Tuesday, October 30, 2012

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. :)