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.
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.
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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.
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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.
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.
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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.
We saw our radiation oncologist today – and the news is mostly good. The work in progress is…progressing nicely.
For clarity, radiation oncologist Dr. Philip Sharp – my head coach during the 2018 prostate-cancer season – is basically watching from the stadium sky box during this 2021 season. There’s nothing that radiation can do for me at this point. But he is such a comforting, knowledgeable presence that we look forward (?!) to our visits every three or six months.
A more specific update will come in about a month from Dr. Scott Sellinger, our prostate cancer oncology expert, but what Dr. Sharp shared or confirmed today is that:
The treatments are working, though at a cost. The tell-tale PSA blood factor is slowly diminishing, down to 2.9 last month from a modern, post-2018-season high of 11.6, when it was doubling monthly, signaling excessively swift metastases. This PSA decline is a strong leading indicator that the cancer cells are weakening or even dying due to the meds that deny them the nutrition of testosterone.
Further substantiation of this positive trend: Two lymph nodes that were within easy reach, on either side of my neck, were swollen (probably with cancer cells) and were extremely tender three months ago. Today, Dr. Sharp pressed and pressed and…nothing. I felt nothing and he felt nothing. This, also, is a strong indicator regarding the happily diminished state of the extensive lymph node involvement that was evident three months ago.
But…the cost. We’ve already discussed the side effects, which are worsening, especially the fatigue. But now, a new one has been developing: weight loss. One of the meds, Firmagon, is known to ladle on new weight; another, the hyper-expensive Erleada, has been associated with minor weight loss, largely due to appetite issues. That second one appears to be winning.
We’ve noticed for awhile that my appetite has largely disappeared, and when it happens to return, it’s satisfied much more swiftly than in the past. The scales tell the story: At Dr. Sharp’s regular weigh-in, I’ve lost 10 pounds since April 18. On our home scale, I’ve lost 13 pounds since January 1. All of this without trying.
The main culprit almost certainly is that second med, Erleada. But both Firmagon and Erleada also can cause significant loss of muscle mass. I haven’t really noticed that (and my face and neck appear slimmer these days due to apparent fat loss – or something). But we’re going to redouble our exercise regimen around here – more long walks (we’re already doing 2-4 hilly miles three or four times a week), and I’ll try to add some training with weights.
Just my luck. For most of my life, I’ve battled weight gain. Now, I’m losing weight, though for the wrong reason. Still, I’ll take some pleasure from that, but only to a point. We’ll keep an eye on it and not let it get out of control.
So, overall a good report today, and some tailwind heading into next month’s consultation with Dr. Sellinger.
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Separately, we recently received the results of that sophisticated genetic blood test (list price, including analysis – $5,940, all covered by insurance). Described on my medical and insurance documents, because my situation isn’t already sufficiently mortifying, as “breast cancer blood test,” that’s mostly what it is.
It searches for mutations in the BRCA genes, mutations that are associated with a statistically terrifying increase in a woman’s chance of developing breast cancer. Less widely known is that BRCA mutations also are associated with a man’s chance of developing metastatic prostate cancer, which is what I have, and also of developing a rare form of breast cancer. A good summary can be found at this link: https://www.cancercenter.com/cancer-types/breast-cancer/risk-factors/brca1-and-brca=
Now. the good news: My genetic test came back as negative. I don’t have the mutation. That means that daughter Allie and grandchildren Sol, nearly 13, and Sophie, nearly 9, almost certainly don’t have it, either.
If the test had come back as positive – that I do have the BRCA mutation – that would have allowed the doctors to more carefully tailor my treatments. Think rifle shots instead of shotgun blasts. But I don’t care. I’m glad it came back negative – that’s better for the kids and for all descendants down the line.
How does one deal with this on a daily, hourly, minute by minute basis? In my case, I don’t. Or at least I try not to. By this I mean, I do not engage in a countdown of sorts. “Well, that’s another hour gone, another day gone. One hour, one day closer to….” That’s not what I do – at least not to any greater degree than I might have, or that anyone might have, before the diagnosis came in. Everyone has a finite stretch of time. How dumb it would be to squander any significant amount of that time by worrying about the countdown clock.
Sure, it’s on my mind – on our minds – from time to time, but not in a dominant way. We see the physicians. I take the meds. I roll with the side effects. We move on. Many mornings, it’s not until I finish washing up that I remember, “Oh, yeah. That.” But, not to be cavalier about it, we do move through what passes, rightly or wrongly, for our sort-of-normal lives. We hang out, we take long(ish) walks, we share meals, we help take care of the grandkids, we spend time with our friends. We even just finished our first post-COVID-outbreak vacation trip – a quick up and back to New Hampshire to spend a few days with cousins Barry and Sharon in their lakeside summer home, rebooting a pre-COVID annual tradition. It was terrific.
This is not to say that it’s all super-duper. Several times during our stay there, I fell asleep in their family room smack in the middle of conversations. They were swell about it, but still. Not ideal. I now call these “brown outs.” The chemo kicks in, the power goes out and the only way to hit the reset button is through a nap. Happens one to three times a day. Also, every now and then, during the week after the monthly chemo belly-shot, Marion catches me with a grimace on my face and says, “It hurts?” I say, “Yeah, but it’s getting better.” And it is.
I do not feel sorry for myself. I really don’t. Stuff happens, especially as one ages. But, to be perfectly honest, I am a little pissed off. For one thing, my body is betraying me. Bad stuff is going on in there and it stayed under cover and it’s a stubborn thing and…it pisses me off. Also, we navigated ourselves and our family through the COVID crisis and we got our vaccinations and we were just coming out of quarantine and we were just resuming a semblance of normal life and then…wham. This. And that pisses me off, too. Ah, OK. That’s off my chest. Well, actually it’s in my chest…eh…never mind.
What I am a little worried about: This is the best I’m going to feel for the rest of my life. And it’s perfectly fine. It could be a lot worse. But it’s not going to get significantly better. My oldest friend – we’ve known each other since birth – asked just yesterday, “Do you have any good news? Are you getting better?” Well, that’s not the kind of situation we’re in here. In response to the chemo, the PSA blood marker is slowly diminishing, which probably means that the lesions are growing/spreading more slowly and some may even be shrinking, but “good news” and “getting better” are more relative terms than they’ve ever been before. Other, stronger regimens with other, more difficult side effects are going to be required at some point down the road. So, while I really do appreciate where I’m at now, I am concerned about where I’ll be in a year or three. Nothing can be done about it, other than front-loading now all the stuff I’d like to do.
Which brings me to: Wisely or not, before we hit this bump in the road, I took on three (3!!!) writing projects. Though the cancer’s recurrence has created impediments, I’m determined to see them through. One is for a friend who is attempting – re-attempting – to substantiate through a demanding written document his well-earned claim to the pinnacle of his profession. That project is not yet very far along, but it will have low impact on my energy and schedule. The other two are manuscripts for clients who want to share their life stories. One of those is virtually done. The other, more ambitious project, is approaching its final stages, which is a good thing. They’re all going to get the full Merz, but it’s becoming increasingly difficult to work around the brown outs and other side effects. I need to retire pretty soon, for real this time.
Outwardly, there is no obvious change in me. People say, “Hey, you look good.” That’s kind, and I understand the thought behind it, but the truth is that most cancer patients, even four-stagers, don’t show any obvious signs of it until the end stage, when they might grow emaciated. Thankfully, we’re nowhere near that now. Someone on a prostate-cancer message board posted that he sometimes feels a little guilty about the lack of exterior signs of his condition. He wrote: “It’s almost like, ‘Are you sure you have cancer, because you don’t look like it.'” I know where he’s coming from, but you can’t blame or judge people for what they say. Each person deals with this situation as best they can – and each person deals with it differently.
So, I think that’s it for now. Though I’m pretty sure I’ll think of something else as soon as I hit the “Publish” button. 🙂
So, it’s been awhile, but that’s because the situation has been pretty stable, which is good, all things considered.
That said, I just returned from receiving another delightful dose of Firmagon, thick, cloudy…stuff…that’s injected into the belly. The nurse also agreed to draw blood for unscheduled PSA and testosterone tests. We found out the hard way that waiting the typical three or six months for such tests is not a good idea in my case.
Meanwhile, news arrived today of another promising therapy for advanced metastatic prostate cancer. The trial was conducted on men with castration-resistant prostate cancer. As you might recall, this means the cancer has stopped responding to treatments like the one I received today.
You’ll note in the text below that this innovative therapy bought a median of four months of additional survival. Until recently, as an investor in biotech companies, I shrugged at something like that. Four months. Big deal.
But, obviously, I’m in a different situation now. And someone on a prostate cancer message board wisely noted that four additional months of life – or three or two or even one – could allow someone to make it to a wedding, an anniversary, a child’s or grandchild’s birthday or graduation, any such treasured event that he otherwise would miss.
Here’s the story from the New York Times (thanks to retired Miami Herald publisher, nationally recognized childrens advocate and valued friend Dave Lawrence for making sure that I didn’t miss it):
Therapy for Aggressive Prostate Cancer Improves Survival
The experimental treatment relies on radioactive molecules that seek out tumor cells, a strategy that may be useful against other cancers.
By Roni Caryn Rabin
An experimental therapy has prolonged life in men with aggressive prostate cancer that has resisted other treatments, offering new hope to patients with advanced illness and opening the door to a promising new form of cancer therapy.
Among men who received the new therapy, there was a nearly 40 percent reduction in deaths over the course of the clinical trial, compared with similar patients who received only standard treatment, researchers reported on Wednesday.
Prostate cancer is the second-leading cause of cancer death among American men, after lung cancer; an estimated 34,130 men will die of prostate cancer this year. One in eight men will be diagnosed with the disease at some point in their lives. The risk increases with age, and the cancer is more common in Black men.
The new treatment relies on a radioactive molecule to target a protein found on the surface of prostate cancer cells. The study, which followed 831 patients with advanced disease in 10 countries for a median period of 20 months, was published in The New England Journal of Medicine.
“This is something new — you’re driving radiation right to the cancer itself,” said Karen Knudsen, president and chief executive of the American Cancer Society. “It’s a much more sophisticated strategy for targeting the tumor.”
“You’re not just destroying the cancer cells — you’re smart-bombing the place that the tumor has found for itself to live.”
There is no definitive cure for metastatic prostate cancer, and there is an urgent need for new therapies, Dr. Knudsen said. Most life-extending treatments rely on suppressing or blocking androgens, the male hormones that fuel prostate cancer.
“This opens the door to precision radiotherapy targeted at other molecules that are on the surface of other cancer cells,” said Dr. Philip Kantoff, chairman of medicine at Memorial Sloan Kettering Cancer Center in New York.
The investigational treatment, called lutetium-177-PSMA-617, combines a compound that targets a protein on the surface of prostate cancer cells, called prostate-specific membrane antigen, or P.S.M.A., with a radioactive particle that attacks the cells.
The P.S.M.A. protein, which can be detected by imaging scans, is almost exclusively on prostate cancer cells, and so the treatment causes less damage to surrounding tissue, said Dr. Oliver Sartor, the trial’s co-principal investigator and medical director of Tulane Cancer Center in New Orleans.
Though the protein is not ubiquitous in prostate tumors, it is found in more than 80 percent of cases. Among patients screened for the trial, 87 percent were P.S.M.A.-positive. Only those men who were positive for the marker were included in the trial.
The study enrolled men with a form of metastatic prostate cancer called castration-resistant prostate cancer. All the patients had disease that progressed despite treatments with chemotherapy and hormonal therapy to suppress and block androgens.
Participants were randomly assigned to receive the experimental treatment, given every six weeks in up to six doses along with standard treatment, or to continue standard care alone, but without chemotherapy or other isotopes.
After a median follow-up period of 20.9 months, patients given the experimental treatment survived for a median of 15.3 months, compared with 11.3 months for those who received only standard care, a reduction of 38 percent.
Their tumors were more likely to shrink, their prostate-specific antigen levels were more likely to fall, and the risk of their cancer progressing was reduced by 60 percent.
Side effects — most commonly fatigue, dry mouth and nausea — were more prevalent among those receiving the compound than among those who did not, but did not appear to significantly affect quality of life, the researchers said.
The study had some limitations. It was a randomized trial, but because of the difficulties of running a double-blinded trial with a radioactive treatment, the trial was open-label: Both patients and physicians knew whether or not they were getting the treatment. That caused some problems early on, as patients who were disappointed by their assignment withdrew from the trial.
The investigational drug worked where other approaches had failed, Dr. Sartor emphasized. “These patients had received essentially all the available therapies,” he said. “This is the first drug targeted to the tumor that actually results in overall survival benefit among incredibly, heavily pretreated patients.”
Dr. Sartor was a co-principal investigator of the trial, along with Dr. Bernd Krause, of Rostock University Medical Center in Germany. The trial was sponsored by Endocyte Inc. and Advanced Accelerator Applications, which are Novartis companies; Dr. Sartor is a paid consultant to the company. The data were analyzed by the sponsor and provided confidentially to the authors.
Officials with Novartis said the company will apply to the Food and Drug Administration for approval of the new treatment later this year.
Last year, with some time on my quarantined hands, I wrote and posted on Facebook the following story for Memorial Day. I’m not going to repost it every year, but it feels right to do so this year. Yesterday, at my request, grandson Sol, nearly 13, named for my dad, read this from top to bottom. “Great story,” he said. Family history, passed to a new generation on Memorial Day weekend. (This probably won’t look right on a cell phone. Best to click the headline and try it on a desktop or a tablet.)
“Just hang in there. New things are being developed all the time.”
Every cancer patient hears that – and properly so. It’s true. And here’s an example that came through today:
A new, far-more-sensitive tool to scan a man’s body for prostate cancer that has escaped the borders built around it, crossed into new territory and is thriving on foreign lands. This development is important because these metastases historically have been difficult to pinpoint, requiring carpet bombing by chemo rather than sniper attacks by radiation or surgery.
For years, prostate-cancer patients and their doctors have had to wait until the lesions were large enough to be detected by then-current scanning technology. By then, it was too late or nearly too late.
As of yesterday, there were two new, more-sensitive scanning regiments. Now, there are three – and No. 3 should help me.
No. 1: The Axumin PET scan. This is the radioactive-tracer scan that I had in April after that sudden explosion in my PSA blood-test results. This scan, far more sensitive than was available just a few years ago, found cancer in my lymph nodes from the neck through the chest and abdomen and down to the pelvic region. It was too late for sniper attacks, but carpet bombing began immediately. Even that might not have happened before Axumin scans were available.
No. 2: Ga-PSMA-11 PET scan. Also a radioactive-tracer scan, it was approved by the FDA this past December and is far more sensitive – i.e., able to detect even smaller malignancies. This is great. You want to detect these things as soon as possible. The problem is that this technology requires special equipment available in just a handful of sites around the country.
No. 3: F-DCFPyL PET scan. Approved today by the FDA, this is equally as sensitive as Ga-PSMA-11. The big advantage: This radioactive tracer can be sent to any facility that performs PET scans, presumably including my excellent local facility here in Tallahassee (Radiology Associates).
I plan to ask about this the next time we’re in touch with our specialists here, as it would be…convenient…to know asapest if/when the enemy sets up camps in my bones or organs.
Our good friend Mark Ivester first alerted me to this development, which he learned about this morning on the TODAY program. He has our thanks for that. Here is a link to that report. The video is brief and I highly recommend it, as it places in excellent perspective prostate cancer and the challenges of dealing with it:
In other developments, carpet bombing continues on this end in response to the lymph-node assault. A blast of Firmagon in the belly and a blast of Prolia in the arm came via injections last week, and the four mega-pills of other poison – Erleada – go down every night, without a spoonful of sugar (unless Marion is looking elsewhere). 🙂
Once again, kudos to the folks at AllianceRX (the speciality pharmacy outfit) and The Assistance Fund (the financial-assistance foundation). The Erleada runs out tonight. The next ammunition belt of bullets already is on the way, with early-morning delivery set for tomorrow. Out of pocket cost: $0.
Today brings two pieces of good news, one provisional, the other of great relief, both truly welcome.
No. 1: That premature PSA blood test that I forced earlier this week came back this morning just where we were hoping. The rapid ascent has been reversed, and the PSA blood marker is heading down. As a reminder, PSA – prostate specific antigen – can be a leading indicator of prostate cancer and/or a way to track its progress or decline.
My PSA went (after two years of drug therapy and radiation) from undetectable a year ago to 0.3 in September, 0.7 in November and – boom! – 6.5 in March and – double boom! holy bagel what is going on here? – 11.6 in April.
Now, ta-dah: The PSA came in at 4.6, and hopefully will continue heading down.
This shows that the triple-barreled chemo blasts are working to suppress the cancer’s growth and/or spread. More to the point, it demonstrates that my disagreeable cells remain responsive to these treatments.
In oncological terms, my cancer is classified as mHSPC – metastatic hormone sensitive prostate cancer. That doesn’t sound good, but it is, in relative terms. Translated, it means that the withholding through chemo of the cells’ nutritional hormone – testosterone – can make these cells suffer, which they so obviously deserve. If you’re dealing with metastatic prostate cancer, you want to stay mHSPC for as long as possible.
Because, over time, these pranksters tend to figure out how to survive and thrive without testosterone. Then, the patient is classified as mHRPC – metastatic hormone resistant prostate cancer, also known as metastatic castrate resistant prostate cancer. Now, you’re in deeper trouble, and more powerful therapies are required to keep the monster at bay.
So, we’re moving in the right direction for now and we shall stay the course, for as long as possible. It’s welcome good news.
No. 2: Even more-better good news came yesterday from that close, dear friend I mentioned about 10 days ago. His PSA had been rising quickly and suspiciously, and he had no sensible option other than to submit to an MRI-guided saturation biopsy.
That’s the procedure that employs a scan to highlight suspicious regions of the prostate, followed by an extensive biopsy of the organ. The wait for the pathology report can be nerve-racking, but he and his wife finally visited the urologist and heard the verdict:
It’s not cancer. It’s a serious infection of that prostate that can and will be resolved through a sustained course of antibiotics.
“To tell you the truth,” the urologist told them, “when I was performing the biopsy, I was sure I was looking at cancer. I’m glad it’s not. And this is why we never guess about these things.”
And this is why men need to have their PSA checked often, and they need to follow the advice of physicians who earn their trust.
The two questions I often hear are natural and proper and closely linked: “How are you feeling?” “Any side effects yet?”
The truth is, I feel pretty well. As I’ve told a few people, “Damn thing is trying to kill me, but I feel fine.” That is an overstatement, a simplification, but it’s close enough. Put another way, it could be a lot worse.
As you read the rest of this, please keep in mind that the way we live our lives has not substantially changed due to this. And with COVID-related issues beginning to recede, we’re actually returning more to normal. We’re spending increasing amounts of time with the kids and with our friends, we just booked our pre-COVID annual trip to visit cousins Barry and Sharon in New Hampshire, etc.
A more accurate, more complete, assessment of how I feel links closely to the second question, the one regarding side effects.
It’s difficult (and largely futile) to categorize the sources of physical, mental and emotional changes. Is this one coming from the cancer? That one from this treatment or the other treatment or…the other treatment? And how much of this is attributed primarily to advancing age?
In any event, the effects thus far, in degree of difficulty:
Fatigue. That term “fatigue” often is used synonymously with “tired” or “sleepy.” But cancer patients – and patients of many other diseases – know that true fatigue is something else entirely. It’s a full-stop kind of thing. Your leg muscles feel wobbly, your belly somehow chilly or empty or something, your shoulders achy, your mind foggy. You don’t just want to take a nap. You must. In my case, it usually arrives in late morning and/or mid afternoon – even after a decent night’s sleep. Not every day, though. Sometimes, I can push right through with barely a hint of it, but when it’s there, it’s there. Most of this likely is attributed to the various forms of chemo (I’m just going to call the meds “chemo,” because to laymen, that’s what they are), which warn of severe fatigue. Some of the fatigue likely is from the cancer itself, which triggers the body to fight back hard. And some simply from age.
More about cancer-related fatigue can be found here:
Lack of stamina. A close cousin of the fatigue, this one appears mostly during or after exercise. Until not long ago, I ran three miles or more around our hilly neighborhood virtually every morning. Now, a medium-paced walk can be taxing. But it’s also mandatory to keep muscles from atrophying and bones from weakening due to the chemo. So, we push through that, too. Both this and the fatigue often require pre-planning or workarounds – “I’ll do this and that, and then I better plan to rest before I try to do these other things.” (I kinda hate this. Ask anyone I ever worked or played with – hard work, long hours and other expressions of uber-stamina were key characteristics.)
Weight gain/weight loss. As I mentioned in a previous post, one of my meds produces weight gain; another weight loss. At the moment, I’m holding steady, with a possible slight nudge toward weight loss, which is not unwelcome. To a point.
Brain fog. Another close cousin of the fatigue, this is a generic term used by people on chemo, and it’s quite real. Forgetfulness, inability to find a word, that sort of thing – and in a different, more random, deeper way than advancing age itself would cause. The other night, I was standing in the kitchen, trying to tell Marion something, looking at the kitchen counter and utterly unable to recall the word “counter.” I mean, I’m looking at the damn thing. The best I could do was “the whatchamacallit right here.” This doesn’t happen often, so far, but it’s scary. I’m a writer. Words are my tools. I need my tools. Among other things, I’m trying to finish three contract writing projects. I will, but I’m doing everything I can to accelerate that process.
Another word I just had trouble remembering and had to look up: libido. Probably nothing harder (pardon the expression) for a man to admit, but I have none. It’s the first thing to go when a guy gets on androgen (hormone) deprivation therapy (ADT). Absolutely universal, if rarely shared with the outside world, for prostate-cancer patients on this common therapy. The objective of ADT is to force the body to stop making the male hormone testosterone, the primary fuel of prostate-cancer cells. The therapy works, for awhile and to an extent still to be determined in my case (more coming down the road about that), but no testosterone means no libido – and it causes the previously mentioned weakened muscles, and occasional hot flashes and other delights. It’s a strange sensation – I can appreciate the beauty of my wife and of other women, but that sensation never travels below my brain. This is the “side effect” that often produces the deepest emotional toll on prostate-cancer patients, especially those considerably younger than I am.
Mental/emotional changes. I don’t think I’ve experienced much of this. I tend to be evenly balanced. I don’t cry when normal people cry (though sometimes I catch up when another stimulus hits me). Present me with a problem, I start working on solutions. However, I have noticed that, very rarely, I’ve reacted sharper and more reflexively to a verbal stimulus than I previously might have, though truly not often. I try not to dwell emotionally on this battle. My outlet is brief, substantive chats with Marion or close friends – and, of course, this blog.
I’ve lost it – or my version of lost it – just once so far: When I received the email from my urologist summarizing the findings of the scan – that the cancer somehow had spread throughout the lymphatic system – and walked in to tell Marion just before we headed to the oncologist to hear the full assessment. My voice cracked and I teared up and it wasn’t because of what it meant for me – it was because I felt guilty that I was bringing this on her and Allie and the kids and the rest of the family and our friends. Don’t bother – I know that such guilt was and is misplaced. I didn’t cause this to happen. But the whole point of this blog is to be brutally honest about what’s going on here, and that is what I felt at the time, and to some extent, still do. And I know from reading the message boards that I am not alone in this.
So, that’s pretty much it for now, though other effects – side and otherwise – are likely to come along.
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Coming tomorrow: Another double-blast of injected chemo, a genetic blood test, and, if I’m successfully persuasive, an out-of-sequence bonus PSA test to determine if these treatments – including the four chemo pills I take every night – are beginning to work. Will advise.
And Miles to Go Before I Sleep 