Day +119 Recovery Update

Last week’s check-up at Sloan-Kettering was the smoothest that I’ve had yet. A friend’s mother’s best friend, Renee, picked me up from my home and drove me all the way into Manhattan. We hit no traffic on the way in and very minimal on the way home – a rarity. The smooth nearly seven-hour roundtrip commute allowed me the opportunity to get to know this incredibly giving woman who offered up her day and escort services to help out a near stranger. She incorporated a lunch visit with a friend while I took care of medical business.

I completed the drooly, spitty, alienish process that is the monthly Pantamadine breathing treatment to prevent against PCP pneumonia. After I removed the misting pipe from my mouth and was unzipped from my human size plastic bag they lock me in to hold in the medicinal excrement, I was ushered to my next part of the appointment.

After my CBC and metabolic panel bloodwork was drawn from my mediport, I looked at the nurse with a big, though cautious, smile and said: “I literally have nothing to report.” She ran down the requisite list of symptoms: “Any rashes? Fevers? Night sweats? Diarrhea? Stomach cramping? What’s your bowel pattern? Numbness or tingling? Trouble or pain when urinating? Itchy or dry eyes?”

I shook my head side to side at each question indicating that I had no issues with anything on her list. This is a far cry from my initial post-transplant appointments when I would have comments on each of those categories and usually a separate list in my notebook of symptoms that had arisen, which I wanted to discuss. 

“I go through this list because these are all things that could be signs of Graft vs. Host Disease,” said the nurse. “If any of these symptoms come up, you need to let us know.”

I understand. I understand that I am not out of the woods and that GVHD can come at any moment, and can be with me chronically.  I understand that it wouldn’t be a bad thing to see a little creeping in, that it would show promise of a more aggressive Graft vs. Lymphoma effect. I understand that we are very aggressively tapering my immunosuppressants and therefore aggressively opening me up to auto- immune attacks. About fifty percent of patients endure GVHD after 100 days post-transplant. Though, there is still a chance that I could get away with a cure and no GVHD at all.

I also understand that I don’t have any of these symptoms currently and with this understanding, I’ve got to take advantage of this time. After examining me, Dr. Sauter was happy with my progress, lack of post-transplant issues, and encouraged by absence of any lymphoma symptoms. However, he likes data and so do I. This is what makes us a good team. This time data will come in the form of a PET Scan. It has been more than two months since my last one. We want to see what is going on inside of me to be sure that there is no lymphoma on the rise and therefore be able to better determine if this immunotherapy is working.

Unfortunately, PET Scans provide such finicky data. The technology catches any kind of metabolic uptake and is hardly conclusive, but as Dr. Sauter, who isn’t a huge fan of the at-times inconclusive evidence the test provides, says: “However, this is your test.” The lymphoma I’ve had in the past does not show up on other types of scans, so this is what we have to work with and it’s the form in which my comparative data lies.  

Our hope, obviously, is that there is no growth. My last scan in August showed very, very tiny spots of possible cancer that would not be of concern except for my history with the disease. We’ve now given a solid two months for my new immune system to kick in and go after any rogue cells. There is much reason to believe that it is working, or at the very least, keeping things at bay.

The impending Oct. 20 PET Scan means I am now holding that massive bag of anxiety over my head once again. If the past is any indication, the bag only gets heavier as the scan day gets closer: T minus one week. That’s only one more week left of freaking out and creating incredible scenarios in my head. I’m an emotional wreck swinging from elation to depression and back again. I need to get better at handling this as these scans will be a reality for the rest of my life. My vast imagination can be a real damper on the scanxiety process. I’m very hopeful and also very scared. I’ve had some chest fullness, which in the past has been an indicator of disease on the rise, but it’s difficult to tell that from the chest fullness that anxiety also brings.

But back to what I do know and understand for sure and what I don’t need a scan to tell me. I am still feeling incredibly well more days than not. My head and heart are still open and clear. I am still free to live my life now, no longer in the confines of that hospital room unable to control my surroundings and activities – never mind my bodily functions. There have been a few tough days this past week, which caused me to cancel plans with friends and succumb to very early bedtimes and some self-pity crying sessions. The fatigue is still tremendous when it barrels in. However– and a big however – this past week has also provided me with some fantastic days, some of the best of my life. 

I talked to my sister, my donor, from across the country this past weekend and she told me that I sound like myself again, that it’s again “Karin” in my voice, and that I’ve regained my sense of humor and sounded bright and strong. 

“Sisterrrrrrrrrr!!!! You’re back,” she said, in her beautiful, loud and brutally honest vernacular. “I’ve got my sister back!”

This was the best compliment and the most conclusive data evidence of health I could ever get.