Final Entry

I've been completely negligent in updating this blog.  I left you last with everything up in the air except for the fact that Michael and I were building a house in the mountains and planning on moving there for good.  Well, that's happened!  And I've also been cancer-free since March of 2013.  We've been enjoying living our new life here, building our dream business.  

I was motivated today to write a blog because just this week Michael was uploading pictures of our recent trip to Alaska to our picture drive.  He called me over and said, look at this...at lot has changed since then...And I looked, and it was this picture of me...from the hospital, March 2011.  

I laughed it off, and agreed, WOW, yes, a lot has changed.  But this image has stuck with me.  Not in a bad way I guess.  Just stuck around for awhile.  And it occurred to me something that I don't take for granted these days anymore.  I am still here.  Not everyone gets to be so lucky.  

I hope that I make these days ahead worth it.  I want to live, laugh, love.   Experience joy and share with others.  And I guess I can take the hard stuff too...haha...for that is just part of this thing we call being human.  

So I am signing off now from the Let It Rain blog land.  I hope I don't have to revisit it again, but if I do, I'll cross that bridge when I get there.  Thanks for taking this journey with me.  

Love, 

Evie

Here We Are Again

The view from our new porch in Sautee.  Healing land for sure.  

Yesterday my PET scan showed relapse.

How many times have I heard this news?  Well, in terms of PET, 10 out of 13 times in 3+ years.

I was nervous for the results even though I have gotten a lot of practice with bracing for the bad news.  As it turns out, it is just never easy...the waiting.   The best part of it all is is that I put out a call for help and support on facebook on day 4 of waiting, and my friends totally and completely came through for me.  What an incredible blessing you all are.  I won't ever forget this love, and hope I can return it to you someday.

This July I showed no evidence of disease after my third dose of a new monocolonal antibody drug called brentuximab.  We were elated, but also were told that this drug hasn't proven to result in a "durable" remission.  So I was referred to my bone marrow doctor again, and a radiologist to discuss how to continue my therapy.  We met with both, and after those meetings had a real clear picture of the route we wanted to take next.

I have spent the past couple of weeks being worked up for starting radiation therapy, something I have never tried before.  Radiation was the sole method of treating Hodgkins Lymphoma 20 years ago before chemotherapy became available with an 80% success rate.  My doctors and I (and my family) have decided that because chemotherapy just doesn't seem to be the answer for me (or vitamin C IVs, or Gerson therapy, or homeopathic therapy, or energy work--although of all things, I will most certainly keep the energy work piece because I have been cured of many more things than hodgkins as a result...), that we will treat me as if I had hodgkins back in the day before chemotherapy.  It is a bit unconventional, but hey, I put it out there in the universe that I wish I could find a doctor that would come up with some other answer besides a donor transplant and think outside the box.  And my wish was answered.

I am very pleased with my radiation doctor.  More than pleased.  He uses the word cure with confidence, and has a wonderful heart without ego.  So, when we got the results yesterday, he took it in stride and helped me not lose my confidence.  I am so so so very happy that I had this lined up when I heard the news yesterday...relapse while still on chemotherapy.

Today was my first day strapped down to the table in my mask in which I was positioned and measured and acquainted with the machine, and I will start radiation tomorrow.  I was excited for this therapy, and have confidence that this will be the answer.  It was tough though, and I realize that here we are again...going down that path of the unknown.  And welcoming the discomfort in exchange for long term hope.

The plan is about 6 weeks of therapy, with a couple of weeks recovery.  Then we go into exploratory surgery, with another round of radiation. I hope to be finished with all this for good by the beginning of February--when we should be moving to the mountains in our new home!--a welcome distraction for all of this crazy making.

Here is a picture of me and my dear friend Karen, who've I've known since the beginning of this journey, and as it turns out is getting radiation in from the same doctor! Crazy coincidence, but has been a such a blessing.  We are in this together dear friend.  This picture was today...and Karen got them to take our picture with our "halloween masks".  We have to laugh, or we will just cry....Wish my mask looked like Lucha Libre!

So that is the nuts and bolts for now.  I have left out all the fun stuff!!  Stay posted for more information about First Descents and our hike-a-thon coming in March!!

In the meantime, I wanted to give you some songs that have been making me smile. :)

Alive and Doing Well!

View out my kitchen window where I've spent many an hour looking out these past months!

Okay, I've been absent for several months! I know!!

But I do feel like I owe it to you to let you know how I am doing.  You have been my cheerleaders, my heart.  You've inspired me, lifted me up, and kept me laughing and smiling.  

In May we found out definitively that my transplant last spring wasn't the miracle we were hoping for.   I had spent several months prior to this news during our "watch and wait" period implementing modified Gerson Therapy, medical Qigong, meditation and other anti-cancer therapies into my life.  While I do think these have helped the cancer not metastasize, it has grown and seems to be a stubborn soldier.  

I have decided to try a newly approved monoclonal antibody drug called brentuximab.  It is very promising and hopefully comes with fewer side effects!  So far I have had two rounds of it, and am doing very well.  After one more round I will have another PET scan (beginning of August) and *fingers crossed* the drug will have worked its magic.   In all, we expect to do 8 or 9 rounds.  Unfortunately, doctors don't feel this is "the cure", although they also tell me that they don't expect I will be cured if I relapse after transplant.  But, disease management, or palliative care...a term I had never heard of until this ordeal, is possible for me to live out several more years!   (I am still holding out for a miracle :-))

Despite what  the "statistics" can do to the psyche, I am doing remarkably well.  My life seems different now.  Well, it IS different now.  I wonder if I am not writing here because I don't even know how to say in words the changes that are happening.  Life is simpler.  MUCH simpler.  It is good.  And easy.  I am blessed with a loving family and husband, amazing friends, a relationship with the divine I never have had before, and a true awe and appreciation for the beauty that each day brings me. 

Sending love to you all!!

One of the many days we've spent working the land.  I am the happiest here.  

Here's a half a weeks worth of veggies I've been juicing now for 5 months!  I have a healthy orange glow :)

Tree of Life

Well, today marks the year anniversary of my stem cell transplant. People call this your "rebirthday" and I thought it would be one of those days you put in your psyche as a celebration day.  As it turns out, I don't feel so inclined to celebrate this day--it actually seems like a day I need to be comforted and supported.  A year ago we thought that this was going to be it...we had put our faith in modern medicine and had surrendered.

I can think of other days that I'd rather celebrate as being milestones for my health...like the day I first heard I was in remission...way back in January of 2010 after 8 doses of ABVD.  Or the day that we heard that there was no evidence of disease going into my stem cell transplant...coincidentally also being in January--but a year later.  Or the day that my biopsy confirmed that what was lighting up on the PET was a hyperactive thymus.

As it turns out, the day I consider my rebirth was January 5th, 2012---the day after I heard that my cancer might still be there.  I fell apart into pieces and had to figure out how to put them back together, and realized that the rules to the game are different.

I don't know how long I will be walking on this earth-and it might not be for that much longer.  That realization sometimes comes to me like a sensation of someone taking a brick to my face--or my heart....sometimes...and then sometimes it is like the best gift I could have been given.  I am making decisions now that I would have never made because of the "what if's" or the "how to's".

My life these days is committed to my healing.  And I have faith (most days) that I will heal.  Because I am attacking it from a different angle.  I am also focusing on my future...and how I would like it to look.  And that feels really good.

The picture you see above is a plant my dear friend Beth gave me.  She took a clipping of her plant and put it in soil to grow on the day I had my stem cells put back in.  She brought the plant to me a couple of months later while I was still in quarantine.  It was a stalk with a couple of buds on it.  She said this was planted the day of my "rebirth" and we will watch it grow together as my health recovers.  It was a daunting task as a gift...what if I killed it???  But today, a year later, it has beautiful leaves and is flourishing.  Thank you Beth. This is the kind of gift that moves me beyond words.

So here is to my rebirthday. In all its incarnations.

And here is to you.  Do you have a rebirthday??

The Dance

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...

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...

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

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

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

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

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

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

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

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

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!

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 :)