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.

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.

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: