When Hope Is All You Have


How does one begin writing about their own impending demise? I guess by putting pen to paper like everyone else. Or these days, put it on a blog. And now I have done so. 

I’ve had this blog name for a couple of years and I even tried starting it once before, but a little too early I came to find out. What do I mean by too early? I wasn’t ready. I wasn’t there yet. I had a pretty bleak diagnosis, and I didn’t fully comprehend it yet.

I was diagnosed in October 2017 with de novo stage 4 metastatic prostate cancer. That’s a lot of words there, and I didn’t even use incurable or terminal, both of which apply.

Ok, “de novo.” I didn’t even know what this was for a good year and a half. I learned the term from some of my breast cancer friends on Twitter who used it in their bio. It essentially means cancer that is metastatic from the start. So I have only known metastatic stage 4 cancer. It’s not a great way to begin.

“Stage 4” typically means at minimum that the cancer has spread to distant locations in your body. It’s bad, generally incurable, and there is no stage 5. My entire skeleton is filled with mets. My spine is completely black on a bone scan, which means it’s jam packed with mets. I call it the metastatic highway. My arms, legs, and pelvis, not wanting to be left out, have a few as well.

“Metastatic” means cancer that has spread. In my case, it’s the same as “stage 4” described above.

“Prostate cancer” should be self-explanatory. My main tumor is in my prostate. It’s a common form of cancer for men. (The second most common, just behind skin cancer.) 95% of the time prostate cancer is curable. I’m in the not so lucky 5%. Mine is not curable because the cancer has spread outside of my prostate. (Metastases.) Treatments just extend my life.

One term I left out. “High volume.” This means exactly what it sounds like. Well, sort of. High volume means there are LOTS of mets. Innumerable. Too many to be counted. It has shaped the course of my treatment and lowered my overall survival. Not all stage 4 cancers are the same. Mine is the worst, though we can definitely say there is no best. There is no good cancer. None. Don’t let anybody fool you with that.

This is my story. It doesn’t mean yours will be anything like mine. I’m going to talk about the good, the bad, and the ugly, so be forewarned. I’m starting this blog now as I feel that I’ve made it through the easy part, and trust me, it’s all relative. I’m on my second-line treatment and I’m fairly certain the third-line is just around the corner.

I used to wonder what “we’re all out of options” meant. Now I know. For the most part, all treatments eventually fail. Or they may not work to begin with. And at some point I’ll make it through all possible treatments and clinical trials. And then I’m done. We’re all out of options.

Many people like to consider stage 4 cancer a “chronic illness.” My take is that as long as meds and treatments are working, then it is a bit like a chronic illness. But once they’re not working, then it’s game over. That’s why I don’t consider stage 4 cancer a chronic illness.

One thing stage 4 cancer requires is hope. Hope is a big thing. It’s what keeps you going. It’s what keeps you looking for the next clinical trial. It’s what makes life something you’re grateful for. It’s what I call, “When Hope is All You Have.” And it is.


Cancer Update: The Plan

I know last week’s update was rather bleak and downbeat and based more on what I was going through pain wise at the time. Today I just want to let you all know the big picture.

I have a multi step plan from my oncologist. I agree with it all. There are two main items. Treat pain and return to systemic treatment since cancer is growing.

1) We discovered from my bone scans that I’d broken part of my pelvis. I must have stressed the area after I had x-rays in January. (When I originally fell.) So the pain I’ve been experiencing isn’t bone pain from metastasis. It’s because I fractured part of my pelvis.

So first I will see a orthopedic oncologist to get an idea of what can be done as far as palliative care for my current situation. Surgery and radiation being possibilities. I have new spots with lesions. Generally they don’t hurt, but sometimes they do. I’m doing ok pain wise but we need to change the way it’s being treated since we didn’t know we were dealing with a broken bone.

And we need to see if I can get on a bone strengthening medicine since I’m obviously prone to fall and breaking bones. Again, bones are weakened considerably due to cancer and hormone treatment which I can’t go off of.

The problem is that the bone strengthening meds can cause ONJ (Osteonecrosis of the Jaw). This we don’t want (Google it). Basically it means your jaw bone dies. I need dental work which is both expensive and will take several months. I put dental work (other than cleaning) in the too expensive, don’t do bin. So we’re going to see if it’s possible to bypass the dental issues. I might get ONJ. But I definitely have weak bones and I’ve already broken one.

2) My scans from last week show that existing lesions have grown in size and number. So I need treatment. It looks like we’re going with a platinum-based chemo therapy in addition to the one I have left. This is kind of calling the big dogs. Platinum-based chemotherapy can be quite effective but is also more toxic than “standard” chemotherapy.

I will likely start treatment soon with cabazitaxel (the chemo I can repeat) and Carboplatin (the platinum-based chemotherapy).

This is it. This will not cure me. It’ll just give me a little more disease progression free time. A little more life. Don’t be strangers.

Cancer Update – 2021-02-02

I had a good oncology appointment yesterday. All my lab results were very good, other than ALP (Alkaline Phosphatase), which was only slightly elevated and nowhere near what it was when I was first diagnosed. In my case it meant there was likely metastasis in my bones. And that there was. See image of bone scan I’ve provided. (Black is cancer. There is a LOT of black)

My PSA is 83.70, which is technically very elevated, but my current treatment is not systemic, so no big surprise there. The velocity has slowed down, which is a good thing, as for a while my PSA was doubling every month.

After I’m done with radium-223 (current treatment) in April I’m going to be in a new phase of this whole thing. I will not have any other new treatments available to me. I can redo one of the chemos I’ve done before. I can also take a clinical trial. So we’re going to look at all open clinical trials I qualify for, anywhere in the country, and we’ll see if any of the trials is a better choice than the chemo or not.

So at the moment I don’t know what treatment I’ll be doing, but at the very least I can repeat a chemo that worked for me in a previous trial. I’ll do that chemo until it quits working or my body can no longer handle it.

So really what it’s coming down to is clinical trials and prayers. It’s so very strange because I feel pretty well now, but I could be out of treatments/trials as soon as next year. No more treatments means what you think it does. Treatments keep me alive. And all we have ever been able to do is prolong my life as long as possible, but unfortunately not as long as we’d like. Welcome to stage 4.

Fingers crossed people, and all the prayers you can muster. Good juju and vibes also acceptable.

I really, really appreciate the support. So many people have helped me in so many ways and it just blows my mind. I can’t thank you all enough.

The Ghosts of July

Watching my mother mourn my father’s death was the hardest thing I’ve ever had to endure. I was 15, my sister nearly 10. Sometimes I think my sister is lucky because she doesn’t really remember any of it. My father’s death shaped my entire life, but for her, he was simply someone she never knew. Perhaps I was the lucky one after all.

My father was 44 when he died of a brain tumor. After his death my biggest concern was living longer than he had. I became obsessed with it to the point that my birthdays had no meaning, even the “big” ones — 16, 21, 30, 40. None of those milestones mattered. Only 45. But the day I turned 45 I felt no different than I had the day before. I was still haunted by the memory of my mother’s sorrow. The vision of her breaking down, crying, and overwhelmed with grief, falling into the arms of a neighbor, was just as vivid in vision as the day it had happened 30 years earlier.

My mother remarried a few years later and settled back down into a life of normalcy. She went back to school, got her Master’s Degree, and started teaching second grade in a nearby elementary school. She taught there until her retirement. I always thought her students must have been the luckiest kids in the world. My mother was an amazing woman. Love and compassion flowed through her veins. She was more than a teacher. She enriched the lives of her students. She cared for each and every one of them like they were her own children.

My sister and I were both at my mother’s bedside when she died. She succumbed to a particularly aggressive form of cancer that started in her appendix. Dying from cancer that began in an essentially useless organ seemed to me as some kind of cosmic joke. But it wasn’t funny at all. And then there was the day she was declared “cancer free,” only for it to come back three months later and finish its job. Cancer is wickedly clever like that. You’re here today and gone tomorrow. Literally.

My mother didn’t want to die in a hospital room, so she came home to hospice when nothing more could be done. My sister flew in from Philadelphia and I drove in from Kansas City. I was only an hour away, so I just drove in every morning to be with my mother and went home each night to be with my family.

I’ve always found solace in driving back to my home town. For the most part it was a beautiful drive through rural Missouri — the place where I had grown up, where life had been simple and innocent and pure, a place I had never forgotten. Any other summer I would have looked forward to the cold comfort of my mother’s iced tea, the flicker of fireflies in the yard, and the cadence of cicadas in the trees. Now they were simply ghosts of July.

Hospice didn’t last very long, but then again, I suppose it’s not supposed to. My mother quickly fell into a coma and died a few days later. I would talk to her as she lay comatose, telling her l loved her every chance I got. I rarely told her that when she was alive, but mostly because it’s just one of those things I was never very good at. I often swore to myself that the next time I would try harder. There’s always tomorrow, I’d say. Well, there is, I learned, until there isn’t.


Scanxiety is a real thing. It’s the anxiety a cancer patient feels right before having scans and then while waiting for the results. We often say that we live from scan to scan. The good ones anyway.

I found that since my diagnosis was bad—my numbers were so incredibly elevated (bad) and my cancer was of such high volume (also bad)—that for the first nine months there was nowhere else to go but down. That is every lab showed massively improved numbers while my scans stayed stable. I’d heard of scanxiety but I wasn’t experiencing it. Every visit brought good news so I actually looked forward to them.

Let me tell you how that first nine months went. As you know (if you read my first post), I was diagnosed with de novo stage 4 metastatic prostate cancer. High volume meant I would start out of the gate with chemo.

First there was my PSA (Prostate-Specific Antigen). I’m going to oversimplify this a bit for clarity, but in general, anything more than a 4.0 is considered elevated. Mine was 5,306–a number I’ll never forget. That’s above and beyond elevated.

Then my Alkaline phosphatase (ALP or ALK P) was over 500 (normal range can vary, 44-147 is typical), also incredibly elevated. Not specifically related to my prostate, but an indicator that there was activity in my bones or liver. My scans would show it was metastases in my bones. Innumerable mets (metastases) in my spine and ribs primarily, plus mets scattered throughout both humerus bones, both femur bones, and my pelvis.

From November 2017 to February 2018 I had chemotherapy (docetaxel) every three weeks and a Lupron shot for life every three months. This treatment is known as ADT or androgen deprivation therapy, which is often called hormone therapy. Unfortunately the Lupron quit working and around July 2018 I experienced my PSA going back up for the first time. After nine months of great results with my PSA going from 5,306 down to 22, I just got spoiled with good news. My scans stayed stable throughout that time period as well, so my scans were good. Yeah, my mets shrinking or melting away would have been great, but this is incurable cancer and stable is good.

Despite having castrate level of testosterone (thanks to the Lupron), my PSA was going up. This is known as castrate resistant prostate cancer. So it was time for a second line treatment and I went on a clinical trial. So from November 2018 to February 2019 I took another chemo (cabazitaxel/Jevtana) along with an oral med called abiraterone acetate (Zytiga) that I will take until it quits working based on bone scans. This brought my PSA way down and very rapidly to boot. My PSA was under 1.0 after just a few treatments. Not long after my PSA was around 0.1.

But now scans meant a whole new important thing now. My PSA could go up but as long as scans remained stable, I was considered good according to the trial.

I can now say my scans come with a big dose of scanxiety. I get scans every 12 weeks and I get labs every six weeks. And as I’ve been on abiraterone a little bit longer than average time these meds typically work, each scan comes with a little more scanxiety each session. Worrying doesn’t help things at all, but it’s something that’s difficult not to worry about. My last labs in June showed a rise in both my PSA and my ALP, but we won’t know if it’s cause for concern or not until I have scans later this month.

I can’t wait to get my scans and see what’s going on, if anything. But I won’t lie. There will be a great deal of scanxiety next time around.