Song for a Friend (Music)

A picture is worth a thousand words…and so is a melody. I’ve written music since I was five or six years old. I studied composition at university, but eventually dropped out of music school. But one thing I’ve found is that I can somehow express my deepest feelings with music where words would just fail me.

 Here's an instrumental track I wrote and recorded in my kitchen in 2009. This tune was written for my dear old friend, Kirk, who I’ve known for over 20 years. Kirk and I live less than an hour apart, but I swear it’s been ten years since we’ve seen each other in person, which just ain’t right…

Kirk and I usually send each other silly emails each Christmas. But I hadn't sent one the last two holidays because I was going through chemo each time. I finally decided to send that silly email, and like always, we were reconnected. Before I could tell him I had been diagnosed with incurable cancer, he told me his wife of many years had just died of cancer in the last year. Kirk is a curmudgeon and a grump old fart who is funny and a pleasure to be around. Even though it was an email, I could hear his heartbreak through the wires.

Listen 

When Goodbye Really Means Goodbye

Goodbye. It’s a word we use all the time. We may also say something like: see ya later, so long, farewell, bye-bye, and others, but goodbye has a more formal ring to it. But despite that, our intended meaning is often something like "until we meet again.”

I had a couple of cancer friends who died last year. In both cases, the last time I saw them we hugged and said goodbye to one another. I had no reason to believe that we would never see each other again.

Cancer is a cruel and unmerciful taskmaster. Alas, another lesson learned that bites like the bitter winter wind and knocked me off my feet like a right hook would from a champion boxer.

Always say goodbye like it may be the last. Sometimes goodbye really means goodbye.

I'm alive, I'm alive

I'm one month out from my last and final chemo. My PSA last week on the three-week checkup was 0.97. That's pretty amazing considering I started at 5,306 a mere 16 months ago. My first line-treatment (docetaxel and Lupron) only lasted about six months before my PSA started going back up, but we did get it from 5,306 down to 22, and that's a hell of a decrease. I started with such a high PSA that an improvement was almost a given during my first round of chemo. When my PSA started going up, I finally learned what cancer treatment disappointment is. I'm stage 4, so my cancer is incurable, but I had hoped the first-line treatment would have kept my PSA in the normal range for months, if not years. It was like the first time you nick a precious porcelain tea cup and you know it will never be the same even though the whole time you knew it was inevitable. But no matter how much time you have to prepare, you're never quite ready for it.

Today I read a post from a guy in a metastatic prostate cancer support group who said that his PSA had started going up after 20 months of being on abiraterone acetate (Zytiga), the same medicine I started a few months ago. This made me think of the stage 4 cancer as a chronic disease debate. Truthfully, as long as my medicine works, I can actually think of it that way. But once my medication quits working, and the medication after that quits working, and then when I'm all out of options, well there you have it, end of story.

Don't get me wrong, I'm absolutely grateful that there are medications (even the chemo) and options that can keep me a alive a wee bit longer. But the fact is, in the end I will run out of options. I play this over and over in my head, imaging how I'll feel the day my "chronic condition" goes terminal. I'm in this odd position of uncertainty and shaky middle ground, feeling somehow that despite have incurable cancer, I'm not sick enough to be in the "cancer club" (imposter syndrome) yet knowing the day will come when I most definitely will be.

I mostly focus on the present, enjoying life moment to moment. I still feel that I have so much to give before I go and that somehow I'm helping others. So the time spent feeling helpless is relatively small, which leaves me plenty of time to feel fearless. I have my bad days, don't ever think that I don't. But I do have really good days, days where all the little pieces of life seem to fit together. It's at those times when I want to scream, "I'm alive, I'm alive!" and know that I really am. 

Chemo - Round 2, Cycle 6

At last the day for the final treatment has arrived. Pretty much a standard treatment day. Labs, meet with my oncologist, and head to the chemo room for treatment. I thought that I might be asked to ring the bell again for my last treatment like I was last year, but that didn't happen. Could be because I didn't mention it, or maybe because I slept through most of my treatment due to the Benadryl once again. Just in case I had written my own bit to read before the ringing of the bell. I had originally decided I was definitely not gong to ring the bell because my cancer is incurable. I talked to several of my online cancer friends and I got a few good things to think about. First, do what ever makes sense to me. No right or wrong answer. For the most part I also got the suggestion that I do it for all those going through cancer. I couldn't argue that. So I wrote a quick piece to read if I were asked to ring the bell. Since I wasn't, I sent a scan of my handwritten words to the cancer center via Twitter. With no further commentary from, a copy of it follows:

The Smallest Gestures

It's a shame we fail to realize the smallest gestures often produce the largest returns. A smile when someone is feeling sad. A hand when someone is feeling down. A word when someone is feeling discouraged. An ear when someone needs to talk. That's all it takes. -Harry Petsanis

Chemo - Round 2, Cycle 5

Cycle 5, the penultimate treatment. I wish I could say I was going to miss it, but I'm not. I will miss the awesome nurses that work the treatment room. They make it so much better. So no matter where you are in treatment, better is always good.

The usual labs, nothing special there. Well, my PSA was down to 2.08, which is incredible. And pretty special. Just a little more than a year ago my PSA was at a monumental 5,306. Not bad at all buddy boy, not bad at all. (I love Henry on the TV show Oswald, and that's one of his classic lines.) Ok, where was I? My oncologist thinks I'm doing really well. The clinical trial coordinator things I'm doing pretty well. And I think I'm doing pretty well. So we have a unanimous consensus on that.

Scan results were good as well. The morning PET scan was cancelled due to the tracer not passing quality control. That worked out for the better as the schedule was really tight, if not impossible. CT and bone scans showed that things were still holding ground. At stage 4, that's really the best you can hope for, so I felt really good about that.

Treatment was just another day in the chair. I wish I could tell you more, but the cumulative effect of the chemo is catching up with me. I'm still going to work, but really when I get home it's hard to do much of anything. Fatigue is the main thing. I took it real easy during my nadir week, as I don't dare get sick again like last time. The nurse I had this time explained to me that the machine could be set to take 13 minutes to deliver the Benadryl, which has been the real bane of this round of chemos.

Cycle 4 Recap

As I had predicted, my previous treatment (cycle 4) started hitting my harder. This was the first time I had ever gotten sick durning the nadir period. Other than that, nothing unpredictable. All the normal throbbing aches and pains in the ankles and legs. The peripheral neuropathy more pronounced. Week 1 was typical in that I felt fine after chemo on Monday, as well as all of Tuesday and Wednesday. The aches kicked in on Thursday, which is also typical. Metal mouth started on Friday. Week 2, nadir week, I definitely felt the fatigue. And on Tuesday I felt something was not right. I was having hot flashes followed by the chills. I was constantly taking my shirt on and off. Or I should say shirts. It's winter here and cold, so I have a t-shirt and a flannel. So it was the flannel that saw the action. And on Monday and Tuesday I had terrible brain fog. On Friday I felt so bad that I went in for a checkup at the cancer center.

I was at the cancer center around noon. First was labs and about an hour wait to see the PA. (Physician's Assistant) I was just out of it, so I feel like I really didn't answer her questions very well. But she was patient and very kind, and just let me ramble as I needed. My white blood cell count was low, which was to be expected. 1 point something. She also determined that I was dehydrated, which no doubt I was. So she sent my upstairs for a saline drip.

I was there by myself, and even though I still felt pretty miserable, I had the greatest nurse. I think she was a little bit of everything I needed to feel better and have faith in humanity restored. I think she was yet another guardian angel. Can you have ore than none? Anyway, that's another blog post.After six hours at the cancer center, I was ready to go home. It took a day or so to feel better, but by Sunday, I was feeling back to normal.Week 3 was pretty standard. The white blood cells are building up and the immune system is getting stronger. Generally during week 3 I feel human again. I try to eat well and exercise a lot more so I'm all ready for the next cycle.

Chemo - Round 2, Cycle 4

So we start the back half of treatment in the first week of the new year. And back to what I consider the normal schedule: 9:00 a.m. labs, 9:40 a.m. appointment with my oncologist, and chemo at 10:30 a.m.

Well, not quite normal. The cancer center was incredibly busy, I imagine partly due to the holidays and things were running behind.

My wife met me in the “small” exam room and we had a bit of a wait. I never mind as my oncologist is very attentive to all her patients. Anyway, it was probably about 10:15 or so before we met with my oncologist.

Fortunately my labs looked good and I didn’t have a lot of questions. My scans also came back good. Or really as good as they could be. No progression for the most part, and some mets have gotten smaller. But there are a LOT of mets. I asked how many there were and she really couldn’t quantify it as pretty much my whole spine was black in the scan, which means there are lots and lots of mets.

My previously swollen lymph nodes (only one or two) had shrunk and my prostate has been getting smaller too. That I can tell because peeing is a lot easier. Yeah, the Flowmax helps, but I can tell the difference with my prostate. One thing I didn’t get at my appointment was my PSA, as it wasn’t ready yet.

We made it to the third floor for chemo just a few minutes late. The waiting room was packed. I did have a longer wait than usual, but nothing outlandish. It was nice to just sit. I did some 4-7-8 breathing exercises and then just enjoyed the wait. Not too long and the pager buzzed and I was on my way in.

This time I got a room with a window. Normally that’s a good thing, but it was cold outside and the windows were drafty. Reminds of a time when I got a rental car that was a convertible, which I suppose is a good thing (despite being terrified of them), but it was December, bitter cold, and it was snowing.

I got my warm blanket and I was happy. The good news is the nurse who would be administering my chemo was this really nice (and very thorough) lady from Ethiopia who I’ve had before, I think during my first round. This is my 10th chemo and I didn’t start blogging about them until this time around so I’m not really sure.

There was some delay in getting the medicine from the pharmacy, so we didn’t get started until about 11:30, an hour later than scheduled. Not a big deal, I enjoyed just sitting. I asked for a sack lunch, but apparently there weren’t any. The Ethiopian nurse brought me some snacks, which was very kind of her. Some peanut butter crackers and a little pack of shortbread. And later she found a frozen peanut butter and jelly sandwich that I saved for later. And my wife brought some Tippins pumpkin pie. Not sure what it is about pumpkin pie and chemo, but for me, the two go hand in hand. My oncologist’s nurse called and let me know my PSA had gone down to 2.8! I can’t remember the last time it was under 3.

Another nurse came in to do the pre-chemo drip. When I mentioned the Benadryl just wiping me out, she said she would administer it to me in one-minute intervals over the course of five minutes. Ok, this nurse deserves an award of some kind. This made a huge difference. It took five or ten minutes before I even felt it. And I simply felt groggy, which is way better than falling asleep in a matter of seconds. I nodded of here and there, but I was with the world for the duration. And when we left I was cognizant and could walk out on my own two legs. Still, it’s 7:00 p.m. and I’m going to bed.