Sunday, August 18, 2013

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.

1 comment:

  1. I think this is such an important message! In my own case, my cancer was caught fairly early, but only because I was going to college in my hometown, and was on my parents great health insurance, so following up on an unexplained thing was EASY. If it had been any less easy I would not have sought out medical investigation until much later. I know a lot of people who are afraid of finding something that might require something unpleasant, or who just don't like doctors or discomfort or whatever. But if there is something to know, it's very often better to know it sooner. So I just want to echo what you've said. Is something weird? Follow up. And if your doctor is not that responsive but you really have a feeling something is not right, advocate on your own behalf.

    ReplyDelete