins patients based on the CD68 + cells. Initially we thought this was a good thing to know so as to avoid stem cell transplant. We were going to go to MD Anderson because they offer alternatives and clinical trials. Which they do. BUT, only for people who have relapsed after high-dose chemotherapy and stem cell transplant. BOMB number...how many is this by now? I am amazed at how receptive these high-up doctors are to answering my e-mails. The ones at MD Anderson basically said stem cell is the best thing for me to do.

And this is after I heard from two other doctors as much.

So....

Where we are sitting right now: I have been doing high-dose Vitamin C IVs now, 5 per week, for several weeks. I have been taking 5-6 grams of curcumin a day, 2 grams of resveratrol, low-dose naltrexone, and hyperbaric chamber among some other smaller things. I feel like we are giving the alternative medicine the good ole college try. And I truly hope that the cancer is gone when we go to look for it on Monday. Or at least shrunk..or even not grown at all. This would be really really really good news.

But, I am being a truthful optimist, as dad would say. I am preparing myself for the result that I don't want to hear. And if we do hear that, I have found a peace with accepting high-dose chemotherapy and stem cell transplant. I know this was what we were set off to do from the beginning, but it feels really different now. Like I am deciding not from a place of fear, but a place of knowledge and understanding.

So, we wait. I liked Patty Bralley's post today. We are waiting. Good or bad, it will be nice to know what is next.

The schedule:

Saturday, egg retrieval

Monday, PET scan

Wednesday, lymphnode biopsy (just to make sure we know what we are dealing with!)

And then...our path will unfold.

The power of the mind

2010-08-11T21:20:00.002-04:00

http://chancetoheal.com/tag/guided-meditation/

So, where to begin. Well, I'd first like to say that I am feeling like I am in a good place finally. It certainly has been one heck of a roller coaster ride, and continues to be. But something has shifted in me these past two months that is beyond words.

On June 15th, when I heard the results of my PET scan, my world fell to pieces around me. And since then we have been through the ringer with ups and downs, each down taking an immeasurable hit. I have had a very difficult time working, and have become consumed with the "what next". It became quite clear to me, clearer than ever before, that if I don't find some way to cope with stress and bad news that I wasn't going to make it. And so I set out to find a way to cope because not making it is not an option.

In these past two months I have become very good at my second job...managing my life--which really has become my first job. I've already mentioned the strain of the many doctor's appointments and all that is associated with that, and the research, and the second opinions, and the decisions, not to mention all of the treatments and procedures I've done. In addition to all of that I have sought out help in the mental/emotional/spiritual realm. And it is here that I have discovered tools that will help me the rest of my life. It is here that I have become empowered because I have now seen how I can change the state of my mind.

...and I did it last week...and it rocked my world...long story but I got bad news (again) and totally flipped out. But I got a grip, and turned the mind around. And it ended up being okay after all.

I still have a lot to learn, but I am happy to see the progress so far.

What I have learned...I don't have to be afraid of my emotions. I have always heard that a positive attitude will heal you. And so every time I got sad, or scared, or angry or cried, I would immediately begin to judge myself for not being strong enough to power through with positivity. But thanks to those of you out there helping me with this, you've let me realize that I can feel all of these emotions and it is okay. It is okay to feel sad, angry, scared and it is okay to cry. And it is interesting, once I am given permission, the feelings arise and flow through and out of me and I feel better. I am not fighting them anymore, and in a way, it gives them less power. So here I thought that the exceptional patient (I am reading Love, Medicine and Miracles by Bernie Seigel, excellent book!) lives in positivity, but really I was understanding it wrong. In order to reach a state of positivity, you must be truthful to yourself and allow thoughts to come in and out. If you don't let them flow through and out, then they get stuck and you continue to feel those emotions. Becky, I can't thank you enough for this gift.

I am also learning the power of meditation. Truly this time. Intellectually I have always understood the benefits, but I've never really experienced them. I've given up to boredom, or frustration of the noise in the head. But this time it is working as an excellent tool to help me calm down, maybe because I've never been so wound up, haha. I've been doing some group meditations too, and wow, the energy bonus of that is amazing.

I've been practicing different kinds of meditation too. Quiet, with a mantra (taught to me by my parents). Heart-focused meditation with breathwork (taught to me by one of the therapists I am seeing), guided meditation, and energy meditation allowing for any kind of movement or sound that feels like escaping. Now, this last form of meditation is particularly scary to me, it always has been. But I am finally getting it. I am tapping into that soul energy that needs to move and it is powerful. I even screamed at the top of my lungs several times in one assisted meditation. And as rattled as it made me, it needed to happen, and I became more fluid, and more grounded.

Michael and I have been doing energy work together and visualizing my tumor gone. I woke up one morning convinced that Michael had healed me. Whether or not this is true, it is such a sweet connection for the two of us. No harm can come from love shared full of good intention, right?

So I am seeing therapists, I am doing group work, I am working on my own and with Michael, and I have sought out support groups. Piedmont Hospital has an excellent program for cancer patients, survivors, and friends and family. I even applied and was accepted to attend Wind Rivers Retreat, a retreat for cancer patients. And, the women's circle is starting up again in a couple short weeks. I've missed those women!

I am really working on myself here, and this is just the beginning. In less than a week I have my followup PET scan, and I need to be ready for whatever answer it gives. ... so here's to taking deep breaths.

Good news!

2010-07-28T15:00:00.000-04:00

I found out today that my ovarian cyst has shrunk, and my estrogen has come way down! So the doctor has given me the go ahead to start the medications! So in two weeks'ish we should have egg harvest!

the universe slaps us in the face...

2010-07-27T17:47:00.002-04:00

Well, within an hour of writing that post I heard from the doctor who led the CD 68+ research and he replied to my question on his opinion in my case. He of course couldn't answer me specifically without seeing me, but he said the best chance for survival is the high dose chemotherapy with stem cell transplant despite macrophage content.

And then, minutes later I check the mail and I got a letter from Dr. Gonzalez in NY who I'd applied for a second opinion. He said that cure rate for standard treatment for Hodgkins was too great for him to recommend nothing but that. So he won't see me.

So two doctors within an hour recommend stem cell transplant. And stem cell transplant has a probable chance of not working in my situation. Great.

the path

2010-07-27T15:58:00.003-04:00

For some reason this time around I've been much less vocal here on the blog. I don't know the reason other than the fact that I am totally consumed every single day on thinking about myself, and my options, and my treatments, and making lists, and crossing things off lists, and making phone calls, and researching, and reading, that I don't feel like spending more time thinking about myself by writing updates. But, a benefit from this is that my endurance for such things is dramatically improving. I think of it like I am training for a marathon, and reaching that point when you realize, that yes, I know I will be able to do this! (not that I've ever trained for a marathon). What's one more mile...what's one more call to an insurance company...

Maybe another reason I am not posting is because we still don't have the path carved out for us yet. Although as I type that I realize the absurdity in that statement...I mean, I am on the path that I am supposed to be on, as I feel it deep within my heart this time. Just because decisions haven't been made doesn't mean that the path isn't chosen. The path right now is inquiry, discovery, education, and listening to that place in my being that knows what is right, and not rushing into treatment out of fear. And boy do I have one hell of a team to help me with this. Patty Bralley has proved to be my first hand woman in this detail. Her mind for science and research, and her ability to synthesize and summarize for me is a blessing beyond measure. Not to mention the fact that she is there for me emotionally too. What an incredible combination.

I feel from the depths of my soul that I will beat this, that WE will beat this, but I see that it won't be an easy road. In exchange for that however, I am getting the best education I can hope for--I am learning about all things cancer--acceptance of diagnosis, biology of the disease, perseverance of heart, attention to that intuitive voice inside, love, the power of the mind, strength from others, and a fighting spirit. I am hopefully learning skills that someday might help others going through this. Because truly, unless you've experienced it, you don't know.

I am in a totally different place than I was 11 months ago when I learned I had cancer. Then, it was scary as hell, but there weren't many choices to make. ABVD cures 70% of Hodgkins patients. And I coupled that with a healthy diet, high-dose Vitamin C IVs, supplements, and hyperbaric oxygen therapy. The cards were stacked in my favor. So why the relapse? Well, right now I am sitting in a place feeling like there is just more to learn in this experience. And there are a hell of a lot more decisions to make, which is an exercise of the mind, the heart and the body in itself.

An interesting article came out in the New England Journal of Medicine in March of 2010. And yes, this is one of those journals that traditional MD's pay attention to. Patty armed us with this paper before our meeting with the bone marrow transplant doctor. Basically what the researchers discussed is that the treatment of Hodgkins Lymphoma hasn't changed in over 20 years. They have no good markers to determine how well someone will respond to treatment, so most people end up getting too much of the destructive treatment just to make sure bases are covered. And even then, 30 % of people either never reach remission, or have early relapse (me). These researches however have discovered something that can separate those who respond well to treatment compared to those that don't. By measuring the amount of CD68+ macrophages in the tumor mass, they can predict response to treatment. The more CD68+ macrophages, a statistically significant increased chance of relapse, a poorer chance that one would respond to a stem cell transplant (which is what they want me to do), and an overall poorer survival rate.

So we asked the bone marrow specialist to look at my lymph node biopsy that was taken in August of 2009. It is amazing that they still have it, but they do! And the doctor had heard of this study, so he was fortunately on board.

Now, arming ourselves with what these results might mean....Patty was originally afraid to share this paper with me because it talks about that percentage of people who aren't cured from this disease...But really, after reading, it seemed like a very important piece of information to know before embarking on this incredibly serious treatment regimen of chemotherapy, stem cell harvest, high-dose chemotherapy to kill bone marrow and stem cell transplant that will permanently diminish my quality of life by way of chronic fatigue, headaches, memory loss, sexual dysfunction and menopause, not to mention that I will have a 6-fold increase in my chance of getting leukemia eventually (this was what was told to me in the little booklet the stem cell doctor gave me at the appointment).

So the doctor ordered the test and the results came back...I am in the highest risk group, the group that has greater than 25% CD68+ macrophages in the tumor mass.

That bomb drops...like so many bombs I've received in the past year.

...but as we have time to process, a few things come up...one, we aren't really that surprised. In my mind it comes from logic...I mean, we did what we were supposed to do, plus some. And it still came back. In Patty's mind, it isn't logical at all, but intuitive, and she actually feels good about the news. As does Michael and my parent's. GOOD. We feel good about the news...

It is a strange place to be sitting in. I find out that the cancer that I have is one of the more dangerous forms of Hodgkins, one that has a poor response to the standard treatments. Yet, I responded initially very well to ABVD. I had gone into remission. So there is still hope.

It is good to find this out before heading down this path of stem cell transplant that will take my immune system and beat it to the ground. We interpret this as a NO... stem cell transplant is not the answer. This is a major big assault on the body, and to find that I might not even respond to it makes me fiercely want to explore other options.

And so we come to MD Anderson Cancer Treatment Center in Texas. They are well-known in having specialists for many different forms of cancer. There are two for Hodgkins. I read a transcript of an interview with one of the doctors and was impressed. Her vision is that one day we will find the personalized treatment of this disease. They incorporate many more therapies besides the standards that we are exposed to here. And that interests me greatly. So we are set up to travel to Texas to have an appointment to see what they have to say.

This is one avenue. We have looked into many many more. I have reinstated high-dose Vitamin C IVs 5 times per week and my oncologist has ordered a repeat PET scan so we can see if there is any impact of these on the tumor. Michael has been trained by a nurse to give these IVs to me at home, so I am now calling him nurse Michael :) I have also added curcumin in gram doses into my daily regimen (something an MD Anderson oncologist is studying and finding good results in pancreatic cancer). Diet..don't even get me started....raw or not...but we've decided not, as Chinese Medicine says Cancer is a cold disease, and you need to feed the body warming foods, not raw.

I am seeking/researching second opinions from these clinics:
http://www.dr-gonzalez.com/index.htm
http://www.gaynoroncology.com/
http://www.euro-med.us/
http://www.mskcc.org/mskcc/html/69402.cfm
http://www.burzynskiclinic.com/

I am also working a lot more with energy movement. I could write a whole post about this and have had some pretty amazing things happen since trying this. It seems crucial to my recovery, and I will expand more on it soon. But it is big, and important. And too much for my energy level to verbalize right now...

And finally, about the fertility preservation...I went in on the first day of my period to get an ultrasound and blood work for the go ahead for the two-week process. This was on the weekend of Transformus, the most mind-blowing event I have ever been to, but had to decline this year because of all of this--instead I am at the doctor, a hard pill to swallow. The nurse found I had grown a 3 cm cyst that wasn't there on initial work up on my left ovary that was producing estrogen 10-fold more than what they need to see to do the procedure. So the doctor put me on 10 more days of birth control pills to hopefully shrink the cyst. I find out tomorrow if it has gone away. If so, we can go forward. If not, I am abandoning the whole thing and moving on (even though I have $6,000 worth of donated fertility drugs in my refrigerator right now, thank you Lance Armstrong and EMD Serano.)

So that is the update, in a nutshell. It seems like a long read, but is nothing compared to what we've been living.

My team is amazing. Amazing. Gifts come in so many ways. Mom and Dad are right by our side every step of the way. We talk every single day, and their open ear mean the world. They have been incredibly gracious in relieving the gigantic stress of money and cost of this whole thing, which is huge. My dad showed us his fatherly love by buying and installing us a home house water filter. Patty, like I mentioned, is right there and is fierce in her dedication and love. Michael of course, ahhh, my sweet love, who keeps me sane, and lets me laugh, and cry, and live life. Becky, I thank you for allowing me to scream, and Margie, your love is strong. Rin and Chuck, you are my second parent's and I couldn't be more lucky. My love is with you and your family as you also walk the rocky path. And Grandma, she is just so incredible, she's been showing her strong love with Reiki and heart. There are so many people that I need to thank over and over again. I've received amazing medical advice, kind gifts in the mail, sweet letters, and lots of hugs. I could never do this without all of you.

And this post was possible thanks to the space that was made for me because our water heater died and I had to leave work early to let the workmen in to replace it. So thank you water heater for breaking--a post was overdue...And thank you Michael for allowing us to pay for someone to install it so I can spend more time with you, instead of you having to fix in on your own, which I know you could!

don't wear fear

2010-07-13T17:40:00.000-04:00

I am at home after two long days at 4 different doctor's offices. I have a couple of hours before Patty and Mary come over for meditation, and a storm is rolling in. I am making pickles from our gazaabs of cucumbers from our garden and am working on feeling happy and content. And then Cat Stevens comes on over Pandora. I've loved loved this song forever and every time it comes on I smile. And it didn't fail me today.

Cat Stevens Don't be Shy

Don't be shy just let your feelings roll on by
Don't wear fear or nobody will know you're there
Just lift your head, and let your feelings out instead
And don't be shy, just let your feeling roll on by
On by

You know love is better than a song
Love is where all of us belong
So don't be shy just let your feelings roll on by
Don't wear fear or nobody will know you're there
You're there

Don't be shy just let your feelings roll on by
Don't wear fear or nobody will know you're there
Just lift your head, and let your feelings out instead
And don't be shy, just let your feeling roll on by
On by, on by, on by, on by, etc.

http://www.youtube.com/watch?v=6ycjX3rLzyE

horoscope

2010-07-13T16:42:00.003-04:00

well, whether or not you believe in this stuff...reading this today sure gave me the extra boost I need right now to keep on going. This is from Rob Brezsny's Astrology Newsletter.

VIRGO (Aug. 23-Sept. 22): I want to see your willpower surge and throb
and carry you to a ringing triumph in the next two weeks, Virgo. I hope to
be cheering you on as you complete a plucky effort to overcome some
long-standing obstacle . . . as you put the finishing touches on an epic
struggle to defeat a seemingly intractable foe . . . as you rise up with a
herculean flourish and put the stamp of your uniqueness on a success
that will last a long time.

Pretty awesome pep talk, eh?

I've been quiet here. Lots going on, but not feeling like writing about it. Basically I am either at the doctor, or making doctor's appointments, or talking to insurance companies, or pharmacies, or filling out applications, or getting medical records, or second opinions, or tracking down information. And then doing it all over again.

the reality

2010-07-03T14:58:00.002-04:00

What a crazy roller coaster life has been lately. My mind reels in a hundred directions, with the constant reminder that toxic thoughts will make this whole process more difficult. So this go around I've realized that my mental health is as important as my physical health for the positive outcome that I know we will achieve. Fortunately I am surrounded by people who can help me with this. I feel like we are fighting a war, and we've got one hell of an army! Everything from the scientific/medical team, to the mental/emotional team, to the health/healing team. And I truly believe that all of this, once I reach the other side, will make me a better person... and one who will be able to help others like me one day. Because if I have learned one thing, it is much easier if you don't have to do this alone. And I've found support in unlikely places too...like from people I have just barely met who've opened their heart to me, and I am touched beyond belief.

Patty has turned me on to the teachings of Byron Katie, and as new as I am to her, the central dogma of her philosophy is that wanting our reality to be different than what it is causes pain…so just accept what is. And strangely I get some relief from that. With this calming, it seems I can make more rational decisions and actions as to how to merge the desire/reality path.

So what is the reality right now? My last post seemed pretty definitive, but, well, what is the saying?? "A woman who doesn't change her mind doesn't have one." Well, I guess I can't say I've changed my mind, but I've opened it up to more possibilities. The whole process of stem cell harvest, high-dose chemo, and then stem cell transplant with quarantine sounds pretty scary. They are gong to kill all of my bone marrow (let alone all the other damage it can do), and rely on the cells they harvest to make me whole again. I know that this has been a very successful treatment for many, and is groundbreaking and life-saving. I am incredibly grateful for the research and science that has made this possible as it might be what saves my life. But I've taken a step back and want to see what else I can possibly do to not have to go through this.

This whole fertility issue has actually bought us some time, which, upon thinking about now, is a blessing. I have these weeks to not sit idly by, but to do something, and we will see what comes! We've decided that I am going to work on implementing a raw foods diet, increase my Vitamin C IV's to 4 times per week (Dr. Drisko has seen people who have relapsed go into remission purely from this alone), add in things like higher dose curcumin (thanks Dr. Hartle!!), and other polyphenols that can dampen the inflammatory response. It is a bit ironic that my graduate work might be just that that helps save my life.

Patty found a really interesting article on Hodgkins and it shows that there are very few cancer cells in these tumors, and the cancer cells are surrounded by inflammatory cytokines and other inflammatory cells that actually fill out the tumor. So if I can dampen the inflammatory response, I can slow the growth of the tumor! I am going to do heavier detox with saunas and exercise with nutrient support. And once I can get my eggs harvested (end of July) I'll head to a raw foods retreat center in Ithaca, NY. I lived/worked there in 2002 for a summer, and know it as a place dear to my heart, and good for healing of the best kind.

I am going to work on the emotional aspect of all this too with meditation, counseling, and group work. I've been introduced to new healing modalities such as NET and chiropractic work, homeopathy, and spiritual development. I am finding this as critical as the physical health aspect.

I am ready to cleanse the body and mind so that it is ready for whatever life has to throw at me.

After these things I hope that my oncologist will give me a script for another PET scan to see if any of this has made a dent. And then we will decide what to do.

So there you go...that is reality for now. Who knows if it will change, but I am not going to worry about that now...

Happy Fourth!

The Update

2010-06-27T21:13:00.000-04:00

So, I am sure all of you are wondering what is next. That is the logical question.

I was grateful to have the weekend away in New Orleans for Amanda and Mark's wedding last weekend. It was a perfect escape of reality. I was surrounded by the magic of two souls in love, amazing friends, old and new, and of course, my sweet husband who I absolutely fall in love with again and again, hundreds of times a day. I feel like I have won the lottery finding that man for all of the love and support he gives me every second of the day.

So we come back to reality, and it hits hard. Like an atom bomb. But there are no choices in the matter, you move on, that is what happens. Time ticks on, and you live it.

We met with the reproductive specialist on Tuesday. It is likely that the next treatment will put me into menopause. It hurts to even write that, let alone accept it. But that is that. There is also the chance that I'll be fine, and bleed until I am in my 50s. Life is a crap shoot. But, with odds like they are, I wanted to meet with a doctor to give me my options.

We talked for an hour and a half, and the best option seems to be to freeze embryos. As it happens though...the lab that makes these embryos from my eggs and Michael's sperm is closed two weeks a year for quality control purposes. And guess what? The lab just happens to be closed during the two weeks I need them. So, I could start this process tomorrow, but because of this, I have to go on two weeks of birth control to accelerate my next period. Once I bleed again, they give me hormone shots for two weeks and can then harvest my eggs. And then the next day I can start treatment.

So AGAIN with the medical decision making. This is so stressful. Should we wait a month to start treatment again, or start treatment this week and risk the possibility of never being able to have our own children. We haven't even decided as a couple as to whether or not we even want children. I feel like we have to make this really serious decision in a week.

But, we, as a couple, have made the decision. We are going to try for the egg harvest. Having the eggs doesn't mean we have to decide right now as to whether or not we will have children, it just leaves our options open. I know many people might judge me for this because it postpones my treatment, but I have to follow my heart. It is what I have to go on right now. And he supports me 100%. Our decision has come from hours of the most intense yet loving, conversation. The kind that is pure and from the heart--on both sides. We aren't playing around anymore, life makes you grow up fast and make some hard decisions.

I go in tomorrow for blood tests to make sure my ovaries are even functioning well enough to try the harvest. If those tests come back showing poor ovarian function, the point is moot. But if they are fine, we are going to go ahead with the process. We feel like it will keep our options open and might make these next months of treatment less stressful. I've talked to my oncologist about this, and he seems fine with waiting unless I start experiencing symptoms such as drenching night sweats, rapid weight loss, pain, or itching (I had this before, my body itched all over). So far I have none of these symptoms, and he said we only detected this because of surveillance, not symptoms, so he feels more confident to wait. I've actually been feeling really good. I am kicking ass in boot camp, feeling great energy, and I haven't suffered from seasonal allergies, something that has plagued me for over 10 years. It is amazing!

An endearing part of the whole thing is that we found out is that this clinic does gratis work for cancer patients. They only charge cost for the procedures, and Livestrong, Lance Armstrong's charity group for cancer patients in their fertile years, pays for the fertility drugs. So something that should cost $20,000 will only cost us $8,000. Still a lot for an indecisive couple, but worth it to us for the peace of mind--I guess you call it insurance.

So I have to say, this past week was insanely difficult. I have cried from the depths of my soul. Michael and I have just sat and held each other for many moments while I cry, or we are numb and just have each other to hold us up. My parent's have been amazingly strong and loving. My mom calls me several times a day which I count on, and when I am at work, they visit often to just sit with me and process things. My dad canceled my work trip to Denver this weekend because he said I needed to be here with family on my "good weekends". I was set to go, but that act alone set shocks of love to me.

Michael's mom and aunt came to visit for dinner on Thursday, which was so nice to just see them and be with them. Patty and Margie have been awesome in their love and support. Not to mention the myriads of people who have shown their love and support in this critical time.

My first day back at the alternative clinic was emotional...a set back for many. But the love was strong. The love and support I get from everyone there lifted me up.

And so I feel like I have journeyed to the dark side but am crawling out and seeing the light. It just took a bit. This weekend was amazing. I haven't been home for a weekend in as long as I can remember, and so this weekend we barely left the house. We spent the entire weekend at home, and loved it. We loved just being with each other, and creating our nest. We rode bikes, worked in the garden, made delicious healthy food, and watched silly movies that made us laugh. We enjoyed the little things. So thank you dad. We needed it.

So there it is in a nut shell. We wait to start treatment unless my blood tests come back tomorrow saying otherwise.

Mentally we are doing better. This is summer after all, my absolute favorite time of year. So how could life be that bad after all? I sit here typing this on my porch, with my love by my side, and the sound of frogs and owls permeating the moist warm air that smells rich with life.

Evie the Penguin

2010-06-25T09:39:00.000-04:00

and P.S. I forgot to mention that I now have a South African penguin named after me! My friends Michaelle and Claire are in Africa saving the penguins, and look at this adorable one they named for me...

The Color of Love

2010-06-24T21:58:00.005-04:00

I have to say, these past days have been the hardest I have ever lived in my entire life. The shock of hearing I have cancer again is a hard pill to swallow--really really hard. And the fear of what is to come is paralyzing at times. And the decisions I have to make THIS WEEK that will impact the rest of my life weigh heavily on me. But then something so sweet happens that I pull myself out of the pity party and remember all that is good in the world. Life is about the human experience, and even the smallest acts of kindness go a long way.

I came into work on Monday to find a huge support group there just for me. My co-workers dressed in purple and pink to support me (my favorite colors...and purple just so happens to be the color for the Leukemia and Lymphoma Blood Cancers). I walked into my office to find all these people, with balloons, and flowers, and most of all, LOVE and support. It totally blew me away.

To see this group of people who aren't judging, and are just there to support me was really amazing. I'll never forget it. And I can say the same for you all, all you readers out there who love and support me to. I send out a huge thank you. It means more than you know.

So here are the pictures...

The Game

2010-06-15T15:43:00.000-04:00

So everyday I get an e-mail from Story People. Some days it is pretty bizarre, and some days it is like YES! And today was one of those days. I just got done with my last post and look what was in my e-mail box:

Here's the Story of the Day:

Slow Pitch

How're you doing? I said & he said we're undefeated in our appreciation of the game. That's against incredible odds, he added.

The news no one wants to hear...

2010-06-15T15:34:00.000-04:00

I was debating on whether or not to get my PET scan before my dear friend Amanda's wedding in New Orleans this week because if the news was bad I didn't want it to hamper my excitement and love directed towards the lovely couple. But this is me we are talking about after all and we know I have no patience for things. So I had it scheduled for yesterday, and thought in my mind that of course everything would be fine and the New Orleans wedding would be an even greater celebration.

But, the news was not fine. Dr. Hamrick called me this morning and told me that my cancer was back. He asked if I wanted to call my husband and parents into the room before he described what was next. He was so kind and patient and called me back right away after I gathered the troops (we were at work, and it just so happened all three were easy to find! just when I needed them, they were there..that's how its been since the start).

So we listened to my fate yet one more time from him. He is great at explaining things. Bottom line is that I have to go see a specialist who treats bone and blood cancers. Initially, my cancer was spread throughout my neck, chest, and behind the lungs. This time there is only one tumor, and I think it is actually in a different place than it was before. It is 1 cm x 3cm and is very close to my heart pericardium. I can actually feel this, and in my denial state of late I have been just thinking that I have heartburn or something. I never felt this sensation before with my other tumors. But my heart has been fluttering more lately, and there is a definite sensation there in my chest. When I touched my chest today there I noticed that it was sore from me unconsciously touching and rubbing it.

Dr. Hamrick first started out by wetting the strong fires of guilt in us about our decision to end treatment after 10 doses of ABVD. He said that for a tumor to come back this fast, it means it was an aggressive tumor and probably would have come back even after 2 more cycles.

So what that means is that I have to change chemotherapy regimens. They are going to do new drugs called ICE therapy. These drugs are administered over 3 days every 3 weeks. I will either do 2 or 3 of these rounds. After that I have to get my stem cells harvested and then they will do a massive dose of chemotherapy to totally kill every living thing in me. I'll probably be hospitalized for awhile because my immune system will be kaput. Then they put my stem cells back and I will be cured.

Hodgkins has a 90-95% cure rate. 30-35% of people relapse in the first year after standard ABVD treatment, but this secondary treatment seems to be fairly effective at reaching that 90% cure rate.

So it begins again. I already have a list of doctors I need to call for appointments. We are going to go see a reproductive specialist to discuss our options there. I probably have to get some other sort of port put in for the stem cell transplant.

I am totally totally fried. I am angry. I am pissed that despite my efforts to live a healthy lifestyle and approach this holistically, it has returned. I feel like going out right now and sticking my face in a gallon of ice cream. Except that my appetite is totally gone.

But, it could always be worse. And I have to keep reminding myself of that. This will just be a few more months of hell to go through. I did it once, I can do it again. At least I have love in my life and an wonderful support group. I am sure gonna need you guys, I'll tell you that right now. The second time is a bit harder to swallow.

Chin up though! Michael took me home from work and we went out to the garden and felt happy for a moment. Now we are lounging on the couch just trying to process this. I am lucky to have him. He is a work-a-holic, but didn't bat an eye when he saw he needed to be with me at home today.

So time to pack for a glorious wedding weekend!!! I was worried that I would be a downer, but I am seeing that it, once again, will be what the doctor ordered. De ja vu...wedding then treatment! haha.

Transcendence

2010-06-10T22:24:00.008-04:00

This post has been coming for awhile now, but I've learned since starting this whole blogging experience not to force it. My voice will come in due time. And tonight is no exception.

For mother's day this year we all gathered at my mom's house. I've felt uncomfortable about this for the past few years as Mother's day has fallen on the same weekend as a big music/arts festival that we've enjoyed going to. But, we want to see mom anyway, and she graciously hosts us on this day to celebrate her even though we show up un-bathed and tired from the weekend long festivities.

This day was also the day to celebrate my aunt's 60th birthday which she had passed a few days earlier. I love this story about her...she was born May 5th, 1950. On May 5th, 1955 she turned 5 and was 55 pounds! Talk about a lucky number!

Anyway, we all had plans to gather at my parent's house to celebrate mother's day and Patty's birthday. A week before this Patty wrote and asked if it would be okay if she invited a man with our same surname who is somehow related to us in generations past. Grandpa had been in touch with him years back as they were both interested in genealogy. But Patty had reunited with him on facebook!

Of course we all said a boisterous yes as we love meeting new people, especially ones named Bralley who could have the same quirks as ourselves.

As so it came to be, this man who shared our name came to dinner and we absolutely adored him. He is an eccentric soul, an old soul, and seemed so clearly a Bralley even though we are so far removed from each other. It is amazing to me how those genes hold true!!!

So I left that night feeling happy to celebrate women in my life who I love so much, and also to have met a new family member of sorts.

Fast-forward weeks later and I think I mentioned something on facebook that let on that I was a cancer survivor. This sweet new-found relative of mine wrote to me and asked to confirm his suspicions. We hadn't gotten to that conversation over dinner that night. I said yes, and within days he posted the most beautiful, heartfelt painting and poem I could have ever received at that moment in time. And within days of that I had it in hard copy in my own hands. This man, whom I have only met once, spent time creating this beautiful piece for me, and I felt the love. Deeply.

Come spirit
Come charm
Come days that are warm
Come magical spell
Help Evie get well.

I fell in love with this piece and he told me more about it: Well, there's seven chakras, and high energy flow and cells moving and realigning and channels coming and going and combat of the fierce king and victory of the greatest kind. And healing of the permanent kind.

And YES! it is true. The seven chakras. The high energy flow. We need all of these open and working for them to flow in health.

This is what I've been working with in my women's circle--and have been off and on for years now. I've always felt like these lower chakras resonate easier with my psyche. They dominate me in fact. I love the grounding of the first chakra. I am a "nester" and cherish my home and community. I feel the fluidity and emotion and connection of the second chakra, the third is power and will, which I can manifest. And of course the fourth chakra...the heart...I breathe and bleed here. But once we start talking the upper chakras I am at a lack. My energy flow is blocked.

My cancer started just above my heart, and spread thorughout my chest and neck..

I am a worrier, I am tense, I cannot seem to find peace in meditation, I often cannot find my voice. And transcendence...something that is talked about freely in my family...is such an abstract term that I can't even begin to realize its meaning.

I have had mystical experiences enough in my life to know that there is something greater than what I can begin to describe. Yet in the day to day my mind can get wrapped up in the nuances of the human experience.

There is a photograph of me when I was less than a year old. My father was holding me and I was as stiff as a board. Why was I so tense, even then? And now, I still find myself wrapped in emotion at times, full of worry. I often wonder if I got sick because I haven't learned to let things go and breathe easier..to transcend...to let myself experience those upper chakras and their gifts.

This is a really round-a-bout post...

But the drive for me to write this was sparked by my comment tonight on facebook. I mentioned that I was "just in from a stroll through the garden at twilight...I love June in GA--lightening bugs, owls, bats, moist, dense air and that mystic presence that fills my senses."

And this sweet new friend/family of mine mentioned Pan and how he draws us in. I replied that I would stay out there forever if it weren't for the mosquitoes. And he said---transcend baby doll, you know how.

And that statement alone took..my..breath..away.

Do I know how? I have never thought so. I wish I could transcend. Do I know how? Signs are pointing at an increasing pace the fact that now is the time to embrace this. Patty just wrote me today and reminded me about Byron Katie and her Work. And posted on my blog this statement "Are you beginning to understand that it’s not reality that changes, it’s what you believe that changes reality?"

So here it is late, and I am rambling. But I am thinking too...about how my mind can transcend and tickle those upper chakras and let the healing energies flow.

Thank you Russ and thank you Patty. I am so lucky to be able to call you family.

PET Scan

2010-06-01T14:30:00.000-04:00

Well, after what seemed like 16 transferred calls between needing to get my past PET scans from St. Joe's and scheduling my next PET it is done! I get scanned again on Monday, June 14th. I can't believe how nervous I am. I shouldn't have done this during my lunch break as now I am having a hard time concentrating on work. Breathe..breathe..my stomach is in knots.

the mind is a powerful thing

2010-05-26T22:16:00.000-04:00

I just got back from the biggest medical meeting in our industry, the annual International Institute for Functional Medicine Symposium. I was so excited to go to this because it was the first time I've gotten to attend as a professional--I've been several times when I was a child with my parents. But this time was different because I was in the field myself and interested in whatever topic they'd pick. And what do you know, the topic just happens to be appropriate. The topic this year was Confronting Cancer as a Chronic Disease.

It was an intense week of lectures and working the booth, but I soaked in every bit of it. The symposium began with a morning long lecture by Dr. Jeffery Bland, a pioneer in this field, and an absolutely brilliant man. Listening to him talk is mesmorizing as he can synthesize and deliver information like you wouldn't believe.

As the morning was winding up I found myself overwhelmed with emotion. Now I know those of you who know me aren't surprised, but I was. I was surprised at how a lecture, whose content was scientific, intellectual, and not at all directed at me, seemed to hit a deeply personal chord. And it was then that it struck me that I am a cancer survivor and that does really change a person. Not so much on the outside. You see me, and I am the same old me. But something has changed inside. My family and I have been through a traumatic experience this year and have survived. Yet the fear of its return seems to be always on the outskirts of my mind.

There were so many high points to the meeting. The functional and integrative medicine approach is to find ways to work in conjunction with established allopathic medical treatments of cancer, while working towards preventing relapse once the cancer is gone. The environmental impact on cancer development was discussed at great lengths. And it just so happens that this was published days before the conference.

I could go on about all the great scientific pearls I acquired from the meeting, but when I sat down tonight to write this, I intended to write about one lecture in particular-- "Cancer's Impact on the Mind" by Anne Coscarelli, PhD.

I have to say that it was the most moving lecture of the entire meeting as I felt like she was up there on stage speaking to me, and giving me permission to be feeling the thoughts that I've been feeling these past months. It is okay to admit that this was hard--physically, yes, of course. But emotionally too. And as she said these words..."the journey does not end when treatment ends" I breathed a sigh of relief to know that I was not alone.

When I was almost done with chemotherapy, and trying to decide if I should continue, I became obsessed with searching for other Hodgkin's Lymphoma patient blogs. I even joined one of the online support groups just so I could ask someone a question. I had avoided all of that prior to this because I just didn't want to know how bad it could get.

I remember one blog so clearly. She wrote a whole post on what it was like to be in her shoes. And I liked it. There was so much I could relate to.

So my rendition to you, and to the other readers who may find this blog one day who are going through this, is this--I'll summarize what this psychologist said to me during that hour.

The diagnosis and treatment of cancer disrupts psychological well-being. It can solicit anxiety and depression, loss of control, change in independence/dependence, sense of self-esteem and mastery, and leave you with uncertainty and vulnerability specifically surrounding fear of recurrence, fear of death (I never felt this way except in the very beginning), and fear of secondary effects from the treatment itself, i.e. menopause, heart and lung decline, secondary tumors, and shortened life-span.

Prevalence of distress by cancer site listed Hodgkin's Lymphoma #3 of 14 cancers studied ,third to lung and brain cancer. I am guessing it is this high because of the age group this cancer affects.

Fear of recurrence is prevalent, and is described as the largest concern among cancer survivors. (now, this seems like common sense, and you don't need some psychologist telling you this. But when I've been living a great cancer-free life full of normal activities and love, and this annoying feeling is still in the back of my mind almost constantly--yes, I feel it is appropriate to mention.)

She gave a great example of this fear. A patient of hers, while in art therapy class, completed a painting that had beautiful trees, flowers, and blue sky. Yet there was the presence of a few dark clouds and blackbirds. "Life is good after cancer treatment and the tree is strong, but there are still dark clouds hovering and those annoying black birds."

She talked about post-traumatic stress disorder but I won't go into it much here as I don't feel like I have this. For those of you who do, know that you are not alone.

Cancer diagnosis and treatment can disrupt your physical status, your social network, your sexual health, your reproductive health, your financial and work status, and can raise existential and spiritual questions such as why me? did I do something wrong? is there a lesson in this? how can I use this to change my life? what is the meaning of life?

What I thought was interesting is that she mentioned the new stressful situations that are introduced by this diagnosis. We now have to think about medical procedures and hospitalizations, frequent medical appointments, treatments and side-effects, medical decision making (WHICH IS VERY DIFFICULT AND STRESSFUL!). We have to wait for test results--or the so called "scan-xiety". There are health insurance stressors, the fear of recurrence, and the late effects of survivors. In some cases, coping with the dying process comes into play.

The good news is that she presented MANY studies talking about the effects of stress-reduction techniques, the development of good coping skills, spirituality, and a positive outlook really DO statistically significantly affect outcome in regards to decreasing chance of relapse and recurrence. As do those who seek the help of therapists or support groups (which I am considering).

So there is hope!! The mind is a powerful thing, and it is okay to allow yourself to realize you need help in controlling it.

I have started the practice already. Each time the strong pang of worry strikes me, which is often as I am sitting in anticipation of my next PET scan in three weeks, I work hard to quench that worry, grasp it, and exhale it. And I feel good for a bit. And then it happens again, and I exhale.

We will get through this...one..breath...at..a..time...

So my deep appreciation goes to Dr. Coscarelli and her lecture.

Thanks for reading this far...it was a long one!!

my grandmother...

2010-04-24T18:10:00.000-04:00

As I sit here in the coziness of my home with thunderstorms all around me I am moved to write about my grandmother. Today, like many times past, she has absolutely floored me. I am in awe of her gentle yet tough spirit and today was no exception. Whew, I don't know if I can even write this without tearing up.

About 3 months ago she moved out of her home of over 20 years to an assisted living home. She went from being a totally independent busy woman to one who's pain was so bad that she wanted to just stay home and be in bed--seems almost as if overnight. She isn't a complainer, and has approached life lately with a "whatever" attitude, which seems to go a long way. But it got to the point where she needed to complain and get some help. She's since had back surgery and is on the road to recovery. Her goal is to walk unassisted again.

This weekend she joined her 3 children, 2 of her grandchildren, and spouses at her old home to go through her things and watch as her possessions were divied up amongst us. Whew...what...a...major...life...event...

Shortly after I arrived Patty walked in the kitchen with a stack full of yellowed letters all neatly saved in a ziploc bag. They were love letters that grandma had saved to and from she and my grandpa--"Poppy". What a beautiful love affair those two had--ahhh, what a life. And to hear how lovingly she still talks about him. She asked me today, as we poured over memories of him-"will I ever stop missing him?" It breaks my heart, but makes it swell at the same time that she had such a wonderful partner to go through life together with. He passed away on their 50th wedding anniversary family reunion celebration weekend. If there is a god, he couldn't have planned that one better. He left grandma surrounded by her entire family--a family that she would drop anything else she ever had going on just to be with.

So we all spent the time packing, moving, hustling and bustling, and she was there, full of grace. She had moments where emotion would overtake her, but she would move through the tears, and say she just needed to get it out and then she was fine. Grace, grace, grace...that word just keeps popping up in my mind because I was just blown away by how it just flowed from her.

Here were her worldly possessions, full of memories, yet she released attachment to them and seemed, for the most part, fine with what a major thing this was.

She told me as we were holed up in her closet going through all of her scarves (I love scarves, and learned that I come by that naturally...) that each decade of her life (she's lived 8 now) has brought its own joys. She says she looks forward to what joy the 90s will bring. Always the optimist, that is my grandma.

My grandma has always had a strong and loving presence in my life. And I am so grateful for that. I am grateful for the time I have shared with her and the time that I still have left with her. She is a role model for me, and her positivity is inspiring.

Well, time to sign off...it is hard to type through tears.

I love you grandma.

Spring has sprung

2010-04-10T11:11:00.005-04:00

It is a glorious spring morning in Georgia as I sit here and sip my weekend cup of coffee, with Pandora--Aretha Franklin radio and Curtis keeping me company. Michael had to work this morning so I've been putzing around the house and just enjoying feeling alive. I've made the morning rounds to the garden, and our spring peas are coming along nicely. Cucumbers are just beginning to poke their heads out of the ground, and the radishes are trying to give it their all. The trees are blooming, and our yard is bursting with every color of the rainbow. It is sunny and crisp, and just overall so pleasant and invigorating.

In a week my women's circle begins. I am so excited for this. I've longed for a circle like this since I left Athens and that beautiful community of women there. I'll never forget the thrill I felt during yoga class those many months past at Zen Tea, our local tea shop. I was surrounded by women, and it struck me--yes! I can make this happen! Let's do this here, and create this community! So I did it, and I've got a group of 10 women, some I know, and some I don't but will soon. I've been dreaming about this circle each night this week as I've been planning and reading and preparing for it. I always awaken feeling happy.

Michael and I started Boot Camp at work this week. It is subsidized by Metametrix, and is directly after work, so it makes it SO easy to attend. Although--the workout itself is anything but easy. We've been laughing all week about how sore we are!!! You should see us get in and out of the car. But, it feels good to move the body again and it also feels good to know that I can do it!

Another thing that started this week was my menses! I share only because you've journeyed with me during this adventure and know that that was a major stress for us, and the reason why we decided to stop chemo early. So we are feeling relief for the return of my femininity. Now let's focus on that clean PET scan in June!!

My final thoughts for the morning come back to our honeymoon. We had an amazing time--it was probably the most relaxing vacation we've ever been on. There was lots and lots of relaxing on the porch of the Aerie overlooking the marsh. We played scrabble, rummy, cooked delicious food, and watched Moulin Rouge again ("the greatest thing you'll ever learn is just to love and be loved in return"....sigh....). I read a lot. We did make it to the beach everyday--something Curtis absolutely loved! The last time he was at Kiawah his knee was injured and he couldn't walk very well. It was nice to see how far he has come after his two knee surgeries this year. He ran and chased those birds just like he was a puppy again.

On Wednesday morning we got up at 5 am and drove an hour north to launch the canoe at the Isle of Palms for our 6 mile canoe trip to Capers Island. We put in just at dawn, and the water was like glass, with the occasional dolphin playing at dawn. It was magical. We made it to the island around 9 and spent the rest of the day relaxing in the hammock and taking in the simple beauty. After a fire and a magical night outdoors, we returned the next day to more relaxing at the Aerie on Kiawah.

We finally visited Angel Oak, which is just stunning (see below--look for Michael!). Friday night we went to a concert on the square, and Saturday night we went to Cassique to soak in the hot tub and enjoy a romantic dinner at sunset with the most delicious food! It was the perfect end to the perfect honeymoon.

(angel oak)

(I made fun of Michael because he smiles funny in photos..so this was his response...)

(the picnic basket and wine was a honeymoon gift from my dear friend Karen from the clinic. The basket was FULL of goodies, she totally spoiled us so I was happy we could use it on our honeymoon.)

(our view from dinner Saturday night)

So those are my thoughts this beautiful Saturday morning. I hope you all enjoy this weekend!

The beginning of the rest of our lives

2010-04-01T21:37:00.001-04:00

So I've been quiet here for a really really long time. It's actually been a nice vacation from internet land these past few weeks. Last week we spent honeymooning totally unplugged from technology, and that was soooooo nice. Now I am crawling out from that and ready to share with you the goings on inside my head.

First of all, I feel like I should have written the day it happened, because it was beautiful. ING race weekend...and sharing that experience with my Husband, Karen, and Rebecca. The symbolic beauty was touching, and filled with emotion.

Michael has been a sturdy beam of support throughout it all. He's been there from the very beginning...that morning where I woke him up at 6am the day of my bridal shower and forced him to surf the internet with me trying to make sense of my symptoms and what it could possibly be. He was there at my primary care physicians office with the bad news. He held my hand through it all, and continues to be there for me--for better or worse, right?

And Karen...she was there with me the night it dawned on me that I might have Lymphoma those many moons past, and on the eve of my wedding, at my blessing way, she gifted me the promise that she'd run the half-marathon in my name with the Team-in-training group for the Leukemia and Lymphoma Society. And she DID it!!! She, with the help of so many of you, raised a lot of money for this group to help those with blood-borne cancers. Karen truly rocks, and I am so lucky to have been able to call her friend for over 25 years!!!

And then there is Rebecca. Karen connected me with her when I found out about my diagnosis. I was scared, and it was so nice and incredibly comforting to be able to talk to someone who had gone through the same thing. Over lunch at the Flying Biscuit I got to hear her story, and to see how she has been cancer-free for 10 years now, with two beautiful children and a loving husband to boot. She's healthy, and happy. She is my inspiration.

I remember her telling me, while I was a crying mess, that the beginning was the hardest part--the coming to grips with the fact that you have cancer. I didn't fully understand that when she said it to me, but now, having gone through it, I do. August was one rough month, really the toughest I have had to date in my life. Rough. And yes, going through chemo wasn't a walk in the park, but it was what it was--we were beating the enemy and winning!!

So here I find myself, after 6 months of accepting, treating, and beating cancer, with these three people at 6 in the morning in Centennial Park in downtown Atlanta. It was a blustry morning, with the threat of rain, but the energy in the air was amazing!! Thousands of people were buzzing about in anticipation of this race--a race that was run for so many different reasons. Here is her story about the experience: http://teampurpletrain.blogspot.com

So that was an amazing start to the beginning of the rest of our lives!!!!

And then we headed off to our honeymoon... and it was....perfect...

The Decision

2010-02-23T22:40:00.000-05:00

Well, the final hour has come and gone, and yes folks, we've made a decision. How it ended up happening is that after days of discussion, and thought, and talk, and many many long hot baths alone with candles lit and incense burning, and blah blah blah...it came to actually making a decision, and Michael said, you can't make this can you? And I said, no. So he asked if I wanted him to make the decision, and I said yes.

So here we are. It is decided. I am not doing any more chemotherapy, but will continue with my vitamin C IVs and hyperbaric chamber sessions. I am going to do a cleanse, saunas, and just keep my fingers crossed that I will stay cancer free forever!!

Because my last chemotherapy session came and went without giving celebration or closure, I felt like I needed some sort of distinguishing or remarkable experience to note this fact that indeed I am done with therapy!! And to acknowledge that my cancer is gone. We are ready to move on with our lives, start a new, and celebrate life. I'd lost about 2/3rds of my hair, and it was all wiry and thin. What other time in my life will I ever even entertain the notion of shaving my head? So tonight Michael and I shaved our heads. It is time to start fresh and let the healing begin.

Want to see pictures??
BEFORE:

AFTER:

Yes, the household is happy. And feeling good about our decision. Lots of love, and lots of gratitude.

So what's next? Karen is raising money for the Lymphoma and Leukemia Foundation when she runs the ING half marathon in March. We are going to support her and volunteer with the American Cancer Society handing out medals when the runners cross the finish line. From there we are headed out on our honeymoon!! We are going to go camping on the coast of South Carolina, and then finish the week at the Arie on Kiawah Island. Relaxation, revitalization, and nature. Just what the doctor ordered.

The Gamble

2010-02-22T18:32:00.004-05:00

I've been debating as to post about this or not--it seems intensely personal, but hey, why not bare all? I am faced with two more chemotherapy sessions...just two...but I am torn in a million pieces as to whether or not I want to continue.

I haven't gotten my periond in almost 8 weeks now. And I worry that with each treatment, the likelihood that I'll get it back worsens. I've been having hot flashes and night sweats every night now for weeks. My hormones are all crazy, and well, this is just a tough tough decision.

I've combed the literature on premature ovarian failure..basically if you are in your 20s, you have nothing to worry about, and if you are in your 40s you will most likely go into menopause. The 30s?? Well, it's just all up to the individual.

I've also combed the literature about relapse rate, and standard treatment for Hodgkins. And, I've been getting on the support group websites, and frankly, that scares the hell out of me. Relapse rate is 25-35%. That seems pretty high to me. Yet I seem to know so many people that tell me -- oh yeah, I knew someone who had that and they've been cancer free for years now! But it just takes a couple of minutes in the forums to see that there are a lot of people who've relapsed. I wonder if those are the people seeking forums..and the ones treated and done don't get on them?

Michael and I went to the onocologist to talk about all of this that has been weighing so heavily on our shoulders. Surprisingly, he said it would be fine with him if I stopped treatment right now. We actually had a very good talk with him. He said there are two types of patients..one, who will do whatever she needs to do to make sure the cancer is gone--i.e. all the treatments, and even entertain the possibility of radiation. And then there is the patient that weighs the side effects and risks. He sees that I fall into the latter category. I want the cancer gone, but I also want to maybe take the small risk that it might come back to decrease my risk of permanent side effects--including, but not limited to permanent lung and heart damage, decreased mental function, and ovarian faliure. I guess you could say I am a bit obsessive (I think my doctor thinks that).

I was very worried about my lungs because they felt damaged the days following chemo. The bleomycin can do some serious work to the lungs. Good news is that I just took a pulmonary function test, and my numbers came back excellent!!

So I have this huge decision to make by Wednesday. I have all of these Vitamin C IV's under my belt that I can't discount. Essentially I've been getting double dose treatment throughout the course of my treatment. And I'll continue this for several months.

Chance of relapse is greatest in the first year.

My hormone craziness isn't helping. Last week I literally lost it for several days. I was a slobbering fool, and when I wasn't crying, I felt numb, and depressed, and tired, and anxious, and not ..that..much..fun..to.. be .. around...I haven't been this bad since that time in December. Remember that?? haha..meltdown city. Thankfully I can look back on my months of treatment and realize I've done pretty good minus the few breakdowns. I mean, I could have been this way throughout, right??!

Michael continues to be my rock. And my parent's are sent from the heavens. Anyone who can sit and listen to me cry and just hold me through it..I can say I am lucky to have such support. I try to keep a happy, positive face. But sometimes I just can't. And I am glad they don't run the other way. I mean we are talking about people who aren't as emotionally raw, so I often wonder what they think. All three of them have also really helped me process it all--the pros and cons. Talk, talk, and more talk...

So I am out of my crazy lady stage for now. I had a great weekend from start to finish surrounded by friends and this beautiful spring weather. Dr. Hartle menitoned to me that this will all be over just in time for spring, and then there is rebirth!! And I think about that all the time.

Trip to Vegas anyone? That is what I feel right now.

Friendship

2010-02-03T20:30:00.000-05:00

So here I sit...6 weeks away from being finished with chemo. 6 weeks left out of 6 months! Whew. It is an interesting feeling.

This last round wasn't that bad--a mild in the scheme of things. I can't help but wonder (I sound like the sex in the city chick) if it has a lot to do with the fact that I am almost done. And that the cancer is gone, so I don't have to worry about what if it weren't and all that that would mean. And that I can see the light at the end of the tunnel. Or if it doesn't feel as bad because I am not killing as many cells, because they are all gone. Guess it doesn't matter, as long as it wasn't too horrible, right! I'll take it.

So now I am decreasing my time at Progressive Medical, the alternative medical clinic I've been going to since September. And I realize I haven't talked much about that experience. I mean, I've mentioned that I get vitamin C IVs there, and hyperbaric oxygen treatments. But really, as time is coming to a close, I realize that it has been much much more than that. Much more.

I've religiously been going there four days a week for months now. Each morning I show up at 9 AM, find my spot and wait to get blood pressure taken and IV connected. My spot was in the back corner. I picked it because it was by a wall, so I'd only have one other chair next to me, instead of two, so I would only have to talk to one other person if it came to that. And, it was near a plug in the wall for my computer. I came prepped with my ipod, and my computer. And I tuned out the world. That is until I started making friends.

Fast forward to today. My beloved corner chair is now not 'mine' anymore, but my dear friend Karen's. It is the healing chair, and she will be healed next. Let me tell you about Karen. She is a force. She is one of those people who you will always remember the day you meet them. Her presence fills the room, and in a good way. She is incredibly friendly, engaging, and interested. She is kind, compassionate, passionate and a champion for the people she loves. I've gotten to meet some of her beautiful family. And it makes my heart swell. Karen will fight for you to the death. That is the kind of friend she is. That is a quality I'd like to have more of. I can't wait to hear the news that she's on the other side of this battle. Because she will be there one day soon. I just know it.

So yes, today...(I don't know how to tell a good story)...I come in a bit late, because I attended grand rounds at metametrix, and people are already there--Karen, and other dear friends who I've come to know through this experience. We are all there all the time. The cancer patients that is. And actually, I misspeak. There are a lot of other regulars who are there treating different obstacles. So it becomes a family. The regulars, and the nurses. So I show up, and I've been worried again about my port, and it not giving blood return. This has been an ongoing problem. It didn't give blood yesterday. And today I am sitting there, chatting with the girls--my friends, my family--and the nurse hooks the syringe up, and what do you know?? Blood return!!! Hallelujah. And everyone cheers. It is crazy, this support system. And then we all laugh about the strange things that make us happy these days. I was SO happy that the nurse could suck blood out of my chest. This was a genuine happiness. This is so strange if you think about it. But that is what it was. Blood out of the chest = good. And we were all happy. And it was then that it struck me deeply how much these women have really found a place in my heart forever. And I could tell that the nurse, Patty, was just as happy that we got blood today as I was. She really cares.    And then we all laughed at each other about how silly it was that this kind of thing is what makes us happy. Sad, right?

Then there is Andre. The polish guy that holds all of us women together. I don't even know his title, I just know that if there is ever a problem, Andre will solve it. He is there to make you laugh when you are crying. To fix the messed up schedule, to calm the fires. The juggler, the enabler. He told every single person whether he knew them or not about my wedding, and that I was now married. And in that same vein, he shouted down the hallways the exciting news that the cancer was gone. His heart is HUGE. He is the father to us all.

And I can't forget to mention Lupa. Oh my goodness, Lupa, the chef sent from the heavens. She takes such good care of us. She feeds us delicious, organic lunches everyday. She gives us mushroom tea, kombucha, and green tea. She gives us good advice, and really really cares. And feeds us WELL.

And I can't help but mention Dr. Kimberly. She has been there from the very beginning. I knew her before Progressive. She has been there with the most loving support from the beginning--it floored me actually. She isn't my doctor proper, but everyday she says hello with smiles, and gives me hugs, and her warmth is genuinely appreciated. She is beautiful inside and out, and I am lucky to know her.

So I started this post to give tribute to my experiences with the friends I've made at Progressive. There are so many brave souls that I have met. Each one has his or her own journey, and we all come together at this point in time and travel it together for awhile. They've touched my life, and I would have never met them if it weren't for this.

And now, speaking on friendship. I've made the most unconventional type of friend. Franny, who I was introduced to from my dear friend Lopes. Lopes wrote me one day and asked if she could share my blog with her friend Franny who was just diagnosed with Hodgkins lymphoma. I said of course, and since then, we developed a special kind of friendship. The one that develops due to shared experiences. She has an amazing story herself, and I am already in awe of her. She lives in Juneau, Alaska, has a husband, and two young daughters, one that was just born a few short months ago. Wow, what a heavy thing to go through right now. I told her that I already felt some sort of connection with her--and it made me realize why people like support groups so much. I asked her if it was okay to share her blog with you all because I absolutely love reading it. Her outlook is so positive, and she, like me, has an incredible support group. So yes! Here's to survival, and perseverance. Thank you Franny! http://forthepiroshkies.blogspot.com

Wow, this blog certainly breaks all the rules on keeping it short. Whew! If you made it this far, I applaud you! I don't know what got into me. I just know that I am sitting here feeling so grateful for what I have gotten out of this experience. I have made great friends.   What a thing to get out of a bad experience?? I will take it!!

Much love to you all.

The Next Steps

2010-01-23T09:44:00.000-05:00

So first of all, I'd just like to say THANK YOU to all of you out there who have held my hand throughout this journey. It has been truly touching.

Yesterday at work--of which I was there the entire day!!! was so sweet. My office was like a revolving door with people coming in and hugging me, and doing the happy dance with me, and generally just being happy and sharing love and hope. People told me that the office had a happy vibrant vibe yesterday. I certainly felt it.

And I've gotten calls, and Lia and Andrew visited last night just to hug me and celebrate.

As for what is next...well, my oncologist said that if my PET scan came back negative after 8 treatments (4 rounds/4 months) then he would not recommend radiation therapy. This is an utter blessing that my PET came back negative. Now I don't have to fight the doctor on this--as I wasn't going to do radiation anyway. And I can rest easier knowing that what we are doing is working. I feel such gratitude. ahhhh...yes!

He does want me, however, to continue chemotherapy for 2 more months--4 more treatments. This doesn't make me very happy, as the thought of it turns my stomach.

My dad coordinated an appointment with the MD whose protocol we are following for the adjunctive Vitamin C IV therapy, Dr. Jeanne Drisko. She had my PET scan results, and I told her everything I have done in the past 4 months with regard to chemo, IV C, glutathione/lipoic acid IV, hyperbaric, diet, supplements. And asked her if she thinks I need to continue on with the chemo these next two months.

She said that if it were her, she probably would. Even with all the other stuff that I am doing, we just don't know for sure if every little cell is gone. She put it like this...these extra months of treatment are like insurance. And if I am tolerating it well enough, then lets just keep going. She's seen too many times where people relapse. And that is not some place that I want to be.

So, here we go...on for two more months, and well, I guess I can do it. It will be done before we know it. And, I am going to cut down my days at the alternative clinic from 4 days per week to 3 days per week. And eventually down to 2, then 1, then every other week and once a month...So we have a plan now to wrap up that therapy now too.

So there we are! On the final leg of this journey. Let's go on and get this over with! It's time to think of all the other people out there who are struggling...friends, family, and even those I don't know like the ones in Haiti.

Ecstasy

2010-01-21T18:31:00.001-05:00

NEGATIVE FOR MALIGNANCY is what the radiologist wrote on his report of my PET scan!!!!! That's right everyone!!! Guess who is cancer-free????!!!

I am elated right now. I haven't been this happy since my wedding day. I have cried, caused scenes, jumped around, laughed, screamed, danced, .... you name it...I am feeling HAPPY!!!

YIPEEE!!!

More to come..but for now....its time to breathe a big fat sigh of relief.

Karen posted this photo on her blog http://teampurpletrain.blogspot.com Her talented husband Brian took this at our wedding, and I just love how it captures the happiness of the day. Thank you Karen and Brian!

The Wait

2010-01-19T10:25:00.001-05:00

Well, the PET scan is done. And pretty non-eventful. I was there at 7 this morning, and they put me in a nice and comfy room. With the lights dimmed I reclined and curled up in a blanket and plugged myself into my ipod. It was relaxing, and I floated in that calm space between sleep and wakefulness. Then guess what song came on shuffle?? Let it Rain! I have 4,000 something songs on my ipod. I couldn't believe how appropriate it was. It is like my battle song. And granted, first thing in the morning, while relaxing, isn't the best time to listen to dance electronica..but I still turned it up loud, and it felt good. Minutes later the nurse came and got me, and I was scanned.

And some good news...my neck isn't burning like it was last time. :)

So now we wait. I should have the results in a couple of days. I'll be sure to let you all know right away.

Much love to you all!

Photo by http://ar-ka.deviantart.com/art/Waiting-for-summer-118315896

Update on Timeline

2010-01-05T22:18:00.002-05:00

Ohhhh... and I guess you guys might want to know about what my timeline is here??

Well, we met with the oncologist yesterday. As of now I've completed 7 chemotherapy sessions and about 50 Vitamin C IVs. The oncologist knows that I am doing this alternative stuff, but doesn't really buy into it, and doesn't even really seem that interested in it at all. But, he's not fighting me on it, so that's good.

I did ask him yesterday after he's seen me and we've talked about my experience if he thinks I am fairing better, worse, or equal to others he's treated for this same condition. He said, well, I do have a patient who is your age and treating the same thing and he isn't tolerating the treatment very well at all. We expect the same outcome of curing his cancer, but he really is having a much harder time than you are having. But, that's an N of 2 and I can't draw conclusions from that. Everyone responds to this therapy differently.

And so yes, I'll give him that. People do respond differently. But I like to believe that these supplements I am taking everyday, and the vitamin IVs, and the hyperbaric oxygen chamber, and my diet are making a difference. I am trying to eat organic, whole-foods, and avoid sugar and alcohol. I haven't lost all my hair. I am still menstruating. .I don't have mouths sores, neuroapathy, heart or lung problems, edema. And I am still having a good full week of feeling good every other week.

So what's next?

Well, I get a PET scan the week after my 8th treatment. For a PET scan the inject you with glucose that is irradiated. They use glucose because they know that cancer LOVES sugar and it will go directly to the tumors. And then they take an x-ray of you. The irradiated glucose will show up, and show where the tumors are. So yes, they all know this. It is the foundation of a major tool they use to diagnose and follow cancer therapies. So why is it that they still recommend gatorade, cinnamon buns, and don't strongly recommend a sugar-free diet? That still escapes me. Well, actually, I am not as flabergasted as I was before I started treatment....on diet...there is a use for indulgence when it comes to matters of the pshyche. When I absolutely don't feel good, or have had a stressful day, I am going to eat Mexican food, and it will be okay--and it makes me happy. And I enjoyed the holidays with a semblence of strictness, but was a little more lienenant with myself...anyway...I could expound more about diet strictness at a different time...it is a deep, many-year lived struggle...

On my first PET scan I could feel where my cancer was. My neck was burning after the injection. It was on fire.

I just hope that I don't feel that way again this time. I hope so badly that this cancer is gone.

So far, all visible and palpable signs of my tumors are gone. There is a slight swelling on my left collar bone. But the doctor says that it doesn't feel like lymphoadenoapathy. I sure hope so.

The doctor says that if the PET scan comes back negative, which he completely expects, then he won't recommend radiation, and we will just do 4 more chemo sessions, and I should be done!! And it will be behind me.

So here I sit. Thinking that I didn't want to do more than 8 sessions. I don't want to do an additional 4 sessions. But, I also don't want to do radiation, and he said that is a possibility.

I asked him what would happen if we didn't do the additional 4 treatments. He said, well, the PET scan isn't extremely sensitive. And even if it is negative, there still may be a residual few cells left. And if we don't kill it dead, then there is a chance of recurrence. And if it comes back then I have to do this horrible thing called autologus stem cell transplantation. This is where they take stem cells from my bone marrow and save them. They then give me chemo so strong that it kills all of my bone marrow. I have to stay in a hospital for weeks during all of this as my immunity will be destroyed. And then, they reinject me with my stem cells to regenerate the bone marrow. It sounds horrible.

So scare tactics. .... it kind of works. ... it kind of makes me want to just do this therapy until the decided end. Which, who decides this, I don't know. He has no way to factor in all this alternative stuff I am doing. And neither do I for that matter.

And all this really hinges on the fact that the PET will come back normal. We don't know that yet, and I don't even want to think of what it means if it doesn't.

So there we are....still up in the air.

My PET scan is scheduled for Tuesday, Janurary 19th. I should know within a couple of days the result of that. And I am sure you'll be hearing from me then.

2009

2010-01-05T21:20:00.003-05:00

So here begins a new year. The cold air, and long nights leave lots of room for cozy introspection, and I find I've been doing much of it lately.

2009 has been, well, quite unbelieveable in terms of life experiences. It is definitely a year I will never forget, nor want to. I've experienced a lot, I've loved a lot, and I've learned a lot.

Michael and I nested more deeply into our home together. We started the year off by building a strong and sturdy retaining wall in our front yard. We have started to learn about gardening, and growing our own keep. We successfully had our first (small) garden enjoying its bounty immensly. We lovingly visited it every single day, often twice, to see what gifts it brings. We have so much to learn, but you've got to start somewhere, right? In my emotional state right now, symbolism oozes from this experience together.

This year has brought us more awareness of the local foods movement, eating organic, and the importance of sustainability--things we are eager to develop further as we form more completely our desires for a creating a life and a career in the mountains.

We spent a lovely week at Kripalu together, deepening our love for one another, connecting, and breathing in each moment that is that amazing magical place. Kripalu is one of my most favorite places on earth, and I am so grateful that my partner in life resonates with it as well. Again, these experiences are helping us form in our minds what it is that we'd like to create.

Our engagment at the Leonard Cohen concert in Phoenix, AZ after a weekend hiking and camping in Sedona..was...unbelievable. I will never ever forget that weekend. It will always remind me that we are young at heart, spontaneous, adventurous, and passionate.

Our souls were fueled throughout the year by camping in our own backyard. The southeast has some of the most beautiful scenery I've ever seen, and the magic of these old Appalachain Mountains runs deep. L.E.A.F, Transformus, Sandy Ford, Kiawah., Carter's Lake. My life is rich with experience. And our friends. WOW. I've got some fun friends who like to get out there and live it. And I love that!

And of course, the wedding. There are no words to describe the feelings I felt that weekend. It was everything I had ever dreamed of as a little girl and more. We kept trying to take time outs to just remember a specific moment. Let's burn this one moment in time in our brains and remember this feeling... It was a true celebration of the heart. We were surrounded by family and friends and LOVE was pumping its way through every cell in my body. The beautiful blessing way, ahh........Michaelle and Lia, thank you thank you. And thank you to every woman who was there. You truly blessed me. Circling with women the day before my wedding was fuel for my feminity and reminds me of this wonderful bond that only women can share.

The rehearsal dinner, a perfect celebration to precede the grand celebration. Laughter, love, family, friends. FIRE! Drumming! Dancing!

Saturday, October 3rd., I woke up and the view from my bedroom pillow was that of crystal clear blue skies, and the foothills of the Appalachain mountains smiling upon me. I stepped outside and the crisp air almost took my breath away. This is my wedding day, and it is perfect. A beautiful day surrounded by days of rain. The day was again filled with my dear women friends and family. Primping and preening, and creating memories. Windows open, breeze blowing through curled hair, women laughing, telling stories, reliving memories of years past. ahhh...it was true woman hood, a sacred and ancient phenomenon.

And of course the ceremony and celebration. It was a blur. But I had this handsome man by my side. My husband, my love, my life. It is the perfect memory. And I call on it whenever I need it. It is almost like I can't put words to it, because nothing will do it justice. Every single second of that day was joyous. And happy. And full. And I thank everyone who helped make it happen.
As I sit back, these some three months later, I see that the gift runs even so much deeper than just that weekend. For one, I've married a partner to my soul. And the gift keeps giving every morning when I wake up next to that angel of mine. And then a hundred other times thorughout the day.

I also fully appreciate the entirety of what it means to have a wedding. All the months leading up to the wedding...the planning, the dress-making (Margie, what a gift this was...whew, makes me tear up to think about it), the parties, the phone conversations! It is all so special. It is a time to integrate in new family. A family that I LOVE so dearly. Michael's family is now my family too, and it feels GOOD.

The holidays that close out the year this year were exponentially more special. It is amazing the light that is cast on life when it is threatened. Fortunately Halloween, Thanksgiving and Christmas fell on my 'good weeks' which was a blessing in itself.

Halloween with my family at Carter's Lake. I was at such peace that weekend. Just a few short weeks after the start of my therapy, when I was still scared and unknowing of what was to come. But that weekend was blissful. I was so happy surrounded by my family. My parent's who I am so incredibly grateful for to have such a loving and deep relationship and connection with. And Margie and Ray. ... family. Again, it feels good.

Thanksgiving with Patty, Becky, Pat and Michael and Curtis...or as we called it "Michael and the Lesbians" (they want to start a band) was so nice. We celebrated in our home and it was just another reminder that I absolutely LOVE cooking for people and having them warm our home.

Christmas was so nice and easy this year. Michael's parent's were able to make it too! We celebrated Chrsitmas Eve at mom and dad's, and Christmas day at Margie and Ray's. This tradtion we've kept for several years now, and I love it. And I LOVED this year. I was again...almost manic. Life felt so good. Being around family and friends felt SO good.

And then Michael and I escaped for a romantic getaway to Callaway gardens...where it was just that...romantic. Ahhh, so romantic. Even the cheesy festival of lights trolley ride was unbeliveably fun because I was sitting there with my love. And he was keeping me warm.

New Years Eve...well, what can I say, I was sick. I had just had chemo, but it was okay. Michael stayed with me. We watched such bad movies that they were almost good. I fell asleep before midnight, and he tenderly woke me up at 5 til, with laptop turned on in bed to stream the NY ball drop. We counted down, we kissed, we said Happy New Year, and I curled up closer to him and soundly slept while he fed his night owl desires with computer games.

New Years day with friends, eating all the symbolic foods. And laughing, and being together. It was really really nice.

This weekend I got to begin this new year circling with women, and it was powerful. I was sick, and not feeling good, but I picked myself up, and drove myself to Athens to do something good for my soul. And I was grateful for it. It lit that fire again in me that I know I forever need to feed. The sacred feminine.

And I came home from that to a wonderful evening with friends from Brazil. They are here visiting, and I wanted to see them and hug them and give them good hospitality as they did for me when I was visiting their home.

So, yes, I've been diagnosed with Hodgkins Lymphoma, and I am going thorugh treatment that is not easy. I feel bad half of the time. But I get respite. Above the physcial discomfort I have had to learn to deal with (or at least try) the emotional stuff that comes with such an illness and all the associated complications. I have experienced some of the toughest things I have ever experienced yet in my life. And it is still not over. As I sit here and type, my brain is still being held in that vice clamp, and my stomach feels as if I've been on a spinny ride at Six Flags for too long. My emotions are raw and at the surface. I don't feel like standing up for very long. But at least I am experiencing it. I always said, I'd rather live with sad so that I can enjoy the happy. Well, that about sums it up. As the pits get deeper, so do the peaks get higher.

And I am fine with that.

With this illness I have been changed. I see things differently. I remember so vividly driving down my street this fall and realizing I might very well cause an accident because I was in awe of the beauty of the trees.

I've also experienced the power of compassion and kindness. You all. You in my life have left a deep impact on me. And I thank you. You will make me a better person for it. I hope less selfish, I hope more giving. Because it makes a difference.

So here is to 2010. I hope to keep experiencing life deeply.

I wish you all a happy new year filled with love and light.

the picture is of Michael cycling our way through Callaway Gardens December 27th, 2009.

Dark Hour of the Soul

2009-12-20T20:32:00.000-05:00

Thankfully the darkness has abated. I am still tired, and feeling yucky, but I am far from where I was on Friday. So thanks to you all for your love and support. It meant more than you know.

Michael said, well, the good thing about going through tough times is that they can get easier once you know you can make it through. And I did make it through. Whew.

So I am sitting here, on the futon on the living room floor with Curtis sleeping cuddled in between Michael and me. Michael is also sleeping so sweetly after working a 15-hour day today. Life is slow, but sweet. And we made it through.

Happy Solstice and sweet dreams!