Is It Preparation or Paranoia?
Having spent more than a year trying to convince my former primary care doctor that something was wrong, I have experienced wrongly being branded paranoid or a hypochondriac. What I was, I now believe, was intuitive – knowing deep down inside there was a serious medical problem and it was not, as I was told, “all in my mind.”
Turns out it is chronic myeloid leukemia (CML) and I’ve learned a lot over these past six and a half years about being in tune with my body and understanding life with blood cancer. The most important thing I’ve learned is to trust myself. Call it a vibe or a feeling but I will never again tolerate a dismissive attitude from a medical “professional.”
Thankfully, since my cancer diagnosis, I have not had to. My medical team is mercifully responsive, communicative, and transparent. I’ve had to hear things I don’t want to hear. But that’s okay. It helps me prepare for what’s ahead—the next crisis du jour.
I've had a lot of scares
Back in 2015, I prepared myself for a fight with metastasized cancer when a strange lesion appeared on my thigh. Tests and scans galore followed culminating in a bone biopsy (which is not to be confused with a bone marrow biopsy). Then, there was another scare a couple of years later. I developed a “flushing” disorder that to this day, hasn’t been figured out. For four months, I darted back and forth between eight (count them 8!) specialists in various departments. They all tried to pinpoint a cause through a lot of blood work and other tests. Following a batch of tests, multiple myeloma was ruled out when my internal inflammation markers went wacky.
A myriad of secondary dramas highlighted the past two years. These included an Achilles tendon tear (without a fall) as well as a Brevis tendon tear that wouldn’t heal. My life became casts, boots, and physical therapy – oh, and let’s not forget full-time work. The latest dilemma involves waking up one day with excruciating lower back pain. I believe I have a very high tolerance for pain, having been through past major surgeries, etc. and heck, leukemia. However, this back thing has knocked me down and out. It made me lose any momentum I was starting to gain through an exercise and strength training program.
I’m not saying all of this to whine or listen to the sound of my own voice. It’s discouraging. First, the explanation was a pulled muscle (while I was sleeping?) Then, x-rays showed that I suddenly have slipped vertebrae and other spinal issues.
Bracing myself, just in case
I never know what to expect but I want to feel prepared. Next month, I see my CML specialist and we’ll discuss all these latest developments.
Someone asked me the other day whether I think my back pain is from my cancer spreading somewhere else. Not a pleasant question to hear but my mind had already gone there. Who knows? Is it paranoid of me to worry there is some nefarious underlying cause? Am I in for more bad news? Meanwhile, I’m back in the recommended physical therapy with minimal results after a few visits.
Rather than thinking I’m paranoid waiting for the other shoe to drop or the next big disaster, I like to call it “self-preparation.” Who knows? It may not be as bad a reason as I think. In any case, I’ve braced myself just in case.
What type of blood cancer are you or your loved one diagnosed with?