More Pain, No Gain

The night of all the chaos described in the previous post, I did not sleep very well. I've been taking a THC gummy in the evenings to help me relax and fall asleep, especially since March 1. I did that as usual, but it never really felt like it kicked in. I had a hard time falling asleep because I couldn't relax, but also because I was incredibly uncomfortable. The cancer that has spread to my hips and lower back causes me pain, and it's that kind of deep sore pain that one might experience with sciatica problems. All I did that night was roll around from one position to the other, from one side to the other, comfortable for a minute or two after the shift and then in pain all over again. It was miserable, even with more ibuprofen than I should probably be taking right now. 

I got up once or twice during the night to use the bathroom, but that just made things hurt more when I got back into bed. I probably got some sleep, but 45 minutes here or an hour there. By the time I woke up in the morning, I was dead tired and still in pain. 

Lying in bed, I picked up my phone to see that someone from my PCP doctor's office had called to respond to a message/question I sent them on the "Health Portal" the night before. Instead of just telling me what the message was, they instructed me to look at their reply in the Portal. The only way for me to access that is on my laptop which was downstairs. I called my wife to ask her to look at the reply, but she was in town getting prescriptions and groceries. I got myself out of bed and went downstairs to check the Portal but I was pretty darned sore and achy. (More usual than not right now.) By the time I made it back upstairs to take a shower, I could barely stand. I brushed my teeth, but then sat there, uncomfortable as anything, and texted my wife to see when she might be home. As I was doing this, I heard her moving around downstairs. 

She came up, saw how uncomfortable I was, insisted I take three acetaminophen and get back in bed. I did. I felt miserable. There was no position I could get in where I felt comfortable. I never fell back asleep but at least being horizontal felt like less hard work than being vertical. This is what it's come to. Moving around and doing even the slightest bit of exertion just wipes me out. 

My wife, who is truly my hero these days, went back downstairs, contacted my doctor, and the two of them arranged for some prescription pain killers and a shot of something they typically give to patients with osteoporosis. She picked up the pain killer today and we go in for the shot tomorrow (Saturday). I truly hope it gives me some relief, at least at night. 

I described my "good days" and my "bad days" a few posts ago. Things have progressed to the point where my "good days" are a lot like those earlier "bad days" and my new "bad days" have broken new ground. I know it's all because the cancer is growing and spreading inside me. I know upcoming treatments may have rather unpleasant side effects, but I can really do without my daily existence getting worse and worse every day.

The Big Reveal and a Fairly Major Hitch

On Thursday, March 28, we trodded on back to the Beloit Clinic, which is more or less next door to the Beloit Memorial Hospital. The route is becoming so familiar to us now that neither of us needs the help of the NAV systems in our cars to get there. Lately, more often than not, my wife has been driving and I'm grateful to her for that. The more fatigued and sore I become from the growing cancer, the less I feel like doing almost anything, including driving a car. 

This appointment was a biggie, though. Here, we would be told how far the cancer has spread to other parts of my body, and I was pretty sure that it had. It was the only thing that could really explain the soreness in my back and hips. 

I should pause here to explain that we both feel like my doctor knows his stuff. He is a urologic oncologist. When we've talked with him in the past, he seems knowledgeable in the latest research in the field. He's already talked with us about procedures that are far less invasive and destructive than what they were doing just a couple decades ago. However, his "bedside manner" leaves a bit to be desired. He's often so busy explaining the details of techniques to us that he gets a bit lost in it, never really stopping to either throw in an encouraging word or see how we're feeling and whether or not he should continue. 

It was a combination of this and a problem that I've had for as long as I can remember that turned what should have been a fairly simple follow-up into a day long nightmare for us.

Apparently, he had not seen the PET-PSMA scans before we had gotten there. (To his credit, though, we think he was over-booking himself just to get us in the day after the scan.) So, after the usual waiting in the lobby and waiting in an exam room, he invited us into his office to look at the scans with him and discuss the situation. I worry about situations like that because I have always had what is called a strong vasovagal response. This means that, whenever I'm paying too much attention to a medical procedure that makes me nervous, my blood pressure tanks, I get lightheaded, cold sweats, and often pass out. This has happened to me while having blood drawn, while seeing images of anything medically invasive, and even just discussing medically invasive things. It's a curse, but I can often avoid the worst case scenario of it all by, for example, asking to lie down to have blood drawn.

Here we are in the doctor's office, with only upright chairs, looking at detailed scans of my body, and discussing all the places in my body that he's seeing signs of cancer. It's in my prostate, my hips, my spine, a few places on my ribs, and so on. Even though I felt like I had prepared myself for bad news like this, it was still freaking me out. At one point the doctor mentioned, "Stage 4". Again, this was all very matter-of fact to the doctor, and there was no interjections of encouragement or good news whatsoever. 

As much as I was trying to hold it together, I started getting light headed. I asked if there was somewhere I could lie down. He took us across the hall to an exam room where various nurses and physicians assistants started tending to me. If it was just cold compresses and encouragement, I would have probably been fine in a few minutes. Instead, it was as though everyone around me was panicking, taking my BP, trying to put pads on me for an EKG, and so on. Very few people I've come across (even in the medical profession) seem to be familiar with a vasovagal response, and I truly believe they all thought I was having a heart attack. I wasn't, and I knew that, but the more everyone panicked around me the more freaked out I got.

I never did pass out, but I was breathing heavily and moving my fingers and toes around because this helps prevent the BP drop that makes me pass out. I can definitely see how my actions caused even more panic in them. I remember people lightly slapping my face and saying things like, "stay with me". I was with them, just trying not to pass out. Someone said my BP was something like 70/40. Really low. I heard someone just outside the door telling someone else to call the paramedics. Although I knew what was happening to me and knew this was unnecessary, I was also powerless to stop them.

Eventually the paramedics came, transferred me to a stretcher, and wheeled me out of the office, down the hall, down the elevator, and out to the EMS vehicle. They would be taking me to the ER of the hospital which, as I mentioned, is right next door to (across a road from) the clinic. The entire time, the paramedics talked to me about what was going on, but didn't seem to put much stock in my whole vasovagal explanation. To all of them, it seemed, I was having a heart event of some sort.

Our original appointment was for 2:15 pm. We probably got brought back around 2:30 or so. After waiting in an exam room, the doctor called us in to his office around 2:45, and I started to get light headed at everything that was going wrong with me around 3:00 or a little after. I completely lost track of time after that, but I bet I was over in a room in the ER, an IV in my arm and EKG sticker pads all over me by 3:30-3:45. I'm setting up this timeline because I did not get out of the ER until 8:00 pm. There were tests and scans and blood drawn during that time, and a low potassium count prompted them to start an IV drip of more potassium, but I spent a ton of time in the ER feeling back to normal and just waiting. 

For a while, my wife was with me, and her presence was (as always) very calming. When they came in to talk to me about the potassium drip, though, they said it was going to be at least two more hours. I sent my wife home to shower, eat, etc. This was probably around 5:30. She came back for me around 7:45 and I didn't actually meet her out in the lobby until around 8:00 pm. 

What a day! Not at all what we had planned.

I can't blame my doctor's staff or anyone else involved for taking every precaution, but I do wish they would have all listened more seriously to what I was telling them about the vasovagal response. I've lived with this thing my whole life, I knew that's what this was, and it was the panic of everyone around me that made the response worse. If any of them would have taken what I was telling them more seriously, I would have normalized in that exam room and been home many hours earlier. 

The one thing that all the tests in the ER did reveal, though, was that they think I have a touch of pneumonia. This would explain the coughing and throat clearing that I've been doing since January. I probably got it from vaping. They gave me two different antibiotics to try to knock it out. I hope it works. I'm definitely not vaping any more, and haven't since I suspected it was becoming a problem in January.

Next Steps

After my biopsy indicated that I clearly had an aggressive form of prostate cancer, the next step was to develop an initial treatment plan. My doctor wanted to do start with two things; an injection to lower my testosterone (the "food" for this type of cancer) and a more high-tech radiologic scan to determine how far the cancer had spread in my body. We discussed all this at the biopsy follow-up appointment on March 12, but couldn't schedule the injection until March 21. The scan had to be pushed even further out to March 27. I didn't like the idea of waiting so long for treatments to start but little did I realize how torturous the waiting was going to be.

In the days following March 12, many of my maladies (fatigue, hip and back pain, etc.) got worse, making me feel (justifiably so) that the cancer was indeed spreading during all these in-between times. Then, with the injection formally scheduled, my insurance would not approve it. The urologist's office called me on March 20 to tell me this and to say that they were working on a more acceptable alternative. They'd get back to me within 24 hours. March 21 came and went, as did March 22, with no word. I think we even called them on March 22 (a Friday) but got no reply. It was already very frustrating to do all this waiting but now, because of my insurance company, we needed to wait some more.

Fortunately, the scan, which was hideously expensive, had been approved and could happen as planned.

We got a call from the urologist's office on Monday, March 25, indicating that we had an appointment for an injection (presumably an insurance-acceptable one this time) the next afternoon. That more or less went without a hitch. Apparently, though, unlike the original injection that was submitted, this new shot would first raise my testosterone and then lower it. Not sure why but maybe what made the other one more expensive was that it went straight to lowering. A physician's assistant gave me the shot in my left arm and warned me about the potential hot flashes to come. My first actual treatment toward taming this cancer.

The scan, called PET-PSMA, was the next afternoon. The acronym is short for Positron Emission Tomography - Prostate Specific Membrane Antigen. Beloit Memorial Hospital only does these on certain days of the week (hence the scheduling delay) from a big, high-tech trailer parked just outside one of the hospital's doors. My assumption is that the equipment used here is too expensive for the hospital to own their own and keep it on site. I was told to allow at least two hours for it, but what I didn't realize is that the first hour involved being injected with something radioactive that would "light up" on the scan, then sitting in a chair while it coursed through my veins. When it was time for the scan, I was led to the other end of the trailer to what looked like a giant MRI tube. The tech was very pleasant, the scan itself was painless, and took no more than a half hour.

All that was left of this process was the follow-up appointment to go over the scan the next day, Thursday, March 28. This was the part I was dreading, though... The part where we find out just how far through my body this cancer has spread.

How It Began

In January of 2024, I was noticing a number of different maladies that I couldn't explain. Fatigue was a big one. I had caught COVID-19 at least once before, in November of 2022, and fatigue is a well-known symptom of long covid. Did I have long covid?

My wife had also had surgery to repair a tendon in her right foot in July 2023, so neither of us were very active before and especially after that surgery. We believe the tendon tore loose as early as May, so we curtailed our usual hiking, biking, and kayaking in favor of keeping her off her feet as much as possible. After the surgery, she was told not to bear weight on that foot for the next six weeks. That certainly kept us both pretty close to home (and inactive) but, even after that six weeks, she had physical therapy and a slower healing process than either of us had predicted. Essentially, we were both mostly inactive from May 2023 through the end of the year. Was the fatigue I was feeling from being completely out of shape?

To deal with that, I started thinking about getting a Total Gym. (It was January, after all.) I could exercise at home, starting as slowly as I needed and hopefully working up to something that would give me more stamina.

I had also developed a rather constant need to clear my throat. Sometimes it was worse than others. Sometimes it was more constant coughing than throat clearing. At night, lying in bed, I was feeling some strange, almost bubbly sensation at the end of my exhales. I had started vaping THC during 2023, so I sort of wrote this off to the effects of vaping and quit that cold turkey. 

Finally, I had a lot of minor aches, many of them in my legs, hips, and lower back. I lumped this in with being out of shape, which only motivated me more to purchase that Total Gym.

On January 31, I was able to get in to see my doctor for a checkup, and hopefully get some clarification about these things that were bothering me. As is now usual for my checkups, I have bloodwork done beforehand. At the appointment, my doctor was concerned about my elevated PSA (Prostate-Specific Antigen). Apparently, the normal level for men my age would be 4 or under. Mine was 27.5. After a couple other tests (digital and urine) my doctor suspected that it was a prostate infection, and put me on a month-long course of antibiotic. 

During the month of February, taking the antibiotic religiously, all of the maladies mentioned above persisted, and even felt worse at times. On my best days, I was tired and had very little energy. On my worst days, it felt like I had a mild flu. Little did I know that this was all about to get worse.

Suspecting that maybe this wasn't an infection after all, I went in for another blood/PSA test on March 1, the day after I finished the antibiotic. March 1 was a Friday. My doctor called me on March 2 -- a Saturday! -- to tell me that my PSA now measured 95.8. It had almost quadrupled during the month of February. He immediately referred me to a Urologist who was to contact me on Monday, March 4. 

After an initial meeting with the urologist, we were all pretty sure I had prostate cancer. When I mentioned all the other maladies I was having, he also suspected that it may have spread. "Prostate cancer likes bones," is how he phrased it. We did a relatively rudimentary x-ray at the office that day, in hopes that it might reveal something about why my hips and back were hurting. It showed nothing, but he warned me that this was often the case with basic x-rays. The next step was to schedule me for a prostate biopsy and ultrasound. This would be a definitive test. We scheduled it for Monday, March 11 with a follow-up appointment to discuss the results on March 12.

Unfortunately for me, the biopsy showed that my prostate was full of cancer. It was "graded" 8-9 on a scale of 10. Not good. People talk about life-changing events, and often hyperbolically. This was absolutely a life-changing event. Not only did I have cancer, but it was aggressive. I might have suspected that I had cancer with those PSA numbers (especially the second one) but having it medically confirmed was an absolute blow to me and my family.

To make matters worse on the daily health front, the stress of all this gave me a peptic ulcer. The phrase, "to make matters worse" should not be taken lightly here. On days when my hips and back were hurting and the ulcer was flaring up, I was literally immobile on the couch. Plus, all three of us were dealing with the depression at the news of what we did know as well as fear at the news we didn't yet know.

This was the start of a depressing and stressful journey.