Sound of Silver
Read all the pamphlets and watch the tapes, I get all confused when you mix up the dates. Whoa!
I need to start by looking at the silver lining in all of this. They say mindfulness and meditation will get you through cancer. You will need more than pain killers and visitors. Mental strength is so important and to keep a positive outlook, which, often times, I’ll admit is hard, but once you hold on to that string of hope, don’t let go until it grows to a rope. So here’s a list:
- I had a seizure, not while driving to the bank but while in a bank.
- I had a seizure on my very last day of work. Hello EI sick benefits and LTD from my former employer (Richard, you’re awesome). 2 hours later and I would have had no chance.
- Deb’s new due date is a month after I *should* be done chemo. She is not walking around with a newborn and a toddler right now.
- I’m not dead. 15 years ago, a doctor did tell us, that I would’ve been dead. Thank you medical science.
- Sorry/not sorry — I have the best family and friends. #cantstopwontstop
- The cancer is isolated to one spot. It has not spread. We caught it early.
- I’m at the best cancer facility and across the street is the best transplant facility in Canada, top 5 in the world for both apparently.
- Ben is kind of…proud? He understands his Dad is sick. He understands I need to be in hospital to get medicine. He marches in like he knows where he’s going — “up the elevator, to dada’s bed, I push the buttons and drink juice”.
- Our neighbours have coordinated delivering food to us every Monday. #beststreet
- Deb’s boss made sure she took sick time with pay before her due date to take care of me and herself before mat leave.
- Babysitters are lining up to watch over Ben and Deb’s brother and sister literally live on our stret. Last minute requests are often easy to come by.
- We live in Toronto. We’re not paying exorbitant fees to get to this great hospital.
- I’m old but still kind of young in cancer’s eyes. The word cure has been thrown around. It’s not 100% but it’s nice to hear it.
Round One. Fight! Words from the legendary video game “Mortal Kombat” liberally applied here because that’s what it ended up being —both literally & figuratively.
After being discharged from TGH on Wednesday, all I knew was I would be admitted to Princess Margaret Hospital (PMH) on Monday for the first round of chemotherapy. I would be admitted on a 4-day stay and apparently day 1 would be chemo, day 2 was pain, day 3&4 were flushes, whatever that meant. I spent each day calling in to PMH and TGH trying to find my spot. TGH knew I had the appointment but could tell me nothing more. “What do you want me to tell you? That’s all I know,” my coordinator would say. For those that don’t know, TGH, PMH, and TWH are all part of the University Health Network (UHN) and share records (bloodwork, appointments, etc.) across their network. My coordinator telling me that’s all she knew was a little hard to swallow. The PMH team of people I was calling would say, “What’s your name? I don’t see you in the system. What’s your UHN number? I don’t see you here at all.” I did my best to play it cool and Friday, finally…
“Hi, my name is Tyler Wade and I don’t…”
“Oh, Tyler Wade? Yeah, I know you.”
“You have no idea how happy that makes me to hear you say that! I know nothing, tell me everything.”
“Come in like you’re staying 4 days at a resort. Bring toiletries, comfy clothing, pictures of family…”
Deborah, my oncologist’s assistant with no listed number, knew it all. The timing of the appointments, which of those appointments were on which floor, and all the details I would need to make it through my first round. Or so I thought.
Day 1: I showed up, did bloodwork, headed up to clinic, saw the Fellow (who didn’t communicate very well), and then was admitted to the “short-term” stay floor (4–5 days or less, they shut down on weekends) and met my nurse Sharm. To my surprise, she poked me for an intravenous (IV) therapy. I have CNS lymphoma so it’s not technically in the blood stream. It’s in the spinal or cerebral fluid. I’d been hooked up to IV’s my whole life so, hey, whatever but they aren’t necessarily, let’s say, comfortable. It’s a needle (longer than a bloodwork needle) that just hangs out in your arm pumping in some type of fluid into your bloodstream. I would be hooked up to this particular IV for 96–120 hours straight. My nurse Sharm poked me (a term for inserting the IV needle) and missed the first time but succeeded the second. They started me on Sodium Bicarbonate (basically, baking soda and water) because my PH needed to be at 8.5 before starting chemo, otherwise your blood, veins, body, can’t handle the chemo drug; it’s too acidic.
Of course, as luck would have it, my PH level was a drastically low level of 4. It took 18 hours with several litres of sodium bicarb, sodium bicarb bolus (high dose, not watered down, like a shot), and sodium bicarb tablets to get me up to that elusive 8.5. Why does this suck? It means I didn’t actually start my first round until Tuesday. Why does this suck? It kicked off a series of room moves for me because, let’s all remember now, this was “short-term” stay. They were concerned I’d need more time. Can you increase your PH at home using nutrition and supplements?! YES! Why didn’t I? I had no idea. Hipsters are into it as a new health trend with alkaline water and eating Kale wrapped spinach. I just was not prepared. In fact, I thought I was getting chemo intrathecal (spinal tap, directly to the spinal fluid) until they put an IV in me. Communication was not great.
New research I guess comes fast in cancer. It’s a big disease. This is not a fact but I’ll say it now, PMH is not a hospital. Sure, it’s got all the makings of a hospital — Doctors, Nurses, poor food courts, hand sanitizer everywhere, etc. but it is a cancer centre. They care for cancer and nothing else. The positive is I’m in the best place to fight cancer therefore new research, new medicines, new theories come fast. The downside is they have blinders on and communication from admission to discharge is not great. The patients can sometimes look like a number, or series of numbers, to them. Patient 10615 showing WBC’s of 0.6% with Nutriphils of <500 and hemoglobin <100 should receive 100cc’s of neupogen BID for 3 days. Say WHAT!!?
As it turns out, new research has shown that high dose Methotrexate (the main drug) via IV actually breaks through the blood brain barrier and works more efficiently on lymphoma in the brain than a low dose via spinal tap. Check that out! I finally started my first dose of chemotherapy. Now, for those that don’t know, ’cause I sure didn’t, chemotherapy is not a drug in and of itself but rather a “cocktail” of cancer fighting drugs and everyone’s unique chemistry make cancer pharmacists bartender champs. My “cocktail” is IV sodium bicarbonate and once my PH comes up, I get a new IV bag of 5000mg of methotrexate. I follow that up with an IV of Leucovorin which actually bonds to the methotrexate to shut it down (we want it to get in, do its thing, and then we kill it for toxicity purposes) and then I take Cytarabine which is another cancer fighting drug — all these are received consistently over 4–5 days which is why I am hooked up to IV permanently during that time.
Another little note on IV’s — your veins can break down so you have to get poked again in a new vein. You’re connected to a pump on wheels by a clear 1/4" tube about 3 ft long so you have to wheel around with this 6ft beast wherever you go. The beast, despite having about a 5 hour battery, really should remain plugged in (but remember, it’s important to walk around to get the blood pumping, blood flow is important). Strain relief is important because if you forget that it’s there (How? I don’t know but it happens, trust me) it can feel like you’re pulling the IV out of your arm, this…hurts… Also, it frequently likes to beep at you, they are sensitive to air bubbles (these can kill you though so, that’s good) and they are sensitive to pressure meaning don’t bend your arm too much or it can back up and beep at you to straighten out. Beep, beep, beep…. I found the silence button.
Day 2: I started Methotrexate and found out that because I was delayed getting started, they were anxious, and wanted to move me to the 15th floor or “long term” which meant that I could be here all weekend! Hooray Hoorah. In case you can’t tell, I’m being sarcastic.
Day 3: I needed a new IV because the other one had gone bad. They ordered me an IV nurse whose sole responsibility it was (and had been for 30 years) inserting IV’s. She had worked in the Middle East, in China, in the US — she had worked the world over, sticking IV’s into people’s arms and had stories to prove it. She was straight out of “Apocalypse Now” and spoke of red tubes, and thick long needles, and other, “back in my day they stuck needles in your eyes” kind of nonsense. She had some old school tricks, “The only way to get an IV started is to see all the veins. You gotta get a hot wet towel and wrap the arm and leave it for 10–15 minutes, the right vein will stare back at you after that.” Needless to say, her first attempt #fail. PMH poke score — Pokes 4, IV’s 2.
I moved to the 15th floor shortly thereafter but into the presidential suite of rooms. It was a single enormous room (no semi private curtain divider watching some guy empty his colostomy bag into the toilet) with a gorgeous view.
The nurse that came on that night for me was an older woman who just wanted to argue with me. I didn’t know it at the time but the Dexamethasone drug I had started at TGH was beginning its adverse side effects which included weight gain, mood changes, acne and raging irritability. I pleaded for a disconnect from my IV (they have quick disconnects and before reconnecting, they wipe down the area with alcohol, it happens all the time at TGH) and she refused. I wanted a shower. Usually a quick disconnect, the IV area on your arm gets a bag with the bottom cut out slid over it, and both ends get taped up. At PMH, they want to keep you connected to the IV for “hygenic” reasons. I have to reel the beast in with me. They haphazardly wrap a piece of plastic around the IV site (which gets all kinds of water in it), and I get no relief from the IV. Fifteen minutes of freedom to touch your face in the shower can be as therapeutic as Mozart in your living room. She even argued that 15 minutes disconnected from one of my regular fluid type medications would be detrimental to my treatment. I shower, bag drenched, with my hospital gown thrown weakly onto the IV pump. I exit shower, feeling half clean, throw some boxers and pants on, new socks, and new shirt…oh wait, to put a new shirt or new hospital gown on, I WOULD NEED TO DISCONNECT FROM THE IV PUMP!!! I sat for five hours, shirtless, waiting for this precious nurse to return, so she could disconnect, while I put a new shirt on, before reconnecting. I mean, hey, I’ve been a little bit like Tarzan swinging from tree to tree screaming, “ooooooooohhhhhiipppp” but at some point there is some human dignity that needs to take place.
Day 4: This nurse wanted me to move rooms, again. A woman was coming in and the only other bed they had available was a semi private with another man. I have no problem with the move, just sucks on the first round of chemo, with such poor communication, and having moved rooms already…Deb argued for me to sleep on Thursday night since the woman wasn’t arriving until Friday AM and why ruin a good night’s sleep for two people? She won.
Day 5: I moved at 6:30am since the nursing shift change is 7am. The woman coming in didn’t arrive until after I was discharged. If you haven’t put it all together, I was discharged on Friday. Could I have stayed up on floor 18? Yes, but I guess one never knows, right? They gave me a bunch of drugs (laxatives, stool softeners, anti nausea, etc.) just in case I needed something while I was off. Only to find out later, the one drug I did need, they didn’t give me.
I got a call at 5:15 that Friday night, while walking Ben home from school, from the Fellow saying I had an appointment at 9am for a lumbar puncture on Monday. I didn’t understand. I went in to the hospital expecting lumbar punctures, I was at the hospital for IV, and now we’re adding a lumbar puncture? The Fellow argued with me saying this has always been the protocol. I argued back saying if it was, then why am I getting a call after hours for a first thing Monday morning appointment? Why is this the first time I’m hearing about it? And…why are we doing it? Does it add to the toxicity or does it aid in the cure? We googled. Deb found a Japanese study that found when they hit the CNS lymphoma from both sides (blood and spinal fluid), they had better results than just one or the other. We opted for the procedure despite any base line tests or results as yet.
Week 2 was filled with appointments of all shapes and sizes, new doors, and new prizes.
Door 1 — lumbar puncture.
A lumbar puncture, or spinal tap, if you don’t know, is essentially threading a needle between your vertebrae and tapping into your spinal fluid to draw a sample or inject medicine. It’s a quick, easy but oh so delicate procedure. I’ve had 3 now. The first being guided with ultrasound and I didn’t really feel any pain. The second was in my hospital bed, done by a resident, overseen by a Fellow and I don’t think either one had done it before. It was 40 minutes of sweat inducing, excruciating pain while they went through two kits and ended with a tainted sample (blood got into it). Even the nurse told me she felt queasy watching it. Needless to say, I was a little anxious for the third. The resident doctor on floor 14, before my discharge, said I may have to have a lumbar puncture and I told him about my struggles. He replied with things like, “They’re always painful”, “You must not have a good back for it,” and essentially put all the blame on me for the pain. He added that a guided ultrasound tap was impossible due to scheduling and budget conflicts. To save the reader, I’ll tell you right now on my third tap, I didn’t feel a thing and was told I have a great back for them.
Door 2 was rough, a check in with my nephrology or kidney team. The kidney itself was fine. The Dexamethasone had hit its peak rage. The kidney clinic was packed and they had no record of me having an appointment that day and no time to squeeze me in. I was an emotional disaster. I stole the schedule of appointments paper out of my coordinator’s hands in front of a sea of people and ripped it in half and sternly insisted, “This is irrelevant. This doctors name is wrong, this appointment was cancelled and you’re missing another appointment on here.” For the first time in my life, I was shaking and texted Deb, who had gone to grab coffees, that I needed her there in that moment asap. The coordinator grabbed Dr. Musci, brought him to me, he shook my hand, clasped his other around that same hand and said, “Not to worry, we will see you, it’s important that we see you, I want to see you, just give me a little time, we’re very busy as you can see.” He gently let go, my anger melting away, and I saw him shortly thereafter. Apparently I had made a scene but seeing my kidney doctor in my long standing clinic made everything feel ok again. That’s weird but I can’t tell you how true a statement it is for me. PMH is cancer, TGH kidney is like home base.
Door 3 was to follow up post chemo, check the bloods, talk to the Oncologist. My oncologist for my first round of chemo was doing a speech in Italy. I got to see him for a brief moment before he had to run to give a speech at TGH. I told him I was getting irritated and angry and he told me that it’s not chemo, but the dex(amethasone). I was weening off the drug and the side effects were powerful. The Fellow looked at my bloodwork to say, “This is low but not too low it could be high but not that high” and essentially gave me nothing to work with in terms of next steps or questions. He sent me on my way.
Door 4 was psychiatry. I’ve never done it before. I could only think of Good Will Hunting, “I’m not gonna do it, I’m not gonna cry,” and I did. I wept talking about Ben and his future and what I needed to do in order to make my future with him complete should I not be in it. It’s a scary but important thought.
Door 5 was Easter brunch at my mom’s place. I haven’t spoken about my family much. They sort of need their own post. I will, soon. What I need to tell you now is I slept in that day and awoke with a big headache. I got to my mom’s and within an hour needed an hour long nap. I went up to my in laws cottage right after and needed another nap when I got there, one just before dinner and went to bed at 9pm that night. All weekend was awful. What would week 3 bring? How about another trip to hospital!?!
I checked in to TGH with a fever on Tuesday and was quickly admitted. You know you’ve been to a lot of hospitals when the doctor comes around the corner and says, “Oh, it IS you!” They swabbed me for everything. The most fun being an MP swab, it’s like a giant Qtip they stick up your nose until it touches (feels like if does anyway) your brain. They took numerous blood cultures to test for bacterial infections. In case you aren’t aware, a blood culture takes 48 hours to grow which means for me, I was definitely going to be in hospital for at least 2 days. They started me on …IV! Broad spectrum antibiotics (in case they got lucky and covered whatever may be afflicting me) as well as broad spectrum anti virals. They swabbed acne on my chest they mistook for chicken pox but which landed me in an isolation or private room so I couldn’t be too upset. I am the bubble boy. They even tickled/swabbed my rectum. Damn near killed’em. Deb said, “Oh, yeah, they get pregnant ladies to do it themselves in the bathroom.” Not my nurse…
In the end I had what’s called neutropenia or essentially, no cells — be it white (disease fighting) or red (energy). Remember that drug I definitely needed but didn’t receive? It’s called Neupogen. Neupogen kickstarts the bone marrow into reproducing white blood cells (more specifically, neutrophils) to help fight infection. Everyone on my chemotherapy of high dose methotrexate receives Neupogen, everyone. I don’t know why I didn’t. All my tests and cultures had come back negative for bacteria that the world knew about. My own unique bacteria growing inside of me, that grows inside all of us, unique to us, was trying to kill me since they saw no white blood cells to fight back.
I was discharged Friday afternoon feeling like I had moderately recovered from my neutropenia. It was April first but I fool you not, I was returning for round two on April fourth. My veins hate me but on the bright side, I don’t need to shave or pay for a haircut anytime soon!
