Chemotherapy, Part 1

 After several back-and-forth phone calls to the Beloit Cancer Center and a specialty pharmacy called CareMed, we're now lined up for my first chemotherapy treatment. I go in to the Cancer Center tomorrow for some "baseline" labs they wanted to before I start. This will also be the first time anyone tries to use my chemo port for anything, so it will essentially be a test to see if it works.

If it does, and everything else goes according to plan, I am scheduled to have my first chemotherapy treatment on Tuesday, May 7. I'm looking forward to the next major step in killing off this cancer, but I'm also anxious about going through some of the horror stories I've heard about chemotherapy. Covering possible side-effects with an oncology nurse this afternoon didn't ease my mind much, either. 

These names don't mean much to me (yet?) but here is my initial prescription: 

• Docetaxel (injection) - slows cancer growth
  
• Abiraterone acetate (tablets) - further lowers testosterone
  
• Prednisone (tablets) - a steroid which decreases inflammation and slows down an overactive immune system

Restless Leg Syndrome

There's a condition called Restless Leg Syndrome that is very appropriately named. It's hard to describe what it feels like other than to say that one's leg (or legs) feel incredibly restless. I've never known it to happen when I'm walking or standing, only when I'm sitting or lying down. The feeling can be very intense, though. Torturously intense, to be honest. And relentless.

Prior to getting cancer, I had a couple rare instances of this happening to me, usually if I had spent a couple hours in a recliner without moving much. I've had quite a few more instances of it since getting sick, though. I wasn't really tracking it to try to figure out when it happened or what it might have been associated with, I was just annoyed when it happened. It has cost me numerous hours of sleep when it happens at night in bed. 

As mentioned in the previous post, I'm currently on the lookout for anything that might be associated with the Prolia injections. If I can log/journal reactions and side-effects to various medications, I can better prepare for them in the future. After the first Prolia injection, we weren't even prepared with the calcium and vitamin D supplements, so I ended up feeling all sorts of aches and pains until we got my body somewhat stabilized. RLS could have been part of that cocktail of maladies and I just didn't notice the timing.

The loss of at least four hours of sleep last night due to RLS seems to indicate that Prolia might be the culprit there. That was just short of 36 hours since the Prolia injections; right about the time I was expecting to start feeling more run down and achy. Being on top of the calcium supplements and OTC pain meds kept me from feeling the way I did a day or two after the first Prolia shots, but I am unaware of anything (except standing and walking) that alleviates RLS. It started shortly after I hit the sack and continued -- irrespective of my sleeping position -- for the next four hours or so. 

It's now 10:00 pm the next night and I'm intimidated to close up shop and call it a night. I'm not feeling any RLS right now, but I'm almost certain I will when I go to bed. It's so frustrating. 

Prolia, Part 2

The week ended with my second shot of Prolia, the medicine designed to strengthen bones often given to patients with osteoporosis. I get two shots, both subcutaneous injections, and one in each arm. The two nurses who have been working in the Medical Outpatient department on the Beloit Clinic are really nice and friendly, as well as being sympathetic to my situation. They make going to this particular (monthly) appointment about as stress-free as can be. 

The last time I had the Prolia injections, which was also the first time I had ever had them, I ended up feeling pretty poorly a couple days later. When we met with my urologist who prescribed the Prolia, I was kind of in the throes of that. He suggested several supplements that I could take to ease the side-effects: calcium and vitamin D in particular. Since I've now been taking those supplements (among others) since then, I'm hoping the side-effects from Saturday's injection won't make me feel so crappy. Time will tell, I suppose. I got the Prolia injections on Saturday afternoon and it's now Sunday evening. 

Our daughter and her boyfriend came to visit us today. They arrived last night but it was straight to bed for all of us at that point. Not only was it very nice to spend some time with them today (Sunday) but they were also very helpful to us in getting some household chores accomplished. Okay, in truth, we had gotten behind in some things because I haven't had the energy and my wife has been too busy. Our daughter and her boyfriend came in and just did what needed to be done. We're very grateful to them for that.

A Brief Outing

The day of the chemo port surgery, we came home, I had a bit to eat, then took a nap on the couch. When I awoke, I felt an overwhelming sense of boredom at my now all-too-familiar view of our living room. I believe I said something to my wife along the lines of, "bored, bored, bored, bored!" Her response was to suggest that we take a drive to a local forest preserve for at least a slow ride-through, if not also a bit of walking. 

It was a gorgeous day, so we drove out to Sugar River Forest Preserve. Our slow drive-though included several stops where we got out and walked around just a bit, allowing me to get some photos of the spring ephemeral wildflowers that were coming up. Unfortunately, I still didn't have the energy for an actual walk in the woods of any distance. It still felt really nice to get out in the sunshine and fresh air, however briefly.

There was rain in the forecast for Friday, so we made a tentative plan to do something very similar on Thursday. It seems that it took my body 24 hours to catch up with the fact that I had surgery, though. I was so wiped out on Thursday that I didn't have the energy for another excursion. I spent the whole day on the couch, sleeping for a good portion of it. The next outing will have to wait for the rain to pass and my (admittedly diminished) energy level to return.

Port in the Storm

Much less going on this week, thankfully. The big event was Wednesday, April 24, when I had surgery to install a chemo port in my chest. We were scheduled to be the second operation of the morning, but it turned out that whoever had the first surgery had cancelled. They tried to call us to get us to come in early but, for some reason, I never heard the call. We still had to get to the hospital by 8:30 am and, once we arrived, they expedited our prep for surgery. 

Everything seemed fine, except that the anesthesiologist told me that I would be getting sedation that would keep me awake and able to talk to them if I needed to. I explained to him that I had a pretty strong vasovagal response, and that it was probably better for everyone involved if I was not the least bit aware of what was going on during surgery. He was not swayed by that argument, though, and kept insisting that I would be aware but "wouldn't care" what was happening. 

Okay, doc. We'll see. You can't say you haven't been warned.

I'm happy to report that he was right. I was semi-conscious the entire time, and really didn't care. There was one point where (I think) they were threading the tube of the port into a vein which felt really weird. Uncomfortably weird. It came and passed, though, and I just didn't care. Interesting stuff, that anesthesia.

For anyone reading this who may not know, a chemo port is something designed to streamline the chemical injection and blood draw processes. Instead of searching for a vein each time, everything can be done through the port. I'm also under the impression that injecting chemicals through a vein in one's arm can be problematic in a couple ways. 

It feels strange to have this thing on my chest now (perhaps especially because it's still healing and tender) but I can definitely understand the advantage of doing things this way. I'm hoping it will ease the anxiety associated with my cursed vasovagal response as well. We are waiting for my insurance to approve the prescribed chemo treatment. Assuming that all eventually goes through, my fingers are crossed that the port works without a hitch.

A Busy Week!

The word "busy" doesn't mean what it used to before I retired. Sometimes I think back to everything I needed to get done on certain days/weeks and I wonder why I ever subjected myself to it. (That little issue of a paycheck to pay the bills is the likely culprit.) Then, once I retired, if I got busy, it was because I was scheduling things that *I* wanted to do. It was a very different, easy going and more enjoyable kind of busy.

Since getting sick, and especially since starting some of the early treatments described in previous posts, "busy" has come to mean things like several appointments in a week or even two or more appointments in a day. It's a world away from what anyone without cancer might consider busy, but it still wears me out. 

This week was a very busy week for me.

• Sunday, April 14: Our daughter visited us over the weekend. This did not create "busy" as such, but we spent some family time outside around the house and grounds. Before I got sick, that wouldn't have tired me out, but it sure did now. Plus, I still had that stupid catheter in, which made even sitting down and standing up more difficult.
  
• Monday, April 15: Early morning appointment with the urologist to have the catheter removed. A definite relief for me, eventually, but it didn't come without fears of possible infection and/or incontinence. (Thankfully neither came to be.) Our daughter was still visiting through the later afternoon.
• Tuesday, April 16, part 1: My first visit with an oncologist in the middle afternoon. Although he seemed to know his stuff, he also had a thick Indian accent and spoke about the road(s) we were going to take in a strangely non-linear way. I found myself confused by at least half our conversation. 
• Tuesday, April 16, part 2: Thankfully, the oncologist then took us to the chemo/infusion center (of the Beloit Cancer Center) and had us confer with a nurse who was much easier to understand and explained things much more linearly. I felt much better about the road(s) we were about to go down after talking with her, but the sum total of those two hours of intense but helpful information had me exhausted.
• Wednesday, April 17: Since I'm going to receive chemotherapy, they wanted to get a chemo port installed on my chest. We had an appointment to consult with the surgeon at 11:00 am, but were warned that the surgeon would be seeing us between procedures and might run a little late. We arrived at 11, answered the same battery of questions that everyone else that week had asked us already, and waited in an exam room until around noon when the surgeon came in. Noteworthy is the weirdest part of the entire conversation where he asked, "So why do you want a chemo port?" Are you kidding me? Don't you have a record of my downfall on your computer? Isn't the referral from an oncologist enough? Besides, I don't want any of this, thankyouverymuch.
• Thursday, April 18, part 1: The oncologist order genetic testing (bloodwork) to help decide if the choice of chemo drugs would be best for me. We drove back to the Beloit Cancer Center for a 2:00 pm appointment to have that done. My cursed vasovagal response means more stress for anything that involves drawing blood. Thankfully, the nurses there were very understanding and accommodating.
• Thursday, April 18, part 2: Then we went from the Cancer Center over to the Beloit clinic for a follow-up with my urologist. Everything there went fine (we even saw him 15 minutes early!) but two different appointments in two different buildings had me zonking out in an involuntary nap on the couch shortly after we got home.
• Friday, April 19, part 1: Originally, I had a haircut appointment on Thursday at noon but, with all the other appointments that got scheduled for that day, I asked my barber if I could reschedule. Thankfully, he said he could fit me in on Friday, early afternoon. My wife drove me (she's been driving me just about everywhere these days) then went to get some groceries and gas up the car while I was in the chair.
• Friday, April 19, part 2: That persistent and annoying cough I mentioned in at least one earlier post still has not gone away, despite being on three different courses of antibiotics since it first started bothering me. I just finished that third course on Thursday, and contacted my PCP that there was still no change. He ordered a chest x-ray that I could get a North Pointe (health facility near me) so, after a quick stop at home to drop off groceries, I went in for that x-ray.
  
• Saturday, April 20: There is nothing on the calendar for this day. Nothing. I'm going to do every single thing I can to keep it that way.
  

My Hero

This entire blog probably comes across as one big bitching session or, at the very least, woe is me, woe is me. Honestly, I would rather not be dealing with any of this, so the more discomfort, pain, inconvenience, and/or indiginity involved, the harder I find it to be cheerful and optimistic. Some might say that a change in this attitude might make the whole battle a little easier but I simply can't manage optimism right now. I've been diagnosed with Stage 4 prostate cancer and, so far, everything about the process of attacking it has been uncomfortable at the very least.

The brightest part of my whole world right now is my dear wife. She has been by my side every step of the way, going with me to every appointment, making sure we have good food here to eat, helping me manage my medication schedule, always trying to make me as comfortable as possible. We've spent quite a bit of time holding hands and crying together, too. I would rather be doing anything other than putting her through all this but I can never thank her enough for everything she has been doing for me.

My wife was already my best friend. Now she has become my hero.

Catheter

I knew that I was going to have a catheter in me for several days following the surgery. Having never had one before, the thought made me anxious. I'd love to be able to report that that anxiety was unfounded but that would be a lie. I have hated almost everything about this catheter since the moment I woke up after surgery. I'll spare you the details of all the reasons why but I hope I never have to "wear" a catheter again.

Back to the timeline. I was not lucid enough to remember what time I actually got out of surgery. We spent a couple of hours in recovery/post-op, though. By the time I got home that night, it was around 9:00 pm and I was totally ready to call quits on that day and hit the sack. There were all sorts of things we needed to figure out regarding how I would be sleeping with the catheter, and decisions were made pretty hastily because we were both exhausted. Since neither of us had any experience with catheters, we did not make the best decisions. 

Between being uncomfortable and anxious about the catheter and how to sleep with it, where to keep the bag, etc., I ended up getting no sleep whatsoever that night. I have a touch of sleep apnea that prevents me from sleeping on my back. Sleeping on my stomach would never have been an option, my left hip hurt because there's a lot of cancer in it right now, and we had positioned the bag on the wrong side of the bed for me to roll over onto my right side. I watched the hours pass that night, sitting up occasionally for some ibuprofen or acetaminophen to stop various aches and pains. At 6:00 am on the 11th, when I knew my early-riser wife might be waking up, I texted her to come in and help me get out of bed and get situated on the couch downstairs. 

I was able to get a couple catnaps on the couch on the 11th but, for the most part, I was completely exhausted by that evening and once again went up to bed at a previously unheard of early hour for me. Thankfully, we had also spent some time troubleshooting everything that had happened the night before, which allowed me to sleep on my right side and actually get some sleep. I hedged my bets with a bit of hydrocodone, too.

I'm scheduled to have the catheter removed on the morning of Monday, April 15. I've been warned that some incontinence could follow but, to be honest, this thing can't come out soon enough.

 

Cryotherapy

Apparently, it used to be that aggressive cases of prostate cancer like mine prompted the surgical removal of the prostate. At some point, someone figured out that freezing the prostate cracks the cancer cell walls. On April 10, I went in for this procedure, known as cryoablation or sometimes cryotherapy. The procedure was scheduled for 3:00 pm but they asked us to arrive at 1:30 pm to register.

Arriving on time or maybe a bit early, we made our way back to the surgery center. By the time I was in my gown and under blankets, we overheard that things were running behind and that I wouldn't be going under until 3:30. 3:30 became 4:00, 4:00 became 4:30 and, I actually didn't make it into the surgery until around 5:00. Three and a half hours of waiting on my back on a typically thin hospital bed. Pretty frustrating. 

As much as I am not a morning person, there's definitely something to be said for getting up at an ungodly hour to be first or second on the operating table and just get it over with.

Once in the surgery, I was given general anesthetic and was out cold in no time. I don't remember anything else until I started coming to in a post-op ward. According to my doctor/surgeon who came to talk with my wife at that point, everything went well.

 

Well, I'll Be

 I hesitated to title the previous post with the word, "breakthrough," because I really wasn't sure if it was. During so much of this ordeal so far, things change daily or every other day. Often, unfortunately, the change is negative; some new pain here, strange sensations there, new levels of fatigue, etc. However, it really does seem consistent that both of my injections have kicked in and are doing their jobs. 

As far as the testosterone-lowering injection (Eligard, aka leuprolide acetate) goes, they said it would make me much more tired and give me hot flashes. Check. Check. I'm not necessarily thrilled about being too tired to go for a walk outside OR about having sudden bouts of my body feeling like it's on fire. However, if lowering my testosterone means the cancer has less to feed on and grow, it's an acceptable sacrifice. 

The really unfortunate part about being too tired to go for a walk, though, is that I really feel like being outside in nature would do my outlook a world of good. We've been thinking of places we could go (now that the weather has gotten nicer) where we could drive and then just sit on a bench or picnic table for a while.

As far as the bone-building injection goes, they said it would help with the soreness/pain in my back and hips. Check. I'm still taking some ibuprofen here and some acetaminophen there, and I still have a couple hydrocodone pills to help me sleep at night, but I don't have to use any of that like clockwork now. Until this injection kicked in, I actually had to keep a timed schedule on my phone so that I wasn't overlapping pain meds or taking "too much" of any one of them in too short a period of time. I'm still writing down when I take that stuff, but it's out of habit more than anything else. I'm now simply supplementing my daily existence with those meds instead of barely surviving on a steady diet of them. 

That tingling sensation I was having? Apparently, the way that medication builds bone strength is by pulling calcium -- lots of it -- from my system to put to work in bone strengthening. Now the recommendation of the calcium supplements (600mg x 2 per day) made so much more sense. The day they arrived, I doubled the dose. The next morning, no tingling fingers and lips. Since then, the recommended dose seems to be working just fine. 

Another thing that's encouraging about where I am now is that the basket of pill jars on my end table has shifted from pain meds and antibiotics to (mostly) vitamin supplements. I understand that's because all the "heavy" drugs are already inside me from the injections, but it's nice to be staring at a basket full of more natural drugs on the table these days. 

Baby steps. Small breakthroughs. I'll take 'em. As long as we're moving in the right direction, too, it's encouraging. 

Now, if I just had enough energy to go for a walk!

A Breakthrough of sorts

 I went in for the injection on Saturday, March 30. What was this one for? Ever since the cancer had spread to my spine and hips (among other places) I have been experiencing both weakness and soreness in those areas. It has prevented me from any reasonable level of comfort in the daytime and has absolutely kept me awake at night. It's called Prolia (Denosumab) and it's the kind of thing they give to patients with osteoporosis to help strengthen bones. 

It wasn't fast acting, that's for sure. I felt no better that entire weekend. At that point, I'm alternating ibuprofen and acetaminophen throughout the day and the prescribed hydrocodone at night just to be somewhat (give that word a wide birth) comfortable. We all know that taking too much ibuprofen and/or acetaminophen can cause other problems, so I did my best to alternate between the two. However, it was already clear to me by this time that the ibuprofen was working much better than the acetaminophen, so my alternating leaned in favor of ibuprofen.

We had an appointment to see my doctor again on Tuesday, April 2. This was really a pre-op appointment for a procedure that we have scheduled for April 10. Our first topic of conversation was how uncomfortable I still was -- it almost felt worse on Monday and Tuesday! He informed us that, once that injection finally kicks in, some patients "feel like crap" for 24-48 hours. Lucky me, I was apparently once of these patients. 

He gave us some advice to help combat the negative effects of the injection (which I will need to get every four weeks): Vitamin D, a calcium supplement and, of all things, pomegranate juice concentrate. My wife ordered that right away and it all arrived this afternoon. Thursday, April 4.

My symptoms have changed today, too. I was not as achy when I first got up. Doing my regular bathroom routine (not including a shower... I'm doing that every other day at this point) did not completely wear me out. That's not to say it didn't make me tired, just not the feel of a major workout like it had for the past week or so. On the down side, I had a strange tingling in my lips(!) and both hands, and I felt somewhat nauseous. When I finally came downstairs to get some water and a bite to eat, I was overwhelmed with a sudden feeling of nausea that had me scrambling to find a bucket. It subsided, and I toasted myself an English muffin. One bite into that muffin while on the couch, though, and the nausea came rushing back. I never did throw up, though, thankfully, and I was able to eat the muffin. 

After all that, I spent most of the rest of the afternoon in a bit of a brain fog. Seriously, I felt brain dead. We looked up some side effects of chemical treatments (particularly the injection to lower my testosterone) and it seemed like these were somewhat common side effects. Also, to my amazement, I didn't need any ibuprofen or acetaminophen all afternoon long. Clearly, something has changed. It's such a shame that every step in the right direction is accompanied by its own negative side effects, but I guess that's just where we are with medicine right now.

Our next "big" step is a cryotherapy procedure on April 10. The idea here is that freezing cracks the cell walls of the cancer, so the procedure involves a freeze/thaw/repeat of my prostate. As uncomfortable as it sounds (and I'll be sedated during the procedure) it appears to be a newer, more effective, and less risky method than surgically removing my prostate. My doctor has seen a lot of success with this method, so we are hopeful.

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.