Pain, Fever, Rash, Two Trips to the Emergency Room, and Amazing Friends

It's been two weeks since I was released as an in-patient from the hospital, and a lot has happened in that time, in terms of side effects from the chemo. It has definitely been a different experience than last time. In fact, I think I told my parents at one point that I was having the "worst week of my life," and thinking back on it, I wasn't exaggerating. Here's a timeline of the last 14 days:

Wed, Sept. 24th - Sat, Sept. 27th
I had my "Day 1" of chemo in the hospital on Monday and Tuesday, because I had surgery on Sunday and they needed to monitor me. Kait's parents drove me home on Tuesday evening, and we had pizza for dinner. I was pretty out of it and only had the appetite for two pieces. If you know me, you'll know that is bad news!

The next four days were a blur of confusion and fatigue, which was about the same as when I was going through chemo two years ago. I didn't feel nauseas at all, but was very "out of it," and I didn't do much other than sleep and eat a little bit. My appetite wasn't too bad, but I definitely lost some weight.

When I'm in this state I hate being out in public. Kait says I don't seem that different that usual, but I feel different... and stupid. I had to take my car to the shop for an oil change and some brake repairs, and as I listened to the words come out of my mouth I felt like I was just babbling nonsense. The same thing happened when I ran into a couple people I know, at Thrifty Foods. I open my mouth to talk, and then I feel myself blushing because I am so self-conscious about how awkward and stupid I sound.

Sun, Sept. 28th - Wed, Oct. 1st
I woke up on Sunday morning with some pain in my chest. It was uncomfortable but bearable; however, as the morning dragged on, the pain got worse. Every time I took a breath it felt like what I imagine a broken rib might feel like when a person breathes. I complained enough about it that Kaitlin said I should go to the hospital. Not wanting to do that unless it was absolutely necessary, I phoned the hospital and asked for the oncologist who was on-call that day. She called me back within a few minutes and I described the pain, through slightly-gritted teeth. She said I needed to go to the emergency room because the pain could be a blood clot in my lung, and she would call ahead to make sure I could get in quickly without waiting.

At 1:00 I drove myself to the emergency room at Victoria General Hospital. When I got there, the nurse took all my vitals and I was sent for some blood work. Then I went to a waiting room and sat for awhile until another nurse checked out my vitals and said "now you get to wait to see the doctor."

I waited for awhile, until the doctor was able to see me. He took an ultrasound of my lungs and heart and said he didn't see anything alarming, but I would need to go for a CT scan. So the nurse put an IV line in my arm, and I had to wait some more.

Sometime around 5:00 I went down the hallway for a CT scan. Then I came back and waited some more.

After about an hour, the doctor came back and told me that my CT scan results were normal. He said that the only thing he could think of is that my tumour was breaking down quickly from the chemo, and basically tearing at the things it's attached to in my chest. He said that my CT scan actually showed a small decrease in the size of my tumour which was great news, but being in so much pain prevented me from really caring. Anyways, I was given a prescription for Tylenol #3, and sent on my way.

Total time in the Emergency Room: 5 hours. Result: T3s.

The T3s did absolutely nothing for my pain, and as the evening wound on, it got worse. I was at the point where I couldn't take more than tiny gulps of air because every time I took a breath it felt like I was being stabbed.

I didn't sleep, and Kaitlin said I was whimpering like a dog all night long. By Monday morning the pain was radiating to the left side of my neck, and down my shoulder. It was all I could think about. It was completely consuming. It was mind-numbing, vision-blurring, excruciating pain. I didn't care about anything else except for wanting it to stop. I have never experienced physical pain like that in my life, and it wouldn't go away.

I had my "Day 8" chemo on Monday morning, so Kaitlin drove me to the cancer agency. I told the lady at the front desk what was going on, and a nurse whisked us away to a private area where she checked my vitals, and got me to describe everything that had transpired over the last 24 hours. I saw TWO oncology doctors, who both looked at my blood test results and CT scan, and said everything looked normal and again - the only thing they could think of is that the tumour was breaking down, and irritating everything around it. One of them said that if the pain got worse (like that was possible) that I should go back to the ER, because the tumour-breakdown could possibly cause some internal bleeding. But for now, all they could do is help manage the pain.

I was given two shots of morphine, plus a prescription. I completed my chemo, and went home.

For the rest of the day and throughout the night I took as much morphine as I was allowed to take, and it numbed the pain slightly, but not much more than that. The oncologist phoned me in the morning to see how I was doing, and promptly upped my dose. Taking 15mg every three hours helped the pain a lot more, and I spent most of the day sleeping. I got up once and hugged the toilet bowl, but the nausea passed within 10 minutes and I didn't throw up.

I slept on-and-off throughout the night, but woke up on Wednesday morning tentatively feeling like the pain wasn't quite as bad. I took a slightly-smaller dose of morphine to "test the waters," so to speak, and lay around on the couch for most of the morning.

After lunch I started to feel a bit shaky and cold, so I took my temperature. I had a fever of 38.3°C.

Shit.

A fever indicates possible infection. Fever is concerning if it occurs at a time when the white blood count level is low (i.e. after chemotherapy) because during this time the body's normal defences against infections are down. An infection in this state can be life-threatening, because it can lead to sepsis. So even though my fever wasn't that high, I needed to go to the emergency room.

The emergency room is no fun, so I called the cancer agency first, just to make sure...

...and of course they made me go.

I have a "cancer patient" letter that gets me into the ER pretty quickly if I have a fever, so within 15 minutes of arriving, I was in an isolation room getting my blood taken, and vitals checked. Within 20 minutes of that, they had the results of my blood test. My white blood cell and neutrophil counts were high enough that if I did have an infection, my body would be able to fight it off as it normally would. The doctor told me that the fever could also be a side-effect from my chemo on Monday, but even if it is merely a side-effect, if it happens again I will need to go to the ER again.

Hopefully this doesn't happen every time!

Thu, Oct. 2nd - Wed, Oct. 8th
By Thursday morning my fever was gone, and my chest pain had subsided considerably. I took one morphine pill when I got up in the morning, and that was the last one.

By Thursday evening I had developed a rash on my thighs, waist, and back. I checked my chemo notes, and indeed, rashes are a common side-effect of Gemcitabine. I was feeling pretty out of it again, so I didn't do much on Thursday and Friday.

I felt half-decent on the weekend! We went for an early Thanksgiving dinner at Kait's aunt & uncle's house in Mill Bay on Saturday evening, and on Sunday we bought 25 lbs of apples at the Metchosin Apple Festival!

On Monday I felt pretty good so I did a tiny workout: 100 push-ups, 20 pull-ups, and 50 squats. It was pretty hard do even do that, (forget even thinking about lifting weights) but it felt good to be able to exercise at all.

On Tuesday morning I woke up feeling good, and thought I would attempt my regular 6km running route. I made it to 2km and felt like I was going to fall over, so I ended up walking a shortcut home. Total distance: 3km. Oh well.

I did have some fun yesterday...

As you may know, I got a music contract this year but had to go on sick-leave so it was reposted. Kait ended up getting the contract, and I will return when my treatment is complete and I am well enough... hopefully by the Spring. Anyways, it works out well because I can help her a bit from home. She is currently doing a "STOMP" composition project with a couple of her music classes, and she asked me to make a tutorial video to show the kids. This is what I came up with. The exciting part starts at 4m:15s, but you could also just watch the whole thing 'cause you might learn something:



Anyways... I've made it to today, and that was a long blog post! I guess I should update it more regularly so you don't have to read such a novel.

I always say that.

Thank-you to everyone who has been donating to my page for the Leukemia & Lymphoma Society of Canada's "Light the Night Walk" Victoria. At the time of writing this, I have fundraised $4,909 towards my goal of $5000. Special thanks to Greg and Ruskin Construction for their huge $1,000 donation!

Thank-you Ruth-Anne and the staff of Sooke Elementary for the well-wishes and Superstore gift card. I don't even work there anymore and you folks are still taking care of me!

Thank-you Venessa, for stopping by our house yesterday with a get well card and literally hundreds of dollars in gift cards for Thrifty Foods, M&M Meats, Tim Hortons, and the Little Thai Place restaurant... from her, Jeff, Leta, Joey, Meaghan, Ryan, Sarah & Chris. You are all amazing. Seriously.

Thank-you Shannon, for taking the time to cook us a dozen (or more!?) meals for our freezer. The stew was so good and I can't wait to eat the rest! If I had it my way, we'd eat all of the meals at once, but Kait says we need to save them for the weeks where the chemo makes our lives suck. I think she's probably right.

That's all for now. Thanks for reading my ramblings, and let me know if I need to correct anything... I don't proofread when it's this long!

Christopher