Thursday, July 14, 2011

Prednisone: Friend and Foe

Until I started chemotherapy, steroids were just something that after-school specials had taught me to avoid (Bobby and Stacy, anyone?). But I soon learned that they are part of almost all Hodgkin's chemotherapy regiments and would be needed for many other aspects of my treatment as well.

Over these past few years I have had to take a lot of steroids, and a lot of Prednisone specifically, for a range of reasons: to suppress allergic reactions to a contrast dye required for my dozens of diagnostic scans and an allergic reaction to SGN-35, and most recently, as treatment for Graft Versus Host Disease. The Predisone has worked successfully in all of these cases. While I acknowledge with gratitude that the drug has been effective, it also gives me about every side-effect possible.

Up until now, I've had large doses of the drug, but haven't stayed on it for extended periods of time. So while the puffiness, weight-gain, charley horses, headaches, the yucky taste of the pill itself (my friend Amy plans to get rich someday by inventing a candy-coating for it), mood-swings and never-feeling-full-after-eating, have all been annoying, they've been quite temporary. But for the past few weeks, I've been on a fairly large daily dose and it's been wreaking havoc on me. Most significantly, I have been having excruciating leg cramps in the middle of the night as my body withdraws from the drug, that can last up to ten minutes and include part or all of my leg or legs. On the worst nights, it happens a dozen times, on the better nights the cramps pass quickly and only hit a couple of times. As a result, I haven't had a good night's sleep in quite awhile, which inevitably impacts my days as well.

I've spoken to doctors, nurses and friends, and taken to blogs, for advice on how to prevent/treat this latest symptom. I read that potassium helped, so I've been drinking coconut water, eating bananas and taking a potassium supplement the size of my pinky. I'm also taking magnesium and keeping tonic water beside my bed, since quinine is thought to help mitigate the symptom as it's occurring, but interestingly enough is only available in tonic water. I've tried stretches suggested in the blogosphere. I'd like to think it's helping a little, but ultimately I'm just looking ahead a few more weeks when I can hopefully be off of the drug completely.

Prednisone is one of the most prescribed drugs in the world, and is used to treat a huge range of conditions, so I know that many of you (generally empathetic individuals to begin with), can seriously empathize here. I know, from speaking to many of you, that Prednisone has been your best friend and worst enemy as well. If you have any tips on coping with Prednisone side-effects, let me know!

Besides these steroid shenanigans and a surprise virus and infection, the past couple of weeks since my last post have been pretty good. I've felt much more like myself. I've been able to feel pretty productive and spend time with friends and family without too much distraction from my medical challenges. And I've had a couple of positive check-ups with my doctor which confirm that the GVHD is under control for now and my blood counts are slowly climbing. I am past day +50 post transplant, and celebrating the milestones as they come. The next major step, and the scariest one of all, will be diagnostic scans sometime in August. These scans, which I haven't had since late March, are the only way to really see how the cancer is progressing or regressing (there are no blood markers the way there are with some cancers). Only then will we be able to know how effective both radiation and the transplant have been.

Friday, July 1, 2011

Universal Receiver

If I understand this process, (a big if!) by the end of the transplant year-of-milestones-and-recovery, I will have a new blood type (AB+). I think on a very visceral level, this is one of oddest and most interesting changes I will undergo as my immune system and other blood cells are replaced by the healthy donor system that will hopefully destroy the cancer without destroying too much else in the process.

Having a new blood type is one of the more mind-blowing aspects of this whole situation - scientifically but also metaphysically and even spiritually. Intriguingly, my new blood type is the "universal receiver," meaning that individuals with the AB+ blood type can receive blood donations from any other blood type. I have found myself reflecting heavily on the concept of becoming, officially, a universal receiver.

When I have asked those closest to me how I have changed in the past few years as I have gotten deeper and deeper into the cancer journey, they nearly all respond with some variation on the notion that I have learned how to better accept help. I think that in these years between ages 22 and 27, part of what it has meant to me to truly become an adult, and part of what it has meant to become well, has been to understand how to graciously receive all the manifestations of help that I have needed and been given. I want to believe that it has also made me more aware of, and responsive to, the needs of others - that becoming someone who can receive help has made me better at giving it as well.

The universe has sent some extraordinary opportunities to put this into practice. I have come to see the transplant as the most profound opportunity yet. It has been a big challenge to allow this huge gift from another human being to work effectively. It required trusting blindly in a process and person that was unknown. It made me allow for the possibility of transformation and change that I had no control over. (
Many of you have asked me, perhaps joking and perhaps not, if I have had changes in my tastes, habits, or Hebrew language skills. In truth, transplant patients have reported changes like these in the past, and the possibility was as much terrifying as exciting for me.) It has felt like an enormous challenge that I have spent a lot of time contemplating and working on in the past many months. I have tried to be as open as possible, with the belief that the mind-body connection could help facilitate the success of the transplant.

This week, I got the results back from my first XY-fish or Chimerism test - a genetic test to determine how much of my system is me, and how much is the donor. At this phase, about 6-weeks post-transplant, they expect you to be about 30% donor and 70% yourself. When the results returned this week from the Mayo Clinic, they showed that my immune system is 100% donor.

The full implications of this news are still a bit ambiguous: my blood type (determined by red cells) and other blood components will be in flux for much longer. And the two systems may still try to fight one-another, resulting in some Graft Versus Host Disease or Host Versus Graft effect that could tip the scales again. But it's news as good as I could have at this phase of the process. It may be the quest for control in a situation without any, but I'd like to think that devoting positive energy to being open to becoming a universal receiver helped to spur things along. I am grateful for the help.