Everything’s Coming Up Milhouse (or Roses if you weren’t born in the 80s or early 90s)

Nothing puts you on edge like waiting for the results of a completed cancer treatment, and I’ll be totally honest, I haven’t always handled it with as much grace as people think.

I’ve snapped at people who don’t deserve it, a dog food commercial with the right piano accompaniment will turn me into a sniveling puddle, and a while ago I pitched a hard-boiled egg at the kitchen wall with all my might. We’re literally still finding shells from my little outburst.

The times of uncertainty are the worst, and 2 major sources of uncertainty just came to a close. I’m already finding my mind to be a lot freer, and my emotions less volatile.

I recently had another PET scan to determine whether or not the cancer had returned again. This one was of particular importance because I had been 8 weeks without chemo. The last time I had an 8 week follow up scan, they found a little spot that was “probably nothing to worry about”… that was 3 regimens of chemo, almost a month in the hospital, and a stem cell transplant ago. So needless to say, the stakes were pretty high for this one, and I was on edge.

I met a young PET scan technician who repeatedly told me how healthy I look. Normally I would take the compliment and move on, but I couldn’t help but think how looking and feeling healthy has had absolutely no correlation with my actual health in the past.

We got on with the scan, which consists of lying motionless with your hands over your head for about 30 minutes. 30 minutes, alone with my thoughts, trying not to think about what they’re seeing on the other side of the glass.

When the scan ended, the young technician came in and said “Can you just stay in that position for a minute, we’re seeing something a little out-of-the-ordinary and we just want to make sure everything is accurate. We might need to re-scan a section”.

This news is coming from a guy who thinks I LOOK healthy. What is he seeing back there that’s “out-of-the-ordinary”!?

… Alone with my thoughts again for what seems like an eternity.

… Sooooo… am I going to make it through the night, or should I call the priest now?

The technician came back in and my heart stopped (figuratively… in most cases I’d assume this is a given) and he said “There is increased uptake in your left arm, have you been exercising?”. I had been to my first Aquasize class that morning! And I guess I had worked hard enough that my muscles were lighting up the PET scan.

So the results came in, and this is the second scan that I’ve had in complete remission! Cancer Free! But let me tell you about aquasize, this is a riot.

I’ve been going to The Rady Center, a community center in Winnipeg where I’ve made friends with one of the trainers who work there. He knows my whole story and kept telling me about water training. Apparently all the Winnipeg Blue Bombers are doing it and exercise physiologists swear by it.

I’m happy to try anything, so I woke up early with one of my good friends to go to one of these classes.

Not only was I the only Male in the class of 60 or so, but we were also probably the only people under 65 years old. Picture my bald pink head in a sea of white hair and pastel swim caps with matching nose plugs.

51hkjrv9bBLThere is an instructor leading the exercise up at the front, and you get to choose your difficulty based on how fast you go and how much water you are moving. I wanted to get a pretty good work-out for the day. So there I am thrashing around like Jaws attacking the ORCA, while Mavis beside me is flittering her arms and talking to her neighbor about her grandson’s new girlfriend.

I’m sure the rest of the class thought I was training for the U75 Aquasize national team.

I’ve also been through 1 cycle of Brentuxumab, the chemotherapy drug that will be administered every 3 weeks for the next year. It pretty much knocked me out on the day I got it, but I was starting to feel OK by the next evening.

Everything’s Coming up Milhouse!ds41k310qkzz

So it goes.

 

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Plot Twist! – Enter Brentuximab

I’m in for another year of chemotherapy.

I just stared at that first sentence for about 5 or 10 minutes before I could figure out how to write the second one.

The fact is, that if the doctor hadn’t recommended this regimen, I would have begged him for it. Here’s why.

Months ago, I found out that my cancer had relapsed too aggressively for radiation therapy. The only course of action was the high-intensity chemotherapy and stem cell transplant that I recently finished. I was also warned that MAYBE I would have to go on a maintenance chemotherapy drug called Brentuximab. At the time I thought, “Brentuximab… kind of sounds like a supervillain who’s hatching a plot to devastate an unsuspecting populace”. I also thought “I really, really don’t want that”.screen shot 2019-01-27 at 2.05.49 pm

As months and meetings with doctors came and went, there was always a whisper of this evil Brentuximab. As if lurking in the shadows, biding its time, it was unclear if or when we would ever meet. Unsure of whether it was a realistic threat or what might lead to our meeting, my only thought was, I hope to god we never cross paths.

 

In early December, I got some very promising PET scan results. The chemotherapy I had BEFORE the stem cell transplant had worked so well that I was in complete remission. I thought we had squashed Brentuximab before it reared its ugly head. Surely this scoundrel and I would never converge.

I received the stem cell transplant and high-dose chemotherapy, got discharged from the hospital after 20 days, and really thought that I was coasting toward normalcy.

**Plot Twist!**

Then, a few weeks ago, as if risen from the grave, rumors of Brentuximab were on my Doctors’ lips again. Obviously, this miscreant wouldn’t go down easy.

Luckily for me, a friend who works as a Nurse Practitioner was visiting for the weekend. We were able to log on to her medical database and find out what makes our so-called villain tick.

**Plot Twist #2**

As it turns out, Brentuximab isn’t the villain, it was just misunderstood all along! Brentuximab and I have decided to join forces against the true supervillain, Cancer (which could use a more evil sounding name in my opinion).

What it comes down to is, the research shows that this drug works. It’s particularly effective at reducing the chances of relapse in someone who has already had an aggressive relapse once. It also appears to be pretty well tolerated.

screen shot 2019-01-27 at 1.47.56 pm

I need to remind myself that I’m lucky to have access to medicines like these, and I don’t have to re-mortgage my house to get them. It’s also important to look at the big picture and realize that this treatment is bringing me closer to my family’s ultimate goals: a cancer-free life, and a baby or two once the smoke clears.

So it goes.

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.

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.