Heart-y Thankfulness

Just a quick update as we head deeper into the holiday season.

Along with the good news from last month’s scan, my PSA (the prostate-cancer blood marker that is the first-line monitoring agent) is now undetectable. Again, to be completely transparent, those results are not going to last forever, but we surely are thankful for them now.

Today’s visit to the cardiologist suggests that all is good in that department. Prostate-cancer patients under treatment need to keep an eye on this. Hormone-deprivation therapies can cause muscles to wither (and many of mine are withering.) The heart is a muscle. Hence…if you have prostate cancer or know someone who does, make sure that the cardiac situation is monitored on a regular basis. Today’s EKG showed no problem and essentially no change from previous EKGs. The cardiologist is pleased, though he scheduled a “strain electrocardiogram” for next month, just to be sure.

The last few suctions of blood work show that I have anemia that is worsening fractionally every month or so, another gift from the therapies. That could partially explain the increasing fatigue and occasional and minor shortness of breath, according to the docs. Now, I’ll be downing iron supplements along with all the other stuff.

And that’s it.

We’re thankful this holiday season to be where we are on this and where we are in life in general and for all of our relatives and friends.

I am particularly thankful for my wife, Marion, who makes sure that the weight and muscle losses and other side effects remain under control and who monitors the prostate-cancer message boards on a regular basis and who keeps us ever grounded and moving onward.

The objective: We have four grandchildren and grandchildren-ish kids in our orbit. All are sketching wondrous life stories. I want and need and plan to see how it all turns out.

P.S. If you are man, get your PSA checked at least once a year, more often if possible. If you are a woman, make sure the men in your life do this.

“Substantial Positive Response”

Just a brief update here – and brevity always suggests good news when one is tracking and reporting on any Stage Four cancer.

Last week, I took an 18-month follow-up full-body radioactive Axumin scan. (At this point, after scores of radiation treatments, scans, X-rays and such, I never again will need a night light.)

Anyway, where was I?

Oh, the Axumin scan. Though the tell-tale PSA blood test continues to suggest good results from the chemo, the Axumin scan is a standard-of-care thing to make certain that nothing bad is happening despite encouraging PSA indicators. Basically, they inject the patient with a radioactive tracer that tends to gather in prostate-cancer cells and then scan the body looking for cancerous lesions.

The Axumin Pet Scan

Eighteen months ago, I lit it up big-time, requiring immediate, powerful and continuing therapies.

This time, we have better news. In the words of the radiologist: “Overall, substantial positive response to therapy. Specifically, the [malignant] lymph nodes in the neck, chest, abdomen and pelvis…are now very small in size and without increased uptake of the radiotracer.”

Translation: The stuff that lit up so many lymph nodes 18 months ago, confirming widespread metastasis of the cancer at that point, now barely lights up anything. There is some indication of slight malignant activity in the bones, according to the report, but nothing to worry about at this point.

So, the oncologist says, “Let’s keep doing what we’re doing.” And that is the official plan.

The side effects are getting suckier and I’m a little beyond the mean of when these meds begin to lose efficacy and will need to be replaced with stronger forms of poison, but so far, we’re beating the averages, and that’s good.

We hope that my fellow prostate-cancer patients – and everyone who is reading this – are doing well and are looking forward to a safe, pleasant and reasonably healthy holiday season.

Onward!

P.S. Guys, make sure to get your PSA blood test at least once a year, more often if you can manage it. Gals, make sure that your guys get that test. It’s virtually always fully covered by medical insurance.

Stable, mostly

After two months, time (actually past time) for another update.

The good news: The tell-tale PSA blood test is remaining stable and low at 0.2. The most recent result arrived today. It hasn’t gone up or down over the course of four tests since April 14. Not going up is a very good thing, for now; not going down…a little less good. I guess that’s why they call it “stage four.”

Ideally, with all the chemo in me over the last 15 months, we’d like to see the PSA reported as “undetectable,” as it was in 2018 during Season One of this long-running medical cliffhanger. Basically, with trace amounts of PSA still floating around, this means that my merry prankster prostate-cancer cells are chilling, just hanging out in my lymphatic system as they work on a way to prosper and grow without testosterone, which is their breakfast, lunch and dinner of choice. When that happens, we leave Season Two and debut a rather more dramatic Season Three.

So, not being greedy, we’ll take this as good news. And, for the most part, life goes on. We just spent a terrific week in St. Augustine Beach with Allie, Sophie, the Petleys and, for one glorious dinner, Neil and Chelsea Garfield. (I turned 75 last week. Grandson Sol was at sleepover Boy Scout camp.)

Returning to things medical, what is undetectable is my testosterone. Reminder: The chemo is intended to block nearly all production of testosterone, as that is the primary fuel for prostate cancer cells. (The PSA test measures apparent activity of the cancer cells.)

Alas, the lack of testosterone produces many, many consequences, none of them good. And the longer that persists, the worse the consequences.

Among them: My leg and arm muscles, and probably other muscles, are slowly melting away. Likewise, my joints and other connective tissue. I’m not falling down or anything like that, but my gait has changed a bit and I’m not as steady on my feet or as steady of hand as I had been.

Marion and I are still walking as much as we can during North Florida’s swampy summer, and I still do as much yard work as I can. But…consequences, and they spin off other consequences.

One of them: I have to get rid of my beloved red Lexus LC500 sports car/convertible. I just can’t get in the damn thing comfortably and move around in it. You should see me try to spirit a Tic-Tac out of the front-door pocket. As you probably know, due to supply-chain issues, this is a great time to sell a used car (and mine is barely used) and a lousy time to buy a new car.

Fortunately, we have a terrific and well-experienced sales associate at a Lexus dealership in Jacksonville. Also a cancer patient, Don conjured and hid from other sales associates an incoming fully loaded NX350 Luxury mid-size SUV, with all of the whiz-bang technical bling that I like. It’s white over black, not my first choice, but one really can’t be too choosy these days. Literally every car is sold before it’s even built. Mine was built on July 8 (my birthday) and should be delivered in about two weeks.

I’m actually looking forward to it. The convertible was swell but it just wasn’t much fun anymore. I guess it’s time to grow up, car-wise, and the new one should be far more appropriate. And the deal…holy bottom line, Batman. Due to a disparity in value, I end up getting a fully loaded new vehicle and a healthy check from the dealership. Hard to beat that.

The old.
The new.

Meanwhile, because I’m an idiot, I’ve taken on another ambitious ghost-writing assignment, despite recent vows not to do so. It does keep my brain and fingers relatively sharp, so that’s good. But it also weighs on my mind a bit, which probably is not good. Overall, though, it’s interesting and challenging, and I think it was a reasonably wise thing to do.

So, that’s the update from Prostate Cancer Central. Steady, low PSA. No testosterone. Out with the fancy sports car. In with the new SUV. Same terrific family and friends.

Oob-la-dee, oob-la-dah. Life goes on.

“Feels good and enjoying life”

Once again, I deferred posting here, pending the new round of lab tests. Now, those tests have been run, and our oncology expert concurs that the malignancies almost certainly remain leashed for now. I and those I love shall continue gratefully to move down life’s highway.

In the wake of our patient-physician visit this past Wednesday, here is Dr. Scott Sellinger’s entire post-visit report, the shortest and sweetest to date:

History of Present Illness:

“He returns for follow­up in the advanced prostate cancer clinic.

Overall, doing exceptionally well. PSA is down to 0.2 in May 2022.

Testosterone is essentially undetectable.

 Tolerating ERLEADA 240 mg  daily quite well for the past year. No bothersome voiding complaints.

 Last 4 month Eligard given on May 4, 2022. He is due for his Prolia at

 the end of this month. Urine today is clear. No bone pain or weight

loss. Feels good and enjoying life.”

That’s all pretty accurate. I do feel good, all things considered, except for intensifying fatigue, loss of stamina and discomfort south of the border. And the weight loss has been stemmed for now, thanks mostly to Marion, who keeps tempting me with meals and morsels that I don’t really hunger for but pose a sort-of mental attraction. Often, this involves slices of Fresh Market’s brownie cheesecake, a photo and description of which I am not going to post because I don’t need you buying it out from under me. 🙂

More about this in another post coming soon, but everyone in a predicament such as mine should have a partner and caregiver like Marion. I am more appreciative and thankful than I can express.

Regarding the enjoyment of life, I will allow these photos from last Sunday’s backyard Mothers Day celebration to speak for themselves:

Granddaughter Sophie, Marion, grandson Solly

And that’s the news, such as it is, from Prostate Cancer Central. We wish all of you a healthy and safe summer.

The stick and…the wait

Today is PSA Day. Again.

And each one sends the Anxiety Clock aflutter until the result arrives.

Tick-tock, tick-tock, tick-tock.

PSA, the tell-tale prostate specific antigen blood test, is an imperfect leading indicator of prostate cancer’s existence, ebb and flow, but it’s the least intrusive (aside from the needle stick). Hence, it’s the best way to track the disease as it does its thing.

For a stage four metastatic patient undergoing various therapies, it’s an absolutely vital tool. A downward PSA trend suggests that the cancer is relatively under control. An upward trend, any upward trend, even a tick upward, rings the alarm bell.

That would mean that the pesky cancer cells have figured out how to thrive despite current therapies and their attendant side effects. In turn, that would mean that new tests, new scans and, most significantly, harsher therapies will be required.

For a four-stager, this is inevitable, but it’s something to be delayed as long as possible.

So, you would think that the patient’s physicians would be careful to check PSA at every opportunity, right?

Like so many men, those with or without prostate cancer, I nearly always have to press my primary-care physician to include a PSA test on a lab order for more routine blood tests. That was the case again yesterday, when I learned that, once again, a PSA test was not included on the order for today’s routine labs.

The guy knows I have stage-four prostate cancer so…what the heck?

My oncology expert, of course, is better about this. But even there, I had to press for more frequent PSA tests. During our last visit, he scheduled me for standard-of-care PSA intervals of four months.

No, I said. The last time we waited four months, all hell broke loose, putting me where I am today – stage four, metastatic, advanced, full involvement of the lymphatic system, long-term prognosis about as poor as it gets.

We settled on every two months, a reasonable compromise. By the way, this is not an insurance issue – I could be wrong, but I do not know of a single case in which any man has been denied reimbursement for a PSA test, regardless of interval.

The takeaway for every man: You must request a PSA blood test at least once a year, more often if you have or suspect prostate cancer. The takeaway for everyone: You have to be your own best medical advocate.

So, whenever another physician orders a blood test of any sort, I demand the addition of a PSA. That’s where we are today, and in a couple of days, we’ll know the results.

Tick-tock, tick-tock, tick-tock.

Good morning. We did it.

From my Facebook page:

Good morning. We did it.

Nearly 100 of you – friends and family all – contributed to this fundraiser or otherwise expressed support. You made a commitment to us. We made a commitment to you. Now, on this severe-weather last day of March and after schedule conflicts, previous severe weather complications and, for me, occasional stamina challenges, here is our report:

– Marty 102.81 miles.

– Marion, always the overachiever, 103.11 miles.

My love, my wife, my greatest supporter and the best person I know.

Once again, we are humbled by your support and we thank you for it. Now, if it’s all the same to you, we’re going back to sleep. 🥱😴🥴

Talking the talk, walking the walk

As many of you may know from a post on my Facebook page, Marion and I have joined the Prostate Cancer Foundation’s “100 Miles in March” challenge. It’s a fundraiser and, equally important, it’s a project to raise awareness of prostate cancer.

In both regards, fundraising and awareness, the Facebook post generated a stunning outpouring of attention and support – one that has humbled and inspired us. If you haven’t seen that post, here is the link:

https://www.facebook.com/donate/320131473365407/10226059414819408/

Marion, I and many others are well on our way toward 100 miles (or more) in March, and we’ll be reporting back throughout the month.

In a related development, that Facebook post attracted the attention of the sponsoring organization. The Prostate Cancer Foundation’s leaders then apparently found their way to this blog, and they asked me to write what they called “an op-ed” for them. Their marching (walking) orders: “How you handled your diagnosis of metastatic PCa – not just in terms of treatment, but emotionally and with your family – and why it is so important to do things like 100 Miles in March.”

I’ve written that piece (which is about twice as long as they requested, not an unusual problem for me). When the foundation posts it, I’ll link to it here and on Facebook.

One other update: This past week featured another PSA (prostate-specific antigen) blood test, a form of disease monitoring I’ve insisted on doing every two months rather than at the more common four-month intervals. The last time we waited four months to keep an eye on this…all hell ensued.

These tests always generate stress and anxiety because one day they will show that current treatments have stopped working and we need to climb the scaffold to more powerful treatments with more difficult side effects.

This time around, I was (privately) more concerned than usual, insofar as some of the side effects and physical discomforts have grown worse. But…

Good news: The PSA number continues to decline, slightly but enough to provide reassurance that, for now, we keep walking that walk, too.

Take care. Have a good week. If you’re a guy, have your PSA tested regularly. If you’re a gal, make sure the guys in your life have their PSA tested regularly.

No News is Good News

And, for the past few months, there has been no real news regarding my…challenge. Which is good news. Just more of the same – the occasional PSA blood test, the occasional shot of ADT (androgen-deprivation therapy chemo), the nightly swallowing of four horse pills of additional ADT chemo.

This past Monday, I saw the prostate-cancer specialist for our regular four-month visit and it went just as I had supposed. The numbers are good, the drugs are working, I seem able to tolerate the side effects, so…we stay the course.

For now.

There was another reference to, as he put it, “the journey” and the bumps that inevitably will come, but as he also said: “For now, we just keep doing what we’re doing.”

Regarding the side effects of the therapies, here are the highlights/lowlights:

  • Fatigue. This is a known issue regarding both chemos, and it is deepening. When required by circumstances, I can push through an entire day without crashing, but a typical day includes two, three or even four naps of varying duration. None of that interferes with normal night-time sleep. Those naps simply are something I need in addition to normal sleep.
  • Appetite/weight loss. A known issue associated with the horse-pill chemo (Erleada). I have very little appetite, and when I do sense some hunger, it is satisfied remarkably quickly. Two bites of a bagel (a bagel!) and that’s all I really feel like, though I force the rest down. Lunch? Nothing. Maybe an apple. Dinner? I never really feel like it, but, to be sociable and not freak out anyone, I try to join Marion and/or friends and consume something. I’ve lost nearly 20 pounds during the last year. I had it to spare and I still have some to spare, but the doctor wisely cautioned against losing much more. “We don’t want you to get scrawny and weak,” he said. I already knew that, and Marion has been elevating her generally low-key efforts to encourage consumption. I’ll keep an eye on it and I won’t let it get out of control.
  • Discomfort. This is a new one and it’s not a recognized side effect, though I’ve discovered that it’s fairly common. How to put this? Drugs have eroded several key geographic features south of the border and what is left has become painful when it/they come into contact with something. It feels like they’ve been kicked. The doctor said this likely is due to “hormonal changes.” It is not listed as a known side effect of either chemo, but when I posted a question about it on a Facebook page for Metastatic Prostate Cancer patients…bing…bing…bing, it lit up with similar accounts from other patients.
  • Hot flashes/tingling. Those hot flashes that are common and that I’ve mentioned in the past have deepened and changed significantly. I rarely feel the heat these days. But I do feel something rather different – a sensation that I can describe only as severe “tingling” from my neck through my chest and upper body. Again, not a recognized side effect, but again one that other patients have confirmed.

Importantly, all of this is tolerable. We continue to find work arounds and we continue to live fairly normal lives. In fact, we just returned from a week in Aruba with our cousins/frequent travel companions Sharon and Barry. We had many hurdles to overcome, but most of them were related to the pandemic, not the prostate cancer.

So, we stay the course.

Guys, get your PSA tested at least once annually, preferably more often.

Onward.

Sorry – I know it’s been awhile, but…

There really hasn’t been much to say.

Every four months, I take the shot of poison. Every night, I take the poison pills. Though I’ve been feeling a little worse, there hasn’t been any real medical news to share.

Until today, and it’s good news. We learned that the tell-tale PSA blood marker is still going down, which is the objective. If you’re keeping score at home:

  • August 20, 2019 (after 15 months of radiation and chemo-like substances) – less than 0.1, undetectable. (This is where it should be for someone in my situation).
  • October 22, 2019 – Less than 0.1, undetectable.
  • March 2020 – less than 0.1, undetectable. Released from treatment, pending frequent reviews.
  • Sept. 15, 2020 – 0.3 Oh.
  • Nov. 5, 2020 – 0.7 Oh-oh.
  • March 11, 2021 – 6.5 What the what???
  • March 16, 2021 (repeat) – 6.4 Damn it.
  • April 15, 2021 – 11.6 Holy crap. What’s going on here? (Turns out the cancer escaped big time, spread throughout the lymphatic system, rendering me stage four metastatic and requiring urgent treatment with a variety of strong chemo-like substances,
  • May 21, 2021 – 4.6 OK, here we go.
  • June 25, 2021 – 2.9 Nice.
  • Aug. 2, 2021 – 1.5 Nicer.
  • Oct. 15, 2021 – 0.7 The latest, taken just yesterday. Now, we’re talking.

So, that’s what the docs call the nadir, the lowest point thus far. It means that the cancer is being suppressed, though it’s still there and lurking – and always will be. Sooner or later, the nadir will become….the nadir as the cancer figures out how to thrive despite the stuff I’m taking. Then, the PSA will start rising again, there will be more scans, and I’ll be moved to stronger meds, with more troublesome side effects.

Right now, the fatigue, hot flashes, swollen and sensitive lymph nodes, muscle and joint aches, and other expected side effects are all growing a little worse each week. These drugs are poison – you can’t take them and not expect to pay a price. Most noticeably, I’m losing weight – nearly 20 pounds since the beginning of the year. I had some to spare, but still…it’s a little worrisome, though probably caused by one of the meds, which is known to suppress appetite.

More importantly, life goes on.

Yesterday, we went with our friends Larry and Joanne to the Greek Food Festival, an annual event here in Tallahassee, that – like so many events – could not be held last year. Last night, we went with Larry, Joanne, Frank, Kate and others to a terrific, first-since-Covid student performance at Florida State University’s School of Theatre (did I mention the my wife, Marion, is on the board of that artistic operation?). Today, we went with our friends Betty and Ken to an FSU exhibition baseball game and…back to the Greek Food Festival. Tomorrow, on tap is a drive to the Gulf Coast to help honor a friend who passed away last year.

Professionally, I just successfully wrapped up the next-to-last contract writing job I’ll ever take. The final contract writing job also is ending, though not pleasantly. No need to get into the somewhat shameful details here, but – at this point – I’m glad to be essentially done with them. I have more consequential things on which to devote energy.

Now, I plan to spend even more time with the family and with friends and with a growing list of good books that need to be read.

Winter, a real thing here in North Florida, is approaching. This is not a problem. Great warmth is being generated day after day, hour after after, moment after moment by family and friends.

I am blessed, and I am in a good place.