August 30th, 2015

Cancer looms ever-present in the background of my life. I cannot avoid it, for every single day my body reminds me at some point and in some way that I am not completely healthy, despite how I may act and feel. Multiple times each day, and many nights as well, some sensation—be it nausea, discomfort, or my high heart rate—puts me in my place, and tells me to appreciate every breath I take and every hour I have on this earth. On days when I feel completely fine, the sight of my ten-plus surgical scars acts as a strong reminder of just how incredibly fragile a hold I really have on life. I strive to make these reminders of my own mortality inspire me to enjoy each moment, to appreciate more what a gift it is to laugh, play board games, eat good food, and enjoy the company of loved ones.

And yet, I know that I am not nearly as thankful as I should be for my renewed lease on life. I should have died some time in February, by my reckoning. By that point the cancer would have taken hold of my lungs, or perhaps caused a kidney to rupture. I really can’t say which would have come first, or when exactly I would have died without treatment, but the cancer progressing to my lungs and blocking my kidneys from draining were the doctor’s chief concerns at first, so I tend to think that one of those would have done me in, without treatment. I remember the exact moment in March when it hit me that, had I been born even thirty years ago and only had access to the care available at the time, I would more than likely be dead already.

My wife Christina and I were walking back from Central Park, and we had only a few blocks to go before we reached the Ronald McDonald House where we have lived much of the past nine months. I don’t recall what first prompted my train of thought, but somehow I was imagining living in medieval Europe (as one does), and it occurred to me that applying leeches would have been the best that anyone then and there could have done for me. My thoughts quickly turned to advances in medical care, and I realized that, as someone who was scheduled to get a Phase I trial of an experimental treatment, even a year ago my chances might have been worse than they were today. As it is, I’ve gotten an extra six months of life so far, and still counting. I lived to see my two year anniversary. I should be filled with gratitude every moment that I live, for I am living on borrowed time.

 To be sure, I am immensely grateful for today’s level of knowledge about cancer, and the better-specified treatment regimens available. That my wife and I could quit our jobs and devote ourselves to getting the best care possible while I remain under my parent’s health insurance is an enormous blessing. Many people don’t have that option. The outpouring of love and support, from people I have known my whole life to people who have never met me in person, has been encouraging beyond description, and I cannot thank everyone enough for the dozens of ways they have shown exceptional generosity. There are far too many people on similar journeys without the kind of incredible support network I enjoy. I am truly thankful for the countless blessings that enrich my life. But still, hours go by where I forget to appreciate the simple fact that I am still alive. Days even pass when my discomfort is merely an annoyance, and the sight of my scars makes me think only of how badass I am now. If you saw my scars I’m sure you would agree. They’re pretty legit. But let’s get back to my point.

At the start of this ordeal, I resolved to make the most of every moment. I also decided that, if I had two weeks to live, I’d want them to be fun, but I’d also want them to be reasonably normal. So I do my best to live like I would without cancer, to not let it ruin my life, cripple me with fear and doubt, or make me do something crazy like forgo treatment and max out my credit card by travelling everywhere on my bucket list in the next month.  I also wanted to make sure I didn’t waste my time, and to do the things I knew I would regret leaving unfinished. So I spent as much time as I could, when I wasn’t on too many opiates, working to finish the fantasy trilogy I started in college. I went to museums, the Bronx Zoo, and dozens of other NYC attractions, regardless of how well or unwell I felt. But sometimes I fear that in trying to maintain normalcy, I neglect to appreciate life like I should. It is a constant balancing act, to live normally while remaining in a state of awe and thankfulness that I am still living. But in my experience, the most rewarding parts of life are those that require care and balance. I encourage anyone reading this to consider how better to balance worry-free living with an attitude of gratefulness. I certainly don’t have all the answers of how best to do this, but I can tell you that my life has been far richer since I started to make a conscious effort in this area.

August 23rd, 2015

I never struggled to accept my diagnosis—Desmoplastic Small Round Cell Tumor (DSRCT), a rare soft tissue sarcoma. Information was limited and sometimes conflicting, but by any reckoning the odds were bleak, and the treatment would have to be as aggressive as the cancer itself. It seemed doubtful that I would ever become cancer free. Even less likely was the prospect of remaining free from this tenacious disease, as it has a particularly nasty habit of coming back again and again. But I reasoned that if I had beaten the odds by getting this cancer in the first place, I could just beat them again. So far, we’re heading in the right direction. Chemo, surgery, and experimental radio-immunotherapy are all in the books. The only thing left in the planned course of treatment is radiation, which is scheduled for mid-September through the middle of October. But returning to my point here. I had no trouble accepting that this was my new life. In fact, I accepted it too well, at first.

I started to think of myself first and foremost as a cancer patient, with all the limitations I thought came inherently with such a title. Cancer patients don’t go out to eat. Cancer patients don’t go to Broadway plays. Cancer patients don’t go to museums. They don’t attend sporting events, they don’t visit parks, they don’t go to concerts, they don’t do anything. They sit around sick and tired all the time, barely able to eat, barely able to do more than watch TV. A combination of ignorance and laziness threatened to keep me in bed, to keep me from enjoying life to the fullest.

But I started to look around me and find that all this was simply not true. Children with just as much cancer as me didn’t seem to know the rules about being a cancer patient. I saw children going for rides on their IV poles, playing tag, making art, and shrieking with delight at the simple things in life. It barely mattered to them that they were cancer patients, at least not on their good days. And these kids were hooked up to hydration backpacks, or had feeding tubes snaking down their noses. If only I was young enough to not fully understand the gravity of the situation, like those kids. Then I could live life. But alas, I knew better, and I made my peace with what I figured my new life would involve. I watched a lot of Netflix that first month.

Then I met a great guy about my age, whose college plans took a backseat to osteosarcoma (mercifully just for one year!). A state championship-winning basketball player in high school, he told me casually about going to various basketball games at Madison Square Garden. On days when he received chemo, no less. Alright. Message received. Movies might (almost) only show cancer in two forms--the deadly killer that leaves everyone too weak to move, or the obstacle caught early and overcome by the “fighter” character—but this needn’t be the case. Even for those who understand their situation exactly. It’s entirely possible to have cancer not caught early, to have little chance at beating it, and to still fully enjoy the best that life has to offer.

So I went to an NFL game, and even ate a hotdog there. The first day of real, intense chemo, we went to a hockey game. We got there late and missed Sidney Crosby’s goal, but it was still fun.  The Lion King on Broadway was just as good the second time as the first, despite my not having very high blood counts, and technically not being allowed to be in a crowd. Perhaps the highlight for my wondrous wife and I was the five or six rangers games, including a playoff game, we got to attend. We are still immensely grateful for the generosity of whoever donated those tickets. Central Park continues to impress, as does the Metropolitan Museum of Art, which has taken three or four visits to see only about half of all it has on display. I’ve discovered favorite restaurants and places to walk, and a hundred ways to make the most of this craziness that is my life. I can’t thank the role models I’ve had here enough, be they three or twenty, for showing me what a cancer patient is, is not, and can be.

August 20th, 2015

Thus begins my blog. I can't promise anything profound here, merely the musings of a twenty-something male from Midwestern America doing the best he can to live life to the fullest while going through treatment for a pediatric cancer. Which, when I stop to think about it, are far from ordinary circumstances. But I'll let you judge whether or not my circumstances lead to any profound thoughts. So what is this blog going to be about? My life, in short. I hope to convey what I'm doing and thinking in a concise--and if I'm lucky a humorous and interesting--way. Let's get started then.

Today is an easy day. No bloodwork scheduled, no scans, no nothing. Just a half dozen different pills twice daily. Today marks the first time since May that my body is free of some kind of tube or dressing. Not even a band-aid (tm?), as of this afternoon! OK, to be fair, I still have a mediport, a device in my chest through which chemo and IV fluids can be administered, but that's under my skin and not accessed right now, so I'm not counting that. I don't have any staples or steri strips, because it's been over three weeks since my last surgery. Even the tube through which my experimental radio-immunotherapy was administered is gone, as of Monday. If you're curious, it was the size of a normal IV tube, and came out of my abdominal cavity to the left of my belly button. My left, not yours. If you weren't curious, I apologize for boring you.

There have been many easy days like today, and many very, very difficult days, but surprisingly few uneasy days. Let me explain that sentence. Today, and mercifully many other days, I am able to eat food, walk fine, go places, and in general feel fine. Many times throughout the course of my cancer treatment, this has not been the case. There have been days of chemo where I was too sick to eat. Worse were the days recovering from surgery where I would have traded body parts (those I have left, so not my spleen) to be allowed to eat, but the tube draining my stomach showed that my insides were still running in reverse. But whether it's a day like today, where my charming wife and I enjoyed lunch at a cute Mexican restaurant down the block, or a day where I'm sporting a brand new fifteen inch long scar from surgery, I have almost never felt uneasy, and never for more than a fleeting moment.

I know I can't speak for anyone else on this journey with me, but I have only rarely felt truly unsettled about this whole cancer thing. Have I looked forward to the various toxins that are chemotherapy? Hardly. Have I been excited when surgeons describe an upcoming procedure and recovery process? Not exactly. Am I nervous about starting radiation in a month? Yeah. But am I uneasy? Am I shaken and rattled? Have I fallen apart and questioned the fairness of life? No. Nothing I've seen or gone through this past year has rocked my worldview. If anything, it has only reinforced something I've known for a while, something the book of Job makes abundantly clear. Shit happens. It can happen to anyone. As far as I'm concerned, how "good" or "bad" your life turns out depends far more on your attitude than your circumstances. I have a great life, and I wouldn’t trade it for anyone else’s.

Until next time,

Morgan Bolt