The days can go by so fast sometimes during treatment, and now I see it's been almost 3 weeks since my last post! Well, to be more specific, it's the days when I'm not getting chemo that go by more quickly. How unfortunate; those are the days I want to last longer!
I'm currently in the first week of cycle 7 and feeling quite tired. It first hit on Tuesday (treatment started then and ends Saturday this week due to the Memorial Day holiday). It's another irinotecan/temozolomide cycle, like cycles 4 and 5. I would get bouts of fatigue during those cycles too, most often during the first week when I'd get both drugs, but I have been feeling very tired this week. I took a long nap Tuesday afternoon and then couldn't sleep well at night. On Wednesday, I was able to make it through physical therapy ok, and didn't feel too sleepy, but then yesterday, I slept while getting chemo, and right after lunch too. This morning, I'm a little better, but still tired.
So, now to get to what happened between the end of the ifosfamide/etoposide treatment of cycle 6 and now... I'd last reported that I was feeling less drained than expected. As true as it was, all it meant was that the crash was delayed. It wasn't a ginormous crash, but it was enough to make me miss a session of physical therapy. This mirrored my blood counts, which had their drop during the latter part of the week. Though I was hoping to make it to my brother's med school graduation in Virginia with my family during the ensuing weekend, I instead spiked a fever on Friday night and was in the hospital. I was thankfully in there only for one evening, but I was still tired, and I stayed back with my uncle who was visiting while my parents made the trip south. We were all hoping to make the trip together, but sometimes things don't work out like you hope...
The scans I was expecting during the third week of cycle 6 actually won't be happening until June 12; the every 3 cycles I thought it was going to be was only after the first 3. After those, the interval is roughly every 3 months. The Tuesday of this week, Ashley arrived for a visit and has been with me since, accompanying me on a brief trip that I will have to talk about in another post to keep this one from being too long. Also a feature of that week: the hair on my head and face fell out once again, and now I'm back to the very unhairy state I was in since the end of cycle 1.
More posts will come as my energy allows, so stay tuned!
Friday, May 31, 2013
Saturday, May 11, 2013
Drained, But Less Than Expected
It seemed like forever, but after 5 days of ifosfamide, etoposide, and IV fluids round the clock, I am finally through the chemo part of cycle 6. Now the recovery begins. I feel quite drained right now, but pleasantly surprised by the amount of energy I do have -- I was expecting to feel a lot worse, like the crash weekends I had during my first three cycles. I have had to lie down and rest quite a bit, yes, but not for the entire day.
I must emphasize that I was expecting to feel a lot worse. Cyclophosphamide, a drug related to ifosfamide, did a number of me during the first three cycles. But that wasn't the only "tough" drug in there -- when I'd mentioned the side effects doxorubicin before, I focused on the risk of heart damage, but it is also a potent nausea inducer. Etoposide is not a big nausea inducer, so I had that going for me. Still, I needed the fluids to keep flushing my bladder like I did for cyclophosphamide during the first three cycles, and that was of course no fun.
As for nausea, it started to kick in Monday afternoon during my first dose of ifosfamide, but thankfully a very aggressive course of anti-nausea meds beat it back. And I mean aggressive. As soon as one wore off, time for another. There are actually four total anti-nausea meds that can be used during treatment, three that I have at my disposal in pill form. The one I don't have is dexamethasone, a steroid. I get that by IV in the clinic. Funny thing -- a skier received a 2 year ban for using it as a performance-enhancer. Well, if it takes steroids to beat cancer, so be it. Though before anyone thinks I'm going to turn into one of those hulked-up athletes, dexamethasone is not that kind of steroid. The others I have available as pills are ondansetron, hydroxyzine, and lorazepam. Lorazepam I'd mentioned in a previous post; it addresses "anticipatory" nausea (i.e. you get nauseous thinking about food). Hydroxyzine targets motion-sickness style nausea. Ondansetron is a general-purpose anti-nausea medicine. At the clinic, I get these by IV, and take pills when I'm out.
With medicine schedule in hand, getting the needed IVs during the day and waking up at prescribed times for pills at night, I hardly ever felt nauseous. But there was a catch. Lorazepam and hydroxyzine cause drowsiness, and lorazepam has made my brain "crash" before (cycle 4). Continually taking them left me in a zombie-like state for much of each day. I'd be in a fog upon waking up, which would clear a bit by mid-morning, and I'd have some useful brain functionality until after lunch. Then, it was a slow descent back into the fog, which of course reached its worst at bedtime. But I could actually eat decent amounts of food without feeling sick! So yes, I'll take being a zombie over being nauseous. I was in a fog much of today too.
I'll start backing off the meds a bit tomorrow; hopefully, I will recover quickly to a more normal state. Now I have to brace for the period of very low immunity that comes over the next few days and do my best not to get sick. My rehab and other plans for this month depend on it. I'm doing my best to be careful, taking inspiration from noted television germophobe Sheldon Cooper. I find myself reaching for the Purell a lot these days as well...
I must emphasize that I was expecting to feel a lot worse. Cyclophosphamide, a drug related to ifosfamide, did a number of me during the first three cycles. But that wasn't the only "tough" drug in there -- when I'd mentioned the side effects doxorubicin before, I focused on the risk of heart damage, but it is also a potent nausea inducer. Etoposide is not a big nausea inducer, so I had that going for me. Still, I needed the fluids to keep flushing my bladder like I did for cyclophosphamide during the first three cycles, and that was of course no fun.
As for nausea, it started to kick in Monday afternoon during my first dose of ifosfamide, but thankfully a very aggressive course of anti-nausea meds beat it back. And I mean aggressive. As soon as one wore off, time for another. There are actually four total anti-nausea meds that can be used during treatment, three that I have at my disposal in pill form. The one I don't have is dexamethasone, a steroid. I get that by IV in the clinic. Funny thing -- a skier received a 2 year ban for using it as a performance-enhancer. Well, if it takes steroids to beat cancer, so be it. Though before anyone thinks I'm going to turn into one of those hulked-up athletes, dexamethasone is not that kind of steroid. The others I have available as pills are ondansetron, hydroxyzine, and lorazepam. Lorazepam I'd mentioned in a previous post; it addresses "anticipatory" nausea (i.e. you get nauseous thinking about food). Hydroxyzine targets motion-sickness style nausea. Ondansetron is a general-purpose anti-nausea medicine. At the clinic, I get these by IV, and take pills when I'm out.
With medicine schedule in hand, getting the needed IVs during the day and waking up at prescribed times for pills at night, I hardly ever felt nauseous. But there was a catch. Lorazepam and hydroxyzine cause drowsiness, and lorazepam has made my brain "crash" before (cycle 4). Continually taking them left me in a zombie-like state for much of each day. I'd be in a fog upon waking up, which would clear a bit by mid-morning, and I'd have some useful brain functionality until after lunch. Then, it was a slow descent back into the fog, which of course reached its worst at bedtime. But I could actually eat decent amounts of food without feeling sick! So yes, I'll take being a zombie over being nauseous. I was in a fog much of today too.
I'll start backing off the meds a bit tomorrow; hopefully, I will recover quickly to a more normal state. Now I have to brace for the period of very low immunity that comes over the next few days and do my best not to get sick. My rehab and other plans for this month depend on it. I'm doing my best to be careful, taking inspiration from noted television germophobe Sheldon Cooper. I find myself reaching for the Purell a lot these days as well...
Tuesday, May 7, 2013
Cycle 5 in Pictures
As I said yesterday, I began cycle 6, but I'd like to take this moment to share a few pictures from cycle 5 that show some of what went on. First one is of me in the clinic during week 1. For effect, I'm wearing my prosthetic leg turned sideways. Also to note is that while I've lost a good bit of hair, my mustache and some of the hair on my chin had begun to grow back:
.JPG)
Fast forward to the end of the cycle, and that hair has become rich and full, and the rest of my hair has started to come back as well. Facial hair, head hair, eyebrows, eyelashes, body hair... This cycle 6 will likely knock it out again, but I'm enjoying it while I still have it. Here's me on Sunday posing in front of the new 1 World Trade Center tower currently under construction:
Now, I'd mentioned before that the fit of the prosthetic leg is very much dependent on the prosthetic socks that go over my silicone sleeve. I have to carry socks with me wherever I go, as during the course of an outing, I might need to change the number I'm wearing. Here is a change of socks in action:
Fast forward to the end of the cycle, and that hair has become rich and full, and the rest of my hair has started to come back as well. Facial hair, head hair, eyebrows, eyelashes, body hair... This cycle 6 will likely knock it out again, but I'm enjoying it while I still have it. Here's me on Sunday posing in front of the new 1 World Trade Center tower currently under construction:
Now, I'd mentioned before that the fit of the prosthetic leg is very much dependent on the prosthetic socks that go over my silicone sleeve. I have to carry socks with me wherever I go, as during the course of an outing, I might need to change the number I'm wearing. Here is a change of socks in action:
Finally, my nails have shown the signs of multiple rounds of chemo. This is something Dr. Meyers, the head of the sarcoma team, told me I would see. Perfectly normal, like tree rings actually. I can see four bands, and I had four cycles before this one:
Monday, May 6, 2013
Cycle 6 Begins
Last time I checked in, I was in the first week of cycle 5. Now, it's cycle 6, with irinotecan and temozolomide replaced by ifosfamide and etoposide. I had the etoposide go in before lunch. It took about an hour. My nurse told me it does not have many side effects outside of hair loss and immune system suppression. Now I have a bag of ifosfamide dripping into my veins. I feel a bit queasy but otherwise fine right now, but I know that its side effects will eventually kick in, and cause a number of the same problems I was reporting when I was getting cyclophosphamide. Hopefully since I'm getting just two drugs instead of the three from cycles 1-3, I won't feel as bad as I did during those cycles. I will get the drugs today through Friday. Week 2 will be spent resting and waiting for my blood counts to recover. During week 3, I'll get more scans to see where I'm at.
To recap cycle 5 developments: I was still focused on rehab, with 2x/week physical therapy plus exercises outside of it. One morning, when I was getting chemo, I was using one of the grab bars in the clinic to do a couple of my exercises, and a doctor and a nurse both asked if I was ok and needed help (they thought I was having a lot of trouble moving). I had to explain that I was doing physical therapy, and not struggling to get back to my seat. I paid a couple of visits to the prosthetist for more adjustments. The feeling of tightness at the top and the associated discomfort are gone, and now the only problems I'm having are at the bottom of my left leg. I feel discomfort and pressure there when I walk, presumably from movement of the limb within the socket. Hopefully, more adjustments will be able to fix this. Even with the discomfort issues, I'm still progressing very well with my walking. I'm now using one crutch rather than two to go places. This included a subway ride and a trip to lower Manhattan yesterday. My physical therapist might move me to a cane next week. Outside of rehab, things were smooth until 8 days ago, when I got sick, in spite of the chemo cycle not destroying my immune system. Make it now 3 of the first 5 cycles where I've come down with an illness of some kind. Minor each time, but still a nuisance. This time, I was nauseous and able to eat very little for most of the day, and slept most of the time from late afternoon until the next morning. Then I had a bout of diarrhea that lasted into the following morning. Was it the illness or the irinotecan? I don't think I'll have an answer, but per procedure while in an irinotecan cycle, I came into the clinic, where I received IV fluids. Thankfully, the diarrhea resolved while I was there.
Hopefully cycle 6 is not too hard on me; I'm hoping to actually get out of New York a couple of times during my recovery period. Haven't left since the day I got here, and while New York is a big city with a lot going on, my world has still felt very small since I began treatment. The subway ride felt great; I'm sure travel outside of New York will too. My ability to travel will all depend on my immune system bouncing back in a timely manner after it takes a hit from the chemo drugs, so I hope that happens!
To recap cycle 5 developments: I was still focused on rehab, with 2x/week physical therapy plus exercises outside of it. One morning, when I was getting chemo, I was using one of the grab bars in the clinic to do a couple of my exercises, and a doctor and a nurse both asked if I was ok and needed help (they thought I was having a lot of trouble moving). I had to explain that I was doing physical therapy, and not struggling to get back to my seat. I paid a couple of visits to the prosthetist for more adjustments. The feeling of tightness at the top and the associated discomfort are gone, and now the only problems I'm having are at the bottom of my left leg. I feel discomfort and pressure there when I walk, presumably from movement of the limb within the socket. Hopefully, more adjustments will be able to fix this. Even with the discomfort issues, I'm still progressing very well with my walking. I'm now using one crutch rather than two to go places. This included a subway ride and a trip to lower Manhattan yesterday. My physical therapist might move me to a cane next week. Outside of rehab, things were smooth until 8 days ago, when I got sick, in spite of the chemo cycle not destroying my immune system. Make it now 3 of the first 5 cycles where I've come down with an illness of some kind. Minor each time, but still a nuisance. This time, I was nauseous and able to eat very little for most of the day, and slept most of the time from late afternoon until the next morning. Then I had a bout of diarrhea that lasted into the following morning. Was it the illness or the irinotecan? I don't think I'll have an answer, but per procedure while in an irinotecan cycle, I came into the clinic, where I received IV fluids. Thankfully, the diarrhea resolved while I was there.
Hopefully cycle 6 is not too hard on me; I'm hoping to actually get out of New York a couple of times during my recovery period. Haven't left since the day I got here, and while New York is a big city with a lot going on, my world has still felt very small since I began treatment. The subway ride felt great; I'm sure travel outside of New York will too. My ability to travel will all depend on my immune system bouncing back in a timely manner after it takes a hit from the chemo drugs, so I hope that happens!
Thursday, April 18, 2013
Focused on Rehab
All through last week, I kept telling myself I'd make another post, then I don't, I start my 5th chemo cycle, and now it's been almost 2 weeks since my last post. Hope this doesn't become a habit! Over this span of time, I've been focused on rehab. Specifically, getting my legs strong enough for sustained walking in my prosthesis. It's a process that I wish would go by quicker, but with chemotherapy weakening me, and the changing shape of my leg, it's going to take time.
I had a couple of nice crutch-assisted walks to Central Park on Saturday and Monday last week. Then on Tuesday, when I saw my prosthetist for a follow-up, I had soreness in the remains of my lower left leg that was impeding my ability to walk. I also was experiencing some pain there when trying to walk unassisted on prior days. Turned out I wasn't putting on enough prosthetic socks. These are important in getting the right fit. The way my prosthetic leg works, I first put a silicone sleeve with a pin in it over my lower left leg. The pin goes into a hole at the bottom of the socket when I put my leg in. This locks it into place. However, the size of my leg varies day by day, and it's expected to shrink going down the road. This is where the socks come in, to ensure a snug fit, so my leg does not slide around in the prosthesis. I have several socks of different thicknesses to help me get the right fit. I wasn't putting a thick enough layer of socks on, which caused the sliding. This made walking without crutches more difficult. Putting on more socks fixed the problem, and the next few days were great. But then something else developed during the weekend -- the fit became tight at the knee (the socket comes right up to it, with the sides going around it), and loose in the bottom. My theory is that the lower part of the leg has continued to shrink, while the rehab has strengthened the part around the knee, causing it to stay relatively bigger. I've found a balance with the socks that does the job, but with some discomfort that leaves me uncomfortable walking long distances. I see the prosthetist again on Tuesday; I'm sure with some adjustments, this can be fixed and I'll be golden.
The strengthening of the muscles in the upper part of my left leg has really been a big story, though, and for that, I have to give thanks to the physical therapy department at Sloan-Kettering. I came in on a walker for my first appointment in early February, and now I'm able to walk significant numbers of steps under my own power. I still hobble a bit, but much less so than my first unassisted steps back in March, with a gait that feels quite close to normal. I'm to the point where if I'm walking around the clinic when I'm getting chemo, I do it without crutches, and with confidence. This part feels great; with more therapy, exercise, and prosthetic adjustments, I should be very mobile quite soon, and just in time. Cycle 5, which started on Monday, uses the same set of drugs as cycle 4, so while the chemo leaves me fatigued, I still have the energy to exercise, and have been able to gain strength even while undergoing chemo. My next cycle will use a new pair of drugs, ifosfamide and etoposide, the former of which is a mustard gas derivative like cyclophosphamide from cycles 1-3, which were each quite draining. I thus expect cycle 6 to take a lot out of me, so the more rehab I can get done before it, the better. Time to make it happen.
I had a couple of nice crutch-assisted walks to Central Park on Saturday and Monday last week. Then on Tuesday, when I saw my prosthetist for a follow-up, I had soreness in the remains of my lower left leg that was impeding my ability to walk. I also was experiencing some pain there when trying to walk unassisted on prior days. Turned out I wasn't putting on enough prosthetic socks. These are important in getting the right fit. The way my prosthetic leg works, I first put a silicone sleeve with a pin in it over my lower left leg. The pin goes into a hole at the bottom of the socket when I put my leg in. This locks it into place. However, the size of my leg varies day by day, and it's expected to shrink going down the road. This is where the socks come in, to ensure a snug fit, so my leg does not slide around in the prosthesis. I have several socks of different thicknesses to help me get the right fit. I wasn't putting a thick enough layer of socks on, which caused the sliding. This made walking without crutches more difficult. Putting on more socks fixed the problem, and the next few days were great. But then something else developed during the weekend -- the fit became tight at the knee (the socket comes right up to it, with the sides going around it), and loose in the bottom. My theory is that the lower part of the leg has continued to shrink, while the rehab has strengthened the part around the knee, causing it to stay relatively bigger. I've found a balance with the socks that does the job, but with some discomfort that leaves me uncomfortable walking long distances. I see the prosthetist again on Tuesday; I'm sure with some adjustments, this can be fixed and I'll be golden.
The strengthening of the muscles in the upper part of my left leg has really been a big story, though, and for that, I have to give thanks to the physical therapy department at Sloan-Kettering. I came in on a walker for my first appointment in early February, and now I'm able to walk significant numbers of steps under my own power. I still hobble a bit, but much less so than my first unassisted steps back in March, with a gait that feels quite close to normal. I'm to the point where if I'm walking around the clinic when I'm getting chemo, I do it without crutches, and with confidence. This part feels great; with more therapy, exercise, and prosthetic adjustments, I should be very mobile quite soon, and just in time. Cycle 5, which started on Monday, uses the same set of drugs as cycle 4, so while the chemo leaves me fatigued, I still have the energy to exercise, and have been able to gain strength even while undergoing chemo. My next cycle will use a new pair of drugs, ifosfamide and etoposide, the former of which is a mustard gas derivative like cyclophosphamide from cycles 1-3, which were each quite draining. I thus expect cycle 6 to take a lot out of me, so the more rehab I can get done before it, the better. Time to make it happen.
Friday, April 5, 2013
More Bounce in My Step
It only took one day after my post where I talked about how I missed my test socket to make a breakthrough with my new prosthesis. When walking to Sloan-Kettering in the morning, I figured out that I needed to get more push from my glutes specifically to reduce the pressure on what remained of my left calf. This discovery had me walking more easily, both on crutches and unassisted. I had a huge bounce in my step when I came in for treatment, which everyone noticed.
Fatigue from chemo remained at a low level overall, though a couple of untimely difficult nights with falling asleep made sure I had some from other sources. Nausea also remained under control, though it's gotten a bit worse over the latter half of the week with additional chemo administrations. I'm done with that for this cycle now, though, and I'm totally free next week, in fact. Well, not entirely free from clinical obligations -- I still have physical therapy -- but I don't have to come in for blood counts since mine remained healthy throughout the chemo administration. I was told before it started that unlike my first three cycles, this one was not guaranteed to kill my immune system and possibly my other blood cells as well, and I'm very happy it didn't.
Hopefully the nausea and slightly diminished appetite will subside soon and enable me to enjoy a completely normal week before the next cycle begins. I have a lot I want to get done, both in terms of rehab and my work. Time to make it happen.
Fatigue from chemo remained at a low level overall, though a couple of untimely difficult nights with falling asleep made sure I had some from other sources. Nausea also remained under control, though it's gotten a bit worse over the latter half of the week with additional chemo administrations. I'm done with that for this cycle now, though, and I'm totally free next week, in fact. Well, not entirely free from clinical obligations -- I still have physical therapy -- but I don't have to come in for blood counts since mine remained healthy throughout the chemo administration. I was told before it started that unlike my first three cycles, this one was not guaranteed to kill my immune system and possibly my other blood cells as well, and I'm very happy it didn't.
Hopefully the nausea and slightly diminished appetite will subside soon and enable me to enjoy a completely normal week before the next cycle begins. I have a lot I want to get done, both in terms of rehab and my work. Time to make it happen.
Tuesday, April 2, 2013
Less Fatigue Now
The past three cycles, week 2 has been a time to recuperate from the chemo administration of week 1, but not this time. Week 2 of irinotecan/temozolomide has me coming in for 5 more administrations of irinotecan, without the temozolomide. So far, so good, as I have not had the major fatigue that characterized last week. I've been feeling much better since Sunday, in fact, thanks to devoting Saturday entirely to rest. I haven't had the brain crashes either. One of the nurses told me that one of the anti-nausea medicines that I was taking the latter part of last week (lorazepam) when my nausea got a bit worse can have this effect, but I suspect getting one less chemo drug has something to do with it as well. Nausea has since gotten a bit better too, but I still get queasy after meals. The best news is that I have had no diarrhea, which is the big side effect I was told to watch out for. Only 3 more days now; hope that still holds.
One other major development to report: I had a follow-up with Dr. Healey, the surgeon who had performed my amputation, yesterday afternoon. He and one of his residents examined what remained of my left leg and saw me walk in my prosthesis, while I filled them in on how things have been going since my last visit with him in late January, when I had the stitches taken out of the amputation site. The official verdict was that I've made great progress and I'm clear to move towards full-time unassisted walking, which will involve me progressing from crutches to a cane to no aids whatsoever. As the remaining muscles in my left leg will have to gain more strength for this, and I have chemo impacting my ability to gain strength, this will take some time. Hopefully, it won't be too long of a process. Improved mobility is going to be key to me fully appreciating and enjoying New York when I'm not too worn out from chemo.
I must say that I do find myself currently missing the test socket. Its replacement is tighter, but that's not the big issue -- my leg has shrunk some since I first got the test socket, and it's going to shrink some more going forwards. The main thing is that the flexibility in the new foot puts extra stress on what remains of my left calf muscle as I put weight on it, which makes walking less comfortable than it should be. This stress is supposed to be taken up by my quads, hamstrings, and glutes, which is what happened as I adapted to putting weight on the test socket. It took about 3 weeks from when I got the test socket until I was able to take my first unassisted steps. I don't have as far to go here because I can take unassisted steps in the new prosthesis (though not as comfortably as I was able to in the test socket before making the switch), but it still is disappointing. Thankfully, I can endure more physical therapy on the irinotecan/temozolomide combination, so I'll just keep working until I'm moving like I was before, and then work from there towards full unassisted walking. I also have an appointment with the prosthetist in a week's time where I can discuss my experiences so far with the new prosthesis.
Before I end this post, I have to take some time to recognize how important Dr. Healey has been in my treatment. I couldn't talk about it in my "Beginnings" post because of how much information I had to condense to keep it from being far too long, but I have to mention it here, as my next convenient opportunity will be a ways down the road (my next follow-up with him is in three months). The bulk of my treatment is being done by the pediatric sarcoma team, whose excellent doctors and nurses are also worthy of recognition (and I'd do it right now if it wouldn't make this post as long as one of my research papers!), but Dr. Healey was the first doctor I saw here, when I had come in all worried about my recent cancer diagnosis and where I could be headed. This most recent time, and each of the previous times I'd seen him, he very patiently answered every question my family members and I asked of him, allowed us as much time as we needed to ask our questions, and always left us feeling reassured about where things were headed, even though it meant losing part of my left leg. Speaking of which -- I'm no surgery expert, but even to my untrained eye, the amputation itself couldn't have been anything but fine surgical work. The first time his team changed my dressing when I was recovering in the hospital, I was expecting to see something messy, but I was instead shocked at how clean it looked. Sure, there were stitches, but the skin looked clean, and there was hardly any blood. The healing was very rapid, and I needed very little of the pain medicine I was prescribed after I left the hospital. This undoubtedly enabled me to jumpstart my rehabilitation, and also enabled me to start chemo early (the standard schedule would have had me start a week later than I did, but I was cleared to start early upon my discharge from the hospital). The sooner I'm done and healthy, the better, so I owe a lot to Dr. Healey for getting the process off to a quick and excellent start. I'll conclude with this video of a Sloan-Kettering commercial that features him:
One other major development to report: I had a follow-up with Dr. Healey, the surgeon who had performed my amputation, yesterday afternoon. He and one of his residents examined what remained of my left leg and saw me walk in my prosthesis, while I filled them in on how things have been going since my last visit with him in late January, when I had the stitches taken out of the amputation site. The official verdict was that I've made great progress and I'm clear to move towards full-time unassisted walking, which will involve me progressing from crutches to a cane to no aids whatsoever. As the remaining muscles in my left leg will have to gain more strength for this, and I have chemo impacting my ability to gain strength, this will take some time. Hopefully, it won't be too long of a process. Improved mobility is going to be key to me fully appreciating and enjoying New York when I'm not too worn out from chemo.
I must say that I do find myself currently missing the test socket. Its replacement is tighter, but that's not the big issue -- my leg has shrunk some since I first got the test socket, and it's going to shrink some more going forwards. The main thing is that the flexibility in the new foot puts extra stress on what remains of my left calf muscle as I put weight on it, which makes walking less comfortable than it should be. This stress is supposed to be taken up by my quads, hamstrings, and glutes, which is what happened as I adapted to putting weight on the test socket. It took about 3 weeks from when I got the test socket until I was able to take my first unassisted steps. I don't have as far to go here because I can take unassisted steps in the new prosthesis (though not as comfortably as I was able to in the test socket before making the switch), but it still is disappointing. Thankfully, I can endure more physical therapy on the irinotecan/temozolomide combination, so I'll just keep working until I'm moving like I was before, and then work from there towards full unassisted walking. I also have an appointment with the prosthetist in a week's time where I can discuss my experiences so far with the new prosthesis.
Before I end this post, I have to take some time to recognize how important Dr. Healey has been in my treatment. I couldn't talk about it in my "Beginnings" post because of how much information I had to condense to keep it from being far too long, but I have to mention it here, as my next convenient opportunity will be a ways down the road (my next follow-up with him is in three months). The bulk of my treatment is being done by the pediatric sarcoma team, whose excellent doctors and nurses are also worthy of recognition (and I'd do it right now if it wouldn't make this post as long as one of my research papers!), but Dr. Healey was the first doctor I saw here, when I had come in all worried about my recent cancer diagnosis and where I could be headed. This most recent time, and each of the previous times I'd seen him, he very patiently answered every question my family members and I asked of him, allowed us as much time as we needed to ask our questions, and always left us feeling reassured about where things were headed, even though it meant losing part of my left leg. Speaking of which -- I'm no surgery expert, but even to my untrained eye, the amputation itself couldn't have been anything but fine surgical work. The first time his team changed my dressing when I was recovering in the hospital, I was expecting to see something messy, but I was instead shocked at how clean it looked. Sure, there were stitches, but the skin looked clean, and there was hardly any blood. The healing was very rapid, and I needed very little of the pain medicine I was prescribed after I left the hospital. This undoubtedly enabled me to jumpstart my rehabilitation, and also enabled me to start chemo early (the standard schedule would have had me start a week later than I did, but I was cleared to start early upon my discharge from the hospital). The sooner I'm done and healthy, the better, so I owe a lot to Dr. Healey for getting the process off to a quick and excellent start. I'll conclude with this video of a Sloan-Kettering commercial that features him:
Subscribe to:
Posts (Atom)