Until things changed.
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The summer I was 10 was when I did the horse riding camp I mentioned earlier, and it was a two-part thing: in the morning we did horsey stuff, then in the afternoon we all biked over to a swimming pool for watery stuff. There was one day that in biking over with the group, I approached a corner a little too fast, didn't lean enough for the speed I was going and couldn't turn fast enough for the speed I was going, and hit the curb. I got banged up, especially near my left hip, but not too badly. My bike was in worse shape, but still rideable once the brake lever got back in the right place, and hey, these things happen when you're a kid.
A few weeks later our family goes on vacation to visit the grandparents. Both sets of my parents' parents live in the midwest, and we visited them pretty much every summer; this is what gave me my current nostalgia for fireflies, which don't live out here. This vacation also included a side trip to visit a penpal of mine, someone I'd exchanged letters with but never met -- basically the pre-internet version of online friends -- that had the same name as I did, the same interests, and was the same age. We apparently did a lot of running up and down stairs, and everything was normal.
Cue the next day or so, and I was at my mom's parents' house, curled up with a book on their couch, which I loved because the short pillows along the back could be moved to the front of the couch to provide a semi-pillowfort barrier against the rest of the world. I go to stand up, and out of nowhere I can't straighten my left leg. I can lift it up towards my chest, but my hip just won't straighten out, leaving me with a rather awkward contracture.
And of course we were not even at home in range of our usual medical system. Of course we were in the hospital.
I ended up at the Children's Hospital in Chicago, while they tried to figure out what was wrong. I did a lot of lying on my back with my leg in traction trying to straighten it back out. I had a lot of MRI's -- (Nuclear) Magnetic Resonance Imaging, where they stick you in a very noisy tube and tell you not to move for the next half hour or you'll spoil the scan and they'll have to do it all over again -- and cat scans, which I preferred by far, or at least held less hatred for. And I did a lot of waiting.
I don't remember being scared. Maybe I was and just don't remember it. Maybe I just trusted that what my parents couldn't fix, doctors could. But I don't remember fear. I remember frustration, at the interrupted vacation and at the tests and at not being able to move and at having to sleep on my back, which was my least favorite position to sleep in.
What they found was a lump, about the size of a baseball, in my left iliopsoas muscle. They said it was probably some sort of cancer. Possibly rhabdomyosarcoma, which would have been a very aggressive and malignant tumor. At some point, I was sent home so that they could do more investigation locally, and I had a surgical biopsy so they could find out more information.
I don't remember much about the surgery or its aftereffects. I remember that I grew to hate the smell of hospital, a peculiar scent that I couldn't ever describe properly and no one around me could smell. I remember that the anaesthesia left me horribly groggy and cranky for days. I remember that hospitals are horrible places to recover in, because there's always noise or people coming in to check your temperature or blood pressure or give you medications, even in the middle of the night.
And of course nothing had changed with my leg. Except for it now had a gash in it, one that refused to heal. I was starting seventh grade, and the first PE unit was swimming, and I couldn't participate because of the wound that hadn't healed. I was probably one of the few kids that pouted about missing PE, but I loved to swim.
Not only did the wound not want to heal -- it would heal partway and then open back up -- I started developing a surface allergy to the adhesive used for bandaids. So while it started out with just butterfly bandages to help hold things closed while it healed, and then the skin beneath the bandages opened up and required larger bandages, and so on. I could tolerate at least some sorts of surgical tape, but the angle and placement had to be changed with every reapplication, so that it would hit on unirritated skin.
In some ways, this saved my life in a non literal sense.
The biopsy determined that it was not, in fact, rhabdomyosarcoma. Their best guess was a desmoid tumor: relatively benign, at least in comparison to others, but still needing to be dealt with. And the doctors on my team were of two minds about how to proceed. One simply wanted to detach the iliopsoas. The other was in favor of removing it entirely.
Let me explain a little about the iliopsoas muscle. It is one of the major hip muscle, one involved in flexion (that is, the action of bringing your knee up to your chest). It attaches to the spinal column at the top, runs along the inside of the pelvic bone, and attaches to the top of the femur. With the lump that they thought was a tumor, the muscle couldn't stretch out completely, but it could still contract, which is why I could lift the leg but not straighten it.
The first proposed surgery would detach it at the femur. The muscle itself would remain inside me, with the tumor in turn remaining inside it, but it would only be attached to the spine, and have no function in my standing or walking. The remaining hip muscles would learn to compensate for the loss, and while I would have to re-learn how to walk, at least on that side, it would happen.
The second proposed surgery would detach it at both ends, and remove it completely. Along with the tumor, of course. It was a more drastic surgery, but in some sense neater, with no loose ends.
Except that what I didn't realize at the time -- I don't think I was ever told, certainly not until much much later, but I don't know whether this was a deliberate choice or just an oversight -- was that because the iliopsoas attached at the spine, this option had a significant probability of leaving me paralyzed from the waist down.
(I do remember, years later, a conversation with my mother where she mentioned this, and it stunned me. And, in retrospect, would have been a completely tragic outcome.)
But they couldn't perform either surgery until the first one had healed. So we waited, and I endured more MRI scans. Words cannot explain the depth of my loathing for MRIs. It wasn't that I was claustrophobic. It was the fact that I literally could not hold still for the required period. Not for lack of trying, mind you: I tried as hard as I knew how to maintain the position without moving. And I could do it for perhaps fifteen minutes, when -- zoing! -- my leg would twitch, involuntarily. And they would have to start over, and I would make it for maybe ten, maybe twenty, and -- zoing! -- again. And I would be in tears, miserable out of my mind, and my parents tried to bribe me (if you hold still through this you can have a brownie when we get home!) with the obvious lack of success because it wasn't a matter of motivation, I literally could not control or prevent the twitching, and no one believed me that I was trying.
(I may still have some feelings about this issue.)
Anyway, back to the story: By the time my incision from the first surgery had healed up, the tumor had, inexplicably, shrunk. It wasn't gone, by any means, but it was smaller. And that swayed the surgery decision towards the less invasive one, and so I had the hip release.
The hospital smell hadn't changed. My distaste of anaesthesia hadn't changed. Hospitals still sucked as a place to recover in. But -- for the first time since that moment in Iowa when I stood up from reading and couldn't quite manage it -- I was able to straighten my left leg.
The doctors debated whether or not to put me in a cast to let the leg heal straight, since by this point it had been long enough that the other muscles were used to the contracted position. They ended up not, as long as I did stretching exercises, such as lying on my stomach to read or watch TV (which forces the hips and spine to be more than straight, since the upper body is propped up and the legs can't pass into the floor). I disliked the exercises, but preferred them to a cast.
At some point in this whole process -- I can't remember whether it was before the second surgery or after, but I would have to guess before -- they wanted to use chemotherapy to treat the tumor. Desmoid tumors, despite being fairly benign in most cases, do respond to chemotherapy and can in some cases become locally aggressive. (This is what google tells me. I just knew that I did what the doctors told me to do.) Chemo would reduce the size of the existing tumor, and would persuade it not to get too friendly with the surrounding tissue.
I don't remember the drugs used; methotrexate might have been one of them, another might have started with v. (My parents might remember, but I am basing this writing on what I know, not on what they do. They would also have a significantly different set of memories of this whole process.) I don't really remember the chemo itself. I just know that I had it, and in subsequent years got a small amount of morbid pleasure at mentioning that it happened. I know that I didn't lose my hair, but I lost my eyebrows. And I know that I was tired all the time -- I remained in school, though.
Which, I might add, was epic amounts of fun. Junior high is always an awesome experience for everyone. Add in wacky medical hijinks, including cancer scares and surgeries and chemotherapy, and it's even better. Throw in a dash of fellow students being
And that was only the start.
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