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.