With all the fun doctors and I have had over the past half-decade, I still have folks who ask me, “What’s wrong with you?” And unlike before when that question was asked because of something stupid I’d done, it’s now especially relevant, particularly regarding my health.
So, much like Paul Harvey, here’s the “rest of the story”…
Our tale begins back in 2014 when I was diagnosed with Meniere’s disease, a rare condition of the ear that disrupts your vestibular system — which controls just about all your sensory perceptions. And there is no cure. Few people even know about it…and the government allocates ZERO $’s for research. All research is privately funded.
Anyway, we pondered the matter and decided to go public with my battle in order to, hopefully, increase awareness about Meniere’s. I initially did a drug trial at Duke, which failed, so in December 2015 I had endolymphatic sac decompression surgery at Duke where they dig a trench behind your ear, cut away some mastoid bone, and hope for the best. And it helped me tremendously, especially in reducing the number, frequency, and severity of Meniere’s attacks…which is good because I’ve had two doctors tell me Meniere’s was the worst disease to have that WON’T kill ya — only make you wish it would. I was happy…but still having “episodes”…so I wrote this. I’ve been told by many that this blog/FB post was the most accurate layman’s explanation they’d ever read about MD. (My blog stats show it’s been viewed over 6,000 times, in over 50 nations, and translated into at least four.)
And life went on.
The second chapter began three years ago on June 29, 2018 when I was diagnosed with Multiple Myeloma, a cancer of the plasma cells in our bone marrow. It, too, was nearly unknown — and, again, it has no current cure either. But this one is terminal without the proper care and management for the balance of your life; you have to fight for future days. We went public with this medical situation for the same reasons as MD: to create AWARENESS. (Hey, at least I’m consistent: I’m two for two on incurable illnesses!)
But this one was physically ugly.
By the time I was diagnosed — during a check-up on shoulder issues (both which turned out have partial tears in both the rotator cuff and the bicep muscle, probably as a result of falls due to Meniere’s), it had formed lesions on a good many bones, eaten away four inches of my left iliac crest and “hollowed out” about the same in my upper right arm, as well as created tumors on the right shoulder and left hip. A few bone biopsies, where they stick a needle into your bone marrow to obtain a marrow sample, confirmed the problem, so I got those radiated away, then started the chemotherapy for the cancer — and was allergic to so many drugs I had to switch to immunotherapy…all in an effort to get my myeloma under control enough to do a stem cell transplant. I finally reached that goal and in October 2019 Judy and I moved to Durham to prep for the SCT, then went to the hospital EIGHTEEN days in a row, weekends included, at 8:00 a.m. — and usually staying alllll day, every day. And the stem cell transplant was a success, but in eliminating the cancer they had to kill all cells to get the bad ones, which wiped away my immune system, forcing me to wear a mask and stay isolated. I was about to start catching up on childhood vacs when COVID hit, so I was doubly afraid of ANY infection; Judy has to wipe off anything I touch…groceries, mail, phones, etc…everything.
So, I’ve been wearing a mask for almost two years now — and will for a while longer now because some of the medications were known to have the potential to damage the jaw (usually the lower mandible) and teeth – and I soon began to have serious dental issues. (I’d had to get prior dental clearance for the chemo I had to take; the dentist did one small filling and signed off as me being good to go.) It appears the meds, as feared, have “melted” my teeth — one fell out; one blew apart; and all the top teeth were cracked, chipped, or gone — and I had to stop all my maintenance chemo meds in the Spring to clear my system for dental surgery on July 23 at Duke where I had my teeth extracted, taking all but five on the bottom front to help with securing a denture. (So, more mask time lies ahead as proper healing with my weakened immune system is critical – and to also cover the bottom of my toothless face! If healing does not go well, we’ll have to relocate to Duke again to have a couple weeks of sessions in an oxygen hyperbaric chamber.)
Then, when my back and hips started hurting significantly worse – and then worse — over the past few months, it was feared that my inability to continue with the chemo meds had left me exposed and the myeloma was back at battle setting fires — while we sat on our hoses, unable to attack it. Thankfully, a PET/CT scan came back showing no serious problems, and the blood labs were good enough, with no new myeloma cells present, so we’re hoping the pain is just a manifestation of existing issues, with a high likelihood that arthritis has attacked those destructed areas. A pelvic MRI confirmed has dictated some more radiation is needed in my left hip.
But no NEW significant damage, thank God.
Anyway, I am a very blessed man. And not just with Judy! I have an amazing support group of family, church members, dear old and new friends, and a couple organizations that assist me with Rx expenses and such. As Judy proves: NO ONE FIGHTS ALONE.
THANK YOU all for your support; it’s made a bumpy road a bit smoother.