A quick note to everyone, since there was a question as to whether I'd begin cycle 14 today or I'd be delayed, it is the former that has happened. I had another C diff test when I came into clinic this morning. The result came back negative, so I got my chemo. I also saw Dr. Healey for a followup. He was pleased with my progress and the state of my left leg stump. So, good news on two fronts!
Hopefully, this cycle goes more smoothly than the last one, with no crazy chemo crash during the first week and no recurrence of C diff. Ashley comes again in just under two weeks. Without a delay, this would have been at the end of a good week, but even with it now occurring at the end of a second week, we'll make the most of it. Plus, the visit will feel like an instant reward for completing this cycle's chemo. Nothing wrong with some instant gratification... But first, time to get through the chemo!
Monday, October 28, 2013
Friday, October 25, 2013
Speedbump
So much for this past week being a chemo week, or my diarrhea abating. I never got back to normal in that department before Monday, and as a result, I had cycle 14 postponed until next week. I've been up and down as far as diarrhea goes this week. A stool test I had on Wednesday came up negative, but that does not mean I'm out of the woods. My course of Flagyl ends on Saturday morning. It's possible for the C diff to come back yet again on Monday if enough of it hasn't been killed off. If that's the case, I'll have to wait again to start cycle 14, and begin a course of vancomycin. Hopefully, that won't be the case; I'd like to get done with chemo sooner rather than later!
I've tried not to push myself too hard this week so I can regain strength. I had my fun when Ashley was here :) For the rest of her visit, we went to Brooklyn's botanical garden and then came back to Manhattan and had Indian food for dinner. It's a large expanse of green that makes you feel like you're getting away from all the hustle and bustle of New York. We spent by far most of our time looking at the roses, which is just one small section, so there's a lot we missed. But we couldn't help ourselves, both having a thing for rose gardens. Great opportunity for pictures too; below is my favorite of all the roses in the garden. I also spent some time drawing in a sketchbook Ashley got me; her efforts on making me more artistic are finally working!
I'm going to do my best now to have an enjoyable and restful weekend, in preparation for the resumption of chemo. Hopefully I don't get delayed again. As great as it has been to have needed recovery time, and looking back it has been needed -- I didn't head into this week feeling as recovered as I did previous weeks in which I was slated to receive chemo -- I want to most of all be done. It also disrupted my schedule, as there were a couple of events I wanted to see during my next two cycles that originally fell during good weeks that now don't. But again, it wasn't all bad. Besides the recovery time, I got to spend a little extra time with Ashley, riding with her to the airport and seeing her off when I otherwise would have had to get chemo. I do have to remind myself from time to time to look on the bright side!
I've tried not to push myself too hard this week so I can regain strength. I had my fun when Ashley was here :) For the rest of her visit, we went to Brooklyn's botanical garden and then came back to Manhattan and had Indian food for dinner. It's a large expanse of green that makes you feel like you're getting away from all the hustle and bustle of New York. We spent by far most of our time looking at the roses, which is just one small section, so there's a lot we missed. But we couldn't help ourselves, both having a thing for rose gardens. Great opportunity for pictures too; below is my favorite of all the roses in the garden. I also spent some time drawing in a sketchbook Ashley got me; her efforts on making me more artistic are finally working!
I'm going to do my best now to have an enjoyable and restful weekend, in preparation for the resumption of chemo. Hopefully I don't get delayed again. As great as it has been to have needed recovery time, and looking back it has been needed -- I didn't head into this week feeling as recovered as I did previous weeks in which I was slated to receive chemo -- I want to most of all be done. It also disrupted my schedule, as there were a couple of events I wanted to see during my next two cycles that originally fell during good weeks that now don't. But again, it wasn't all bad. Besides the recovery time, I got to spend a little extra time with Ashley, riding with her to the airport and seeing her off when I otherwise would have had to get chemo. I do have to remind myself from time to time to look on the bright side!
Saturday, October 19, 2013
Week 3, Cycle 13
As I write this evening, I have but one more day until I'm back on chemo. That third week really went by fast. I started off on a high note with my 5K last Saturday. The course was two times around a loop along the south half of Central Park. Though it took a while to walk it all (an hour and 20 minutes to be exact), I did it without using my cane. It was the longest I have walked to date without it. I was not alone either. My parents walked with me too. So did one of the nurses who gives me chemo, Janelle, and her husband. Thank you for walking with me, and thank you to all of you who supported my walk with donations or kind words of support. Here's me doing the victory pose at the end of the walk:
From the next day onwards, though, things took a bit of a wrong turn. I started having diarrhea. As I've said before, this is the most significant side effect of irinotecan. There is a protocol we're given to follow if it happens. Take two 2 mg tablets of Immodium, and then take one tablet every two hours until it's under control, with a maximum of eight tablets in 24 hours. This is actually twice the maximum daily dose on the bottle. I have had instances of diarrhea in past irinotecan/temozolomide cycles that Immodium has almost always been able to control. This time around, while Immodium would give me a day's relief, the diarrhea would come back and I'd have to repeat the process. The culprit was found via stool test when I went in for my blood counts on Tuesday, and it was not irinotecan. My C. diff infection from the previous cycle was back. As I had an immune system this time around, there was no fever and hospitalization, but it was back to the antibiotics nonetheless. The specific one used here is called Flagyl; if I get another recurrence, I'll get the stronger vancomycin. Happily, the diarrhea is now under control. Hopefully, this is the last time I deal with C. diff, but I do worry about what will happen in cycle 15 when I'll once again get chemo that knocks out my immune system.
Ashley is now visiting. So far, we've done some wedding planning, gone out for walks, and painted pictures. That last item is something I'm going to get back to once I paint something I deem worthy of posting here; I was never much into painting before, but then the exhibit I saw at the MOMA before cycle 12 proved to be an inspiration. Ashley is a gifted artist, and she's helping to train me :)
We'll be going out again tomorrow, and then the next day, she has to go back to work and I have to go back to chemo. I am most definitely looking forward to being married to Ashley instead of chemo. Just 4 more cycles now, time to finish strong!
From the next day onwards, though, things took a bit of a wrong turn. I started having diarrhea. As I've said before, this is the most significant side effect of irinotecan. There is a protocol we're given to follow if it happens. Take two 2 mg tablets of Immodium, and then take one tablet every two hours until it's under control, with a maximum of eight tablets in 24 hours. This is actually twice the maximum daily dose on the bottle. I have had instances of diarrhea in past irinotecan/temozolomide cycles that Immodium has almost always been able to control. This time around, while Immodium would give me a day's relief, the diarrhea would come back and I'd have to repeat the process. The culprit was found via stool test when I went in for my blood counts on Tuesday, and it was not irinotecan. My C. diff infection from the previous cycle was back. As I had an immune system this time around, there was no fever and hospitalization, but it was back to the antibiotics nonetheless. The specific one used here is called Flagyl; if I get another recurrence, I'll get the stronger vancomycin. Happily, the diarrhea is now under control. Hopefully, this is the last time I deal with C. diff, but I do worry about what will happen in cycle 15 when I'll once again get chemo that knocks out my immune system.
Ashley is now visiting. So far, we've done some wedding planning, gone out for walks, and painted pictures. That last item is something I'm going to get back to once I paint something I deem worthy of posting here; I was never much into painting before, but then the exhibit I saw at the MOMA before cycle 12 proved to be an inspiration. Ashley is a gifted artist, and she's helping to train me :)
We'll be going out again tomorrow, and then the next day, she has to go back to work and I have to go back to chemo. I am most definitely looking forward to being married to Ashley instead of chemo. Just 4 more cycles now, time to finish strong!
Thursday, October 10, 2013
First Post-Amputation 5K
Since high school, running has been my favorite form of physical activity. I was actually in the process of getting myself into shape for running races when my symptoms struck, which was actually a year and a week ago to this day.
I still plan on running a race one day, and while I'm still far from that point, I will be taking an important step in that direction this Saturday, when I'll be walking in the Terry Fox Run New York, a 5K fundraiser for cancer research at Sloan-Kettering. My team's name is the Chemo Warriors.
The run is named after Terry Fox, a young Canadian who in 1977 had his right leg amputated above the knee due to osteosarcoma, another form of bone cancer. In 1980, he embarked on a cross-Canada run to raise money for cancer research, running a marathon a day. His journey lasted over 3000 miles, and was sadly cut short when his cancer recurred and ultimately claimed his life. His legacy, however, remains, with Terry Fox runs now being held worldwide to raise funds for cancer research.
I first read about Terry's story early on in the course of my treatment, when I found myself looking up stories of other bone cancer patients online. His determination and dedication made a big impression on me, and thus when the opportunity to participate in a Terry Fox run first came up, I made it a rehab goal. I look forward to a great walk this Saturday, and eventually, my first post-amputation run.
I still plan on running a race one day, and while I'm still far from that point, I will be taking an important step in that direction this Saturday, when I'll be walking in the Terry Fox Run New York, a 5K fundraiser for cancer research at Sloan-Kettering. My team's name is the Chemo Warriors.
The run is named after Terry Fox, a young Canadian who in 1977 had his right leg amputated above the knee due to osteosarcoma, another form of bone cancer. In 1980, he embarked on a cross-Canada run to raise money for cancer research, running a marathon a day. His journey lasted over 3000 miles, and was sadly cut short when his cancer recurred and ultimately claimed his life. His legacy, however, remains, with Terry Fox runs now being held worldwide to raise funds for cancer research.
I first read about Terry's story early on in the course of my treatment, when I found myself looking up stories of other bone cancer patients online. His determination and dedication made a big impression on me, and thus when the opportunity to participate in a Terry Fox run first came up, I made it a rehab goal. I look forward to a great walk this Saturday, and eventually, my first post-amputation run.
Tuesday, October 8, 2013
Another Long Break
Another long break between posts! Certainly did not intend for this to happen again, but in spite of being a computer scientist, I seem to have a limited number of keystrokes in me, and I was most recently concentrating them towards an upcoming paper deadline. I've made progress, but also had a couple of setbacks. At this point, I'm going to back off and make sure I do a good job rather than a hasty one, especially since my work push induced a nice chemo crash the last half of last week where I slept most of Wednesday, half of Thursday, and a good bit of Friday as well. There are going to be other paper deadlines that I can send a better paper to than I would be able to send to this one.
I'm in the midst of cycle 13, another one with the combination of irinotecan and temozolomide. Last time I checked in, I was beginning the third week of cycle 12, clear of the neutropenia period. I began that week with hair, as you can see here. It had started to regrow at the end of cycle 11, but fell out starting the afternoon of the day after I left the hospital.
Another event of note that happened during that week was that I had a height adjustment made to my prosthesis. Back in September, when Ashley and I went to the zoo and did our height comparison, I commented that I was slouching a bit in the picture I posted, but I subsequently noticed that I was standing shorter than usual because my right leg felt a little longer than my left one. At my most recent followup with my prosthetist, he noticed that the disparity was affecting my walk, and made an adjustment that fixed it. The effects became really apparent this past Sunday when I made a trip to the Macy's downtown to return a couple of items I'd bought from them online. The stairs I had to take to get into and out of subway stations were suddenly a lot easier to navigate. It's not like the height adjustment was all that much. Maybe it was half an inch at most. But then I thought of the opening scene from the Big Bang Theory, where Sheldon Cooper talked about the effects of a stair being off by as little as 2 millimeters, and it suddenly all made sense!
So far, taking things easier has helped me greatly this week. My energy has been better, and unlike the long naps I took last week, one I took this afternoon actually made me feel less tired! Here's hoping that keeps up. I wouldn't mind a nice bust of energy next week, not just for work, but also so that can fully enjoy a visit from Ashley at its conclusion!
I'm in the midst of cycle 13, another one with the combination of irinotecan and temozolomide. Last time I checked in, I was beginning the third week of cycle 12, clear of the neutropenia period. I began that week with hair, as you can see here. It had started to regrow at the end of cycle 11, but fell out starting the afternoon of the day after I left the hospital.
Another event of note that happened during that week was that I had a height adjustment made to my prosthesis. Back in September, when Ashley and I went to the zoo and did our height comparison, I commented that I was slouching a bit in the picture I posted, but I subsequently noticed that I was standing shorter than usual because my right leg felt a little longer than my left one. At my most recent followup with my prosthetist, he noticed that the disparity was affecting my walk, and made an adjustment that fixed it. The effects became really apparent this past Sunday when I made a trip to the Macy's downtown to return a couple of items I'd bought from them online. The stairs I had to take to get into and out of subway stations were suddenly a lot easier to navigate. It's not like the height adjustment was all that much. Maybe it was half an inch at most. But then I thought of the opening scene from the Big Bang Theory, where Sheldon Cooper talked about the effects of a stair being off by as little as 2 millimeters, and it suddenly all made sense!
So far, taking things easier has helped me greatly this week. My energy has been better, and unlike the long naps I took last week, one I took this afternoon actually made me feel less tired! Here's hoping that keeps up. I wouldn't mind a nice bust of energy next week, not just for work, but also so that can fully enjoy a visit from Ashley at its conclusion!
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