Been a long time since I last checked in. The new year came, and with it, my very last round of chemo, cycle 17. Yesterday, I had my very last chemo treatment. I can't believe that phase is finally over. It was just about a year ago that I'd started.
I've spent the day resting. I look forward to getting my energy back, both physically and mentally. Though I'm not completely done yet. I still have my radiation treatment, which starts on Wednesday. It's not supposed to take as much out of me. I certainly hope it doesn't, because having your energy sapped time and time again certainly gets more tiring each time it's done.
It feels great to have the end so close. But things won't be over with the end of treatment. There will be numerous follow-ups. For the first year, I'll have the usual scans, PET and chest CT, every three months. Every month in between, I am to get a complete blood count and a chest X-ray, the former also being taken when I have the three-month scans. The first of these will be in late March. Clean scans here, and I'll have my chemo port taken out. At the six month mark, if the scans are again clean, I'll get some more detailed blood work done. I might even need to get some of my immunizations redone, as the repeated beatings chemo gave my immune system might have wiped some of them out.
I'll have more details about the radiation in my next post. For now, though, time to get some more rest. I certainly hope this is the last time I'll ever have to deal with chemo and its side effects.
Saturday, January 18, 2014
Tuesday, December 31, 2013
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!
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!
Sunday, December 15, 2013
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!
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!
Wednesday, December 11, 2013
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!
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!
Saturday, November 30, 2013
Crossing Chemos off the List
I'm currently recovering from the heavy-hitting chemo I received this week for cycle 15. Those nasty side effects I wrote about in my early blog entries are back. My throat hurts after the chemo killed the mucus and dried it out. My appetite has gone back to intense cravings for small meals heavy on protein. I've lost a number of my taste buds. I don't have much taste for bread. This all said, though, I could be feeling worse. The prior three times I received this chemo combination, I had a big crash and slept most of the weekend, but here I am this morning writing this post!
The medical explanation would be that the extra off week gave me more time to recover from my last cycle, but I would also credit something else -- the good feeling of crossing these chemos off the list! It started on Monday, which was my last dose of vincristine. Then on Tuesday, I got my last doses of doxorubicin and cyclophosphamide. On Thursday, I was disconnected from IV fluids, and with that, there was no more evening backpack.
As good as it feels not to have to get any additional doses of the heavy-hitters, or constant IV fluids, I'm still far from done. First off, I have to get through my low immunity period. Then, I have two more cycles of irinotecan and temozolomide. But with no more heavy-hitters lined up, I am feeling this big rush of positive energy that the side effects have yet to make a dent in. Power through, power through, power through!
The medical explanation would be that the extra off week gave me more time to recover from my last cycle, but I would also credit something else -- the good feeling of crossing these chemos off the list! It started on Monday, which was my last dose of vincristine. Then on Tuesday, I got my last doses of doxorubicin and cyclophosphamide. On Thursday, I was disconnected from IV fluids, and with that, there was no more evening backpack.
 |
| My Monday doxorubicin dose. Harsh stuff. It's bright red color makes me think of the red button in all those childhood cartoons, where bad things happen after it gets pressed. |
Tuesday, November 19, 2013
Delay #2
I was all set to start cycle 15 yesterday. But I awoke that morning with a fever and a sore throat. Chemo was put on hold, with the chance of starting Tuesday as I only needed to come to the clinic for four days for this cycle. When I wasn't getting better, and the results of a nose swab test came back confirming I'd caught a cold, chemo was postponed to next week.
Good news is that I'm feeling better than I was yesterday. The sore throat is gone, and while my nose is now running a bit, I don't feel as feverish or weak as I did yesterday, when I spent most of the day in bed resting. Though I'm not happy about being delayed, I do now have an opportunity to do more Ph.D. work and enjoy more food before I take the beating that cycle 15 will inevitably give me, so I'd best make the most of it.
Good news is that I'm feeling better than I was yesterday. The sore throat is gone, and while my nose is now running a bit, I don't feel as feverish or weak as I did yesterday, when I spent most of the day in bed resting. Though I'm not happy about being delayed, I do now have an opportunity to do more Ph.D. work and enjoy more food before I take the beating that cycle 15 will inevitably give me, so I'd best make the most of it.
Friday, November 15, 2013
Squat Update
No, squats aren't the only rehab exercise I do, but they're my favorite, so I'll be focusing on them here. I had started out doing body weight squats, first using a grab bar to support me, then over a chair in case I slip and fall. I still like to do them over a chair for safety, but now I've added some weight. Not a lot -- I may never be cleared to lift large amounts of weight again because of potential heart damage from doxorubicin, one of the chemo drugs I've received. This is definitely a drag; the weight room was one of my favorite places to work out before my diagnosis. But adding some weight still gives me some of that weight room feeling. In the case of squats, my physical therapist introduced a 2 kg medicine ball, which I hold in front of me with my arms fully extended, before my most recent cycle. Since I don't have my own personal supply of medicine balls, I've substituted my backpack, which I can fill to 2 kg or a bit more if I so desire.
I've made more strides recently. Yesterday and today, I went about my business without using my cane at all. Yesterday, this included walking to a follow-up with my prosthetist, plus then heading to Midtown on the subway to pick up a shirt I'd ordered online and then back to a Trader Joe's on the Upper West Side for groceries before calling it a day. I still take my cane with me even when I don't want to use it in case I get tired, but I'm going to go caneless now as much as I can. I'll still use my cane if my backpack is loaded up, though; going regularly without it while wearing my backpack can be my next step.
I shouldn't say it's just been squats. There are other exercises that have been important -- leg lifts, swaying, stretches, and balancing on my prosthetic leg are some of the other big ones -- but given my huge affinity for the squat that goes back to summer 2012, I'm going to talk it up as much as I can. Plus it provides a nice backdrop for this great video I recently saw and want to share. It's of a ticket machine in the Moscow subway that issues a subway ticket in exchange for 30 squats instead of the usual monetary payment. I wouldn't mind seeing a few of these pop up in New York! :)
I've made more strides recently. Yesterday and today, I went about my business without using my cane at all. Yesterday, this included walking to a follow-up with my prosthetist, plus then heading to Midtown on the subway to pick up a shirt I'd ordered online and then back to a Trader Joe's on the Upper West Side for groceries before calling it a day. I still take my cane with me even when I don't want to use it in case I get tired, but I'm going to go caneless now as much as I can. I'll still use my cane if my backpack is loaded up, though; going regularly without it while wearing my backpack can be my next step.
I shouldn't say it's just been squats. There are other exercises that have been important -- leg lifts, swaying, stretches, and balancing on my prosthetic leg are some of the other big ones -- but given my huge affinity for the squat that goes back to summer 2012, I'm going to talk it up as much as I can. Plus it provides a nice backdrop for this great video I recently saw and want to share. It's of a ticket machine in the Moscow subway that issues a subway ticket in exchange for 30 squats instead of the usual monetary payment. I wouldn't mind seeing a few of these pop up in New York! :)
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