I was a swimmer as a child and I started having problems with my knee. When I was about 11 years old. Swimming breaststroke, it became very painful. My mother took me to see an orthopedic doctor and without discussing it with me, he may have discussed it with my mother, but without discussing it with me, he turned away, and then when he turned back, he had this huge syringe with a three-inch needle, and he just stuck it in my knee. My mother ran out of the room because she couldn’t watch. And I got a steroid injection and that was my first one at the age of 11. I didn’t know anything about it. I didn’t know what was supposed to happen because of it.
Anyway, I continued to swim and the problem persisted. By the time I was 19, I’d already had maybe four or five steroid injections. I was told I had a condition called chondromalacia patella, which meant that the patella wasn’t tracking correctly in the joint, so every time I bent my leg and straightened it, the patella was grinding on the joint beneath it. My parents took me to a surgeon, and I know it sounds weird that I was 19, but I still lived at home, and they took me to a surgeon and he told him that he could do this very successful surgery where he could basically move the muscles over my femur, bring them down over the patella to try to correct the tracking.
So I had the surgery and woke up with my leg and plaster of paris and was told that I was going to be in this cast for a month. A month later when they took the cast off, I went to a physical therapist, and she said to me, “Bend your leg.” I couldn’t engage the muscles at all. They had all completely atrophied. Without discussing it with me, without warning me about what was going to happen, she picked up my leg and she promptly bent it. She kind of grabbed two ends of it and sort of jarringly tried to bend it. Of course, I started crying because it was so painful. It turned out that I had a huge band of scar tissue across where the incision had been made. I literally couldn’t bend my leg. After six months of going to physical therapy and being tortured, they put me under anesthesia and cracked the scar tissue.
After that, I was able to bend it quite a bit and eventually get to walk properly. But it probably took about two years for me to be able to walk without a limp and to get over the whole trauma of it. It persisted in being a problem. As I got older, I was still engaged in a lot of physical activity. Over the years I needed more and more surgery and ended up having seven surgeries altogether, including a partial knee replacement and then finally a full knee replacement. The partial worked pretty well for about three years. I also had osteochondral grafts, which means that they took healthy bone cartilage from one part of my knee and transplanted it into these kinds of holes that I had opening up in the bone cartilage, which were very painful. They did this patchwork thing that lasted a few years and eventually, the partial knee replacement failed and so I had to have a full knee replacement.
What I didn’t realize, because as I said, nobody discusses these things with you or tells you what the consequences are going to be, I didn’t really have a choice about having the full knee replacement, but both of my legs kind of bow, so when I stand up, they’re not straight. Once they did the full knee replacement, they pretty much locked my leg in a completely straight position with the knee replacement, so I ended up with a leg that was locked on the right and bowing on the left, so my gait completely changed. I just started having more and more back problems. I’d had back problems since I was a teenager as well. But the fact that I was limping and kind of waddling at the same time means that my lower back, started to take on more and more distress and that led to a whole other series of surgeries. So that’s my knee story.
Yeah. I mean, I think the lack of communication and I mean, even the fact that I had radiation on my knee last year because I developed a fracture in the very base of my femur from the cancer. I had a small lesion and it cracked the bone, so I was in pain. And so they said, okay, we need to radiate it. And so again, without telling me the consequences, it’s not as if I had a choice, I should say, I keep saying they didn’t tell me what would happen, but I probably would’ve still made the decision to go ahead with the radiation because I was in a lot of pain. In the last year, since I had the radiation, there’s a band where they actually radiated the bone, and all of the soft tissue has kind of shrunk. You can now see the area where the thigh muscle attaches to the knee. You can actually physically see that because my muscle has kind of wasted and it’s become so tight along that area where they radiated that I can barely bend my leg now.
So it’s just exacerbated an already difficult situation with my knee, which I never recovered from. I never recovered fully from the total knee replacement because I’d already had sick surgeries and there was so much scar tissue and kind of atherosclerosis, I think is what they called it, in the bones, that I never got my full range of motion back in that right knee. And so now it’s even worse because of the radiation. So that’s something I never expected either. I had no idea what was going to happen. And it was just interesting to see how long it’s taken for it to actually go through these changes. I still wake up every day and think that it’s been shrinking overnight. It’s pretty strange.
I think just being able to prepare psychologically for what’s going to happen. It’s the same with my cancer treatment. You can go to the doctor and they can put you on one medicine after another, and you can go to your support group and listen to other people talking about their experiences, and you get a lot more information from other people than you do from your doctors about what’s really happen to your body because my doctors don’t discuss it with me and they don’t seem to discuss it because when I ask questions, I don’t really get proper answers. I get, “Well, just watch out for the side effect and give us a call if it happens.” And so when my blood sugar went up to 310 last Thursday, I didn’t get a call from my doctor to tell me I had high blood sugar and I needed to do something about it.
I just happened to go online and check the test results myself and I obviously panicked and called first thing in the morning to talk to somebody. And then they told me what to do and that I needed to go and get this diabetes kit and start testing myself and stop taking the medicine and that kind of thing. But if I hadn’t checked the results, I would have no idea and I might have just kept taking the medicine and ended up in real trouble with my hypoglycemia. So there’s something about just being told ahead of time what’s going to happen. And I’m sure there are people who don’t like to know what’s going to happen. But for me, I think just being able to get myself ready is important and also not to feel so alone when it’s happening because one feels like there’s nobody looking out for you.
So you see your thigh muscles shrinking from radiation, and nobody told you it was going to happen. And when you do tell the doctor, they say, “Why didn’t you do some leg lifts to strengthen your thigh?” So you don’t really get much empathy, you just get instructions on how to cope with it. So just to answer your question, I think it’s for some people and I’m one of those people, it’s just better to be able to prepare psychologically and to understand what’s happening to my body rather than be in the dark about it.
Well, I guess one that sort of reinforces what I just said is what happened with my back. I’ve had back problems since I was 14 because I played tennis and my serve was doing something to my back and nobody told me to stop doing it, so I also started having injections in my back because there was no other way to deal with all the muscle spasms and other things that were happening. The back problems also persisted. And in 2008, I was having steroid injections to help me cope with how much sciatica pain I was having, which started in the early ’90s and I’ve had ever since.
So I’ve lived with this chronic sciatica for a couple of decades already and started having these steroid injections and was trying to trust my doctor. But I didn’t realize that steroid injections actually destroyed soft tissue. One morning I got out of bed and I felt this kind of weird pins and needle sensation traveling from my lower back all the way down to my foot. I knew something had happened and my disc had herniated. And so they decided that they needed to operate. And they told me it was just a very simple procedure where they go in and they snip off the part of the disc that’s herniated and that’s that.
And so I went in for the surgery, they did the surgery, I was lying in bed and I was feeling the pain from the surgery, but I wasn’t feeling that weird sensation down my leg. At some point, I decided to roll over from my back onto my side while I was still in the hospital, and I rolled over in bed and I felt something happen. I felt the pain in my leg return, the strange pins and needles. And the surgeon came into the room and wanted to know how I was feeling. And I said, “Well, actually I can still feel that sensation going down my leg.” And he said, “Oh, that’s probably just your brain holding onto the memory and just give it a few days and it will readjust.”
But the pain kept getting worse. They sent me home, and the pain kept getting worse. I couldn’t get out of bed. I think I had staples in my back from where they had done the surgery. I lay in bed for three weeks to a month taking opioids. I kept telling my surgeon that there was something wrong and he didn’t believe me. Finally, he said, “Okay, I need to send you to get an MRI.” So he sent me to get an MRI, and I was there and the radiologist comes in and she says, “You still have staples in your back, you can’t have an MRI.” So they told me to go down to the hospital. I had to have the staples removed. Then they sent me back to the MRI place. And in the meantime, I’m basically sitting in a wheelchair because I can barely walk.
And they did the MRI, and it turned out that the contents of the disc, because where they had cut the disc during the first surgery, it hadn’t healed and basically the contents of the disc had spilled out onto my spine, and so all these little shards of this gelatinous material sitting on my spine. When I came out from the MRI, the radiologist said to me, “Oh, you poor thing, no wonder you’re in so much pain.” So they sent me home and the surgeon said he was going to operate on me again. His office called me a couple of days before the surgery and said that he actually needed to postpone it because he was going to Europe for a conference. And I completely lost it. I was so upset and so angry and demanded that he do what he was supposed to do, so he didn’t go to his conference and he operated on me and ended up having to fuse my vertebra.
He apologized to me afterwards. He said that when he did the first surgery, he hadn’t gone down deep enough to see what was underneath the disc, and that if he had looked, he would’ve seen already this material lying on my spine. But it just turned out to be a nightmare. So I had two surgeries in the space of a month. Now, I have cancer in those same vertebrae, so I’m pretty nervous about the cancer sort of eating away at the bones and what’s going to happen to the fusion and the vertebra. It’s just an ongoing saga.
There’s a woman in my support group who a couple of months ago, she was in the hospital on the Zoom call, because we meet by Zoom now, and she was in the hospital and she said that she had … She was in the hospital for inflammation in her legs or swelling in her legs or like that and they told her to get out of bed cause they needed to weigh her to see how much weight she was losing. And she stood on the floor and stepped onto the scale and as she stepped onto the scale, her femur snapped in half. So I was incredibly distressed hearing the story and seeing her lying there in the hospital. Things start to go through your mind where you think you could just wake up one day and move the wrong way and something breaks because you’ve got cancer there.
And so I asked my oncologist the last time I saw her, whether that was going to happen to my vertebra. I’ve got cancer throughout my bones. I’ve got it in my sternum and my clavicle and my legs and all over the place. But it’s in my spine and that’s the place that I worry about the most. And she said to me that there are different kinds of lesions and that I don’t have the kind that actually eat away at your bones. She said the lesions do weaken the bones, so there’s no guarantee that something won’t happen to them, but it’s unlikely that I’ll just step on the scale and snap my femur. But if I hadn’t heard that story, I probably wouldn’t have asked the question because after years of not being believed and constantly having to drag information in other people, you just kind of stop asking questions.
I try to trust my doctors. I do, even though I have a lot of reasons not to trust them, I try. I’m trying to trust them because I feel like they know more than I do and you want to be able to believe that when they tell you this is the best option for your treatment, they know what they’re talking about. This drug, the PIQRAY drug that just caused my blood sugar to go up and gave me this horrible allergic rash, they give you all of this information. They tell you these are things that could possibly happen, but they don’t give you any tools to deal with them. I guess, at some point, it can be overwhelming for people to be told you could possibly get hypoglycemia, therefore, you should be prepared to give yourself finger pricks, to test your glucose. But being told, if these things happen, call us immediately puts you in this position of feeling completely unempowered to take care of yourself.
And if you’re somebody who’s not used to being taken care of properly by your doctors and by your family, for me, I’ve always needed to be able to know as much as possible so that I can take care of myself because I don’t want to have to depend on other people to take care of me, which is a real problem when you have cancer because at some point I’m just not going to be able to take care of myself. And that’s terrifying for me to know that it’s not going to be in my hands, that I’m not going to be able to be the one testing my glucose or anything else that needs to be tested, that somebody else is going to have to do it and somebody else is going to have to give me my meds. And especially pain meds, that’s something that’s very frightening, that I might not be able to take the medicine when I need it and have to kind of be lying there waiting for somebody else to come when they can to give me my medicine.
So I think what all of these stories lead to is this lifelong condition of self-reliance, distrusting the people whose care you’re in while trying to trust that they’re making the best decisions for you. I think a lot of this stuff happened to me because my parents really wanted me to be a successful athlete. They wanted me to represent my country as a swimmer and they didn’t want to hear that I was struggling in any way physically or emotionally with that desire they had. And so just every time I had a problem, they just took me to the doctor to fix it rather than saying, “I think this is too much for your body, maybe we should reconsider.” I think if they had said to me, “Let’s not do the swimming anymore,” I would’ve been quite happy to stop, but instead they just kept pushing. And so that’s why I needed all of these so-called remedies, which I think in the long run, all of the treatment that I got from that very young age, including the surgeries just made things worse and worse.
My Anatomical Journal 