I got news yesterday that's pretty much just that: news. It's not necessarily bad, not necessarily good, just news. I prepped for that scan and that news on a blanket under a tree in Carl Shurz Park on the Upper East Side. The park is stunning and magical and it was the perfect place for both Craig and me to get our anxiety in check as we awaited my evening scan procedure.
My PET Scan did show a bit of uptake in two places: in my chest near the thymus gland and on the right side of my sacrum bone. These are two spots that have shown metabolic activity in the past and have been likely sites of disease. However, I do not yet have the full radiologist's report detailing what they think is happening this time around. PET Scans are finicky and ultra sensitive. Potential of false positives is high.
On initial read, Dr. Sauter thinks that the spot in my chest is just my thyroid being highly active, in a hyper state after the trauma my body's gone through. The thymus gland is the center of the immune system where all the T-Cells are created and that might just be what is happening – lots of T-Cell growing as my new immune system is still building. The spot on my sacrum may be some lymphoma, but it is very small. Dr. Sauter says that if anyone looked at just the CT portion of my PET/CT Scan that they would never think I have lymphoma – it is all clear. But before making any conclusions, he wants to get the radiologist's read.
There is nothing shocking or exploding regarding cancer growth on my scan pictures so this is very good news. I don't think any of us are surprised that there may be a little activity and this is not the end of the world by any means. My oncologist said that the only reason we even consider it to be lymphoma is because of my history. If it was any one else's scan, the tiny hot spots showing wouldn't signify disease.
In short, it is not the perfectly clear scan I had at 30 days but it is far, far, far from disease ridden scans I've had in the past. It's now time to give this immunotherapy thing a chance to work. We know that the strain of Hodgkin Disease I have is resistant to chemo, so it's no surprise that the lead-in transplant chemotherapy did not put me into a long remission. That is why I went through this whole process in the first place. Now we're going to go after those tiny cells in a whole new way – forever.
So, onward we go with the slow taper off of my immunosuppressants. This was always to be the plan around 60 days. For these first two months my new growing immune system has been held to therapeutic levels. Now we are going to start letting off the reigns very slowly. The hope is that as we do that, my sister's donated cells (the graft) settles in with my body (the host) almost seamlessly. We want my sister's immune system to be different enough from mine so that it will recognize and destroy the lymphoma cells where mine couldn't, but not so different that it recognizes my body as foreign and goes after it ... but we want it to a little bit because that means it's likely going after the lymphoma too ... it's all very confusing. Now I just watch for any symptoms of Graft vs. Host Disease (GVHD), report them, and they'll put me on the drugs to fix it.
I have a good enough handle on the process where I feel comfortable. I'll leave the details to the professionals. I know that I am in very good hands here at Sloan. They've got this figured out. I'm just along for the lifesaving ride.
In very, very good news, barring any unforeseen severe GVHD symptoms during this first week of tapering, I will get to go home on Labor Day. This idea thrills me, but I'm trying not to get ahead of myself. I'll be sent home when it's safe and when the time is right – fingers crossed that is in 12 days! I'll be back to NYC weekly, but it'll be so wonderful to be at my own home in between.
Craig left for home today to get his classroom set up and started with the school year next week. Being apart will be very sad and difficult for us – to say the least. But we had a fabulous last day together strolling through SoHo and Little Italy where I had my first post-transplant fresh pizza pie at Lombardi's: the first pizzeria in America. We found it to be incredible and worth the effort of having them take all the food safety precautions I require (i.e. don't slice the pizza with the rarely washed pizza cutter).
I'm having a sleepover with my college roomie, Frankie, tonight who is here in the city on business. I'll get to escape to her swanky hotel suite just two blocks away from The Lodge. Tomorrow my mama comes in for caregiver/girly time for the next 10 days. Hopefully I'll be heading back to Connecticut with her when she leaves ... .
I am feeling much, much better. Stomach is good. Back aches are faded. Chest fullness is reduced. I'm walking and exploring a lot (still donning my mask and gloves). I'm sleeping (mostly) through the night. I'm feeling fully in my body again. Perfect health is on its way. I am so grateful for how far I've come. It's quite unbelievable.