November 13, 2023, seems like forever. [Between then and now] That’s 72 days. That’s two months and 11 days (seventy-two days) since my last post. The time variance seems like forever. Or, borrowing from David Whyte’s Heart Aroused, I turned my head for only a moment, and it appeared forever. I missed my Thanksgiving, Christmas, and New Year’s Eve posts. It’s been a hectic 72 days.
First, my company decided to reorganize again. As always, management determines that they are the great leaders, though in reality, they suck but are afraid to admit it. Thus, the average everyday worker takes a hit and gets cut. So, a couple thousand good people lost their positions. I fully expected my job to go, but here I am.
Maybe management decided, “Well, let’s keep the guy dying from cancer. If he dies, we’ll contest the group life insurance payout on the basis that he did not take care of himself. If he cares for himself, we’ll deny his death benefits as ‘being attributed to another cause.’ In the meantime, we’ll keep him because we can use his handicap to get reduced taxes (both state and federal). Additionally, we’ll reinsure his salary, and when he dies, we’ll deny his death benefit payout and collect the insurance anyway.” (If one has read my blog in any detail, you’ll notice I have a certain sense of sarcasm.)
And while my sarcasm reaches many levels, it hits my medical procedures often. 2023 saw me pay $38,000 in cancer-related expenses. Though significantly needed, I did not get new eyeglasses. I could not afford them. I also managed to tick off my pain specialist. Like a used car salesman hawking dilapidated cars, “I recommend the Nervo HFX. It is the most advanced spinal cord stimulator (SCS) available. The HFX offers many benefits: best frequencies, relief for back and leg pain, and non-addictive.” However, I read a University of Sydney SCS research that found no sustained benefits to SCS surgery that outweigh both costs and risks. And in dueling narratives, Scientists slam pain report funded by a group linked to SCS surgery. For the time being, I stated, “Not now. Please let me think about the surgery.
Delaying the surgery involved several reasons:
- I was out of cash for any considerable expense.
- The success rate for SCS implants depends on the condition and device.
- On average, about half of people see more than a 50% pain improvement.
- My cancer doctor stated getting a detailed spinal MRI is significantly impaired post-SCS surgery.
Also, after a significant number of medical tests, my cancer physician believes I either have Light Chain Deposition Disease (LCDD) or AL Amyloidosis. At a high level, LCDD involves protein pieces of a rogue infection-fighting monoclonal plasma cell(s) that start producing uncontrolled light chains. The blood carries these extra light chains and deposits them in various organs. In AL Amyloidosis, either a malignant or pre-malignant growth of identical (clonal) lymphocytes or plasma cells.
Unfortunately, in AL amyloidosis, this overproduction can sometimes have the property of aggregating with itself, eventually interacting with other normal proteins. These lymphocytes (or plasma cells) typically impact the heart and kidneys. As a result, my cancer physician wants to perform a heart MRI (basically to search for AL Amyloidosis fibrils.
Before the MRI, the clinician will inject a low-level radioactive tracer called Technetium 99 PYP/HDP through an IV line. Radiologists start imaging between 1 hour and 3 hours after the injection to allow proper time for the radioactive tracer to circulate.
Unfortunately, there’s no cure for either LCDD or AL Amyloidosis. However, patients can go into remission with chemotherapy. Most patients surviving the first six months can often start recovering after that and can typically live near-normal lives for years to come. When they occur, remissions can last a decade or longer in our and other centers’ experiences. I am unsure I can survive a decade.
By the second week of December, I was mentally and physically exhausted. I canceled a trip to the southern US coast just to sleep. I spent all of Christmas and the New Year’s break sleeping. I slept 12 hours every day. And instead of getting frustrated, I practiced mindfulness and acceptance. Mindfulness is a core practice in Buddhism. It encourages individuals to be fully present in the moment and accept their experiences without judgment. For cancer patients, mindfulness can help manage pain, reduce anxiety, and improve overall well-being. Honestly, between you and I, I am unsure if meditation increases overall well-being, but I stuck with it. However, mental detachment from outcomes allowed me to make responsible choices about treatment and care.
Additionally, I lost interest in the battle. I was mentally exhausted. Over the last 70-plus days of not writing, I presumed some lost interest in this blog and my story. In my case, there’s no longer a fascination with the horror of cancer, lumps, LCCD, or other weird physical ailments. Everyone has their own life. Borrowing from blog writer Julie Ip-Williams, I know people still care even if they are not reading this blog. However, incredible stories of unlikely cures no longer interest me. Why? Well, they usually don’t occur.
In the past several years, I’ve endured a torrent of heartache, pain, and disappointment, leading me to fortify my resolve with an even more impenetrable shield, determined that nothing and no one shall ever wound me so profoundly again. Still, I am learning to open up. I will provide more details in upcoming blog posts.
Thanks for sticking with me through these past 72 days.