On April 28th of this year, I woke up around four in the morning with a sharp pain in my right leg. Assuming I had slept on a nerve wrong, I took several ibuprofen and tried walking around the house.
The pain only got worse, and progressed to the point that I could no longer stand, or hold a conversation that didn’t include mostly grunts and gasps. Haley, my concerned wife, brought up that the pain may be due to a blood clot, which would be a dangerous development.
She managed to get me out to the car, and drove me to the nearby Emergency Room at Lee’s Summit Medical Center. I was admitted, and laid down in a triage room, while the nurses asked me to identify the source of the pain.
Unfortunately, the pain had no singular source, so I was reduced to running my finger down various parts of my upper leg and telling them “Here, and also here.” After a few minutes of this, it became clear that the staff thought I might have come in looking for drugs.
The pain slowly abated while I laid in the triage room, and the doctor eventually came in. He bent my leg a couple of ways, told me it wasn’t a blood clot, and suggested that I had indeed slept on a nerve wrong. He prescribed me a course of steroids, and a painkiller called Tramadol.
I went home, took the pain killers, and worked from home that day. I took the steroids as they were prescribed, and the pain went away for a couple of days, before returning just as strong as before. I tried taking the Tramadol, but the only effect was to make me throw up all the water and sugar-free Powerade I’d been drinking to stay hydrated.
This time, the leg pain did not go away on its own. I had noticed a pattern that the pain got much worse in the middle of the night, and one night a few weeks after my initial visit I was forced to return to the Emergency Room. Describing the source of the pain was still a problem, as it seemed to be coming from everywhere at once. The best way I could explain the primary pain was that someone had their fist inside my thigh, and was squeezing my femur as hard as they could. This also caused what I took to be sympathy pains emanating from my groin, hip, and knee.
While I don’t like pain, I think I have a fairly strong tolerance for it, but when it got rolling, this pain was the worst I’ve ever had. I once had an exposed nerve in my jaw that drove me to tears, and that was as close as I’ve come in the past. This pain was so strong that it left me laying on the couch, rolling back and forth, only able to make grunting noises and remember to breathe.
The second visit to the ER left me with another steroid prescription, and a prescription to Percocet. I’ve always had a strong fear of the dangers of prescription drugs, and what they can do to otherwise good people, so I tried to only take the Percocet when there were no other options. It did seem to take some of the edge off of most severe pain, but it always came right back.
At this point, it had been almost a month since the pain began, and my work was starting to suffer. I had some very large projects with deadlines that were closing in real fast, and between my taking time off due to pain, and all the doctor’s visits, things were starting to pile up.
What I found almost as bad as the pain itself was the humiliation. People would see me walking as if I had a broken leg, and naturally ask me what the problem was. Having to tell them “I don’t know” almost always led to some raised eyebrows.
Beyond that, it felt like none of the medical professionals I saw took my situation seriously. They would suggest that I had pulled my groin, or maybe just twisted my hip funny. They told me to rest, and it would go away on its own.
Needless to say, it didn’t.
I worked with my Primary Care Physician to schedule some tests, which they took their time doing. It was over a week before I got a call from a scheduler, and then I was told that the Blood Clot Ultrasound I was referred for would be scheduled for the following month.
Telling them that we had already ruled out a blood clot seemed like a wasted effort, so I continued in pain and waited weeks for the appointment. The test came and went, and the nurse happily told me that there was no blood clot and I should be fine. The fact that I was clearly not fine didn’t really seem to register.
I scheduled another appointment with my Primary Doctor, who was again baffled as to what it might be. He suggested that it could be arthritis, and referred me to an Orthopedic Surgeon for an MRI. This would take another two weeks.
On June 15th, the day I was scheduled to meet with the Orthopedist, I woke up again with the pain worse than it had been before. The muscles in right leg seemed to be clenching and unclenching on their own, each time sending a wave of disabling pain through my body.
After spending an hour dealing with the pain, waiting for it to fade away, Haley and I decided that we had no choice but to return to the Emergency Room. I was again brought into a triage room and told that there was really nothing they could do. I was in too much pain to speak, so my wife tried to explain that this had been going on for over six weeks, and that we were desperate for help.
I did feel lucky in that the on-call ER doctor seemed to take my situation much more seriously than the nurses. I was injected with steroids and a stronger pain killer, and after twenty minutes or so the pain had lessened to the point that conversation was possible.
The ER doctor studied my leg, trying to find any areas of numbness, bruising, or sensitivity to pain. He suggested that I may have had a “severe groin pull,” which was sending pain down my leg in waves. It sounded ridiculous to me, but I was up for any possible solution at this point.
I told this doctor that I had an appointment with an Orthopedic Surgeon later that day, and he strongly advised me “Make sure they MRI your pelvis.” I thanked him for his help, and went on to see the Orthopedist later that day.
After a long wait, the Orthopedist saw me and had me raise and lower my arms, then hit my knees with a reflex hammer. He then told me that the problem was in my spine, and that he was ordering an MRI of my spine. I gave him the advice passed on from the ER doctor, but it seemed to have no effect.
The following Monday I went in for my MRI, and they explained that only my spine would be scanned. I again passed on what I had been told regarding my pelvis, and the staff seemed to understand, but told me they could not change the location of the MRI after it had already been scheduled.
The MRI was a little intense, and very, very hot, but otherwise not too bad. They gave me headphones to listen to music, and it only took about 30 minutes before they remembered to actually turn the music on.
Despite the issues with the placement of the MRI scan, I was feeling pretty good about my situation. I agreed with the ER doctor that the problem could be a pulled groin, and I was happy to finally have some kind of diagnosis to tell my co-workers.
A few hours after the MRI, one of the assistants called me and told me that there had been some “anomalies” in my scan, and that they were ordering a follow-up bone scan for the next day. I asked the assistant what the the “anomalies” were, but he refused to tell me.
A quick aside: I will talk about this much, much more in later posts, but I love my wife very much. She is the most amazing person I’ve ever met, and she has more love in her than anyone on the planet. She also has issues with anxiety, and I always try to do and say things in a way that will cause her the least amount of anxiety.
I didn’t feel like it was a good idea to leave the idea of “anomalies” rolling around in my wife’s head for a couple of days, so I started going through all the online patient paperwork I could find regarding my tests. It was there that I found the following passages (emphasis mine):
There are innumerable spherical bone marrow lesions present throughout the thoracolumbar spine vertebral bodies and pedicles. Additionally, spherical lesions are seen in the sacrum, iliac bones, and acetabula on the large field-of-view survey/scout sequences. These lesions demonstrate T1 and T2 signal hypointensity and many of the lesions demonstrate mild STIR signal hyperintensity.
Numerous spherical bone marrow lesions present throughout the thoracolumbar spine and osseous pelvis as described. These lesions are highly suspicious for osseous metastases.
Here’s what all those words mean: Parts of my spine, and of my pelvis, had been “punched out” and were now missing. After reviewing the tumors (or “lesions”), the Radiologist came to a conclusion: I have cancer.
Continued in Part Two