First Week of Cycle 8 and Rehab Progress

Currently, I'm recovering from the first week of cycle 8. The fatigue wasn't as bad as the corresponding week of cycle 7. I didn't fall asleep while getting chemo, and made it through both of my physical therapy sessions. The fatigue really didn't start hitting until after Wednesday's physical therapy session, actually. That's when I started to need afternoon naps. On Thursday, I slept right before lunch and through a lot of the afternoon. Friday, my energy was better, enough to make it through chemo, physical therapy, and a subsequent appointment with the rehab doctor, but after dinner, a huge crash hit and I was fast asleep for most of the time until about 6am today.

I've made some big progress with my walking recently. It starting during cycle 7, when I started feeling less pressure at the bottom of my stump leg while walking. There were still, though, instances of pressure around a bone on the outside of the stump a little below the knee, enough to cause skin bruising. At my most recent follow-up with my prosthetist, I showed him the bruise, and in response, he adjusted the socket of the prosthesis by cutting out a section of its outer layer that lined up with the bruised area on the skin. The outer layer of the socket is a rigid carbon fiber; the inner layer is a less rigid plastic, which allows for some "give." By exposing this part of the inner layer, the pressure was lessened, and my walking quickly became substantially easier. Here's a picture of the prosthesis post-adjustment, with the hole showing:

I've since been graduated by my physical therapist to a cane. She gave it to me on Wednesday. For the moment, I'm supposed to use it indoors while continuing to use one crutch outdoors. We'll revisit next week, and I'll hopefully soon move to full-time cane use. I can't move too quickly, though, even though I've been capable of taking outright unassisted steps since mid-March -- my therapist wants to ensure I walk with a smooth, balanced gait, and if I move too quickly, I could develop bad habits (namely, having my right side compensate for my left side) that will be hard to shake. And given my long term goal of running again, poor walking form is the last thing I would need!

Places You Want to Revisit

New York is New York. There is a lot to do here, lots to see, places I have seen that I still have to post about, places I still have to see... But I'm here for cancer treatment, not pleasure, so there's a limit to the fun I can have here.

I periodically think about the places I want to get back to when I'm done here. Home is one of them. I also want to get back to taking trips to conferences and research meetings like I was before. As I found from my trip to Boston, there's nothing like being in the thick of things with the research community.

One place in particular has been on my mind a lot, though. I have an attachment to the Bay Area, having lived there for four years and also having spent the last three summers there for internships. It has the features of an urban area, but there are also parks and other wide open areas to escape to. I have fond memories of running in the East Bay hills, where I would get amazing views of the city and the bay and the Golden Gate bridge.

With this in mind, I'm sharing one of my favorite songs with you this morning, Journey's famous Bay Area anthem, "Lights":

Most Recent Scans

I had another round of scans last Wednesday. I got the results on Friday, and it was good news. The PET scan was clear of tumors. Interestingly enough, the scan picked up increased muscle activity along the right side of my body. The radiologist suspected the reason was altered biomechanics/gait from being an amputee. Well, hopefully any asymmetry will be a thing of a past with more rehab progress. I've been walking much better as of late, and I might move to a cane from one crutch this week.

Now for the lungs. In my last post about scan results, I talked about spots in my lungs, how one of them (the largest one) looked to have shrunk, and it's likely meaning (there was a tumor in my lungs because it responded to chemo). This time, I spoke with Dr. Wexler, another member of the pediatric sarcoma team, about the results -- Dr. Meyers, who is overseeing my treatment, was away -- and got a different perspective. With a lot of numbers.

First off, no new spots appeared, and the small spots remained unchanged. This is much is definitely good. Now for the large spot. The size of the large spot was said to be 4 mm in the first scan, and 2 mm in the next scan. On this scan, there was no measurement given, but the spot was marked as unchanged, though on the image itself it appeared more diffuse that before. Now, is this a tumor, or is it something else? Dr. Wexler said that what are definitively marked as tumors are spots at least 1 cm in size that have a dense, round appearance. One other thing to consider is measurement error. The CT scanner takes 5 mm slices. Thus, the size of spots that are any smaller are going to be harder to measure precisely.

So what does this mean? Really, there is no way to be truly sure if there is any cancer in my lungs or not. The only thing to do is continue treatment. The regimen I'm on assumes metastatic disease. I mentioned radiation to the lungs as a treatment option back in March. I have two more sets of scans, one in September and one in December. The decision on radiation will be made after the December scans. I'm hoping there's nothing in the lungs, but if there's anything, it's remained contained through almost 5 months of treatment, and should be treatable with radiation as Ewing's sarcoma is a radiosensitive cancer.

Now, since I've been in the habit of posting videos featuring my doctors, here's a Sloan-Kettering commercial featuring Dr. Wexler talking about one of his past patients. What comes through here is his storytelling, which has also been a feature of the times I've seen him. He has a knack for explaining things based on his past experiences, usually studies he's been involved with when I've seen him, which I have found very informative.

Rejoining the Research Community

Today, I started cycle 8, another one combining irinotecan and temozolomide. I was expecting to feel tired this afternoon like last cycle. No, I don't feel 100%, but strangely, I have yet to feel the need to take a nap. More energy is a good thing; let's see if it lasts.

Today, though, I'm not going to write about chemo, but about an experience I had right before cycle 7. In my very first post, I mentioned that one of the subjects of my blog would be balancing what remains of my Ph.D. program with cancer treatments. This has proven to be very difficult. Fatigue from chemo is a significant issue. Adding rehab exercises on top of that takes a further bite out of my energy. Basically, the only guaranteed time there is where I can be productive are those third weeks when I'm feeling better, but oftentimes my energy level isn't back to normal until it's almost the weekend before I have to get chemo again.

Nonetheless, I've made progress. I had a couple of conference talks I was originally scheduled to give, one in Boston on February 25th, and another at the Copper Mountain ski resort in Colorado on March 19th. Both were during good weeks. However, I had yet to receive a prosthesis at the time of the Boston talk, and the Colorado talk was in a location far from a major medical facility in case something went wrong. Thankfully, one of my collaborators was at both conferences and able to give the talks in my place. However, I still was able to write the slides for both of them, which I did during the good weeks preceding each conference. I've also been able to add to my thesis bit by bit when I get the time and energy.

The biggest thing I was able to do occurred the Friday before Memorial Day. I had some work I'd gotten done last year that I still needed to publish. Between my diagnosis and my amputation, I was able to put together a paper, which my collaborators finished off and submitted as I was recovering in the hospital. The paper was submitted to a workshop on Large-Scale Parallel Processing that was held in Cambridge, MA on May 24th. The acceptance came in mid-February, and we had until the end of the month to send in the final paper. Thankfully, I had a good week where I could work on the paper, and was able to do the heavy lifting to get it done.

The trip itself was very energizing. My energy level was already high, as it was at the end of the third week of cycle 6. I used the Amtrak Northeast Regional to get there and back; it was about a 4 hour ride on the train. The trickiest thing was actually when I had to walk to the bathroom; it's not like the train was very shaky (it certainly didn't feel that way while I was seated), but while walking, all those inevitable little movements made me have to move very deliberately on my prosthetic leg. Ashley accompanied me during the trip, and having company was indispensable for this, my first trip out of New York since coming here for treatment.

The day of the workshop itself was a great, great day. I caught up with two of my collaborators, other researchers I knew, and was able to give a talk myself for a change. I was a bit rusty on a couple of occasions, but overall it went smoothly. The biggest thing of all, though, was a huge surge in my mental energy. I was suddenly getting a multitude of ideas for my research, and writing them down in my notebook. I always keep one for when I get ideas, and chemo has made me write in it far less often than I used to, but on the day of the workshop, I was on a tear. That made me feel great, and I came into cycle 7 with all sorts of plans and ideas on what I could get done. And then the chemo hit.

Here's a picture of my name tag from the workshop. A note to my Boston-based friends and followers: this was a brief work trip, so I'm sorry I couldn't see all of you. I don't know if I'll be up there again, but hopefully if I am I'll have more time during those trips.

Chemo Fatigue and Humidity: a Bad Combination

Before this whole cancer odyssey started, I was someone who could not sit still. I would always want to get up and move around. Those impulses are still there now, but being an amputee with frequent bouts of chemo-induced fatigue often gets in their way.

This afternoon, though, I had to get out and move. Since before cycle 7 started, in fact, I was determined to have some kind of outing on the one free day between chemo administrations. The thought of two weeks of nothing but treatment and rest did not make me feel good in the least. So even though I was still quite fatigued, and even though it was very humid outside, Ashley and I went out to Central Park. And I tell you -- even though clouds covered the sun, and there was a lot of shade, I got drained. Fast. I sweated a lot. Sweat on the amputated leg interfered with the fit of my prosthesis. I drained the water bottles I brought with me, and then proceeded to drink a bunch of water and Gatorade upon getting back. That helped, but I was still feeling quite tired from being outside. My appetite wasn't quite there either, limiting what I could have at dinner.

As someone who once went out for runs in humid central Illinois heat on a regular basis, it was a big disappointment to be so readily felled by humid summer weather that I once would have handled easily. But still, thinking back, I would have felt worse had I stayed inside. Maybe my body would have felt better, but my mind would have gone mad. And this is one of the things that keeps me going. As bad as things feel at times, I want to feel like I did when I was healthy and do those same things again, and it's not going to happen if I just sit back and do nothing.

More Chemo Drain

The rest of this first week of cycle 7 proceeded smoothly, though once again with more bouts of fatigue. I had to miss my Friday physical therapy session because I was just about falling asleep in the clinic right after lunch. I slept most of the afternoon, and went to bed early, which gave me more energy for yesterday's chemo administration. I had a better afternoon, but I once again got tired after lunch and needed a nap. I feel weakened now but otherwise ok; hopefully I have a good day today before my next week of chemo administration. At least this one will be only irinotecan, so if things follow my experiences from cycles 4 and 5, I shouldn't be so drained.

With 10 more cycles to go, though, I do wonder about cumulative effects, as the irinotecan/temozolomide combo hadn't hit me this hard the first two times around. It was similar with the cyclophosphamide/doxorubicin/vincristine cycles I had early on. The third one was much harder on me than the first two. But, I need to soldier on. Both Dr. Healey and Dr. Meyers told me before starting treatment that in the old days, before chemo, you would cut out a cancer like Ewing's and hope for the best, but odds were that it would come back and you would get the worst. So, here I am. And even though it's tough, and far from home, I'm happy I'm getting treatment where I am, and from pediatric specialists at that. Here's an interesting clip I found from the CBS Evening News. In it, Dr. Meyers talks about gains made in treating cancer in children. The point he emphasizes is that children have done less damage to their bodies than adults and can thus endure more intense treatments:


Well, I'm not a child, but if I'm getting the same treatments they do, I'd say that should help matters. And fellow adults, here's a reminder to keep yourselves healthy. Chemo is harsh, and you don't want to set yourselves back if you need it.