I've started writing this post more than a dozen times in my head. The problem is that every time I dip my toes into the topic of gratitude, it feels like I'm swimming in a sea of cliches. I think that's why I struggled to write something to my anonymous stem cell donor for so long. In the end, what I sent to my 20-year-old donor felt watered down by that same ocean. It's so hard, even for me who has been writing about cancer for years, to put the feelings in words. More than that, it's hard for me to even process the emotions floating around inside my head in order to first understand what I feel, and then turn those feelings into meaningful words.
Thinking Out Loud: A Cancer Blog
Cancer is complex -- biologically, physically and mentally. This is my blog to sort out some of that complexity. Diagnosed with follicular lymphoma in 2011, I started blogging about my cancer the day after I was diagnosed. Part mental therapy, part conversation, and part update, the blog talks about all the myriad aspects of being diagnosed with cancer -- symptoms, treatment, attitude, support, research and many other topics.
Monday, July 15, 2024
On Gratitude: Is It Too Dramatic To Say It?
Thursday, May 9, 2024
Stop Me If You've Heard This one Before
Have you heard this one before? Stem cell transplant recipient walks into a bar...
No? Well maybe because there's no punch line there. Walking into a bar and actually having a drink, like many things for me these days is pretty normal, and very un-newsworthy. I've been to work; been to restaurants; been on public transportation; and even been to a conference with more than 700 people. I feel a bit like a zoo animal, who after being cared for in a sheltered, controlled enclave has been released into the wild - with equal parts excitement and trepidation.
Of course, one of the first things I did was catch a nasty little cold, which I was kind enough to share with Stacy. Then about three weeks later, I discovered another, much less nasty cold. Welcome to the wild. I suspect that this is somewhat to be expected as my brand-new immune system builds itself back up. It makes me appreciate how many precautions we took for more than a year; and it also makes me appreciate how lucky I am to be able to return to living a relatively normal life.
I'm just about 14 months post transplant. My visits to my oncologist are now spaced out to every two months - and given the amount of poking and prodding at the last two visits, that's a good thing. At 12 months, I had a PET-CT scan, which is pretty painless with just the small pinch of an IV line inserted so they can shoot you up with radioactive material. But add in a full complement of seven immunization shots and there's a definite pin cushion feeling. Six weeks later, that was followed by an appointment with only 2 immunization shots, but the added fun of a routine bone marrow biopsy. I'm not a fan of the phrase "routine bone marrow biopsy" but having had 3 or 4 of them now, they are a bit routine. Not fun, but not overly long procedures - and the combination of a little ativan, a little oxycodone, and some lidocaine and it's tolerable. That said, that painkilling combo did wipe me out that evening and in hindsight, walking two miles to the train station in the 75-degree weather might not have been a great plan. But here we are.
More importantly, the PET-CT scan was clean. And I'm pretty sure my bone marrow results are also clean - although I'm not trained to read pathology reports, so I'm waiting to actually confirm that with my oncologist.
It's a bit of a weird time, if you want to know the truth, to quote Holden Caulfield. As I move from recovery to normal life, I continue to work to tame the anxious voices lurking in the shadows. When I was recovering, my focus was on the milestones - get stem cells engrafting so I can get out of the hospital; get to 100 days to enjoy take-out food again; get cleared to go out in public a bit; get GVHD under control and wean off anti-rejection drugs; get to a year. Now without that recovery focus, it can be tempting to fall into a state of worried wellness, longing for some guarantee that at some point post transplant, I'm in the clear. But the reality is that we are never in the clear -- which sounds a bit dark, but I don't mean it that way. It's just that there are no health guarantees and to wish for them is wasted effort.
The transplant's got me to this point and with each passing day, week, and month, it ever so imperceptibly fades a little into the background, and life itself in the quotidian routines of living and working emerge into the fore.
I'll drink to that.
Monday, March 4, 2024
Approaching My First "Birthday"
It's been an adventurous few weeks, and I mean that in a good way. I'll get to that in a moment but first some thoughts on where we are.
In just shy of two weeks - 3/16/24 - I'll mark my first "birthday." One year post transplant. It's gone by quickly and crawled by all the same. Going back to the summer of 2022 when my indolent little follicular lymphoma transformed into a nastier not-so little diffuse large B-cell lymphoma, it's also been an adventure. Four rounds of chemotherapy, not counting the conditioning chemotherapy, brand new donor stem cells, four weeks in the hospital, 100 days of relative isolation, and 12 months of gradually lifting restrictions. But as I noted in my last post, I feel as close to normal as I've felt since this all began. And that is a good thing. A very good thing.
This is what I have to focus on. How I feel today and not how I felt or what might happen. That is what living in the present is all about. And really, that's the only place you can live, right? In a week, I'll get the usual bloodwork, plus PET/CT scans and 7 or so immunizations. And I'm understandably a little anxious about what the scans might say, but it will be what it will be. Meanwhile, back in the present, this weekend I ran about a mile and a half without any issues and that's a marked improvement over where I was a month ago. And this comes after two trips each to New York City and Bethlehem, PA (Lehigh University) filled with a long list of first-in-a-years. The adventure began with a newly discovered need for Noah to visit the Spanish consulate office to submit paperwork in person for his summer study abroad/internship program in Barcelona.It was a lot of driving to be sure, but I've always loved road trips, and I love driving in Manhattan, and just being in New York City. More to the point, as my brother said, as much effort as this might have taken, it's great that I can do these things now. Not something I could have done even a few months ago. But something that is completely possible today. This too, feels a lot like living in the present.
I have to admit that this return to social activities is both exciting and a little bit jarring. After living in this state of mostly isolation, emerging from the protective cocoon as I've been doing over these past weeks is occasionally unsettling. I'm not quite jumping on mass transportation just yet, but even that too will happen soon enough. After all, someone has to go visit Noah in Barcelona this summer. Might as well be me.
Matt, Noah and at dinner (and yes a beer!) in Ardmore, PA |
Sunday, February 18, 2024
The Power of Belief
These last two weeks, as I've hit the 11-month post transplant mark, I'm feeling about as normal as I've felt in nearly a year. Part of this is due to a cautious return to limited social activity; part is due to the absence of any troubling symptoms. And part of it, I believe, is due to the power of belief.