Thursday, June 16, 2011


When I was first diagnosed, it was two days after my 23rd birthday. My unusually young age compared to the majority of individuals facing cancer has factored into my experience in some interesting ways. I was a few years past being considered pediatric, but the adult cancer clinic where I began treatment, and the other places I've gone since, have not quite figured out what to do with their young adult patients. Some of the unique needs of young adult patients - fertility questions and how to handle our population's financial, social, nutritional and overall health aspects of care, to name a few - are just not on the radar for most clinics. Thankfully, I found, primarily through word of mouth, online resources like, organizations like Fertile Hope, and books like Everything Changes, to help guide me. My age has been an undeniably unique factor in my experience navigating cancer treatment.

My relatively quick recovery time in the hospital was also chalked-up to age by some of the nurses - but this time it was the age of my donor (21 years-old) that seems to have made the difference. I can't know if either of our ages explains the latest development but here it is: I have officially been diagnosed with Graft Versus Host Disease. I have a mild to moderate case that has just manifested in a few unpleasant symptoms. Because it was caught early, it's being treated without much fanfare with some heavy steroids (which have their own fun side-effects!) and is currently under control.
As I mentioned in my last post, this actually is one of the only ways to tell that the graft (the donor's system) is attacking the lymphoma as well as the rest of me, and, in the long-term, is good news.

So what might age have to do with it? Perhaps nothing, but Graft Versus Host was expected to pop-up sometime in the first year post-transplant. Having it show up this early, within the first month, seemed to surprise the transplant team. It's hard to tell if age is a specific factor in this latest phase of the escalated timeline, but i feel like there's something about these 21-year-old donor cells: they seem to know their mission, and move quickly. Whether there's a full scientific basis for it or not, I think that this bodes well for engraftment and success.

Wednesday, June 8, 2011

What's Next

So now that I'm home recovering, many of you have asked me: "what's next?"

I don't know the full answer to that question, but here's at least the short-term summary. Today I went to the doctor and learned that my counts are great and rebounding very well. I'll be seeing the doctor once a week and once a week (down from every other day) a nurse comes to my house to check my vital signs and to draw blood tests. Hopefully soon, that protocol will change to me going to a local clinic. Right now we're focused on balancing anti-rejection medications that continue to suppress my immune system, testing to see how the donor is engrafting through special blood tests (which I think begin next week), and managing any Graft Versus Host Disease. My doctor has explained that we want to see a bit of GVHD because it is also an indication that the new cells are attacking the lymphoma, but they don't want to see too much, as GVHD at it's most extreme can be fatal. This phase will last awhile - likely until day +100, at which point we'll repeat diagnostic scans to determine how this effort has worked. As of now, I expect to remain in Chicago throughout. I'm a bit hazy on the details of what happens after this, though at the end, the hope is that I'm cancer-free and ready to get back on track with my future plans.

Thursday, June 2, 2011


I'm writing you from the comfort of my childhood bedroom, where I'm continuing to recuperate, but at a healthy distance from the hospital and vigilant nurses with a dozen different reasons to wake you up in the night.

It feels indescribably good to be at home resting and out of the hospital. From here, a nurse will come every other day to take blood tests and administer any drugs that are needed. It's an exciting milestone on the road to recovery.