Sunday, August 21, 2011

Day +66 Update

It's time to make some big moves with my treatment. This has successfully sent me up a wall in anticipation, worry, and confusion. Compounding those mental feelings are their physical counterparts. The past two weeks have been particularly rough for me: body aches, chest fullness, night sweats, back pain and increased fatigue. These feelings are not as foreign as the post-transplant side effects have been. In fact, they are far too familiar for my taste and I desperately hope that the lymph nodes in my neck and the tenderness in my back and hips are just my body repairing from the trauma it's been through.

If it is lymphoma creeping back in, it is not the end of the world, but it will make my recovery world riskier and more difficult. I've talked these symptoms over with my transplant doctor and we've decided that rather than guessing at what might be going on, it makes most sense to do another scan. A second scan is normally done around Day +90 anyway, so we're just bumping it up a bit. This way, we can better know what we are dealing with. Is the enemy again on the attack? Or are these just normal body rumblings surrounding all of the adjustments and growth happening inside of me? My doc wants to see diagnostic evidence and I completely agree with our plan.

At least in Sloan-Kettering's transplant protocol, it is not recommended to pull an allo transplant patient off of his or her immunosuppressants until at least 60 days after the stem cell transplant is performed. The first two months are required to give the donor immune system time to mature and settle in and also for my body to get stronger and used to the new cells inside of it. We've been in the introductory phase: testing each other out. The Tacrolimus and Sirolimus ensure that my new immune system stays chill until it's ready to fully integrate.

As of last week we started making some moves. I was taken off Pozaconazole, my anti-fungal med (the chalky liquid one I was taking three times a day). As expected, because of how this interacts with the Tacrolimus I've actually had to raise the amount of that drug that I take. That should level out by my next bloodwork levels check on Tuesday.

Tomorrow is PET Scan day. On a positive note, I've only had six days to freak out about it and what it reveals. However during that time, it’s been all I’ve thought about. I have tried to make mental plans for dealing with whatever is going inside of me, but that is pretty much impossible. There are just too many unknowns and too many possible scenarios to comprehend.

In the simplest terms, the PET Scan results will help to determine how quickly Dr. Sauter tapers me off of the Tacrolimus and Sirolumus altogether. If there is any sign of cancer progression then we need to taper more drastically so as to allow my newly built immune system to go after it. A fast taper means more risk for graft vs. host disease. The preferable approach is a slow taper to ease my sister’s immune system in, but we can only do a slow taper off the meds if I am still cancer-free.

It may be obvious that this holding pattern is extremely difficult to sit in. A lot is riding on what tomorrow’s scan reveals. I’ll find out the results at clinic on Tuesday.

A fellow refractory Hodgkin’s Disease warrior – someone that I deeply admire and draw inspiration from – recently wrote about what it’s like for cancer patients in the days before and after a scan. Bekah puts it so clearly, eloquently and honestly in a recent blog entry. She frustratingly didn’t get the news she was hoping for after her scan. Please keep her in your heart as she continues the search for the key to her cure.

Some inspiration found on the label of my bottle of Honest Tea today:
“Courage is not the absence of fear, but rather the judgment that something else is more important than fear.” - Ambrose Redmoon


  1. Kar, you are the most courageous person I know. Even in the midst of all of the stress surrounding the scan, you are the most delightful, engaging and witty companion and friend. It is no wonder that people are drawn to you and Craig like magnets. Even in the toughest times, you have a way of putting others at ease. Every time I have the opportunity to spend time with you, the ongoing feelings of your genuine, loving and caring energy stay with me all day. I hope that you are guided with peace and positive energy tomorrow and always.
    All of my love,

  2. Goodness love, I'm hoping my good-scan karma JUST missed me and is swinging by just in time to hit you over the head and clobber you body with it...

    I'm sending you all the love I can muster.

    Here's to facing the beast head on, whatever may come.

    Love and Light,


  3. Too many unknowns for sure. That's the hardest part of the cancer thing, I think: the unknowns. That, and the waiting. Tom Petty said it best: the waiting is the hardest part. Hope the scan is a breeze and the results are exactly what you're hoping for. Thinking of you.