About Marty Merzer

I'm a mostly retired newsman (35 years at The Miami Herald and Associated Press) who lives in Tallahassee, loves his family and friends, and is dealing with advanced prostate cancer.

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.

A Bad Week for Weed, But Its Resolve Remains Strong

Weed before and Weed after

You may recall from this blog Weed, a living entity that – against all odds and under inopportune conditions – established itself quite well at our house and has thrived.

Well, last week, while Weed was minding its own business, enjoying its life and its weedy friends and relatives and the nurturing sun and rain, its mortal enemy – Wacker and Wacker’s evil partner, Landscaper – came by and dealt Weed a most unexpected blow.

Out of nowhere this came. One day, Weed was reaching for the sky. The next, through no fault of its own, it was cut down to size.

But here’s the thing: Did Weed wither, give up, call it a day? No, it did not. It took this setback in stride and rocked on. Shaken and stirred, Weed nevertheless tapped its tenacity and persistence and resolve.

Onward it goes, making adjustments along the way. Onward it goes.

About 10 days ago, we had an oncology consultation and it went quite well, all things considered. They’re satisfied with the numbers, for now, and – as expected – switched me from the frankly painful monthly Firmagon shots to the much-less intrusive four-month Eligard shots that we remember from Prostate Cancer, Scene 1 about three years ago.

The nightly doses of nasty Erleada will continue, which triggered a brief moment of unanticipated hope that quickly disappeared. At one point, I asked the doc, “So, I’ll be on this stuff the rest of my life, right? His response, “No.”

Whoa. You mean we might get to the point where no medication is required? That was the moment of hope. It lasted mere nanoseconds. It turns out he was interpreting the question to apply to Eligard and Erleada, while we meant it to apply to any and all cancer treatments.

“You’ll stay on this until it stops working,” he said. “Then, we’ll move you to something else.”

Oh. Not a real surprise. That’s what we understood in the first place.

On a related note, he said that I’m immunocompromised and should get the third COVID shot as soon as it becomes available (remember, this was 10 days go, just before third shots were authorized for folks like me).

I think I’m a borderline case, but who am I to argue with this guy? I received my third shot of Moderna yesterday at Publix. No questions asked, though there was a form on which, among other things, I had to confirm I had reason to believe my immune system was compromised.

It went well. A bit of injection site discomfort and muscle stiffness this morning, some chills overnight. That’s it.

For the record, it’s no longer an issue of conserving COVID vaccine for those most in need. They have tons of it. Everyone has tons of it. Appointments, walkups, whatever. No problem.

When your time comes – at least 28 days after shot two for those with compromised immune systems, about eight months after shot two for everyone else – do it.

Life is Opportunistic – and Tenacious

The image above is from one side of our house. You may not see any soil in that joint between the concrete and brick (I certainly don’t), but a seed found enough there to plant itself and go about the business of living.

It’s just a weed and I probably should have pulled it a long time ago, but – against all odds – it has established itself and it’s thriving and it’s growing toward the sun that nurtures it. So…I can’t pull it. I just can’t. I may have to trim it at some point before it reaches through a window and strangles us, but…I can’t kill it.

Life is opportunistic and tenacious. Give it the slightest chance and it will appear and survive and thrive.

Which brings me to…this quick update. I know it’s been a while since I’ve posted and that generally means that there’s not much to report – and that’s a good sign. Still, some recent developments:

  • The tell-tale PSA blood test is still telling a welcome story. The latest stick came this past Monday and produced a PSA reading of 1.5 – a 50 percent decrease from late June and way down from the modern, what-the-hell-is-going-on record of 11.6 in April. Good news, there.
  • After a ridiculous five-day, multi-call, multi-email, multi-text struggle, I also managed this week to secure a comprehensive blood test, the first – due to several medical dropped balls – in well over a year. Seemed like a good idea, given the chemicals river-ing through my system every day and an opportunity to review all of this next week with our urological oncology expert. Bottom line: Nothing much to worry about in there. Red and white blood cell counts have diminished, but remain (barely for red blood cells) within normal ranges. The usual elevations in blood sugar, triglycerides and cholesterol, but nothing in the red zone – and these may come back into line as a consequence of…
  • Continuation of a slow but steady loss of weight. I really sort of like this (having battled weight issues most of my life), but we’re going to have to ask about this. I’m down 16 pounds since this crisis emerged about five months ago – and all without trying. The radiation oncologist made note of it a few weeks ago, and we’ll ask about it again next week. One of the chemos is known to have this effect, largely by depressing hunger (which it has done, to some degree), and all the chemos can reduce muscle mass (which we’re battling with steady exercise and I don’t think is the issue at the moment).

So, that’s the latest update, such as it is. Overall, I and we are doing pretty well. We’re back to being more cautious about socializing due to COVID’s rebound in Florida, but we’re pretty tenacious over here, so…ob-la-di, ob-la-da, life goes on.

**

Pro tip: It’s the first Friday of the month, and that means it’s all Frank Sinatra all day long on Siriously Sinatra, XM Channel 71. As I write this, they’re playing his rendition of “This Nearly Was Mine” from “South Pacific,” which is just gorgeous. A few minutes ago, they played his “Moonlight Serenade.” I grabbed Marion and we slow danced around the kitchen. Then, she returned to cleaning the bathrooms and I came in here to write this ridiculously self-absorbed post.