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:


5 comments:

  1. Amazing doctor :) Out of all the people we could have spoken to that first day at Sloan-Kettering, he was the best.

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  2. Hormozd, I was just catching up on your posts this morning. I'm glad you have been in such good hands. Looking forward to that news of full-time unassisted walking :) I'll keep checking back for updates! Know that you are in my thoughts.

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  3. What an AMAZING physician, the epitome of a healthcare provider.

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  4. How promising Hormozd jan, you are going to be his next cancer free. He is amazing and you are the most amazing. I love you and
    so much praise you.

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  5. YAY for great doctors! And I think when you're doing something like this, knowing you're in good hands has a huge positive impact on your state of mind, which in turn has a positive impact on your overall health. (I know that was true for me, anyway, a thousand years ago when I had cancer. No worries about the quality of care = all your energy can focus on coming through.)

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