Long Covid, Turbo Cancer, and Fast Car

I can't remember (insert Long Covid cognition joke) who said it that "nothing makes you appreciate living than nearly dying"--or maybe I was the one that said it back in 2014 when I crashed in a triathlon and nearly died on a Saturday night in the ICU of Memorial Hospital in Colorado Springs.

I had nearly come to terms with my disabled Long Covid life in July of last year with my wife. We traveled to Martinos Center for Biomedical Imaging at Massachusetts General Hospital in Boston for a Long Covid brain study with Dr. Michael VanElzakker. We'd parlayed the volunteer trip (on our dime) into a luxury hotel (Liberty Hotel) stay in downtown Boston.

It was a trip down memory lane as "Mrs Seeking Boston" and I had grand memories with my five Boston Marathons. Without working or running anymore, I hadn't been back to "Beantown" since my last marathon there in 2015. Energy limited what I could do, but we certainly spoiled ourselves with the phenomenal hotel and great meals while we were there. I felt we'd got to a point where we could both enjoy what we were able to do (even if it was room service in a five-star hotel) versus what I used to be able to do.










Then came some "new symptoms" that I couldn't tell if it was the impact of Long Covid or something new. Hard to tell, but I know it was mid-summer I felt like I'd "pulled something" and had some pain in my groin area. In parallel to that, I'd experience some "plumbing" issues with my urination--inability to empty the bladder and frequent urination at night. (see "growing old for men.") Perhaps lost in the blur of everything else going on medically, I reached out last July to my primary care to set an appointment to talk about it.

As usual, this post meanders a bit more like "kernels of popcorn in the microwave," but it certainly mimicked my migration to Medicare on July 1, 2023 as it was a confusing process. As part of being approved for Social Security Disability (on top of my private insurance disability--they deduct any SSDI from what they pay; which is why they funded my lawyer) I migrated to Medicare. Perhaps a whole blog post in and of itself, but I essentially migrated from (working with) great insurance, to very expensive COBRA insurance, to even more expensive private market insurance, to Medicare.

Along with Medicare we selected a supplemental Medicare Advantage plan--again; more money but far cheaper than private insurance or COBRA. We selected an Advantage plan that worked with my neurologist and my primary care--among other reasons. Our surprise was calling July 1st this last year (or thereabouts) to talk about my (ahem) "plumbing issues." To my disdain, they politely said "oh yeah, we need to fix that website, we don't work with that insurance." Curses...

PET Scan December 2024

This started the process of seeking a new primary care doctor that was in my insurance network that could at least spell "L-o-n-g C-o-v-i-d" or knew what it was. I found one but it was months out to get an onboarding appointment. Feeling the pain (of the experience trying to navigate Medicare,) the pain in my groin, and trying to find a new doctor, I called an "audible." I went in to urgent care this last August with chest pain (again) and figured I'd have them check out the plumbing as well.

The EKG was normal and I got yet another hypothesis for the chest pain. The physician assistant then had me "drop the drawers," turn my head and cough. The PA felt what he thought was a hernia and put in a referral to a surgeon. Three weeks later; the surgeon performed a sonagram to look at the area in question. I walked out without a Spiderman sticker and the test results were negative for a hernia. The doctor suggests a physical therapy consult.

Another month passes and I finally have my new primary care appointment in September; 3-4 months after I notice this new pain. I really liked the new doc and he seemed quite literate on Long Covid. He was also in the same hospital network as my neurologist which is UC Health. Dr Sanchez did a full "onboarding" with loads of questions, bloodwork, and among the blood tests he runs was a PSA (Prostate Specific Antigen) test which screens (not definitively) for prostate cancer.

Normal PSA levels are 1-4 and mine came back later that afternoon as 77. This prompted a cascade of appointments and tests with a Urology Oncologist who ordered an MRI and biopsy. I liked the urologist and he initially allayed my fears of the worst. At this point, I'd comment that the good news with medical "portals" is you get news right away; the bad news is you get news right away. A handful of scary words can be "triggering" read off a portal without the expertise immediately of the doctor who ordered them.

The MRI noted a "Gleason Score" of eight which (8-10) is the in the highest category of prostate cancer considered "high risk." My oncologist "talked me off the ledge" but indicated it was (with MRI and PSA in hand) likely stage III cancer that had metastasized but he needed the biopsy (and subsequent full-body PET scan) to definitively label the "level" of cancer and its' spread. 

Once we had the biopsy completed (and again panic as my wife and I read it from the portal before the consult appointment) we met again with the doctor. His usual disarming conversational tone and charm (I'd established joking as my defense mechanism) had changed to a more somber conversation in his office just prior to Thanksgiving. I can't remember the exact words, but it was essentially "it's not good news." I had stage IV cancer that had metastasized to the bone. He would schedule that full body PET scan two days later.

Yet another MRI; this time focused on the groin area











My mortality panic ensued when I asked him "how much time do I have left" and quickly followed with; "how are we going to treat it, are we going to do chemo?" His answer was "are you sure you want to do that; wouldn't you rather live your life?" We interpreted that as it was too late for treatment. The doctor held my hand as I held my wife's. We cried in the office, we cried at the deli on Colfax Avenue in Denver on the way home.

"This can't be right," I'd continue to mutter to myself. I'd already "come to grips" with my life. I  wouldn't likely see my 70's or 80's like both my parents did due to the decline of my Long Covid body. While we can't definitively connect my cancer with Long Covid, my urology oncologist said that my "broken" immune system likely set me up for not being able to "fend off" this cancer. Fortune Magazine said as much in their recent article, "

My urologist referred me to "the best" medical oncologist in their network, but that appointment seemed months away but set for January 4th. My aunt who's been my "favorite aunt" (no disrespect to my other favorite aunt Joan on the East Coast) was in town. I texted my sister that I needed them to come over to share the results. Aunt Marge (who was still grieving the loss of her sister and my Mom last year) showed up with my sister Kim, (her husband Marc,) and my brother Todd.

We sat on the sofa in front of the fireplace. I couldn't make eye contact as I didn't want to hurt my aunt and family. I stared at the floor and said, my doctor got my (biopsy) results back and it's "not good." I collapsed in tears and my wife shared the rest of the details. I had to then let my daughter know. For some reason that was the conversation I feared the most.





I'd gone to a family friend's wedding last summer and cried as I watched one of my best friends of nearly 40 years give the "father of the bride" speech and dance with his beautiful daughter Kaila. I cried as I wasn't sure I'd have this moment with my daughter. A wedding and grandkids seemed out of reach in the time I thought I had left. I was amazed with the maturity and optimism my daughter Nikki displayed when I told her. It gave me some strength.

As I pondered my life, I feel I've accomplished much with my marriage and raising three kids. I've traveled the world as far as the Taj Mahal in India and the Great Pyramids in Egypt, but I had so much more life to live in the (what I thought was) the final decades of my life.

Based on the Dr.'s consult and him discouraging treatment, I had the Christmas holiday and New Years to ponder my cancer and mortality. I had "new pain" coming from my bone cancer that was different than the arthritis I was able to manage for years attaining five Boston Marathons. 

I took an obvious needed break from the online Long Covid community as that seemed insignificant despite the solace and solidarity I'd built through X (formerly known as Twitter.) I didn't miss it and focused on my wife, family, and living as much as I could.

This has been my longest hiatus between blog posts for my former running blog turned Long Covid recovery journey and advocacy blog, now to a fighting cancer blog. I felt like I needed to get words on paper (or typed on a laptop) to share or advocate just as I have throughout my Long Covid experience online.

Before entering the holidays and meeting with the medical oncologist, my urology oncologist said that the medical oncologist would likely start me on hormone deprivation therapy; so we started with two shots to the belly in our final (consult) appointment and another dose a month later. He described this as chemical castration. I won't delve deeper into what that meant but I'll let you Google that one on your own. Another thing stolen from me since 2020 when this all started.

Before the end of the year, I put my Long Covid clinic on pause as quite frankly, fighting cancer right now is a higher priority despite no breakthrough or change in my symptoms there--I still have (micro) blood clots, I have damaged mitochondria, endothelial damage, neuropathy, vasculitis, cognitive impairment to name a few all associated with Long Covid. For the first time, we both wept as I described my diagnosis to my RTHM (Long Covid clinic) doctor. He cared so much about getting me better, but now another leg of the marathon was ahead of me.

During a routine update to my private insurance senior case manager, I'd previously made her aware of the pending PSA tests and gave her my Stage IV cancer updated diagnosis. It seemed ironic when she (actually has been pleasant and understanding of my illness thus far) asked, "so how are you feeling otherwise?" I stifled a sarcastic laugh and explained that sofa and bed rest have increased and symptoms of Long Covid have not dissipated. I feel worse.

As I tried to maintain some level of decorum through Christmas, my wife was amazing. She knew what to say, sometimes not saying anything, or letting our emotions out. We tried to not let our mortality imaginations run wild. Despite this, this whole experience messed with my psyche during the day and especially at the "witching hour" as I call it; after 8 PM and whenever I eventually fall asleep each night as I pondered what lies ahead.

We did have two very special moments that stick out in my mind  as we processed the news over the holidays; watching a sunset together one night and another night having a dinner date. Those nights I did feel like I loved her like it was a "first date" all over again. I was "George Bailey" (from the 1946 film, "It's a Wonderful Life") as "the richest man in town" when measured by the love of my wife and those closest to me. Maybe it was glimpses of either acceptance or a sliver of hope.

Once the few Christmas presents under the tree simply adorned only with lights (not having the energy to hang ornaments this year) were unwrapped, my adult kids went their separate ways and the house was empty except for the twin pups, my wife and I. The house was eerily silent and I tried to fill it by watching sports and Netflix--trying to distract and occupy time waiting for January 4th. The clock and the calendar moved slow.










I spoke to an old college friend's wife. He had a terminal cancer diagnosis with little time left. He's still here eight years later. In my mind, I felt if I'd get eight years I'd consider that a "win."

Sorry for the length of the update, but it's hard to fit this type of experience into a few words.

The day came and we'd joke later that you know you're getting older when your doctors are younger than you are. as young doctor Eule walked in and diffused the conversation quickly with a brief introduction and asked me, "what do you know?" (about my cancer.) 

I repeated what I knew; my PSA was 77 and jumped to 117 which prompted an MRI, biopsy, and full-body PET scan. My urology oncologist said it was stage III cancer but pending the PET scan, it would likely be stage IV. Once again with the advantage of having the portal report of the PET scan we knew it had spread to several areas of bone, but hadn't spread to organs.

I shared what I thought I'd heard from a life expectancy standpoint, but "individual results" may vary.

He was surprised and stated that I summarized it well. It was in fact stage IV, but was quick to point out "there are treatment options" met with a huge sigh of relief from my wife and me. He said that it was common for prostate cancer to "jump" to bone but not common to spread to organs. He confirmed my hope that there was no organ involvement (yet) based on the testing. While prostate cancer is treatable, bone cancer (mine at least) couldn't be eliminated but we can treat and try and curb its' growth.

Think of testosterone as the food of the killer dinosaur named "cancer(us-attackus.") Kill the food (with the hormone therapy) and starve the dinosaur. My analogy not his.

The "plan" would start with the hormone therapy (the two injections I had in November and December) going to a periodic (every three month) basis. I would also start an oral (pill) version as well. Man--I guess they really want to starve "Cancerus-attackus." Seems odd to say this or type this but I was happy to hear him say we would then go with a "blast" (my understanding and word, not his) of chemotherapy. I never thought I'd be happy to hear, let's sign you up for chemo, but this meant we were going to fight. I still have fight in me.

More blood tests (one liver panel) and loads of details from the oncology pharmacist that educated us on the months and treatment ahead. It seems that cancer treatment has "advanced" quite a bit even in the last 3-5 years. There were also strategies to try and mitigate the side effects of chemotherapy including nausea. Another glimpse of hope is that Dr. Eule is also a professor at UC Health (Anschutz') associated University of Colorado. 

Dad and daughter
He (professor) said that position of his could open me up to clinical trials, but none that immediately came to mind but also would have to begin with traditional treatment methods. In parallel, a good friend (and cousin) provided an introduction to UCLA's Prostate Cancer clinical trials--I got a similar response in that they'd want me to pursue traditional treatment before clinical trial consideration. 

So this along with yet another researcher here locally that's done some research around mitochondria, Long Covid and cancer I've also been in touch with. Just as I have with my Long Covid, I'm approaching from a standpoint of a realistic understanding of what I have yet not conceding just yet. The most common advise I have got thus far is one's mental attitude means a lot in terms of length of time left and surviving cancer.


I've tried to "ward off" that "witching hour" as I've called it and to grab even the littlest thing I can in a day. With that, my wife and I tuned into the Grammy's this last Sunday night and was emotionally moved to tears by the Luke Combs and Tracy Chapman performance of "Fast Car." I can't explain why I was so emotional other than to see the beauty and grace that is the grand dame, Tracy Chapman; her singing seemed magically perfect.

I copied the link of her performance and sent it to my daughter the next day. She had been "nomading" this last year with her boyfriend while working from Oregon to Canada, Arizona, and Texas before returning home for the holidays. With the future uncertain and the unspoken word of wanting to be "around dad," they signed an 18 month lease to be in Denver. I didn't ask her to do this but like my wife, she's been a beacon of hope and energy of late with the news. Not that my two boys (young men) haven't either but something about the dad and daughter relationship.

After I'd sent her the video clip, I went to read the lyrics for the first time and became emotional again.

See, my old man’s got a problem...
He says his body’s too old for working
His body’s too young to look like his...
I said somebody’s got to take care of him.*

So anyway, thanks if you made to the end of this meandering post, and thank you to those who I may only know from online interaction and most importantly, thanks to Mrs. Seeking Boston, my kids, Aunt Marge, Ruth, and siblings that have been there for me on the latest leg of my toughest marathon yet. 

Footnote: I will start the second oral method of hormone deprivation treatment this week. A month from that (early March) I will start chemo. Shorter updates you can find on my Twitter, or Instagram energy pending.

* I realize that "Fast Car" is based on a drunk, a wife who left a husband, and poverty. At this stage of my life, none of those apply. (smiling emoticon)


Comments

  1. HI Seeking, I have LC not quite 2 years, and hubs has the stage 4 Prostate cancer. He had the surgery to remove it (robotic) because it was positioned on edge and near escape. The only thing I wish we had done differently is change oncologists earlier. HIs first one was too hands off so didnt actually check more often as to spread after the first clean pet scan post surgery. I think that doc basically just waited till the first hormone supression stopped working (climbing PSA-but still no additional scan) but by then my hubs had visited a new oncologist that told him she would have done immune therapy which works earlier when cancer multiplying is still low because it takes longer to work so they need it to be earlier in its spread. She had other options too so he switched to her. Next thing you know he has chest pain and they scan him at ER and he has a spread to the lymph node. Onc moved lickety split to see him and get him started on chemo (docataxel). It worked for about 5 rounds then stopped working. Its weird how these drugs can disappear tumors and then equally weird that they can reappear or go elsewhere. So basically they just keep rolling out treatments as long as you can take it. But the great new thing available is the radiating chemo that has less side effects for most and for a chunk of men very effective. My Hubs starts in a week or so. I learned not all oncologists are at same level of competence. It is a new treatment but out of trials. They do want currently to see that the chemo stopped working first. I think it is to just keep buying time and having things to do next. If you havent heard any Dr Eugene Kwon-he is a Mayo researcher that is featured at the annual conference on latest research. Here is his annual combat manual video starting right off as to why all docs don't offer all the options. https://youtu.be/-RVVq0uDAEE?feature=shared I will message you on X. This is "Spouses" on X.

    ReplyDelete
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    1. X wont let me message you. But you can message me.

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  2. I read every word. Thank you for sharing your story and life.

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