Cancer Update – Biggest Result Since the Toronto Raptors Won in Game 6 over Golden State

Sooooo…. it looks like December 6th, 2019 was my last chemotherapy treatment.

A lot has happened since I wrote on here last, and I’ve got to say my mind has been speeding a little out of control since I was advised to end chemotherapy early due to some crazy symptoms ramping up (yeah… I’ll get to that). The other day when I was back from the hospital after Amanda gave birth to our twins (I’ll get to that too), I was having a shower. We had been in the hospital for 5 days, and I was really looking forward to shaving and washing off all the baby vomit and urine that I’d been showered in over the previous 5 days. But there was a lot to do, and a lot to figure out… namely my upcoming PET scan (which I got the results of today… and yeah, I’ll get to that too)

So anyway, back to what’s important. I was in the shower and thoughts were racing through my mind. I reached for the shaving cream and started spreading it on my face because I hadn’t shaved for 5 days. As I was doing this, I couldn’t help but notice how smooth my skin was.

I stood there dumbfounded with my jaw on the floor for a few minutes. There was quite a bit of stubble on my face a minute ago… where did it go? The water was beating against my back, and I’m trying to make heads or tails of where the hair on my face went.

I must have shaved less than 5 minutes earlier, and I still have absolutely no recollection of doing it.

Here’s what’s been on my mind.

I have twins boys now and I couldn’t be happier to be a father. This is something Amanda and I have wanted for a very long time. All I can think about is that I want to be at my best for these boys. I want to have the energy to teach them and play with them whenever they want me. I know it’s not a good thought, but I didn’t think that I could be the man that our babies deserve while going through chemotherapy. It’s the happiest time in our lives, but there was an underlying threat that couldn’t be ignored. I had a PET scan on Monday. This was the scan that would determine whether we’ve been in complete remission for over a year,  or the scan that tells us that cancer treatment may just be a fact of life, from here on out. The research says that with Brentuximab, the drug I was on, 1 full year of remission drops your chances of relapse dramatically.

I’ve had so many PET scans now, that I’ve genuinely lost count (this will be the 6th, I had to go back through our records to check). But with our babies the stakes seem a lot higher now. The cost of not being around or not being my best self feels so much greater. However, seeing Amanda give birth to our twin boys without an epidural or any pain medications was awe-inspiring. The experience was nothing short of transformative, in so many ways. If she can do that, I can handle whatever is coming my way.

Today, we found out my scan was completely clear. No more cancer, this marks the all-important 1 full year of remission. The end of a battle that’s lasted over 2 years.

I’m not even going to try to explain the emotions brought on by this news. I’m sure you get it. I don’t think that Margret Atwood, Robert Frost, and Kurt Vonnegut all rolled into one would be able to describe the way my loved ones and I are feeling right now. Maybe this picture does it?

screensot bnaw

Leading up to this scan was no cakewalk. Whoever’s in charge decided to play a really dirty trick by giving the symptoms of effective chemotherapy treatment the same side effects as an active malignant tumor:

  • Reduced appetite – Side-effect of chemotherapy. Unexplained weight loss – Symptom of lymphoma… imagine the way our minds were racing while watching weight falling off me AGAIN! I’m down 20 pounds in a month or two without changing my diet or exercise routine. Amanda and I would be holding back tears pretty routinely after I weighed myself in the evening.
  • Night Sweats – Side-effect of chemotherapy. Night Sweats – Symptom of Lymphoma. In recent days I’ve woken up soaked. LITERALLY soaked. I mean water and salt stains in a body-shaped oval on our sheets and pillows at 3 am. Every time it’s happened I dry myself off, lay down some towels or a bathrobe, and lie in bed with memories of all the times this has happened before I was diagnosed.
  • Tightness in the chest – Side-effect of chemotherapy. Tightness in the chest – side-effect of Lymphoma. This was the symptom that initially lead to my diagnosis in late 2017. Any time I’d take a deep breath past about 70%, it would get a sharp pain and have to exhale or cough it out.

In addition to these side effects, I’ve been experiencing muscle weakness and numbness in my arms and legs. This is a major pain in the ass. My job requires me to do a lot of fine dextrous work with my fingers. Imagine trying to button up someone else’s shirt with one hand tied behind your back and no feeling in your fingers. This is kind of a regular occurrence at work for me. I don’t have much sensation in my legs from my knees down, and the muscles that lift up my feet are very weak. I’m always catching my toes on rugs and stairs and stuff like that. Any hopes of playing basketball or volleyball are out the window until this resolves.

Now, we’re just going to find out what life looks like without cancer treatments. It’s been two years since the “next treatment” has been looming. Time to find out what the “new normal” looks like where we get to subtract chemotherapy and add twin boys!

So it Goes.

 

Role Reversal

Amanda and I have switched roles. This time she has something growing in her abdomen and she’s the one who will need to be looked after.

A while ago, some very generous friends gave us a sum of money to help out the family. It was intended to be used for a SkipTheDishes gift card for food delivery, but we used the money for something else. We didn’t stray too far from it’s intended use as what we bought still fills the belly, needs to be delivered, and was used to hire professionals to do something that is conventionally done at home.

I hope our friends aren’t too disappointed to know that instead of a few dinners, we bought a baby instead!

As I’ve mentioned before, Amanda and I aren’t able to have a baby naturally while I’m going through chemotherapy due to an increased risk of birth defects. In all likelihood, we’ll never be able to conceive naturally after the bone marrow transplant wreaked havoc on my system 6 months ago. So we saved up some of my little gentlemen before chemo began (link to that post: https://wp.me/p9sPOV-y), and recently got the help of the friendly local fertility clinic.

Conceiving with the help of a fertility clinic is quite a bit different than conceiving naturally, it involves a lot more appointments (outside of the bedroom) and trips to the pharmacy. For one of my trips to the pharmacy, I needed to pick up 3 items: Letrozole (a medication used to promote ovulation), prenatal vitamins (to promote healthy growth after conception)… and condoms to COMPLETELY contradict the intended use of the medications I was buying. The young pharmacist ringing my items through looked at the items, back at me, back at the items, then back at me with a pleading look. He paused for a while, clearly asking himself “how the hell do I navigate this situation!?”.

The pharmacist finally spoke. “uhhhh, do you have any questions about these items?”

I decided to screw with him. “Naww, I’m good thanks. Is Visa OK?”

The pharmacist, clearly puzzled, decided to take a different approach “Is the Letrozole for your partner? Have you discussed the impact it’s going to have?” He took the pill bottle, points the label at me and slid it cautiously across the counter. The pharmacist’s eyes were begging for some kind of clarity as perspiration began to collect around his peach fuzz mustache.

“Yup, we’re just fine” I replied as I handed him my Visa.

He took the card and froze for a few seconds. He wouldn’t put the card in the machine.

I decided to put the poor guy out of his misery and gave him a brief explanation of why this combination of items was necessary. We both had a good laugh about it as he told me how confused he was.

Then came the big day to thaw out my little gentlemen and put them to work! The problem was, between chemo, blood work, and doctors appointments, Amanda and I had both fallen behind at work. Amanda very sweetly offered to let me stay back at our clinic and get caught up on work while she went to the appointment. I declined… Call me crazy, but if my wife is about to get impregnated I’d like to at least be in the same room.

So we went to the fertility clinic together on the big day. We were sharing the large waiting room with one other woman who was very audibly slurping her morning coffee. A nurse came out and calls “Amy and Wayne”.

The woman who we learned was named Amy stood up and asked for clarification. “Sorry, who?”

The nurse repeated “Amy and Wayne”

“I’m Amy, but there’s no Wayne in my life. I mean I work with a guy named Wayne but he’s really not involved in this process. Do you have the right person?”

The nurse looked at her chart, and left without a word.

Amy’s next sip of coffee echoed through the halls of the otherwise silent clinic.

The nurse came out again and asked for Amy to join her in the clinic room. She was gone for less than a minute and returned with a wry smile. She jested with us that they had the wrong Amy again.

At this point, I’m starting to lose my chill a bit. The staff is about to grab a vile from the back room and inseminate my wife with it… not the best time for a clerical error!

SSSSLLLLUUUUURRRRRRPPPPPPP…

Next, the nurse came out and called Amanda, so we both stood and walked toward the clinic room together.

Her folder said Amanda MILLER!

I was ready to rip the door off the hinges and walk out.

Luckily the next time, they called the CORRECT Amanda. The nurse thought I was insane by how thoroughly I was checking and re-checking the spellings, medical numbers, and dates of birth on her papers and… the vial.

Once we found out that Amanda was pregnant, I sent the captionless ultrasound pictures to a friend of mine to tell him about the good news. It was radio silence for quite a while, and I figured he was just confused by the picture… which was true, but for a different reason. He responded “I don’t mean to be insensitive, but I’m totally lost… Is that a baby, or more cancer?”. He must have been really unsure if he was supposed to send condolences or congratulations!

I’m realizing that my number on the call display hasn’t really been associated with good news for the last couple of years, but it’s a real joy to share good news for a change! As the phone was ringing to tell my Aunts and Uncles I could imagine their conversations when they saw it was Me on the line:

Uncle: “Hey, it’s Andrew’s calling”

Aunt: “Oooooh shit, what could it be this time?”

Uncle: “Well you know the drill, I’ll get the Kleenex”

Aunt: “Sounds good, I’ll get Father Jensen on the phone”

As for cancery stuff; I’m still doing chemo every 3 weeks for the next 9 months or so and it’s about as much fun as it sounds.

But back to the food analogy! Do you ever receive your bill at a restaurant and get the pleasant surprise that you got a deal without knowing it? It turns out there must have been a BOGO deal at the fertility clinic… buy one, get one free!

ezgif.com-video-to-gif

Yup… TWINS!

So it goes.

 

 

The Cancer Card

Sometimes people ask me if I “play the cancer card”, and my typical answer is “absolutely”. Here’s a long, round-about reason why; explained by stretching two poorly connected concepts.

Back in 2006 or 2007 while I was working on my undergraduate degree at UBC in Vancouver, I went to a friend’s birthday at a popular bar on Davie street. If you know Vancouver at all, you’ll know that Davie street is popular amongst the LGBTQ+ community and this was my first experience at a gay bar.

While I was waiting for the bartender, a young man came up to me and offered to buy me a drink. My knee jerk response was to say “no thanks”, and explain that I’m not interested in men… but then I got to thinking. How many times had I bought a drink for a woman who wasn’t interested in me? 

Buying a drink for a woman in order to strike up a conversation is not something I ever did frequently, but maybe a small handful of times. I thought if Karma exists, maybe this is my chance to level things out on the drink-buying front (I feel obligated to mention that drinks at this place were about $12 each… a life-altering sum of money at this stage of my life).

So I accepted the drink, chatted with the man for a good while, thanked him, then excused myself to rejoin my friends.

I guess the moral of the story is this: Buying a drink for someone who isn’t interested in you is at least 99% shitty (like being diagnosed with Cancer); but if the universe offers you an opportunity to make up that remaining 1% in your favor, I say take it (I told you this one was a stretch… but that’s how it works in my mind!).

Am I proud of this story? No… But I like to think that the gentleman at the bar bought a drink for his future husband soon after our encounter.

Cancer Card

“Playing the Cancer card” isn’t about getting sympathy, it’s about dampening the blow of being diagnosed with Cancer, however minimally. Like when Amanda and I had to cancel a big surprise trip she had planned for my 30th birthday due to my relapse. We told airlines and ticket vendors the reason we were canceling and offered medical documentation in case they needed it so they knew we weren’t trying to scam them. Many of the businesses cited their cancellation policy and were unable to help us, but a select few were able to make an exception and provide us with a refund. Still a very dark cloud, but I’m not too proud to smile at the silver lining.

Life for us is getting as close to “normal” as it’s been in a year and a half. I am scheduled to get chemo (with my misunderstood cancer-fighting partner, Brentuximab) every 3 weeks, but there have been a few delays because my immune system has been too weak to receive chemo. I’m working 20 to 35 hours a week, playing basketball and ultimate frisbee, and helping a friend coach a basketball team of 12-year-old boys.

Most importantly, in a few days, Amanda and I are going to be heading to Morocco for a little under 2 weeks! Maybe this is the universe offering consolation for the trip we had to cancel before my last birthday?

So it goes.

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.

 

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.