… chemo…

Post-First-Chemo-Post-Buzzed-Hair visit with Eden. My sister from another mister. Decked out in leopard, as we all should be, at all times. <3

Between my first and second session of chemo a few things happened… 
1. I buzzed my hair.
2. I introduced the new do to the people who love me.
3. The cough that I’d gotten many weeks before got worse and worse until my voice was literally squeaks.

As I write this, I’m exactly 8 weeks in remission (I guess that’s a spoiler alert… I didn’t die! Hooray). It’s incredible how quickly the excruciating exhaustion + side effects + literal feeling like you’re in hell goes away and you’re left with only the “shit, I’m on the other side of this.” It’s not unlike childbirth, give it a few months and — depending on the difficulty of your birth — you’re not even thinking about what it was like and how much you felt like you’d been hit by a truck. Or all the blood. Or hours of pushing. Or pain of learning to breastfeed. Or what it’s like to sleep for less than three hours at a time. Or who you were before you were someone’s mother.

I forgot to mention in my initial chemo post that the first chemotherapy, in my instance when you’re undergoing CHOP-R, is split across two days. My first day was a Tuesday. I had 4 IV-drips and what seemed like a jillion oral pills. The Thursday I was scheduled to receive my immunotherapy drug (not chemotherapy, but a part of the whole kill the cancer program). My nurse told me it’s the future of cancer care, but the medical community isn’t ready to throw out the chemo just yet. The immunotherapy drug, or Rituximab (a.k.a. the ‘R’ in CHOP-R), has to be administered over SEVERAL HOURS the first time you receive it. A side effect of this drug can be an allergic reaction and the numbers are high enough in its favour, that you have to receive it in hospital instead of at the Cancer Centre. SO… at 8AM on Thursday, February 25, I waltzed into the hospital to sit in a squeaky bed all day attached to a machine administering life-saving drugs. But not after crying in Willis’ arms the night before because I was so worried I would be allergic to the drug. I didn’t want to have to go through chemo for more than one day consistently. I wanted one day a week so badly. I wanted this all over as quickly as possible.

As I’ve mentioned well over a thousand times now, my tumour was smack in the middle of my chest and at this point in my journey I had a lot of trouble breathing. At the hospital on the Thursday I told my nurse I was having trouble breathing (one of the side effects of rituximab) already, so no need to worry about that. She did something amazing next… she asked me if I wanted some oxygen. Immediately I said “no, no thank you”, because you know, even after a lifetime of being asthmatic, I still identified as a healthy person who wouldn’t need that sort of thing. She turned to walk away and I called her back and said “yes, yes I would like some oxygen”. And lo and behold, IT MADE IT EASIER FOR ME TO BREATHEEEEE. WHAAAAT?!?! What I wish about this experience is that someone on Tuesday at the Cancer Centre had offered me oxygen. What a relief it would have been to have help breathing for the four hours I was there. I couldn’t believe the difference it made. I wanted to take it home with me. To breathe like the before-times again. In the end, I would be at the hospital for seven hours. All for just one drug. I was a lucky one, too, no allergic reaction. I wouldn’t have to go to the hospital twice in one week. From chemo two onward, it would be one day for me.

First week of chemo. Second day,
immunotherapy infusion.

Note to self: wearing a onesie for a seven hour hospital stay is stupid. Luckily it was baggy enough I could get one arm out to pee without having to interfere with the arm with the needles all jammed in. Eyes / face still swollen, but MUCH less than two days before. Bless you life-saving poison.

Shortly after the second hospital visit, I buzzed my hair and Eden came out to visit me. I was wearing a tuque because it was still winter and DAMN winter cold when your don’t have much hair. And when your head pokes out from the shower when you’re not under the water. And suddenly you go from a person who runs warm to being freezing cold all the time. Also, fun fact about buzzed hair, did you know when you put a tuque on it velcros to your head? I didn’t. And it does.

Eden sat with me outside, both in our leopard attire and when she was settled I said “Are you ready?” and when she said “yes”, I took off my tuque and down came the tears. Not mine, hers. I said “I actually think it looks pretty cool” and she said “it looks great. It really does look great” and then some apologies for crying. I wish so much that my loved ones hadn’t done so much apologizing for crying. Crying is okay. Crying is human. Crying is love. Crying is care. And yes, if you’re caring for me crying all the damn time, in my face, then yeah, shut it, but if it’s an outpour of love or a gut-reaction — never apologize. Ever. I would cry for you, too. It made me feel loved. It put into action what I couldn’t say or feel at the time — this isn’t fair. Why is this happening to you?

I had shown Tracy (my sister) a few nights before over FaceTime. I was wearing a hoodie and asked her if she was ready, too. She said yes, and I showed her. She agreed it looked awesome. And Tom (bald since 18, sorry I keep bringing this up) was very excited to have a bald-buddy. Many months later, Trace told me it was really hard for her to see. It made it all so real. That I was sick. That I was a patient. That I had a tumour. That it was cancer. She was always so strong in front of me and on the phone. Always concerned, but never falling apart. She shielded me from the outside for what really felt like months of holding her breath. Months of internal terror, despite her outward positivity.

Again, for my family and friends, I guess I was only two weeks out from me saying “I start chemo tomorrow” which is shocking to hear. Whereas for Willis and I, it was a deep relief. Finally, an answer to my pain. Finally, a relief from the swelling. Finally, the road to getting better was being paved.

When Eden was over that day she commented that my voice was a little hoarse. When I spoke to my sister on the phone, she kept asking that I bring it up with my doctors. I assured them both it was a “sinus thing” and would figure itself out.

Each chemo is three weeks apart. Two days before chemo I would check in with my doctor. They would take blood work and talk to me about what 18-million symptoms I was having. What needed some medicating and what could run its course.

Prior to my second chemo, I met with a different hematologist (mine was away) and my resident doctor, Dr. Ibrahim, who if you’re reading this, I thought you were fantastic. The residents are only with the doctors and nurses for so long and then poof they’re gone. I wish I’d had a chance to say goodbye to Dr. Ibrahim. He’s the one who did my bone marrow sample. And the one that confirmed it was cancer. He was kind and bright and I so enjoyed being in his company — despite the circumstances.

Anyway… I met with these two doctors a few days before my second chemo. They said my white blood levels were a little bit on the low side, but we’d go ahead with round two. I told them mouth sores are the effing worst and THE DRY MOUTH. MY GOD THE DRY MOUTH was hell. They prescribed a fancy dancy mouth wash that I could use if it happened again during chemo two. They also were more concerned about my squeaky voice and cough than I was. They sent me home with some antibiotics to take “if it didn’t improve”. Something about a viral infection. I was incensed. HOWWW could I have a viral infection? From where? From whom? We literally didn’t go ANYWHERE. It seemed impossible to me.

So, I proceeded with chemo #2, and despite my hoarse voice and my choice that I wasn’t going to take on new clients during this hellfire — I got this great opportunity to work on some branding for a TV SHOW. Celebrity IOU: Joyride. And you know who would be looking at and approving concepts? Octavia Spencer. Octavia-fucking-Spencer. So yeah, I jumped at the chance. I asked for a phone call instead of a Zoom meeting. I said my computer was fried from all the Zoom calls. In reality, I just had a round of chemo, had no hair, and looked like absolutely shit. The day of my phone call my voice had become LITERAL SQUEAKS. I apologized and said it was a sinus thing and thankfully got the job. I LOVED working on the branding and am so happy with how it turned out. And what’s more… Octavia Spencer loved my work! The concept was approved with NO CHANGES. That never happens and it was / is / will perpetually be, the coolest thing.

After that phone call, I called my hematologist’s office. I basically said “look man, my voice is getting worse, what the eff?” The nurse called back and said “did you take the antibiotics?” and I said “no” and she said “Dr. Kouroukis wants you to take them and we’ll go from there.” And inside I said to myself “BUT IT CAN’T BE AN INFECTION. IT’S JUST A WEIRD SINUS THING.” And… within days of taking the antibiotics my voice came back. It confirmed what I already knew: I’m not a doctor. I colour for a living. Oops.

Stay tuned for my next post where we talk about… MORE CHEMO. And it’s super fun side effects. And what it’s like to feel like you’re half dead 70% of the time. I can joke about this because I don’t feel that way anymore and it’s my life. I’ll talk about it however the eff bombs I want. ;)