I haven't written at all here about my recent health journey. It began last fall as I noticed breathing issues and lightheadness, plus heart palpatations at age 55 and a few weeks. I wrote it off as both age and stress. But in early November I was pet sitting in Fort Myers near FSW (the college) and riding my bike to the Publix Supermarket across from there on Summerlin. It was a casual ride of maybe half a mile. A sudden attack of lightheadedness as a result of shortness of breath made me stop in my tracks. Standing there straddling my bike, I was worried I might faint and hit my head on the sidewalk or concrete utility “pole” next to me.
That surprised, startled and scared the BEJESUS outta me! None of the previous symptoms had been that severe or sudden. I gathered myself and rode onto get groceries. It took 3 or 4 more episodes, the final one nearly sent me onto Gladiolus off my bike, a shooting pain up my left temple, to get me to the ER.
The photo above left is dated November 7, 2023, at Gulf Coast Medical Center. My good friend, brother and bandmate, Craig, prodded me for two days to go get checked out before driving my stubborn ass to the Ft. Myers hospital. He sat with me all day in the ER until I was assigned a room, through a litany of scans and tests, including an ultrasound of my legs.
The diagnosis was two deep vein thrombin (DVTs) in my legs, one with little chance of movement, and a small pulmonary embolism in my left lung. Two of them could have dislodged and sent me to an early grave. I was glad to have gone and gotten checked out. I really appreciated my brother (not by blood) for helping me out and laughing with me all day Nov. 7th. I was prescribed blood thinners and released.
Through the fall months into the beginning of winter, I continued to suffer breathing difficulty while exerting myself. And I continued drumming in Craig’s band. If you understand the independent movement involved in that endeavor, then you know what a calisthenic workout that is, giving a full cardio workout every gig. My brothers in the band were understanding and helpful, taking extra minutes between songs, lugging my gear for me and showing kindness. It was appreciated. Still, it made things difficult and playing became laborious. I gave notice in early December that I wanted and needed out. It took until mid-January for Simply-Fi Band to find an adequate replacement.
That was more timely than I could have imagined. At a January 24th visit to my regular doctor, our first time ever meeting, her nurse noticed a very low heart rate of 40 when she took my vitals. A normal low rate might dip below 60 and I usually stayed in the low 60s. My heart rate that day, known as Bradycardia, rang alarm bells and immediately the doctor had me on an EKG. She came in and calmly told me this was an emergency situation and offered to secure an ambulance ride to the ER. “You’re in Level 3 heart block, or total heart blockage,” she explained to my utter astonishment. I was there for a post-op checkup, not a sick visit. I FELT FINE! I was experiencing NO SYMPTOMS of Bradycardia at all. PLUS, I’d never had a heart issue…EVER!
That day when I got to the ER, the nurse at the door put the pulse-ox on my finger and it read 38 BPM. That seemed crazy to me. But what happened next was downright scary to me. Without hesitation, they wheeled me into triage to hook me up to an EKG before whisking me into an exam room down the hall. Immediately, I was descended upon by a half dozen staff members—nurses, techs, doctors—they were sticking me in both arms, slapping diodes and shock pads on my unshaved torso…it was like an episode of NBC’s hit medical drama ER. They were stunned I was asymptomatic. It felt like they were ready to crack open my sternum and get the ribcage spreaders. I was mortified. I’d gone to my doctors office that day feeling fine, in for a routine checkup. The cardiologist came in for a consult and informed me I’d be surgically implanted and outfitted with a pacemaker. He sounded like we were making conversation, so matter of factly, it was off-putting. WTF? My head was spinning!
It was snowbird season and the hospital was at capacity. They couldn’t get me into a room on their cardiology floor until the next morning. So I spent a dark night of the soul in an old, nondescript infirmary turned patient holding room with nothing but a fluorescent bulb buzzing overhead on a corner with constant traffic and the moans of people in real pain. I was in no physical discomfort, only psychological. I’d just been hit with a PE and DVTs in that same ER almost three months earlier.
My life since November had slowed WAY down. I wasn’t riding my bike AT ALL. If I fell, I risked injury and serious bleeding as I was on a blood thinner. I wasn’t writing and besides a busy weekend band schedule, I was sitting at home. I was depressed, overeating, drinking booze and sedentary. And NOW THIS??? I’m only 55! I cursed the Universe that night in the ER, a second time for life-threatening medical issues, and I asked out loud, “Did you bring me down here just to die?” I’d been living on my beach, my happy place, for just over seven months. It seemed a cruel joke…a twist of fate. I seriously felt my mortality.
Next day, I was ill from the stress and fitful sleep. I felt hungover and asked my nurse for pain relief. I was given Tylenol. On an empty stomach still in knots, I got sick into a barf bag in pre-op. The pacemaker surgery was quick and painless. I lost a lot of chest hair to the impromptu wax job I received in pre-op. Now my hairless chest was marked by a two inch incision just below my left shoulder. Ever since, it’s been working 99% of the time keeping my ventricle in rhythm with the atrial and regulating my heart rate.
Fast forward to today, May 2nd, and I’m in the hematologist’s office for a second visit, this time to go over my labs. Blood work revealed no obvious signs of a coagulent disorder, no reason for my clotting. She did dig deeper though and noticed an abnormality in my antibody heavy and light chains. My Lambda/Kappa ratio was nearly off the chart. A normal ratio can be as high as 1.6. Mine was more than 16 (see below).
She drew me a chart on notepad paper to help explain what this chain issue meant. These antibodies were malfunctioning and would need a bone marrow test to ascertain why. The possible causes include Myeloma. NOW I MIGHT HAVE CANCER?!?!?!
I’ll go back to see her in seven weeks after I give a bone marrow and soft bone tissue sample. That was not the easiest news to digest. I first texted my girlfriend and then my sisters (two of them). I won’t worry my two daughters with this news until we rule out cancer on June 19th.
If it turns out I have Multiple Myeloma, I don’t know how I’ll handle it. In the meantime I’m also scheduled for a CT scan and chest X-ray to check on my PE. I’ll be on blood thinners the rest of my life. But cancer?? My mom and her mother both suffered and died from metastatic breast cancer. I can’t put my loved ones through that. I left the Cancer Center, missed the bus and walked six miles to where a friend picked me up this afternoon. I needed that walk to digest the possibility. I’m still digesting and in shock.
Did the Universe really bring me here to die?
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