6 months since transplant.
11 months since diagnosis.
What. The. Eff.
God effing damn it.
Am I really still here? “Is this going to be for forever?”
I’ve been doing a lot of reflecting lately. I mean, other than reading, watching TV, and playing video games. I’ve had a hard time finding things to say. Or rather, how to say the things rattling around in my head.
But, I’ve never been one to shy away from a challenge, or to let my struggles defeat me. It may take some time, but, shit, I’ll get there.
I’m finding that the closer I get to potential freedom, the more I’ve had difficulties maintaining a positive attitude. I have been utterly incapable of motivating myself to work out and get back in shape.
Part of that, I think, can be blamed on the reduction of my budesonide (steroid). As its come down, not only do I feel less and less like Superman, I’ve been having more and more blah days. My stomach and bowels have generally been, at best, annoyed with me. And at worst…well. Let’s not get into that, shall we?
A few weeks ago, it got bad enough that I had to go to Sloan, and get IV fluids and IV magnesium. I forgot just how much it burns to get magnesium through a peripheral vein. The last (and only other) time I got it was when I was initially diagnosed. At that time, I had the IV placed in my forearm, and it only really burned right around the site of the IV. This time, the IV was placed in my hand, and my entire arm felt like it was on fire, while also having a pulled muscle in my forearm.
Like I said, unpleasant. I definitely missed my PICC line and the Hickman catheter at that point.
My friend Jess will understand – Setbacks fucking suck. Er…effing. Yeah.
But luckily all the tests came back negative, so the cause wasn’t a virus or anything, it was just more of my body being generally cranky and irritable. Understandably so.
Another part, I’m finding, is that my doctor isn’t sharing the whole story of things with me. I’ve had some conversations with a few people (Jessie, notably, though others as well), and it just seems to me like Dr. Barker doesn’t “get” me as a person or as a patient the same way that Dr. Roboz did.
There were times in Dr. Roboz’s office where she would explain something, and my parents would ask a question, and I would get exasperated. It would be something that I had tried to explain a few times, or something that I just didn’t want them to bring up, and every time, Dr. Roboz would look at me, and would patiently explain pretty much exactly what I said, giving it the added weight of an actual doctor with actual know-how. Several times, particularly during the process where I decided to get the transplant, my parents didn’t necessarily understand why I would go through such a risky procedure when things were already going so well with the chemo I was already getting.
She looked at me, looked at my parents, and said “Stop me if at any point I’m wrong, Anthony, but I think he feels like this <exactly how I felt, using simple language as well as doctor speak to illustrate both to me and to her, and to my parents, why I made the decision I made>”. Dr. Roboz is awesome, and she and her PA have both sent me numerous emails to check up on me. I’m not even going to Cornell at the moment, and she even came to visit me during my transplant. I pretty much almost cried. Long and short, it is the absolute most ridiculous set of circumstances that led me to her office, and I will be eternally grateful to her and her staff.
Dr. Barker, on the other hand, is starting to get on my nerves. Initially, I picked her because she was blunt, direct, to the point, but still managed to instill confidence, and display empathy and a connection with what I was going through. She’s the only doctor that point blank told me that the TRM (treatment related mortality) rates of a cord stem cell transplant are 25%. She’s the one that told me that over 50% of patients experience GVHD, and that 10% of that is fatal.
She was what I needed at the time. A reality check, while remaining an optimist.
But in my recovery, I’m finding that she seems to avoid telling me the whole reality of the situation. I find myself googling my questions, or asking med students, or oncology residents, or PAs for answers, when really, I should be asking my Doctor.
And honestly, it’s pissing me off. I think I have displayed a pretty enduring capacity to acknowledge the depth of potential dangers involved in my situation. I think I have wrestled with and ultimately grasped some difficult concepts. I’ve made some of the hardest decisions I’ve ever had to make in my whole life. If I wasn’t before, I sure as shit am now a god damn Adult(TM), and I wish my doc treated me as such.
Ultimately, while the blame rests squarely on my shoulders, I’m starting to realize why I’ve been in such a physical funk lately. Every other time in my life where I haven’t kept some kind of physical task list, or had some routine that was striving for a goal, I have ended up overweight, unhappy, and out of shape.
Not knowing when or if my solitude will come to an end eats at me, slowly but surely, until my motivation is gone.
So, this Wednesday, when I go in for my big 6 month exam, all that shit ends. I get my biopsy – if it comes back clean, well, fuck – that’ll be just under a year of being cancer free, and if you make it to 6 months with no signs of a relapse post transplant, it bodes extremely well for your long term prognosis.
I also get my immune function test done. While the results for the biopsy might take awhile to come back, the immune function results should be available by the time they finish my biopsy. And again, the results, most likely, will allow me to go back to work and move back to my apartment. Best case, I’ll also be allowed to socialize a bit more. Worst case, status quo remains.
But the biggest thing, is that I’m going to have a talk with Dr. Barker. I haven’t really planned out what I want to say, but mostly, that I’m hurt by her lack of trust or understanding in who I am as a person and as a patient. That her behavior is actively a part of making my recovery more difficult.
And while it’s probably too late to really do much good for me – I’m already passed the most difficult and trying parts of transplant recovery (except for the whole..chance of relapse, thing), maybe the next time she gets an intelligent young person in her office, she can treat them more like the adult they are, rather than the kid they might have been.
Also, I know that a number of mothers read this blog (including my own), so I just want to wish all of you a very happy Mother’s day, and I hope you all had wonderful days.