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