Football Season!

This is it, my favorite sports time of the year. I always get pumped for football season. I can't help it. Even though my team, Illinois, more often than not has a struggle of a season. I'm looking to football weekends to help carry me through to the end of chemo. Only 6 more cycles to go now!

One of my favorite places to be: at an Illinois football game in 2010.

This last cycle (#11) has been easier than the one before it. The first week, with both the irinotecan and temozolomide, was draining like before, but something changed in week #2. I had a surprising amount of energy during most of it, including a little shopping trip on Tuesday afternoon and a programming session on Wednesday afternoon. Eventually, of course, the chemo caught up to me, and I needed a major nap after I got disconnected on Friday.

I would say the turning point was a spontaneous trip I took a week ago with my mom to Williamsburg, a neighborhood in Brooklyn that has seen a recent influx of young people. It was definitely an interesting place to walk around. A number of the buildings looked worn down, but there were lots of young hipsters walking around, and street vendors peddling wares. I was reminded a bit of my Bay Area days, making the trip feel like a nice escape from Manhattan. And then I found this painted image of a ? block from Super Mario Brothers!

After the trip, I had a lot more energy. So I guess the moral of the story is to get out and do things even if you don't feel well. Sometimes it's more mental fatigue than physical.

How did this all start?

When I started this blog, I dated the beginning of my whole cancer ordeal to early October 2012, when I had a bout of intense pain in my left foot and ankle, much more intense than pains I'd felt there previously. I talked about that part of my body having had an injury history, but not in a lot of detail. I now feel like going into some more detail with the history. It won't do me any good now because I can't change the past, but maybe it will encourage someone reading this to jump on things early.

First Troubles
The real beginning of pains in my left foot was actually in April 2000. I was an 18 year old college freshman at the time, and I was pretty physically active that year. Not as much as I'd been in high school, where I was on the cross country and track teams, but I did run fairly regularly and lift weights, and for part of the spring semester, I also played pickup basketball once a week. One evening, I started feeling a sharp pain in the outside of my left foot, that was there even if I didn't put weight on the foot, and throbbed a little bit. It made me limp when I walked. A couple of days afterwards, I saw a doctor, and had an X-ray. There was no break or anything. The only comment from the radiologist was that there were "cystic changes" in the 5th metatarsal. We agreed to wait and see what happened. The pain went away 2 days later, and that was that, whatever it was was transitory, or so we thought. A month later, I broke the foot when the previously painful area was stepped on while playing basketball. It wasn't a hard step. Normally, it wouldn't have caused the bone to break or anything like that. But that was what happened to me.

I went through a fairly standard recovery process. I spent 4 weeks in a walking boot, the first 2 of which I was supposed to keep the boot on at all times, except for when I showered, when I was to remove the boot but shower sitting down as to put no weight on the foot. The second 2 weeks, I could remove the boot when I slept. The next 4 weeks, I wore a hard-soled shoe in place of the boot. During this period, I was to also perform strengthening exercises on the ankle in preparation for my return to normalcy. An X-ray after this was all done revealed that the bone had healed, and I was back to my normal self. I returned slowly to running, and was able to run 3 races the ensuing fall.

Stress Fracture... And Pains
In spring 2002, I developed more problems in that foot. During calendar 2001, my activity level had dropped as I started having arch pains in my right foot. A pair of orthotics countered that problem, and I went back to being more active. I ran, lifted weights, and also played pickup basketball games. Come early June, some dull, nagging pain in that area became more and more pronounced, and I had it checked out. An X-ray revealed a spot in that area that the doctor said was a cyst, which had weakened the bone to where the outside of the 5th metatarsal right near the previously injured area was very thin. That thinned part was showing signs of a stress fracture. I was given 6-8 weeks in a hard-soled shoe, after which the stress fracture appeared to be better, but the cyst was still there. I was cleared to try running, but I soon felt more pain. At that point, the doctor tried an ultrasound bone growth stimulator to see if that wouldn't get normal bone to regrow in place of the cyst. After some time with that, it didn't look much better on an X-ray, but I was ok to start running again late that fall. I didn't do much in that regards, but by about February I felt pain once again. This time, I spoke with an orthopedic surgeon, who told me what would be involved if I wanted surgery. A "door" would be opened in the wall of the bone next to the cyst, and whatever was there would be excised, after which the opening would be closed up. The resulting cavity would be filled with a bone graft, which was not guaranteed to take hold. Given that there was a chance that the procedure would not work, and that I was not too hampered as far as mobility, he advised against it. I had another bout of pain in April, a bit more intense this time, and another conversation with the surgeon. Another X-ray was taken; things looked about the same. Once again, he said that while he could take it out, he recommended against it, and added that I would just have to be careful with that foot.

California Days
I was eventually able to run comfortably again late that summer by making a change in footwear, going with shoes with some more cushion and space in the troubled part of my left foot. I would have a great academic 2003-04 as far as running went. I gave up playing basketball (with some isolated exceptions down the road in 2008, 2009, and 2011), figuring that would just give too much of a beating to the poor foot, but the running was great. I did get pains a couple of times, but after a little rest, I was back in the saddle. And I was in a great place for running. I had moved to Berkeley, California that August, and though my legs had to adjust to the hills, once they did I was greatly rewarded. Long runs up roads and trails there would give me spectacular views of San Francisco, the Bay, and the Golden Gate Bridge. I was eventually slowed in July and again in October 2004 by knee problems. This gradually led to my falling off the saddle. I would still have occasional pains in my foot, but really not more than 2-3 times per year, lasting only 1-2 days, and they seemed to happen during periods when I was more active than not. There was one instance or two, I don't remember when exactly, where I'd have pain just above the ankle, but otherwise, it was in the previously injured area of my left foot. Oh well, it was that weak bone I had to live with.

Back to Illinois, and More Pains
At the end of May 2007, I moved back to Illinois. I went through off-and-on periods of physical activity, with about the same frequency of bone pains. There was one instance in November 2007 of pain above the ankle, which I attributed to doing something to it during a run the day before. I hit another athletic peak in summer 2008, when I trained for and then ran a 5K road race. I went through another lull, then picked things up again in spring 2009. I got a new pair of orthotics, as my previous ones had gotten old. After a good sequence of runs, I had some bouts with pain, again in the previously injured area, and that caused me to back off. These pains were like the ones I'd felt in California, lasting 1-2 days, but now I was having them more frequently than I was before; I think it was three times that spring. Backing off on the running, however, seemed to take care of the problem. That fall, I had more bouts with pain after picking it up again with the running. Now that I was having problems with a higher frequency, I went in for an X-ray. This was in late September. This time, there was no evidence of the cyst from 2002-03, though the radiologist again noted "cystic change" at the site of the previous fracture. I dialed down the running for a time, switched shoes again next year, and things seemed to get back to how they were before this spike in pains.

Things started to change a bit in 2011. I had a couple of instances -- one in March, and one in December -- of pain above the ankle. The last one was a bit more pronounced in terms of pain level. Still none of the instances from 2002 through then had the intensity of the pains that started last October, with hardly any swelling and throbbing, and while they hurt, I was able to go about my daily life ok, with at worst a bit of a limp when I walked. I started thinking that the orthotics must have been putting too much stress on the outside of my left foot, and decided to see if I could go without them. I got a new pair of shoes too, and sure enough, I could run in them without the orthotics. This was at the beginning of 2012. Things then got better for me as the year progressed, and while I had a couple of instances of foot pain, it didn't seem to be that big of a problem. That summer, after a program of squats, I suddenly found myself running longer runs much more easily than I had in years. I was thinking I would try for a race that fall. And then October came, and the intense pain hit. Interestingly enough, an X-ray taken then revealed nothing. Only an MRI revealed the brewing trouble.

Conclusion
The end of that long story was that I had 6 bones, the lower part of my shin plus 5 other bones in my foot, compromised by cancer, requiring amputation of my left leg below the knee. The big question is, when did it all start? Could it have really started in 2000? Ewing's sarcoma is rare in adults 30 and over, but much more common in 18 year-olds. But then again, if it was cancer back then, I don't think I would be here now. Same thing in 2002. A tumor known to be aggressive doesn't spare your life for an entire decade without treatment. 2009 might be a more interesting thought, with an increase in the amount of times I felt pain, though being 3 years prior to the when the very bad pains started still is a long time for it to brew. Or was 2011 the time to catch things? Dr. Wexler did think based on my initial PET scan that the cancer had brewed for some number of years. I think he said 2-3 years. But then that brings me to another puzzle. With it invading all these bones in one specific area, why wasn't it all over the rest of my body? I don't think I'll ever know the answer to that one. I guess I should praise my immune system for keeping it bottled up?

Well, what's done is done, and I should really express my happiness that I didn't catch it even later, but this question of whether I could have spotted the cancer earlier will always be there. Looking back, I think one thing at play was that I was reluctant to push things further, which could have ended up with me going under the knife. It's not like I was unable to be physically active, just limited, and what if surgery ended up compromising my ability to be active? Still, it probably wouldn't have been a bad thing to push for a more detailed scan when I got the pain flare-ups. I wouldn't have gotten an MRI last October without asking for one, and that's what revealed the brewing trouble, which did not show up on an X-ray taken then. So readers, don't be afraid to investigate further if you feel you need to. Bone cancers are rare, yes, but they do happen.

There Go My Eyebrows

Not surprisingly, I have been without hair during much of my chemo regimen. It's followed a pattern of the "bag" cycles knocking it out (the actual hair loss occurs during the third week of the cycle and continues a bit into the next cycle), followed by regrowth during each second irinotecan/temozolomide cycle. This time, I have reached a new stage of hair loss -- much of my eyebrows are gone. This is not the first time I have had hair loss there -- my eyebrows thinned during cycle 4 -- but the amount of loss is such that the majority of the hair is gone. I immortalized the moment with a picture:

I started chemo with quite a bit of hair, but as it never regrew fully before being knocked out again, I have progressively become more hairless with each bag cycle. I expect this trend to hold after cycles 12 and 15 (my last two bag cycles). I wonder what I'll look like then... As for the future, I've decided that this will serve as my official transition for embracing the bald look (I was already losing hair to baldness before my diagnosis), so from here on out, my head will be hairless, shaved, or buzz-cutted, whatever I happen to feel like at the time.

The View From Dermatology

Yesterday morning, I went to see a dermatologist about the spot on my stump that Dr. Healey thought was a wart. The dermatologists at Sloan-Kettering are at an outpatient facility on 53rd Street between 3rd and Lexington Avenues, rather than the main facility that occupies the whole York/1st/67th/68th block. I got my pre-surgery MRIs at this same facility. Unlike then, I can actually walk now, so the original plan was to walk all the a way there, but a rainstorm forced a change of plans -- walk just to the main Sloan-Kettering facility, where there is a free shuttle that goes to the 53rd Street facility.

Darkened spot on my stump. Is it a pressure spot, like I first thought, or a wart?

The dermatologist I saw, Dr. Querfeld, began by examining the spot. Her take was that it is not a wart. Rather, it is a pressure spot that has crusted over as a result of occluded sweat glands. I received prescriptions for a couple of topical creams to soften the skin up. But that was not the end of things. From what happened next, I gathered that to a dermatologist at a cancer center, everyone who walks in the door is a potential melanoma patient. I received a full-body mole examination, with an assistant taking a couple of pictures to serve as references to compare against in the future, and a reminder to be ultra-vigilant with applying sunscreen. One of the medicines I have to take while on chemo -- bactrim, an antibiotic I have to take twice a day every weekend to prevent a form of pneumonia I could get while my immune system is weakened by chemo drugs -- makes me extra-sensitive to sunlight and prone to skin damage from ultraviolet rays. Then there's the issue of me missing most of my hair, most notably on my head which normally is protected by it. I've been wearing hats when I go outside and applying sunscreen, but Dr. Querfeld noted some signs of sun damage. So time to step up my game. However, I didn't have anything on me that looks like melanoma or potential melanoma, so that much is good. I'll be coming in again either a little after the end of chemo or around the time of my first post-chemo scans for a follow-up on the moles, and I'm guessing there will be more follow-ups. Not that I mind -- with melanoma something that needs to be caught early to ensure successful treatment, this will ensure I don't miss anything.

Energy-wise, I've felt close to normal today. After a good session at physical therapy, where I did a lot of walking without my cane, I feel ready to take on the world. Time to figure out something fun to do before I start my next round of chemo. Ideally, I'd go out and see places every day, but I also have some thesis work I need to get done. So little time when I feel good, so much to do... Story of my life during chemo!

The Middle Mile

In high school, my cross-country races were three miles long. Of those three miles, the middle mile was usually the toughest one. Though the goal in each race was "negative splits," where the time for each mile is faster than the previous one, what typically happened was a different story. My first mile would be the fastest, starting out the race with full energy and feeling good to go. Then I would get tired, and slow down noticeably during the second mile. The question, "Will this race ever end?" would creep into my head as my energy dropped. Then, the third mile would hit, where I would find some reserves and pick things up as I saw the end in sight, but not reach the same speed that I had for my first mile.

September 1998. Running a cross-country race as a senior in high school. I believe this photo was taken during the middle mile of said race.

The middle mile experience is how I can best explain how I've felt this cycle versus the prior ones. Last week, even with my not getting temozolomide, I often felt drained. It wasn't such an acute feeling like I had the week before, but more of a nagging feeling that would hit as soon as I arrived in clinic for chemo and persist throughout the day. My digestive tract also felt "off" all day long. It wasn't nausea; I could still eat and all and didn't want to vomit. However, it always felt agitated in some way, even when there was no irinotecan-associated diarrhea to control. By evening, shortly after dinner, I felt both tired and a bit queasy. Nighttime sleep restored me to feeling somewhat normal, only for everything to repeat itself the next day.

Today, this feeling finally began to fade. Hopefully, I have a good next few days that don't go by too quickly. I have some things I need to do when I have the energy. And I furthermore hope that next cycle (#11) is easier on me, like cycle 8 being easier than cycle 7. Then after that it's my last ifosfamide/etoposide cycle (#12), and then after that the last third of my treatment. Or the last mile of my race, where I look to catch that second wind!

Tiredzolomide

That's what I'm renaming temozolomide to after the amount of fatigue it gave me this past week. I'm reminded of cycle 7 in terms of being hit by fatigue from it, though the onset was a bit later. Unlike that cycle, when I was hit right away, it kicked in on Tuesday. By Wednesday, I was napping in the clinic while getting chemo. I was able to make it to physical therapy that day, but on Friday, I opted to go straight back instead and get more rest. The tiredness continued through the weekend, where I spent a lot of time in bed. I think I'm finally over it now, having napped most of the afternoon. Just in time for some more chemo this week, though irinotecan alone does not make me so tired.

The week before last was busy with appointments, as I'd mentioned earlier. Physical therapy twice, a follow-up with Dr. Healey, a blood count check, and a follow-up with my prosthetist. Highlights: at physical therapy, I learned how to do situps and pushups even though I have only one leg. Situps actually aren't that hard using the same technique I did when I had both my legs, but there's a bit less stability with a stump not on the ground, so putting my legs on a big ball are an option if I want a completely stable base. Pushups require putting a ball (a kickball-sized rubber ball suffices) under my stump to make them work like I did before, or I can do them on my knees (less intense). At my visit with Dr. Healey, he examined my stump and saw me walk. Overall, he was pleased with my recovery. Interestingly enough, he thinks that a dry, darkened spot on my stump that is lined up with a point on the outside a little below my knee at which I was getting some pressure from my prosthesis is actually a wart, and I'm going to see a dermatologist in a little over a week to investigate. At the prosthetist's, I got more relief from the pressure spot with a small adjustment to the socket. I haven't gotten any pressure there since, though now I'm getting a bit of pressure at the bottom of my stump. Still, it's been an improvement overall, and I can walk with closer to normal speed now, so as long as I make progress I'm happy.

Now, onto a week of irinotecan alone with hopefully a lot less tiredness than what I went through last week. In a way, though, what I went through was not enough tiredness -- I talked about napping, but a lot of the time, I was lying down hoping I would but instead remaining awake while feeling the fatigue. It would have been better if I'd just slept though it all, which was actually the case this afternoon. I certainly wouldn't mind actually sleeping through as much of the chemo period as possible so I can experience less of all the bad feelings, but then again, it wouldn't be chemo without all of those, now would it?