Know Your Audience and Rough Patches

I’m scared today. A lot has happened over the past 8 months that has scared me and continues to do so, but this is kind of different. I’ve been presented with realities like “you have cancer”, “you have a tumour”, “you have a blood clot that must come out”, etc etc etc… No brainers basically. This is what you have and this is what we have to do to intervene at this point. No major choices to make.

First of all, let me tell you that I had a shitty week. I spent Monday through Wednesday in the Surrey Memorial Hospital emergency ward because of shortness of breath. Some other stuff happened too, I think, but Wendy would remember that better. I felt shitty, to say the least. I may have been getting pneumonia, I’m not sure. They eventually drained almost a litre of fluid from the space between my right lung and rib cage. I felt better after that and was released. That was a long, boring and somewhat traumatic 3 days. It kind of wore me out for a number of reasons. I won’t get into them at this point. I’m tired of complaining about them. Lol.

On Friday I was given a choice to make that can and will affect the rest of my life, however long that may be. Based on the tone and comments made by Dr. H., he was suggesting that I don’t have much time left (that’s where knowing your audience comes into play). He even commented on Wendy’s enthusiasm with respect to my recovery and laughed. It didn’t really sink in until after the appointment. I’m not sure if I’ve mentioned this in the past, but that’s a major peeve of mine when visiting specialists. They make me feel like death is right around the corner and they are here to help me get there in relative comfort. The problem is, I don’t want to die right now, and I was hoping they could help me get through this rough patch until the next one. Clearly we don’t see eye to eye.

Okay, wait a minute. I just got sidetracked. Here we go again…

On Friday I was offered a chordotomy, which involves severing a nerve in the cervical spine to eliminate pain on the right side of my body. It is a permanent procedure. There is no going back. I am apparently a good candidate for the procedure as I am in palliative care and my pain relief threshold through narcotics has been reached. Blah, blah, blah.

The reason I am scared is simple. I want to pull out of this death tailspin and get back to living, but every Doctor I see makes me feel like “this is it. The end of the ride is near and it’s time to get off.”

The chordotomy will remove the sensations for temperature and pain on the right side of my body, from the neck down. That means down my right arm as well. That means it may affect how I play the guitar. As I write this I see how stupid that sounds but it’s still really important to me. I don’t want to be in pain and I hope the procedure works, but it may mean that I won’t be able to feel guitar strings anymore. I’m not sure. The Doctor seems to think that I’ll be fine and should feel them but no one is 100% sure.

Another reason I am scared is because I can’t seem to pull out of this tailspin right now. The mental one and the physical one. I can usually pull out of the mental tailspin pretty fast. I would like to think I am mentally strong but this one is dragging on and on. I see my body melt away in the mirror and I watch the numbers on the scale go down everyday, and I have to admit I feel like my body is failing me. I get focused on that and then I can’t get back on the mental fast track. I’m finding it really hard this time around. Maybe that’s why this chordotomy thing is bugging me so much. I don’t know.

So if anyone out there has some spare mental strength they can throw my way, I would appreciate it. I’m having a really hard time right now. This has been the roughest patch so far.

Nivolumab and music to my ears

Well, it’s finally coursing through my veins. Welcome Nivolumab. I’m not sure what to expect but we are hoping for the best. I’m supposed to receive a treatment every 2 weeks for the foreseeable future with the hopes that these tumours will start reversing their course of action. Lets all hope that happens sooner than later.

I have to admit, I’ve been feeling pretty decent the last couple of weeks. Since Radiation therapy. Apparently I’m a “responder” and radiation seems to work for me – albeit temporarily. So far, I can walk a little better and am getting some better sleeps thanks to some holistic medication.

I would just like to be in good enough shape to enjoy the holidays with my family. That’s my goal.

Otherwise, there isn’t much to report really. I would love to say a lot more but I’m kind of in a good place where I have some balanced sleeps, pain relief and feeling OK overall.

Since my hearing loss suffered as a result of the Cisplatin, I’ve been on the search for a good portable music player. For everyone who said “iPhone!” shame on you. They sound horrible. To be honest, they are good for most applications but for music, not so much. I’ll listen to Audiobooks and Podcasts on my iPhone but not so much music unless I’m streaming it in the truck.

I ended up buying a dedicated music player with a built-in headphone amp, DAC (Digital to Analog Converter), and 10 Band EQ. It uses micro SD cards for storage which cuts down on the cost. You would think that these are expensive but they are about ½ the price of an iPod and can be loaded with unlimited music. It decodes all recorded music formats including all lossless formats. All you need is a decent set of headphones and you are off to the races. So I sold a few guitar pedals, went to my favourite boutique music store (The Headphone Bar) and bought a FiiO X3 music player and a pair of Sennheiser Momentum II headphones. Not cheap overall but what a great sounding little system. With the 10 Band EQ I can adjust the player to cover off the frequencies I now have difficulty hearing. So far so good. Now it’s just a matter of loading a bunch of Micro SD cards with my favourite tunes.

Wendy had had me working the last few days. I think she mentioned it in her post. We’ve had to re-arrange the office to accommodate a hospital bed – just in case. I may try it out tonight. I’ve been sleeping in Rob’s chair in the family room for the past week or so. It’s so comfortable and I’m getting some great sleeps. I’m hoping I can transfer that to the hospital bed because the last thing I want to do is wear out my father-in-law’s chair. He was nice enough to lend it to me, I don’t want to wreck it.

Well I think it’s time for me to kick back and have another nap. That or make dinner. I can’t decide now. Lol.

What to write?

What to write???

I have to try to catch up with my prolific wife. She seems to have a lot to say and the time to write it down. That’s not a fair statement, I have a lot to say and more time than her to write it down, I just forget to do it or see something shiny and get distracted. Duh.

A lot has happened over the last little while. So much so that I could not possibly put it in chronological order for a nice read. So I will point out some highlights!

Well, I underwent another bout of radiation treatment to help with the pain in my leg. Thankfully it did in fact address that particular pain but now there seems to be more pain in different locations. All the same leg, just top and bottom now. I shouldn’t say “more pain” because I don’t think there is more. It’s just the link between the two pains has been severed and now instead of my whole leg being sore with an emphasis on one spot, the middle is taken care of thanks to the radiation but the top and bottom still hurt. It’s hard to describe. I won’t lie though, I’ve been having difficulties dealing with the remaining pain. It hurts. Quite a bit. It keeps me up at night and consequently keeps my lovely spouse up as well as I lament and ask for her help in wrapping myself up in heating blankets or take a bath or search for breakthrough meds. I don’t know what I would do without her.

How about a happy highlight! One of the recent highlights for me is that I finally got to see Matthew Good in concert. He’s been an elusive artist and I thought he had hung up his touring gloves but in the end, he still performs live. I ended up going to the show with Zach. Wendy was my official date but she just wasn’t up to it for her own reasons. She has been working really hard on my behalf while I sit on the sidelines just taking my meds as expected and watching the show of life go on without me. So it’s totally understandable.

matthew good

Matthew Good was great. He played many of my favourite oldies from his time with the Matthew Good Band as well as some of his newer stuff in support of his most recent solo release “Chaotic Neutral”. I had a really good time. Zach didn’t recognize any of the music – it was before his time – but like his dad, seems to enjoy live performances no matter who is playing. Plus it was nice to spend some time with him.

Chaotic Neutral

Back to some sad stuff. The event did manage to solidify something that I had been struggling with over the past few weeks. Every year, my RCMP Troop has a get-together around the holidays. Just an informal get-together where drinks and laughs can be had. Over the years, I had passed on the opportunities for a number of reasons, mostly money since the reunions normally happen in Quebec or Ontario. I almost went the last two or three years but again passed, thinking “I’ll do it next year for sure”. Well next year is here and now it’s not about money, it’s my body that says NO! There is no way I could make it unassisted through an airport, trying to get to a connecting flight or reach a taxi stand for that matter. I just couldn’t do it. The pain is just too much. I was going to go to the reunion in Montreal and then visit my good friend Chris in Ottawa who finds himself in the same predicament I am in. He was recently diagnosed with cancer and is currently undergoing treatment. I don’t have the words to describe how heartbroken I am over my inability to go and support Chris. I so wanted to have dinner with my Troop mates and then visit Chris in person. But, I’ve realized that it can’t happen. My body just won’t make it. And that’s saying a lot because I’m pretty stubborn. If there was anyway for me to tough it out, I would. But there isn’t. My body failing me just makes me want to cry. Now, I hope there is a “next year” to do it in. I hope so.

Let that be a lesson to everyone, don’t put off what you can do right now because you never know… You may not be able to do it later.

Encounters of Another Kind

So I’m sitting outside of the BC Cancer Agency in Surrey, waiting for Wendy to pick me up. There were some other patients waiting for a ride, or just out for fresh air.
We are literally surround by no smoking signs when what do I see but a couple standing there smoking. A little closer look revealed that they were both likely recently cleaned up junkies. By recently cleaned up I meant someone had done their laundry. It made sense because there is a detox centre nearby.
No one else seemed interested in saying anything so I decided to speak up. I said “Excuse me but don’t you see all of the no smoking signs around here.” The male shrugged and kept chatting with his companion. So I continued “Why don’t you have a little respect for people here and go smoke somewhere else.” Then he spoke up and said “Well you don’t have to be so rude about it. My uncle or something died of cancer you know.”
I responded with “Well there are people here that may be dying of cancer, why don’t you have a little respect for them. You’re standing outside of the Cancer Agency for god’s sake. How stupid are you?
At that point he started walking away laughing and said “Well I hope you’re dying of cancer. Enjoy the time you have left fucker.”
I said “I will. But I won’t live my last days being someone like you.”
That’s when he got angry and said “Someone like me eh! Why don’t I go over there and kick your ass!”
“Because you’re a coward” I said.
“Oh yeah! Well you’re fucking ugly! Old man!” He continued to talk trash as he walked away.
I stood there wondering why his comments didn’t bother me so much. I think it’s because of all of the kindness I received over the past months. I reminded myself that there are a lot more nice people in the world than there are shitheads like that guy.
Finally my ride had arrived and it was time to go.

PET Scans, Oncos and Canceros Rancheros

So Tuesday was my PET Scan and Wednesday was my appointment with the oncologist. The PET Scan went relatively well, the oncologists appointment did not. I shouldn’t say it didn’t go well, Dr K is a very pleasant doctor but the news he delivered wasn’t great. It turns out that the cancer (aka: Canceros Rancheros if it was a Mexican dish) has spread a wee bit more towards the nerves that affect the front of my leg. Which means that all of the pain I’ve been suffering from recently was not in fact muscular pain it was nerve pain related to my Mexican dish.

So, where do we go from here? Well Dr K will consult with Dr P and look into some further radiation treatment. Hopefully they can treat that particular area and relieve some of the pain.

The next plan of attack was to take another chemo drug that sounds like Sinutab but is not Sinutab. Wouldn’t that be cool? Sinutab for cancer. They’d make billions. Anyways, I turned down that great opportunity in favor of waiting for the POG results. I am hoping, fingers crossed, that the genetic sequencing done by the POG Trial comes up with some form of treatment. Because to be quite honest, it looks like we’re coming to the end of potential treatments.

My wonderful wife has been juicing the shit out of our local organic vegetables and making me drink her concoctions on a daily basis. I have to admit that while her first juices tasted like science experiments gone bad, her most recent recipes are quite tasty. Keep it up Wendy. At the very least it’s giving me a lot more energy!

Well that’s my update du jour. I wish I could write more but my leg is bothering me and well, to be quite honest, I’m feeling a little down right now.

Until next time.

Music, Layaways and a Little Something Else

I have so much to say I don’t know where to start. So I guess I’ll just start here…

I became aware of another band coming to Vancouver that I’ve always wanted to see in concert. I enjoy their music but I’m certainly not a superfan. From what I’ve heard, their concerts are full of props and theatrics and are just great fun, so I set upon the journey to acquire tickets.

I didn’t want to get shut out of the whole ticket purchasing process by the scalpers so I decided to find out if the band had a fan club which I could join. Sure enough, they did. So I dug out my credit card and paid their fan club fee of 30 GBP (Yes, the Queens money). Then I sought out their fan club pre-sale section and learned that the fan club could purchase tickets a clear 3 days before the general public and that fan club ticket sales opened on October 14th at 10AM. That was kind of shitty news because I knew that I would be at the Cancer Agency meeting with Dr K and getting “news”. That whole day unfolded slowly so it wasn’t until about 5PM that I was able to sit down and search for fan club tickets. Anyways, I managed to get tickets right beside the stage, 17 rows up. They look pretty awesome but we’ll see on concert night! Oh yeah, I forgot to mention that the band was Iron Maiden…

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Next is a recent purchase (layaway actually). I often stop into my local Long & McQuade music store to check out their guitars and buy strings and things. Well last Monday a particular guitar caught my eye. It was a Gretsch G5620T in blue. I normally don’t care for Gretsch guitars because of their neck profiles, but this one was different. It felt really good in my hand and was very resonant. I don’t normally buy new gear. I stick to used because you get good gear for half the price. So I hung it back up and left the store.

I came back on Wednesday because I had forgotten to buy strings on Monday – probably from being distracted by that Gretsch. I picked up my strings and had another look at the Gretsch before leaving the store.

After humming and hawing for the evening, and recalling a time where I wanted a particular guitar at Long & McQuade but waited a day too long and being told that someone had literally just left the store with it, I decided to put the Gretsch on layaway. I have a separate bank account that I use for buying and selling guitar stuff. I usually make money on gear and as it accumulates, I decide on what I want to buy. Basically, it’s separate from our family finances and I have an agreement with Wendy that I would only spend my guitar money when I want something. I didn’t have enough money in it to buy the guitar but I currently have a bunch of stuff for sale, so I was confident I could pay for the guitar in short order – as my items sold. So I drove over to Long & McQuade, found my favorite salesman and asked him to put the Gretsch on layaway for me. Unfortunately, I couldn’t find a stock picture in blue. Mine is blue.

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And now for some not so good news. I’m not sure if Wendy had mentioned an experimental procedure that BCCA was currently studying that involved a lidocaine infusion. Anyways, long story short, they attach an IV and infuse the patient with a bag of premixed lidocaine – the same stuff Dentist’s use to freeze your mouth. In this case the thought is that the lidocaine would provide a general anesthetic-like effect on the affected nerves, and the patient would get relief for weeks if not months.

Well sign me up! I can only dream of being pain free for any extended period of time. So I was scheduled for yesterday, October 15th at 10AM. I made it to my appointment on time and got set up for my treatment. Rob was there to drive me home after the procedure. Apparently, there was a chance that I may feel numb and disoriented along with some other temporary side effects. He showed up at 10AM expecting, like me, that the procedure would happen in short order. But…There were a number of delays one of which was a blood test that hadn’t been done. I guess they needed to check my potassium levels before the infusion. Why? I have no idea. Then they had to line up a pharmacist to brew up the mixture and a nurse who could check my vital every 10 or 15 minutes. They managed to get all of that done by about 1 or 2 PM and then the infusion finally started. I got to spend most of the day with my favorite father-in-law. Out of all of my fathers-in-law, he’s the best.

So the infusion was finally finished. My tongue felt a little tingly, my mouth didn’t want to work properly and I slurred like a drunk. Probably not as bad but close. The nerve pain in my leg was gone and I could only feel the muscular pain of unknown origin that has been haunting me for several days, maybe even a couple of weeks.

I met with Dr H who went over my symptoms with me as well as what I could do for the muscle pain until that one is figured out. She was happy about the nerve pain resolution in my leg but didn’t come across as confident that the procedure was a success. I was advised of two other procedures that could be done (won’t bore you with those) and then I was released. Besides feeling kind of drunk, I felt pretty good.

Until about 7PM. That’s when the new pain started. I was sitting down playing the guitar in the living room and Wendy was trying to surreptitiously record me in action. We had a we bit of an argument over this when it felt like my foot caught fire. Yup, that’s what I said. Hurt like a son of a bitch. Then the pain extended to my knee and ass. I quickly shut everything down and “ran” into the family where I asked Wendy to wrap my foot in ice. The I needed another ice pack for the muscular pain in my upper leg as well as my burning ass.

It was a bit of a gong show until Wendy and I managed me upstairs into out bed and wrap me up in a combination of ice packs, comforters and an electric blanket. I was shivering, my foot was on fire, my ass was on fire, the muscles in the upper leg were in spasm and screaming in pain. Then I just lost my mind. It was too much. I didn’t know what to do, Wendy didn’t know what to do and I was in so much pain I was losing my mind. That’s when the self-pity and crying came. Let’s not forget anger. I knew it was the wrong place to go but at this point I just wanted to die. It’s bad enough that I have cancer, but do I have to be in so much pain all of the time? Do I have to be robbed of sleep every night? Do I have to be prevented from enjoying the one hobby that I have? I can’t even sit down for more than 20 minutes or so to play the instrument that I love playing. I was caught in a whirlwind of pain, anger and self-pity. I eventually took enough hydromorphone to pass out for an hour or so. And continued to do so every two hours as per the Drs orders.

I woke up this morning still in pain, but the normal stuff that I felt before I went into the BCCA for the lidocaine procedure. The muscular pain is still very painful, but at least I’m not on fire anymore.

That experience took a lot out of me and brought me to a pain threshold that I don’t want to experience again. Today I am tired and sad. I hope to continue recuperating and eventually put a smile back on my face. But right now, it’s too much to ask.

Adventures in CT Scanning

Well today was the big day. I finally got my CT Scan to see if the treatment modalities had any effect on my tumours.

It was relatively uneventful. I showed up, they laid me down on the table that slides into the CT donut-looking machine. Then the two nurses tried to do an IV on my right arm – didn’t work. Then they tried my left arm – worked. They slid me into the machine and warned me that they were injecting the dye and I would be feeling “sensations”. I did feel the sensations, which felt like I peed all over myself. Yup pretty bizarre and totally accurate. Anyways…

Then they did the scan, which took all of 3 minutes (I was kind of pissed that I put $4 in the parking meter giving my an 1h20min parking) and said “Ok, we’re done!” Now here comes the reason why I used the word “relatively” in the previous paragraph. Once they rolled my table out of the donut it was time for me to get up. I was offered an arm to assist me, which I accepted. Who turns a pretty girl down? One, two, three and up we went. That’s when I let out the loudest fart you could ever imagine. The second nurse jumped and the one holding my arm started laughing uncontrollably. The second nurse smiled and said “Is that your final remark?” then burst into laughter. What could I say but “Whoops. Sorry about that. I bet that happens all of the time.” Then I joined in.

At least I left them with smiles on their faces. What better gift than a little stinker and a smile.