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!