Well, That Was Weird – 20 Days on the Isolation Ward

Sitting down and trying to write this today makes me feel my limitations as a writer. I’m really struggling to summarize this experience. Up to this point, I’ve just been sharing stories, and that’s pretty easy, but trying to express how it feels to have a body stripped down the way mine has is a real challenge. It was excruciating, but somehow not as bad as I expected… so how’s that for clarity?

On the first day I had my PICC (or USB port) line put in. This is the line that allows the nurses to access my bloodstream whenever they need. What I didn’t know, is that they would be using a 42cm catheter extending through my veins from my upper arm to just above my heart. Every time I move my Left shoulder I pictured this thing wriggling inside my veins, something I never fully wrapped my head around.

The next 7 days in a row I was blasted with high-intensity chemotherapy. That was about as much fun as it sounds.

The following 13 days had no real pattern. I’d feel OK for a few days, then worse for a few days. My worst days were surprisingly just 3 days from the day I was discharged. We had NO idea what to expect on any given day.

The entire time (with the exception of 2 days) I was connected to an IV tower dripping fluid. It made an audible griiiiiind click, griiiiiind click, 24 hours a day, 7 days a week.  Every time I got up to use the bathroom, pick up a meal, or go for a walk, one hand was always committed to dragging this thing along. Imagine spending 3 weeks with an old vacuum cleaner tethered to your veins.

Similar to my previous treatments, nausea was probably my most prominent symptom and was comparable to what I’ve experienced in the past, but the lightheadedness was a new experience. The nurses would administer a simple test to monitor my progress. They would get me to try to stand up for 60 seconds. If I was able to remain standing for 60 seconds without sitting down or feeling like I was going to pass out, I would pass the test. I lost track of how many days in a row I failed this test. Being such a competitive person, stationary standing became my Everest. I remember one time I was pushing it as hard as I could at 45 seconds. There was a black border closing in around my field of vision as I was working so hard to stay conscious. I just wanted to pass the test so badly! I made it to 48 seconds that day when I finally sat down. A new record.

The isolation ward at the Health Sciences Center is not pretty. The tile in the bathroom is two tones of pink, one the colour of a discount farmed Atlantic Salmon, and the other more of a pastel pink that triggered memories of my grandmother’s ambrosia salad. On my best days, I would walk up and down the single hallway with Amanda. These walks would be the highlight of the week.

Washing myself was a major learning experience. I had a small washroom to myself, with a very small tub, and a handheld showerhead which I never used because for some reason they wouldn’t allow a shower curtain (I dunno… choking hazard). One of the requisite bathing moves (which I’ll admit took about a week to perfect) involved sliding my bum forward as far as I could in order to submerge my torso without bumping my head on the back of the tub. In order to do this, I had to extend my legs up the wall, halfway to the ceiling, and do sort of a quarter rotation hand-on-the-hip chicken wing kind of thing to keep my IV site dry. I plugged my nose with the other hand and thrashed my head around under the water to try to wash the soap off my face and head.

You’re welcome for that mental image.

Screen Shot 2019-01-01 at 2.09.47 PMI was discharged Yesterday, on December 31st and it feels absolutely amazing to be home! My hair is gone, but my facial hair and eyebrows haven’t really changed for some reason… so I look like Dustin Hoffman in “Hook” when Robin Williams stole his wig.

The doctors’ conservative expectation is that I’ll be back to “normal” in 6 months. Right now I’m just trying to set small goals, and take it 1 week at a time. This week’s goal is to make it downstairs to the table for most of my meals and go for a walk outdoors.

So it goes.

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Quick Update – Biggest News Since the Spice Girls Reunion Tour (depending who you ask)

bdff5585100ce1bfc38d1ca95c899bd3Today I had a PET scan. This is the type of scan that measures the size and activity of a tumor, and the stakes for this one were particularly high. The efficacy of my last few cycles of chemotherapy forecast how successful my stem cell transplant will be. If my most recent chemotherapy worked well, the stem cell transplant is more likely to cure me completely, and the chances of me needing to do “maintenance chemotherapy” is much, much lower. If the last few rounds of chemo didn’t work, and the tumor had stayed the same or grew, it would be fair to say that the finish line isn’t in sight.

I just got a call from my head nurse, saying the scan is great!

This means that the stem cell transplant has a good chance of curing me completely. During those really bad days, it’s going to be really comforting to know that we really are getting somewhere.

I don’t think the best writers in the world would be able to describe the sense of relief this news has brought… so I’m certainly not going to try, but I’m sure you get it.

So it goes.

Smile Today… Things Are About To Get Much Worse – Stem Cell Transplant

The next (and hopefully last) step of this cancer journey involves a stem cell transplant paired with 6 consecutive days of high-intensity chemotherapy. When this was proposed they gave me a binder explaining what to expect. Those pages could have been written by Stephen King.

After 5 days of injecting myself with an Alex Rodriguez load of bone marrow steroids, my blood was oversaturated enough with the necessary cells for extraction earlier this week. I went into a specialized room in at Cancer Care, and they pulled out two of the biggest IV needles I’ve ever seen. These things looked like bubble tea straws. They spent about 30 minutes digging around in my arm for a vein to accept the IV (while being told that relaxing will make it easier), then they did it again for the other arm. Blood was removed from my Right arm, cycled through a machine that filters out the stem cells, then reinjected back into my Left arm. They cycled 18 liters of blood. To put this into perspective, the total blood volume of a normal person is about 5.5 liters, so they did my whole blood volume over 3 times. I felt like “Bloodbag” in the first few scenes of Mad Max where he was hanging upside down and having his blood drained… I’ve decided not to include a picture for those who don’t get the reference.

Next, I’ll be getting a PICC line installed. This is like a USB port… but for people. They are going to put a catheter into one of my veins, and leave it there for 3-4 weeks. This way whenever they need to draw blood or administer chemo, they can just plug into my bloodstream through the PICC line without having to poke me and find a vein each time. For some reason, I really hate the idea of a tube protruding out of my skin that leads directly into my veins… On second thought, a reason isn’t that hard to come up with.

In order to have this procedure done, I will be admitted to an isolation ward at the Health Sciences Center. Anyone who enters the ward has to be screened by a nurse to make sure that they don’t have anything that could spread to any of the 15 patients on this specialized ward. After 6 consecutive days of chemo, I will literally have no immune system. ALL the cells that fight infections in my body will be dead, and all the cells that make those cells will be dead. This means that the normal bacteria in my GI tract could run rampant through my body and shut down entire systems… something as minor as a tooth cavity could ultimately lead to a life-threatening infection. I would tell you the names of the drugs, but I’m pretty sure they could be used in biological warfare. If you typed them into Google, I’m almost certain you’d get placed on the “No-Fly list”

If this were a home makeover show, they would be stripping me right down to the studs, digging up the landscape and doing a COMPLETE rebuild. You know those vaccines you get when you’re a child that last your whole life? I’m going to have to get all of those again because the cells that carry that information will likely be killed off by the chemotherapy meds.

I wonder if I’ll need to get baptized again.

After all of this, they reinject with the stem cells that were removed, my bone marrow will rebuild, and I will start to rebuild my immune system. Once I am able to walk to the bathroom and back to bed by myself (likely 3.5-4 weeks) I will get to go home.

I’m not going to go into detail with the likely side effects, potential risks, etc. because it’s just sort of horrifying. I’m trying to write the “not too depressing” cancer blog.

When I get home from the hospital, the fun doesn’t stop! I can’t be near pets, dust, aged cheeses, unvaccinated babies, or tofu that hasn’t been cut into 1-inch cubes and boiled for at least 5 minutes. That’s not a joke… those are actually in the Stephen King binder.

My stay in the hospital will begin on Tuesday the 11th, and my doctor projected that I’d be back to my regular self after about 6 months; but with a strong body going in, a healthy diet, and a lot of help from my family and loved ones, I’m ready to prove him wrong.

So it goes.

High Intensity Chemotherapy – As Advertised

torture-chair-530x720Please see the picture to the Right of the “Iron Chair” or “Chinese Torture Chair”. This could be described as history’s most painful stool. With its heyday in 18th century Europe, it was rarely used, and even more rarely seen, but you can imagine how painful it was for those seated when it was called to action.

My first time going through chemotherapy, my body responded better than expected. I kind of expected this time to be no different, but for the past couple of weeks, I’ve been in pretty rough shape. I had a 6-hour session at Cancer Care on October 29th, then before I was feeling any better they blasted me again on November 5th. Yesterday, November 13th is really the first day I’ve felt like myself. In the 16 days following my first treatment, the most exciting thing I’ve been able to do is pit two aristocratic Southern families against each other, and while they were at war with each other, rob them both blind and escape on a stolen locomotive in a blaze of gunfire. You read that right… I’ve been playing a lot of XBox.

Right now, the hardest part about all of this is knowing that next time is going to be worse… and the stem cell therapy will be even worse after that. The anti-nausea meds are working better than last time, but the main side-effect is migraine headaches… so take your pick.

We weren’t sure if I was going to get any good days before I start my next cycle of chemo on the 19th, but now it looks like I’ll have 4! The fictitious aristocrats and 13-year-old online gamers that I’ve been dominating had better make them count.

So it goes.

 

Bad News and Good News…

I have some bad news, and some good news.

The bad news is that we’ve recently been told that the tumor in my chest is too large, and too close to my heart to treat with radiation. As a result, I’m going to have to do a regiment of high intensity chemotherapy and a very aggressive stem cell treatment paired with more high intensity chemotherapy.

The good news is that I’m winning my fantasy hockey pool.

 

This news came as a huge shock to the family, and it’s taken all of us about a week to fully process. To be honest, this time has been harder than the first time. It’s difficult to know that my previous experience was Chemotherapy with training wheels…  what’s coming is Apollo 7.

It’s really tough to recognize that my experience is getting closer to those stories we’ve all heard that don’t have a happy ending.

On the bright side, the tumour is still smaller than it was when we started chemo the first time, it hasn’t spread to other systems in my body, there are still lots of proven treatments available to me, and Ryan Getzlaf of the Anaheim Ducks has returned from his groin injury.

Here are some of the images that have been pervading the thoughts of myself and my family over the last year.

Q: How do you know if someone is on a fad diet?

A: Oh don’t worry, they’ll tell you all about it.

Yeah, I started the Ketogenic diet. There is some pretty good evidence that s

uggests a low carb/starch/sugar diet is good for putting metabolic stress on cancer cells (particularly lymphoma cells). So now I wear a cravat, and spend all of my social interactions talking down on people who eat normal things. It feels pretty great.

 

So it goes.

 

 

I Don’t Write When I’m Happy… and Here We Are

On the bright side, you guys are going to have more of my shitty writing to read.

I’m starting to look at my doctors like cheating boyfriends. I love them, and I appreciate what they do, but I’m having a hard time trusting them. For almost a year, I’ve been hearing “It’s probably nothing”,”ignore that little spot on the PET scan”, “this is probably just a minor infection”, “You MUST have a lipstick in that shade”… I may have embellished that last one.

cheating bf

I feel like the doctors know when to be suspicious, and they’re not always sharing their suspicions with Amanda and Me. Part of me thinks “Dude, just be honest with me, I can handle it and I want to prepare for the worst”, and the other side of me thinks “Amanda and I just had a few really great months together; and the last few months wouldn’t have been nearly as great if I knew that the cancer wasn’t gone and that it’s slowly growing next to my heart.” I so badly wanted to believe my doctors that I just did, and maybe my family is better off because of it… like a cheating boyfriend… you know?

Analogy aside, I have endless respect for my doctors and what they do. I don’t think I have what it would take to be an Oncologist/Hematologist.

The cancer isn’t “back”, but it was probably never completely gone. It’s now just a couple tiny spots in the left side of my chest, and they’re going to get it with radiation therapy. Now that we’re doing some research, we’re learning that when you’ve had a tumour of my size, it’s very normal to follow up chemotherapy with radiation. Radiation is only avoided in “special cases”.

So I’m not special.

My preschool teacher always told me I was… was she like a cheating boyfriend to!? Maybe I’ll come back to that.

I only got this news a few hours ago, so I’m not really sure what’s coming next. All I know is that I’ll be getting radiation therapy every day for 3 weeks, and I’ve been told by a few friends that radiation is a walk in the park compared to chemo… so let’s buckle up for another roller coaster.

 

So it goes.

 

 

 

Last Blog Post… Probably Ever

IMG_0032When things are taken away from you, it becomes very clear what you take for granted. Like eyebrows… man, those little guys did a great job!

Another thing that I’ve taken for granted is minor health anomalies. Now that I’ve had Hodgkin Lymphoma, I’m at a much greater risk for it coming back as a more aggressive form. I feel like every time I get chest congestion, wake up sweaty at night, or lose some weight, it will be impossible not to assume the cancer is back. I’ve become very used to watching my weight fluctuate with no real consequences. I’ve weighed as much as 240 pounds, and as little as 9 pounds 8 ounces, so this is something I’ll have to keep an eye on.

Now I’ve completed 12 successful treatments of chemotherapy in just under 6 months. I’m allowing myself to do a little bit more research on the type of cancer I had. While going through the diagnosis and early stages, I really didn’t want to know all the nitty gritty facts, but now I’m interested. Of all the research I’ve done, this stat really stood out to me. “In 2013, an estimated 9,290 cases of Hodgkin lymphoma were diagnosed in the United States, and 1,180 patients died from their disease. The median age at diagnosis was 38 years” (Cancer Network Home Journal of Oncology)

A little while ago, a friend of mine asked me if I am coming out of cancer treatments with some kind of life altering epiphany. After a bit of thought, I’ve decided that the answer is “yes”, but kind of the opposite of what some might think.

Before my diagnosis, and learning that my cancer could likely be cured, there was about a month and a half where only 1 thing was known. There is a very large, fast growing tumour in my chest. This knowledge lead to a recurring thought that couldn’t be avoided: “Sometimes cancer kills people… What if this kills me?.” Every time this question occurred, my mind always brought me back to the same answer. I found solace in believing that I’ve squeezed more love and joy into my 29 years that many hope to in their entire lives. Of course I was going to fight to my last breath, but if the cancer took me, I’d be able to go with no regrets having lived a great life. This is a thought that I’ll be able carry with me for the rest of my days.

Now that cancer treatments are done, I’ll focus my writing on all the other problems faced by white heterosexual males from upper-middle class two-parent families in Canada.

Just kidding, I’m done.

 

So it goes.