2020 brought us Covid-19. We all know how that went, and how it’s still going. Don’t get me started. Suffice it to say that 2020 was a shitshow of proportions not seen since… well, I don’t know.
Little did I know, something started brewing inside me in 2020, and it wasn’t coffee. I didn’t know what it was, but my body started behaving in very strange ways and it all seemed very random and disconnected.
At least it wasn’t Covid-19. My family and I did All The Right Things™ (at least according to the infinite array of confusing, contradictory, logical, and illogical guidance we were bombarded with) and were all spared from infection by that nasty little bug. Knock on wood, we as a family unit remain Covid-free to this day.
In March 2020 I felt a strange little pea-sized lump under the skin on my left collarbone. It didn’t hurt, it moved around when I tried to touch it, did didn’t seem to do anything. Could it be a cyst? According to Dr. Google, if it moved easily and didn’t hurt, it was probably nothing to worry about. Nevertheless, I called my family doctor, who said she couldn’t see me because of Covid. She was only doing telephone consultations but did write up a scrip for me to get an ultrasound done at a local imaging centre.
So, I went for the scan at the end of March. Turns out it was a “benign fatty deposit” and nothing to worry about.
The radiologist’s recommendation: check it out again in 3-4 months to see if it grows.
I honestly don’t remember if I had any symptoms over the late spring and early summer; we were in the middle of this strange new Twilight Zone world of Covid-19 and to be honest, I was a little distracted with it all.
At the beginning of July I went for that follow-up ultrasound. Same thing: still a benign fatty deposit, hasn’t grown. Nothing to worry about.
Then things got weird
Shortly after that ultrasound, I got a series of mosquito bites that would turn into giant welts that lasted for days, and it all looked like a low-grade infection of some sort. I’m not allergic to mosquitos, but maybe these little pricks were carrying a virus? Zika? Who the heck knows…
Another phone consultation with the doc (she’s still not seeing patients) … get a prescription for some creams and antihistamines.
They didn’t do much of anything except relieve the symptoms. Eventually the bites went away, and again, didn’t think too much about it apart from being extra wary of mosquitos and dousing myself in DEET every time I ventured outside until the end of summer.
Well, that’s that. I pushed it off to the back of my consciousness and got on with as normal year as we could in Covid-land. Danielle and I even got away for a little R&R in Québec City when things started opening up again. It was nice to get out.
Then all of a sudden I got old
As 2020 progressed, the minor annoyances that come with being a fat middle-aged guy emerged at an increasing pace: random aches & pains, signs of arthritis (to which I’m genetically predisposed), waking up in pain after having “slept wrong” and then spending weeks at the physiotherapist to sort things out.
It felt like it was getting time to invest in a bottle each of “upstairs ibuprofen” and “downstairs ibuprofen.”
Those sorts of things. Shit that happens to us when we hit a certain age.
Almost on cue, just as the Gregorian odometer tipped over to 2021, my body started really acting strange. Debilitating acute arthritic pain in random joints (that would go back to normal 36 hours later as if nothing happened) followed by a strange, inexplicable rash near the affected joints.
That rash was really weird. It would start as a dime-sized red spot that would grow over a day or so, and eventually turn into a ring and then fade away over another day or so.
Was it psoriatic arthritis? Rheumatoid? According Dr. Google and Dr. Bing some arthritis also presents with rashes, but they are almost always painful and itchy. That’s not what I had.
At the same time, I had developed what seemed to be a cold, or at least post-nasal drip. I was blowing my nose constantly and didn’t have any other classic symptoms of a cold like headache, general crappiness etc. How could I have caught it anyhow? I never went anywhere without a mask and I still washed my hands with unnatural frequency.
Who knows. But it sure felt like my immune system was mounting an attack against me.
You know the Pink Panther? I was turning into the Pink Leopard
A few more days of this and the attacks kept coming, and the rash started appearing everywhere. Thankfully, the rash wasn’t itchy or painful or anything—were I blind I wouldn’t even know I had it—but it started freaking me out.
Around the same time, the glands under my jaw and around my neck were noticeably swollen and tender. Even my wife commented that I was starting to look like that American senator John McCain. Gee thanks, Danielle.
This time I insisted on seeing my GP. She didn’t turn me down.
At our appointment, we discussed the three distinct issues: a rash, acute arthritis attacks, and swollen glands around my jaw & neck. Were they related? Great question!
I walked out of the doctor’s office with a prescription for two creams, a referral to a dermatologist and another scrip for an ultrasound of my entire neck.
The creams and the dermatologist were dead ends. The ultrasound, however, came back with a note from the radiologist recommending a biopsy of one of the many swollen lymph nodes in my neck.
That nodule on my collarbone was supposedly still benign. At least there’s that.
Thursday, February 4 – the ENT consultation
Off I went to The Ottawa Hospital to have a first meeting with an ear, nose and throat specialist.
An ENT? Sure, why not!
Turns out that since my lymph nodes were on my neck, they were in ENT jurisdiction. Fair enough.
“Wow, those are big.”
“We’re going to need to do a biopsy and order a CT scan to narrow down the differential.”
It didn’t take long for me to get a call from the hospital scheduling both the biopsy and the CT scan. The appointments were a few weeks out at the tail end of February. They couldn’t be sooner because the hospital was still digging itself out of the Covid-created backlog of procedures that were delayed when they shut everything down last year. Still, 2-3 weeks wasn’t too bad.
In the meantime, my arthritis and rash came and went throughout the month. I had good days and bad days. February was mostly bad–the arthritis would attack my knees and ankles, making mobility challenging. I couldn’t wait to get the tests done to get to the bottom of things.
I spent most of February ruminating and thinking and going for walks and pondering what lay ahead for me. Oh, there was work, too.
Friday, February 26 – the biopsy
Took the day off from work for the biopsy, thinking it was going to take some time. Arrived for the procedure promptly at 11:00, was back in my car at 11:45!
Decided to head downtown for a photowalk to clear my head. Turns out camera straps and freshly biopsied necks aren’t very compatible, but it was a nice day anyhow. It was also nice to walk around an area that wasn’t my immediate neighbourhood in the suburbs. Change is good.
Saturday, February 27 – the CT scan
It had snowed overnight from Friday to Saturday… almost 20cm worth. After coming in from clearing the drive, I got a phone call from the hospital.
“We have lots of cancellations this afternoon for CT scans because of the snow. You free to come in at 13:30?”
Wednesday, March 3 – vibrations
While eating dinner, my phone buzzes. It’s the hospital’s MyChart app which informs me of new test results.
“Click here to open PDF of pathology report”
So I have something called CLL/SLL. What does that mean? Paging Dr. Google…
Even though it seems that things are starting to unravel, I figure life’s a lot like a birch tree—a hell of a lot of unravelling needs to happen before things really start to fall apart.
Thursday, March 4 – referrals
Had a conversation with my ENT. He explained that this is just the first step of a long journey, but he’s already referred me to the oncology/haematology team. At least we know what we’re dealing with, which beats stabbing in the dark.
In the meantime, I had started reading up about CLL (Chronic Lymphocytic Leukemia) and SLL (Small Lymphocytic Lymphoma), the new acronyms that will take over my life. In a nutshell:
Great. It’s relatively rare, and I’m very young for CLL/SLL, despite being 51. Not sure how much I’m liking this diagnosis so far. Everything I’d read about CLL/SLL is that it’s one of the slowest developing cancers where things aren’t hair-on-fire urgent, so a few days’ wait to see the blood docs won’t change anything.
Can’t help but worry, nonetheless.
Finally got the call to go see the haematologist.
Thursday, March 11 – Module L
Meet and greet with the team that will take care of me at “Module L,” The Ottawa Hospital’s haematology clinic. I’m assigned two doctors, whom I’ll refer to as Dr. B-B (a senior, world-class haematologist) and Dr. G (a young “fellow” despite her being anything but ).
“Let’s get a full blood screen before you go home, and we’ll order another CT scan so we can size up what we’re dealing with here.”
Things are moving fast now. I visited the vampires before driving home.
Tuesday, March 16 – CT scan #2
Went for the full-body (well, torso) CT scan to see what lies beneath.
The results came back quickly; lymph nodes normally measured in mm were measured in cm, and I had “borderline splenomegaly with extensive lymphadenopathy in the abdomen and pelvis.”
That translates into Stage III. Yay.
Wednesday, March 31 – the bone marrow biopsy
Went back to the hospital for a bone marrow biopsy. Since CLL/SLL is a blood cancer, they need to test to see if it’s in the bone marrow or not, and they need to draw samples for other tests.
This was a very “interesting” procedure that I won’t detail here (there are plenty of videos on YouTube if you’re interested). It was certainly a once-in-a-lifetime (for me, so far) experience… not necessarily painful, but most definitely not fun.
Thursday, April 1 – April fools!! Not.
I was quietly hoping that this whole thing was an elaborate April Fools prank that would be revealed to me when I got back to Module L for another meeting with my haematologist. No such luck.
Preliminary results came back from the bone marrow biopsy; there didn’t appear to be signs of CLL in the marrow, meaning I’m firmly in the SLL camp. Not that that’s a “good” or “bad” thing, but it’s an interesting data point.
I’m given a stack of information, documentation, and prescriptions for drugs I’ll need to bring to my chemotherapy treatment scheduled to start next Wednesday.
Shit’s getting real.
Friday, April 2 – Good Friday
Got up early and went for a long photowalk to clear my mind. Even though my doctors tell me my treatment “shouldn’t” make me lose my hair, I’m wondering if I shouldn’t go hat shopping.
After a long Easter weekend and a quick two-day work week getting things squared away updating my manager and colleagues on my ongoing projects, it’s time to head into the hospital on Wednesday for Day 1 of chemo treatment.
Wednesday, April 7 – Chemotherapy day 1
Danielle drove me to the hospital early, due to the Covid screening line-up at the door that normally takes ages to get through. It wasn’t there this morning, so I breezed on upstairs 15 minutes early.
Hooking up isn’t as fun as it sounds. It wasn’t even 8:30 when they had me primed and ready to go.
The team of nurses at The Ottawa Hospital’s Medical Daycare are second to none.
Smart, beautiful, confident, friendly, warm, generous, gentle, funny, patient, understanding, empathetic, selfless. Just a few adjectives I’d choose to describe them.
Only the rituximab is administered intravenously—the cyclophosphamide and fludarabine are in pill format. On days 2 and 3 I don’t take rituximab, meaning Day 1 is the only day in the hospital.
Of course, I wasn’t left to my own devices. I had a 45-minute consultation with Sarah, the haematology department’s wonderful pharmacist who explained everything to me and left me fully confident in what was happening and what needed to happen after I went home.
It was going to be a long day. It took about 5 hours to drain that rituximab IV drip. Good thing they put me on Benadryl; I slept a lot and the day didn’t feel all that long.
And just like that, we’re done! Within minutes of the IV coming out, that’s it, you get sent home. Now the fun really begins.
(Don’t worry, my wife came and picked me up.)
Thursday, April 8 – Chemotherapy day 2
Breakfast of champions. George Jetson has nothing on me! (I have to repeat this on Friday, too.)
Taking those pills is a real knockout. It takes about 30 minutes after swallowing them to before getting hit with a tidal wave of fatigue. Sat down on the recliner and flaked out.
Friday, April 9 – Chemotherapy day 3
The effects of the chemo treatment are starting to mount. Fatigue (oh, the fatigue), loss of appetite, loss of attention span, boredom… still I manage to find the energy to go for a (slow) walk in the park and get some fresh air.
Saturday, April 10 – Day 4
This is the first day after the chemotherapy treatment. Little did I know, the days after chemo are way rougher on the system than the chemo days themselves. I didn’t even manage to make it outside on Saturday.
Thank goodness for my recliner.
Sunday, April 11 – Day 5
More sluggishness and nausea. Way. Too. Much. TV.
Monday, April 12 – Day 6
Things are looking up! The nausea has mostly subsided, and I was able to work a little more than a half-day, before taking a nap. Naps are good . I managed to get out or a nice late afternoon photowalk and get some fresh air, which felt great. By the evening, whatever was left of the nausea was gone. That was a nice feeling.
Tuesday, April 13 – Day 7
There are a handful of “support” meds that have to be taken along with FCR, such as anti-nausea agents, drugs to protect the kidneys etc. that need to be taken for 7 days (rather than the 3 of FCR). I finally took my last “support” pill that Tuesday morning.
Tuesday was phenomenal—I felt almost normal! Tired and drained, but not nauseous and not “chemo-ey” (it’s hard to describe). Woke up rested and hungry, which was a good feeling.
Did a full day at work (from home, of course) and went for a longer walk than ever at the end of the day.
Wednesday, April 14 and beyond
Basically, I feel “normal” now, albeit very easily tired. So I still have to take it easy, stay hydrated, take my temperature often (I basically have lost my ability to fight off infection) and stay out of trouble.
The protocol for someone between chemo courses is remarkably similar to what we need to do during the pandemic: wash my hands, avoid sick people, keep my distance, wear a mask if I go out, yadda yadda. I think I got this.
What’s amazing about this treatment, is that all those crazy symptoms I had up until the morning of day 1 of FCR—the arthritis, the rash—are GONE. Poof! Vanished into the wind. As have those swollen lymph nodes—they’re almost gone, too. I wonder if my spleen is still mega or not.
Of course, I’m not going to count my chickens before they hatch, but I don’t feel like my immune system is fighting me anymore. Then again, chemo has ensured I don’t have much of an immune system left at all. 🤔
Another 5 courses of this same treatment—spaced every 4 weeks—is in my immediate future, with the next one scheduled for the beginning of May. Hopefully, what I’m witnessing is the Pareto principle in action for SLL: 80% of the disease and symptoms are wiped out by 20% of the chemo. The remaining 80% of treatment should take care of the stubborn remaining 20% of disease.
I could be wrong, of course, but for now this is the positive narrative I’d rather have rattling around in my brain. The alternative is somewhat dark.
Thanks for making it this far. I’ll be sure to keep this blog up-to-date with any developments.