One Year in New York

It was a year ago today that I arrived in New York to seek treatment. I remember, upon arrival, a lot of New Year's celebrators grabbing whatever cabs they saw so they could get to Times Square. Not like I was in any position to go even if I wanted to -- by the time my diagnosis had come back, I needed crutches to walk, and couldn't bear much weight on my left foot. Any "walking" of note required being pushed around in a wheelchair.

I had no idea what I was about to face or how long I would have to be in treatment. Would I have tumors all over me? Would I need treatment for the rest of whatever time I had left? The closest thing to a family experience with cancer I'd had up to that point was a close family friend who was diagnosed with Stage IV ovarian cancer in 1990. I can remember visiting her and seeing her crashed on her couch exhausted from chemo treatments. And then later on, she was in a hospice, and I'm so glad that back then I didn't know what a hospice was for. I remember seeing her in bed, weak and thinned out, with a number tubes in her. She passed away in late November. Having seen that endgame before made the days between my diagnosis and my first scans quite scary, though the gravity of the situation also worked in my favor -- there was this emotional numbing effect that kicked in when my diagnosis came back that also blunted my sensations of fear.

Well, here I am one year later, with just one more chemo cycle left and still healthy. This gives me a lot to be thankful for, most importantly that I will have some guaranteed time at home between the end of my treatment and my late March scans. Not all patients get to this stage, so to even have this time makes me feel very blessed. I still have a long way to go, though, considering that there will be regular scans and tests and associated anxiety, plus continued rehab as I get back in shape. Hopefully my sailing continues to be smooth.

To report on the latest with treatment itself, cycle 16 started with some very familiar feelings. The temozolomide in week 1 made me tired once again, though the big crash didn't kick in until Wednesday afternoon, lasting through the following Saturday. Before then, I had another pleasant experience of a new physical therapy exercise leading to some big progress shortly thereafter. On Tuesday afternoon, I was put through a set of basketball drills, involving moving side to side with my knees bent, as if I were playing defense and trying to steal the ball. Some dribbling was also thrown in. The next day, I suddenly felt more strength in my legs, and found myself taking short jogs through the main hallway clinic. I had tried to run before, with limited success -- I could get a running stride going as early as mid-October, but I could only produce it every now and then, and it did not feel particularly natural. This time, though, I was doing it while feeling the effects of chemo, and whenever I wanted. The stride still needs work, and I can only go slow and for short intervals at the moment, but now I do feel like I can run again, so that's big. Here's a video I took of myself the following Sunday, after I'd slept off the week's chemo tiredness:

The following week, chemo diarrhea kicked in, and without the Suprax antibiotic anti-diarrhea measure (I ceased using it on doctor's orders because of my recurrent C diff infections), it was a bit more persistent than any of my past cycles that had not been complicated by C diff. It first happened on Sunday night, with follow-up episodes on Wednesday, Saturday, Sunday, and Monday. A stool culture taken the morning after my first episode did not test positive for C diff, so thankfully I still had Immodium available to me for control, otherwise I'm sure things would have gotten out of hand. In even better news, my brother visited me for the first time since early May. He's a resident at the University of Wisconsin hospital in Madison, so he's really busy. The time we got to spend catching up and hanging out, though complicated by getting chemo, was still precious, and I'm most glad we had some time together after a really long time without it.

I just now feel like I'm kicking this cycle's chemo feeling. Physically, I shouldn't complain -- it really was expecting worse than what it's been given all the chemo I've had to date. But mentally, these later cycles are becoming more and more of a drain. To bring my running background back into it, it's like the end of a race, where I'm huffing and puffing even though the end is in sight. Still, it's time to kick things into gear and get some things done over the next couple of days. I then get a visit from Ashley, and I want to be able to enjoy it to the fullest!

Two More to Go

Tomorrow, I start cycle 16. That and cycle 17, and I will be done with chemo. There's still the radiation afterwards, but that will be a 10 day course, versus a yearlong ordeal. The last two cycles are both irinotecan and temozolomide. One change: this coming cycle, I am not taking the suprax antibiotic. Its function is to kill intestinal bacteria that could contribute to irinotecan diarrhea. However, since it can also create an intestinal environment in which C diff can thrive, there's the risk of that kind of diarrhea... And since it happened to me during cycles 13 and 14, we're trying to see if not taking it this time will keep the C diff at bay. But there's now an increased risk of irinotecan diarrhea, so hopefully that doesn't get me.

I had another round of scans last week, a PET scan and a chest CT, as usual. The results, in the words of Dr. Meyers, were the best we could hope for. The best news is that this one noticeable lung spot that we've been following, that was thought to have shrunk at one point, is looking more and more like it is innocuous. It has not really changed in size since the beginning. "A confluence of vessels," was what the interpreting radiologist said on the report. So hopefully it is innocuous. In other news, there was no mention of the smaller spots I'd mentioned before on the report. Either they might not have been flagged this time, or they've disappeared, in which case they could have been tumors. That's why I'm getting the radiation -- if there were tumors in my lungs, it's best to give them some extra treatment to ensure nothing comes back.

Next round of scans won't happen until 6 weeks after my last radiation dose, to avoid false positives showing up on a PET scan. That would put them in late March, assuming no further delays. Getting closer and closer to being done and going home!

A person, can develop a cold

The title of this post is courtesy of the musical Guys and Dolls. No, I didn't see that one on Broadway. Been a while since that one was playing. I saw a spring performance of it at my high school during my senior year. A number of my classmates took part. I remember that line in one of the songs. It felt apt given how my second week of cycle 15 progressed.

I did power through the post-chemo weekend pretty well, with surprisingly minimal crashing. What stayed with me were traces of the cold that had initially delayed me. Though most of the symptoms were gone when I'd started the cycle, there was a small residual cough. It never went away, and by the end of the weekend, it started becoming more frequent. I also started feeling weak and feverish. For three days, my temperature hovered around 37.5 C, and then it broke the 38 C threshold, meaning it was hospital time. The blood cultures turned up no bacterial infections, but a nasal swab revealed rhinovirus, so yes, it was that cold of mine making a comeback when my immune system was down.

I was in there until Sunday, when my blood counts began their comeback, one day behind schedule compared to cycles 3, 6, 9, and 12. Maybe it would have been longer -- Dr. Meyers, based on experience with past patients, worried that my counts might take an entire week to come up, and had me receive daily immune-boosting shots while I was inpatient. He was even thinking of continuing them this week, but then my blood counts on Monday morning turned out to be very robust, so that did not end up happening. I'm going back in now for another round of blood counts, and then another round of scans. If they turn out good, we can begin planning the endgame of my treatment. Should be only two more months now if everything's on schedule!