First Treatment Done! – Decisions I Never Thought I’d Have to Make

I’m pretty much done my first treatment! I’m on day 12 of 168, and now I know roughly what to expect for the rest of this process. Ultimately the first one wasn’t as bad as I thought, but there are some unfortunate symptoms, and a few… incidents.

A day typically looks like this. I usually feel pretty good in the morning, so I make fresh pressed juice for Amanda and I before she goes to work. Sometimes bake a loaf of my homemade sourdough bread that’s been rising over night (if 14 year old me could see me now!). Then I take a double dose of laxatives and wash it down with a double espresso. I’ll spare you the gory details of the next half hour or so, but if you want to capture the sentiment, you can watch the first 20 minutes of “Saving Private Ryan”.

The rest of the day is totally dependent of where I am in my cycle (there’s a joke here that the feminist in me won’t allow me to make). If it’s one of my bad days (3-6 days following chemo), I’ll usually be pretty fatigued and nauseous so I’m typically just relaxing around the house. If it’s any other day, I usually feel like I can do about anything as long as I’m dodging sick people and allowing time for a potential afternoon nap. I might even be going back to work for a few hours a week!

Because I need to drink so much water during the day to flush my system, I wake up in the middle of the night to go the the bathroom multiple times. This is something I typically do standing up (I swear there’s a reason I’m telling you this). On about day 6 or so, I had a particularly urgent trip to the bathroom. I was standing there, doing my business, and I got extremely light headed. So I’m standing there, right in the middle of peeing, and suddenly I feel like I’m going to pass out. This was a huge dilemma.

Do I try to maintain accuracy while turning around to sit? That seemed like an interesting challenge. The thought of pinching it off mid-stream felt like it might cause me to faint at the time. Do I stop peeing and consciously try to lie down immediately so that if I do pass out I won’t hurt myself? Do I lie down and continue peeing… try a lob shot?

Sadly we’ll never know exactly what I decided to do.

I woke up on the floor of the study with Amanda standing over me, and a sore jaw. I think that when I was leaving the bathroom, I knew I wouldn’t make it to the bedroom; so I headed for the chair in the study and passed out on the way there.

Now, when I need to go in the middle of the night, I do it sitting… and I’ve gotta say, I don’t hate it.

So it goes.

 

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Soooo… Ever Wondered about Sperm Freezing?/First Round Chemo Update

In the little bit of research I’ve done on Chemotherapy, I’ve learned that the treatment doesn’t target Cancer cells specifically; it targets fast dividing cells. Fast dividing cells include hair, fingernails, my tumor, and yes… sperm. When this whole thing began, I was advised to freeze some of my Little Gentlemen based on the small chance that normal sperm production wouldn’t start up again. As you may have guessed, this was a strange process.

In Manitoba, fertility clinics are privately run, so Amanda and I went to one close to our house. We waited in the waiting room (with a woman in the process of having quadruplets, among others), then were brought into the clinic room. We had a good talk to the doctor about the whole process, then were left to wait for the nurse to take me into the “donation room”.

When the nurse came in to get me, she asked me something that took me completely off guard. “Would you like your wife to come in with you?”.

I feel like this is a question they need to prepare you for! There was this moment of absolute panic where I didn’t wan’t to be presumptuous and say “yes”, but I also didn’t want to offend my wife and say “no”.

A split second later, the nurse started listing the stipulations… all the things that couldn’t take place in “the room”. It was then quickly decided that the awkwardness of what was about to happen would best be taken on alone.

So here’s this action, that I’ve been literally hiding since I was a preteen. And I’m just being lead by a nurse and my wife, through a waiting room, to perform this… action. I could feel the unborn quadruplets judging me.

The first thing I noticed was how dimly lit the room was… why? They might as well have had pumpkin spice candles and rose pedals lining the linoleum. There was a stack of magazines (which I decided not to touch), and a chair (which I decided not to use). I washed my hands before and after…

Later that day, I got a phone call from the fertility clinic. While I’m not one to toot my own horn (if you know me, you’ll know that’s a total lie), the nurse was very pleased with the amount of “specimen” that we’d managed to save. So if chemo doesn’t go as planned, Amanda and I may still be able to have a baby!

 

Today I am on day 5 of my first treatment. This is supposed to be the worst of the first 2 weeks. It will likely get worse as we go, but if this is even in the realm of “as bad as it gets”, it’s totally manageable. I have some nausea, some pretty serious fatigue, and my mouth and joints feel kind of weird.

When I pee, the toxicity level is so high that I need to close off the toilette seat, and flush twice. This is just on the off chance that there is some untreated chemical in my urine. This is nasty stuff.

I’ve talked to a few people who have been through more intense chemo treatments, and they sound absolutely miserable. My treatment is considered “mild/moderate” as far as chemo goes, so I’m counting myself lucky!

 

So it goes.

RESULTS ARE IN!

If someone had told me 6 weeks ago, that my reaction to being told that I have Hodgkin Lymphoma would be a fist pump… I would have told them that they have a very dark sense of humour.

And we’re not talking, like a “your favourite Bachelorette gets a rose” kind of fist pump. We’re talking a “Tiger Woods wins his first Major” kind of fist pump.

Tiger Gif

If you don’t get one of those references, you probably get the other… and if you get both, you’re probably my type of person.

Now we have an idea of what life is going to look like for the next six months, which feels amazing. I’ll be getting a chemotherapy treatment every 2 weeks, for the next 6 months. 3 -5 days after each treatment I’ll be hitting my low, and the rest of the time should be relatively OK. To get an idea how my body responds to therapy, I’m going to take the next 2 weeks of for sure. My Oncologist isn’t crazy about the idea of me working, mostly because of dust and access to people with compromised immune systems, but we’re going to see how the first treatment goes and take it from there. If I’m not working for 6 months I’ll need some kind of hobby… I’m thinking about breeding Yorkshire Terriers.

So it goes.

“Oh my god… I LOVE your veins!”

At the Health Sciences Center (HSC), where I had both my biopsies done, IVs used to be put in place by IV nurses. These nurses would roam the halls of HSC and happily put needles in veins with expertise and accuracy. Sadly, since recent provincial healthcare cuts, IV nurses are no more. This means, that for the last few weeks, nurses who don’t normally install IVs, are now learning on the job.

The second biopsy I had was pretty high risk. The tumor in my chest is very large and it is touching my heart and both lungs. So by applying pressure to the tumor to cut out a biopsy, the anaesthesia team was worried about all kinds of complications (stroke, heart attack, death, etc.). This means, that if they need to get something into my blood stream, they need a large quantity very quickly… this means that my IV looked less like a syringe needle, and more like a knitting needle.

I’ll mention now, and am a bid embarrassed to say, that I am a bit of a wimp when it comes to needles…

When the nurse came into my room, the first thing she said to me was “Oh my god… I LOVE your veins! This is the biggest IV we carry on the ward, and I was so, super nervous to put it in, but seeing how your veins pop out like that… well I guess I should get it in first, right!?” She attempted twice on the Left forearm, and once on my Right, with no luck. She then called in another nurse to take another stab (pun totally intended) at it. She walked in, looked at my arm and said “what? you’re having a problem with this guy?” This nurse knew a trick, she wrapped both my hands in hot, wet towels for few minutes, then tried in a few different spots. The second nurse couldn’t hit the vein, so a third nurse came in to try… similar vein comments, similar outcome.

Finally, they called in a woman who used to be an IV nurse, and now works in a different unit. She swept in, hit the vein first try, and was out in under a minute. Apparently I have thick skin, and was a bit dehydrated at the time making it hard to get. I’m sure the nurses will learn to be just as good in time, but until then, I imagine there will be a lot of stories like mine.

My second biopsy on Christmas Eve was a success! I was awake, but under a local anaesthetic, listening and talking to the surgeons while they worked. The pathology team was called in on Christmas Day and Boxing Day, hoping that my results would be ready on December 27th, but sadly we’re still waiting. In all likelihood it’s Hodgkin Lymphoma. This is a type of cancer that is most sensitive the chemotherapy, and will be the smallest pain in the ass to treat. There are small chances that it could by Sarcoma, or Thymoma as well. It’s unlikely, but if one of these cancers is living in my chest, it will be a much larger pain in the ass to treat.

Fingers crossed for as small a pain in the ass as possible…

B+

When you start seeing specialists and surgeons, you learn they all apply their own flair to their intake forms. The Thoracic Surgeon who was going to perform my biopsy wanted to know how his patients perceived their own health. Whenever you go in to see him, there is a questionnaire, and at the end a scale from 0 to 100. It says “If 0 is the worst imaginable and 100 is perfect, rate your health today.”

I found this difficult, because the way I was feeling was very different from the actual health of my body, so to make things clearer I decided to circle 2 numbers. One for how I’m feeling, and one for my actual health. I had a good night’s sleep, Amanda made me a fresh pressed juice in the morning (Thanks Guy and Jody), and I was feeling pretty chipper so I decided 90 was the number for how I was feeling. Then I quickly picked a number for my actual physical health. Taking everything into account, I circled 75 and handed it in.

Let’s think about that for a moment…

My heart, liver, kidneys, and GI tract are all working fine. My blood work is consistently great. One of my lungs is operating at ALMOST full capacity while the other one is being compressed by a very large cancerous tumor growing in my chest trying to slowly kill me. So my knee jerk response to “rate your health today” was 75/100… THAT’S A B+…

Give your head a shake, McPhail!

Anyway, after 2.5 hour wait Amanda and I finally get a chance to see the doctor. He introduced himself, shook our hands, and quickly pulled up the most recent CT scan images. These images provided a bit of a shock.

Up until this point, I imagined a tumor to look sort of like a ginger root. Oblong and irregular with branches coming off it. Earlier, when the doctors told me that the tumor was 17cm in diameter, I wasn’t so worried because I imagined it sort of long and skinny. However, this was not the case. The tumor was shaped more like a pumpkin than a ginger root. A pumpkin shaped tumor 17cm in diameter… for the record, a volleyball is 20.7cm.

The doctor hadn’t told us anything yet, but he quickly gets up to leave to retrieve some more of my test results.

Just then, the head nurse walks in to take my blood pressure and heart rate. The first thing that leaves her mouth is about her TERRIBLE COLD! Amanda and I haven’t been able to tear our eyes away from the image on the computer. Our minds are racing with thoughts of what the doctor is about to tell us about the cancer, still in a little bit of shock from seeing the size of the tumor inside my chest. And the nurse says, pointing to her nose (red from rubbing with tissues) “with a nose like this I’ll give Rudolph a run for his money, right!?”

Read the room…

We left the room that day with more questions than answers. The doctor who we waited 2.5 hours to see didn’t receive some test results, so he said a grand total of about 15 words to us, told us he didn’t know what to do next, and left. We were told that we would get a phone call with our next step, and we were asked to leave. We were a little frustrated.

On the way out, we saw an overflowing waiting room and adjacent hallways filled with people of all ages with significant health problems. They were all waiting just like me, to see one of a few specialists running from room to room, trying to provide the best service they can to this huge population.

I had to take a step back, and think about how thinly spread these doctors and nurses are. Of course every patient going through that waiting room thinks that no one else’s problem could possibly be as big as theirs. Meanwhile the doctor is 2.5 hours behind schedule and he didn’t receive the documents he needed for my appointment, the nurse is wrestling through a very busy day with a terrible cold, and thousands of other people are performing processes behind the scenes, trying to keep people like ME healthy.

Everyone has their biggest problem.

The chances of it being nothing is….

I was sitting in a small room at the St. Boniface hospital with an Oncologist and a Cancer Care nurse. My wife wanted to be there, but this meeting was a surprise. I thought I was only going in for more blood work. We’ve had a long talk about my recent CT scan results, blood work, and my symptoms. The Oncologist says “At this point, the chances of it being nothing is…”

And that’s when my mind started racing.

He’s gotta say the chances of it being “nothing” is still really high. 85%? 90%? Everyone I’ve seen up to this point has told me that there’s nothing to worry about. My Brother and I looked at the situation the same way; “No point dancing ’till there’s music” he said. My family doctor, and all the nurses I’ve spoken to have nothing but stories of benign tumors and false alarms. Sure my Family and I have done some research on the internet, and things don’t look great… but you type symptoms of a common cold into Google and it will tell you to finalize your will and pick out a burial plot.

“At this point, the chances of it being nothing” the oncologist said “is about zero. If I was a betting man, I’d bet that you have Lymphoma, it’s very sensitive to Chemotherapy, and very treatable. Your life is not in danger but you’ll likely go through 6-12 months of treatment.”

A friend who I used to work with once described me as “Pathologically Optimistic”. So optimistic, it’s like a sickness. For the first time, I felt like my optimism was coming back to bite me. When you’re waiting for big news that could go either way, you prepare for all outcomes, but at that point I realized that my preparation for negative news was only done as a formality. I was expecting good news to come out of the Doctors mouth, before he even started the sentence.

I’ve lost 30 pounds since August, having severe night sweats and countless other symptoms, and I have a 17 centimetre tumor crushing my Left Lung… of course it’s not “nothing”, McPhail!

The Oncologist left the room, and I talked to the Nurse for a few minutes. I told her that I was happy to finally know what is probably going on, and that I’m very thankful that it’s a treatable form of cancer.

I thanked them all for their time, was livid at the cost of hospital parking, then went back to work to finish the day, and start giving people the news. It wasn’t until 2 nights later that it finally hit me, and I started sobbing on my wife’s shoulder.

Today I’m counting myself pretty lucky. All the people smarter than me (and there are a lot of them!) are telling me that it’s very, very likely treatable. Amanda and I travelled through Argentina and Chile for a month last year, so we didn’t have any major trips planned. And thanks to my sister-in-law, Cat, 6 months to a year off work isn’t going to hurt us too badly financially (if you’re curious about why, you can ask me, but I don’t want to get into it here).

Now I’m just looking foreward to my first big fight! Well… that might not be totally true. I was allegedly in a bit of a tilly at the Southgate bar one summer, but my memory of the event is shoddy, and the only real confirmation that it even occurred comes from some less than reliable bystanders. So let’s just call this my first big fight!

More to come…