Countdown to "CHRIS 2.0"

My parents and I went to meet my stem cell transplant doctor for the first time on Tuesday. Even though I've been dealing with the whole "cancer thing" for awhile now, the meeting felt as overwhelming as the first time I met my oncologist in 2012.

My prognostic markers are all favourable, which is great news: 

• The period of "disease control" was 2 years. This means that after my six cycles of chemo in 2012, it was nearly two years before I relapsed. Anything more than one year is good news.
• Even though I have only had one cycle so far (stupid low neutrophils) I have shown a good response to the chemo this fall. My cough is gone, my wheeze is gone, and I can't feel a tumour in my chest anymore. If I was not showing a response to this chemo, my transplant would likely fail.
• I am young and healthy. If I wasn't, the transplant could be less likely to work, or I could experience unwanted complications.

Taking all these factors into consideration, the chance of the transplant curing my cancer is somewhere between 50% and 60%. My oncologist had previously said that if the transplant doesn't work there would be other options we could explore, but the stem cell doctor expressed a much graver opinion:

"If you are not cured by the stem cell transplant, the mortality rate will unfortunately be very high."

It's very upsetting to take in something like that.

Since the meeting, I have talked to a few people who have reminded me that there are other options, that everyone is different and that I am not just "another statistic." Those things are ultimately what I believe as well, so I will continue to be strong and optimistic; however, the doctor's words are stuck in the back of my mind and probably will be for a long time.

At the meeting we also learned more about the process of my stem cell transplant. It is happening a lot quicker than I thought it would, which means I will have only one more cycle of my current chemotherapy before it begins. I was initially worried about this because the original plan was to do 3-4 cycles, but apparently my cancer does not need to be in complete remission before I do the transplant. What matters most is that my body shows a response to the chemo.

Here's a basic (tentative) outline of what's to come:

• Next week and the week after I will complete Round 2 of my GDP-R chemo at the Victoria Cancer Agency. Then I have some time to recover before my transplant.
• Starting the week of November 3rd I will need to have a bunch of vital organ tests done in Victoria. This is to make sure I don't have any major problems that could prevent me from having a safe transplant.
• On November 13th I will go back to Vancouver to meet the apheresis doctor. This is the person who will be in charge of collecting my stem cells before the transplant.
• On November 20th I will go to Vancouver again for stem cell collection. I will be hooked up to a cell separator machine via intravenous tubing. My blood will flow out of one arm to the machine where it will spin the blood around at high speed. The spinning separates the different components of the blood into layers based on their weight. The stem cell layer will then be collected and frozen for later use. The remaining blood will be returned to me via the other arm.
• On November 25th I will be admitted into Vancouver General Hospital.
• First, I have a Hickman line inserted. This is an intravenous device that is used to give fluids, blood transfusions, medications, and the stem cells during the re-infusion process. I will be given local anesthetic and a vascular surgeon will insert the line into a large vein in my chest. The intravenous tubing follows the vein all the way to my heart, and the whole thing will stay attached to me until a couple weeks after my transplant.
• On November 26th, I will begin my high dose chemo which is called BEAM. I will have infusions several times every day for six days. This chemotherapy will completely destroy my cancer. It will also destroy every blood cell in my body. Yes... every... single... blood cell.
• Within 24 hours of completing my high dose chemo, I will receive my stem cells back. This process only takes a few minutes and there isn't much to it.
• Because the high dose chemo will kill everything off, I will need to receive red blood cell transfusions and platelet transfusions. The risk of infection will be extremely high, so I may need intravenous antibiotics. As well as the usual hair loss, nausea, and vomiting I will also have mucositis, which is inflammation of the lining of the gastrointestinal tract all the way from my mouth to my derriere. Apparently this will be a real "shitty" time.
• I will then need to stay in the hospital for 2-3 weeks until my blood counts come up a bit, and I am eating and drinking and "well" enough to be discharged. I will need to stay in Vancouver for another week or so after this, because I will be going back to the hospital every couple days for follow-up tests.
• Sometime approximately 4-5 weeks after being admitted to the hospital I will be able to return home to Victoria to finish my recovery. I will be sick and fatigued anywhere from 3-6 months after my transplant, and it can take up to a year to feel completely normal again. Nah... forget that part... I'm usually pretty quick to get better! ;)
• At various points between three months and two years after my transplant, I will need to receive all my childhood vaccinations. Since the transplant is essentially a COMPLETE reset of my immune system, I will no longer have the disease immunity that I did beforehand.
• Three months after my transplant I will get a PET scan to determine if the cancer is gone. And then we will hope and pray that it NEVER COMES BACK.

To sum up: For five weeks, beginning at the end of November, I will go through a high dose chemo and stem cell transplant process that will eliminate my cancer and completely reset my immune system. By 2015 I will essentially be "CHRIS 2.0" .

And then I will have a long, tiring road to recovery.

That's a lot of writing... it's time to make dinner. Before I sign off though, I want to send out a big thank-you to my new cancer-fighting friend Samantha. She saw my story online and reached out to me when I was feeling super overwhelmed yesterday. She introduced herself on Facebook, asked for my number, and then took more than an hour of her time to pick up the phone and call me. There is nothing quite as inspiring as trading stories and sharing hopes and fears on the phone with a complete stranger. Thank-you, Samantha!!!

Christopher

Stem Cell Transplant

I was in Vancouver today to meet my stem cell doctor for the first time. Information overload. I will write a post about it tomorrow!

Chemo Postponed... Again!

Kaitlin and I were on our way to the cancer agency this morning for my second cycle of chemo when one of the pharmacists called to tell me that she was looking at my blood work from yesterday and my neutrophils were still too low to have chemo; in fact, they were lower than last week - 0.45. I talked to my oncologist and he said that since my counts were evidently still going down, it would be risky to do chemo this week because it would increase the chance of life-threatening infections.

Just like last time, this means that I will need to start taking Neupogen each time I have chemotherapy. Oh well... I'm a pro at subcutaneous injections now.

The good news is that this part of my treatment (GDP-R chemo) is not the curative part, so needing to postpone it a couple times will (hopefully) not make a difference to the outcome. The main purpose of the chemo I am doing right now (errr... not doing...) is to shrink my tumour down to a point where the High Dose Chemotherapy and Stem Cell Transplant will be effective.

Another good thing is that this means I will be feeling good for the Light the Night Walk next weekend, but as I mentioned in my last post, the frustrating thing is my whole life is based around my chemo treatments, so when they change everything has to change... and not always for the better!

I am currently on the ferry heading to Vancouver. I will be meeting the stem cell doctor tomorrow so I will probably do another blog post this week once I have more information about that part of my treatment.

Here's a couple nice pictures of Kaitlin and me at the pumpkin patch this past weekend:

Thanks for reading,
Christopher

The Waiting Game

I went to the cancer agency at 9:30 AM to start my second cycle of chemo but the nurse told me my blood work from yesterday showed that my neutrophils were too low to proceed. They won't give you chemo if your neutrophil count is below 1.0, and mine were at 0.65. This happened last time too.

Anyways, they sent me across to the hospital lab for another blood test to see if my counts had come up at all since yesterday. I waited more than an hour to get it done. In that hour, they got through nine people before me. Oh wait... it wasn't even nine people, because a few numbers they called weren't even there! Seriously! A blood test takes two minutes!

Then Kaitlin and I had to wait another hour for the results.

At 1:00 PM a nurse came by and told me that my counts were actually even lower today than yesterday, so I would have to wait a week to start this cycle.  It was really frustrating to hear that, because my entire "regular" schedule (i.e. the rest of my life) is based around when I have chemo.

So now the plan is to go for another blood test next Sunday, and then start my second cycle of chemo on Monday. Then as soon as it's done, Kaitlin will drive me to the ferry, and my parents will pick me up on the other side. I'll spend the night at their place in Langley, and on Tuesday we'll go into Vancouver to meet the stem cell doctor for the first time.

Mom said "You're taking the ferry right after you get chemo? Make sure you bring a barf bucket!"

Thanks mom.

The only good thing from all this is that... well... now I have another week of feeling alright until I have to do chemo again. Even though my neutrophils are ridiculously low and I have no defence against infection (so I probably shouldn't go out in public) I still think I might get out and have some fun! ;)

Here is a hilarious squirrel photo I snapped yesterday. It's entitled "LOOK AT MY NUTS"

Thanks for reading!

Christopher

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