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 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. Although I don't remember the name of this medication at the moment, 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.