[NOTE: I haven’t posted a blog post in over a year. I’m also not very active on social media anymore, except for leading the nightly rosary on the Blessed Mother Mary Facebook page. There is a reason for this. Through prayerful discernment, I am quite certain that God has asked me to be quieter. Speak less. Write less. Pray more. Read more. Focus on my family and my job. I’ve always presumed that this Divine “injunction” would be temporary, but in all honesty I have no idea if and when it will ever end. The days of sipping scotch and waxing philosophical from the Side of the House now seem distant indeed.]
As many of you know, my health is not good, but through the grace of God I am still pretty active. Lately I’ve received lots of questions from nice people about my health. Here is my dilemma:
The people who ask me about my health care about me and my family. It is very kind of them to inquire. If I tell them everything is fine, then I feel dishonest, like I am somehow disrespecting them by not being forthright. I value these kind souls and hate the thought of pushing them to arms length.
On the other hand, I am fighting so many battles that it is difficult to succinctly summarize my situation in a way that doesn’t immediately demoralize both of us. The more in depth I talk about my health battles, the more I leave people walking away feeling sad or discouraged. I want to avoid that.
So I think the best thing is to write it all down and allow people to choose how much or how little they want to know.
The short answer is that I’m battling multiple things, most of which are interrelated. For most of you, that’s probably all the info you really need. So if you want the short answer, you can stop reading now. I appreciate your prayers and support.
For others, here’s the long explanation: As background, it all started with Hodgkin’s Lymphoma in 2003. Then relapses in 2005 & 2007 which resulted in two stem cell transplants. I’ve been chronically ill since. In the past 18 years, I’ve only had one year where I haven’t been hospitalized for something. My lung capacity was significantly reduced by radiation to stop a tumor growing next to my heart in 2003. Later on, blood problems led to the removal of my spleen.
Vocal Cords. My vocal cords have been attacked by the HPV virus for the past six or seven years. This results in papilloma (sort of like warts) on them. Shortness of breath, difficulty speaking, and loss of voice. Without surgery, I would eventually suffocate. So every few months, I undergo this surgery. I’ve had 8-9 of them at the University of Pittsburgh Medical Center and another 7-8 at the University of Michigan. 20 surgeries in total. These take about 7-8 hours from check-in to release so we have to drive there and spend the night. I expect my next one to be in June or July.
Parvovirus B19. This is another virus that wreaks havoc with me. Usually my symptoms are achy joints, exterior tenderness, and fatigue. In March I had those symptoms but I also got some nasty blisters that covered both of my hands. The pain was intense. The only way to escape it was to sleep or go on long walks to distract myself. I couldn’t work or do much of anything productive. To resolve this, I have to take IV infusions for three non-consecutive days. They take about 5 hours. Last year I did a M-W-F sequence of these infusions every month for 8 months. I expect to do the same thing for next several months.
Heart. On the evening of March 24th, 2021, I had a heart attack. A stent (a sort of micro-pipe) was put into one section of my heart. I have 3 other blockages that need to be addressed. One is a 70-80% blockage. One is 60-70%. And one is 40-50%. Like many issues in medicine, the best solution is not immediately clear. Options are: 1) By-pass surgery. 2) Put in more stents. 3) Treat it with medicine and watch it.
My awesome new cardiologist at the University of Chicago specializes in post-stem cell transplant cardiology. I just underwent a battery of tests at UChicago last week. Unfortunately, preliminary indications make it look like my heart condition cannot be corrected by diet or exercise. My problems likely have been caused by the 5 or 6 chemotherapy protocols over the years coupled with radiation damage to my heart in 2003. Back then I had a fist sized tumor in my chest. My radiation oncologist said to think of the collateral damage from my radiation as taking 15 years off the life of my heart.
Head and Brain. I’ve been plagued with “chemo brain” for about 15 years now. This is cognitive impairment due to chemotherapy. My cognitive function in one area dropped from the 80-90th percentile to the 8th percentile. This week, however, I’ll have a CT scan of my cranium. They are looking for a reason why I keep having sharp, debilitating pain inside my ears and shooting through the nerves in my head. It feels like a knife shoved into my ear every 30 seconds or so when it is active. My doctor looked into my ears and couldn’t find anything so they’ll be looking for a brain tumor.
Other Ongoing Battles.
- Chronic tinnitus that comes and goes.
- Broken kneecap still not healed from two years ago. I am wobbly. For some strange reason, my recent heart attack triggered significant stiffness and pain in my knee.
- Recurring blocked salivary duct. Very painful.
- Chronic congestion and productive cough.
- Severe Sleep apnea that stresses my heart without my CPAP machine.
- Periodic mouth sores / sore throat that seem to be tied to one of my chronic viruses.
So there’s the update. I hope to write a reflection on all this sometime soon, but that may or may not happen. Until then, thanks for your thoughts and prayers. Onward!
God Bless! – BK