That "stomach bug" I thought I had in my last post turned into massive, unbearable pain two weeks ago, causing me to call my doctor (transplant doctor, of course, because I don't actually have a primary care physician, oops). I ended up being admitted to the hospital with elevated liver enzymes and strong suspicion of gall stones. I wasn't allowed to eat for the next three and a half days because eating aggravated the problem. A couple of days later, sure enough, tests confirm gall stones, which had passed by that point. I had an endoscopic ultrasound (ie they stick a tube down my throat while I'm under sedation to get a picture of what's happening on the inside) to make sure things had cleared out, and at that time they took some tissue samples to see if GVHD was aggravating the problem.
The next day my world came crashing down around my ears... again. At the very end of the day the doctor came to give me devastating news. The tissue samples had revealed a hematologic malignancy in my gut - a blood cancer.
They weren't sure at that point if it was my old leukemia that had relapsed or a new cancer that had cropped up, the pathology lab hadn't finished their analysis. I found out last Tuesday that yes, I had relapsed, for the third time. Last week was a blur of tests and procedures - a PET CT, MRCP, bone marrow biopsy, lumbar puncture, and the placement of a stent in my bile duct to hold it open against the onslaught of rapidly growing cancer cells threatening to choke off the entrance to my intestines. The good news is that the leukemia is only in my gut; it is not in my bone marrow or my central nervous system. But how weird is that? I have leukemia in my gut, like on my pancreas and in my liver and stomach. WTF?!?
I started chemotherapy this afternoon. My mood has been pretty good today, I'm still in a lot of shock and denial, but I was not a happy camper yesterday. I was out of the hospital on a day pass and I spent part of the evening packing for my upcoming month in the hospital, just like I did five years ago when I was first diagnosed. I sat down on the floor of my bedroom and cried, just like I did five years ago, but I was not crying because of the unknowns and the newness of the diagnosis, as I did back then. I cried because I thought I wasn't going to have to do this again and I can't believe that I have to go through this again. I really thought that this time I was really safe, that I wasn't going to relapse again. I thought I was actually able to move on with my life, I was planning for the future, I was finally enrolled in classes to start moving towards the goal of medical school. Cancer has already screwed up my life enough, and here it is, back for yet another round. Jerk.
And here I am, back in the hospital. Again.
I'll get chemo for the next four days (five, including today) and then be in the hospital for a month as my immune system and the leukemia cells are killed by the chemo, which will make me extremely susceptible to infections. Then my bone marrow will grow back and they'll let me out. We'll probably do a second cycle like this in a couple of weeks later, depending on how many cancer cells we killed this time around, and then after that I will be getting a second bone marrow transplant. That is unbelievable. We can get into why BMTs are so intense another time, but trust me, they are very difficult. They have already identified 10 possible matches for me from the national transplant database, which is an amazingly high number. So far I feel OK - I'm not puking yet, let's hope it stays that way.
This will end up being my longest hospital stay ever. I will probably be in here for 5 to 6 weeks total, counting the week I spent here with gall stones and the week I spent getting testing done. I've done three separate month-long stays before, but this is going to be ridiculous. I just hope I will be able to keep myself from going totally crazy in here. I'm already thinking up ways to keep myself occupied and entertained, and suggestions are certainly welcome.
I will probably continue to update this blog during treatment, which is kind of depressing. This blog that I started to chronicle my time in France will become a chronicle of my third journey with this terrible disease. Instead of chronicling my adventures in Europe I will be blogging about the four walls of a hospital room. If cancer bothers you, you don't have to read my blog, see ya later. I like to think that I find the humor in the situation and can spin a funny story out of what happens in the hospital, so I promise it won't be all doom and gloom. It won't be exclusively cancer though, I still have lots of things to say about my time in France and observations about French culture and maybe other random tidbits of life when I eventually get out of here. You, the reader, should feel free to ask me questions in the comment section and I will try to answer the questions as best as I can.
One type of question I will not answer is any question or comment about my chances of "making it." First of all, I don't know what the survival statistics are for relapse of AML after transplant because I made a point of telling my doctors that I don't want to know and I will not be researching it on the internet. I imagine they are pretty bad and I don't want to hear it, I think that would be psychologically devastating. Secondly, the only numbers that actually matter for any individual patient are 0 and 100. You either live or you don't. I am going to try my very hardest to make sure that I live.
Fuck you, cancer.