Chemo…

Me and my newly buzzed head, post-first-chemo.

As I type this, I’m waiting for Willis and the kids to come pick me up after Chemo Number 5. It’s a weird feeling to be nearing the end of this journey as I reflect on the beginning — plus I’m a little loopy from the meds. On chemo days I have to take five pills (orally) before I get to the hospital. Four are steroids, one is an anti-nausea drug (thank you anti-nausea pills, I love you.) Then, once I’m in the chair before the infusions, I get two Tylenol and a Benadryl. This is followed by four IV drips — the C-H-O-R in CHOP-R (which is the treatment I’m on for all you cancer people in the know). 

Now that we know where I am, let’s rewind to February 23, 2021. 

My first chemo

Wearing my “Don’t Mess with Mama” shirt, still sporting a semi-swollen face.

On February 23 at 8:30 AM I showed up to my very first chemo swollen-eyed and bushy tailed. Only one day after finding out for sure that yes, I had cancer and it was Aggressive Non-Hodgkin’s Lymphoma. I had a wonderful nurse named Jen, who I saw again today. She asked how I was doing. I said I was great and couldn’t wait to get started. I playfully slapped my forearm and said “hit me.”

The first chemo is interesting because you have no idea what to expect, how long it will take, where the washroom is, how long you have to wait in the waiting area before you’re even taken to the treatment area, etc. It really is surreal. In the waiting area that first day I couldn’t help but feel a little miffed when I looked around and saw mostly people who were 70 and up, and here I was at 36, one of maybe three patients who looked to be in the “Young Adults with Cancer” group. It’s the first time I felt a tinge of the “why me?” feeling. After treatment that day, I called my cousin Lucia to let her know how it went. I told her I felt that way and she said she didn’t blame me and we were all feeling it. It’s so comforting to have a support network so vast and loving. 

The treatment area during COVID is particularly strange because it is eerily quiet. No family members are allowed to be with you. So it’s just a bunch of people getting drugged up for hours not talking. Each time I’m in there I have the urge to scream “WHAT ARE YOU HERE FOR?!??!” and start a big, giant conversation. But I feel like that would be frowned upon. So instead, I just soak up the silence and the uncertainty.

After they called me to the chair and Jen set up my IV, we chatted a while. She had little kids, too. She was grateful to be at work and away from them (ha) I was grateful to have a few hours to myself in the middle of the day and to have someone taking care of ME. I got a warm blanket. An apple juice. A cup of ice. I put my feet up, read my book, coloured in my colouring book (thanks Ash). I still had a glorious head of curly hair. All in all, not a bad experience.

They give you an iPad with the world’s most excruciatingly boring PowerPoint presentation. I’m calling it “What to Expect When You’re Cancering.” It’s 20 minutes long and basically said all the same things the giant “Welcome to Cancer” packet I got said. So, I skimmed it and gave it back. As a designer, I only have so much time for looking at poorly chosen fonts, type set in too many sizes and styles, aligned in inconsistent ways. So nuts to that. Plus, I have zero control over what side effects may come, so I saw no point in reading all the many, many, many variations of them. Bye bye iPad; hello David Sedaris book.

On your first visit, one of the pharmacists comes and chats with you about
A) the plethora of drugs you’re on and their side effects and
B) what other medications or supplements you’re on and if they will interfere with your chemo. Fun fact: I can’t have citrus fruits right now because the antioxidants can affect the effectiveness of the treatment. #ThingsYouOnlyKnowIfYouHaveCancer. The pharmacist who came to talk to me was Anatoli. My nurse told me he was worth the wait (he arrived near the end of my last transfusion) and wow was he ever. A most flamboyant, tall, hilarious man came and sat down with me. He had buttons on his lanyard signifying LGBTQ+ rights / safety and others I can’t remember now. He was my kind of people. We laughed as we went through the hilariousness of the potential side effects (what can I say, I love dark humour) and it was a great experience. Both him and Jen were a wonderful introduction to this crazy oncology world. After about 4 (5?) hours, I texted Willis to come and get me.

My hematologist had warned us that you feel worse after every cycle, it’s the nature of chemo, it’s cumulative. And WOW that first one was a train wreck. I laid on the couch for days. Exhausted. Fatigued. Tired. All the synonyms. I got mouth sores (they sucked the most). Throat sores (no, they sucked THE most). Cold sores. Water suddenly tasted like metal. Food didn’t really taste like it was supposed to anymore. Tingling in my fingertips. I either had constipation OR diarrhea and there was no warning which one would come out. I either couldn’t shit and when I did there was blood (I think I gave myself hemorrhoids) or I almost shit my pants. Again, if you’re squeamish and not into TMI, this blog is not the place for you. The nausea was … gross. Praise be to the anti-nausea meds, I’d pop one of those and feel better almost immediately. I’m sure there were more side effects, but I can’t remember them now. Just know the chemo fatigue is nothing like anything I’ve ever experienced and I was DAMN tired when I was baking the twins in my oven. This cancer exhaustion is next level. I don’t think it’s possible to explain it unless you’ve been through it. Like working in a restaurant, you just don’t know how hectic and hard it is until you do it. It can’t be explained to non-restaurant-working citizens. Restaurant plug: support your local restaurants. I strongly believe we would have a better world if everyone worked in a restaurant at least once in their life. Even if only for two weeks (shout out to my cousin who only made it two weeks, I’ve omitted your name, but you know who you are). We would definitely have better diners. Tangent over.  Back to your regularly scheduled cancer rant. 

My hematologist, when I was discharged from the hospital, gave me steroids (Prednisone to be exact) to start taking. I messed up the dosage and my SVC symptoms came back, so I had to call the office and get a new regimen. By February 23, I had been on steroids for 10 days. By the time I ended this second regime I had been on them for 22 days. If you know anything about those, they suck. They make your whole body hurt. They give you insomnia. They can make you cranky AF. And you’re not supposed to take them for 20 days. They’re meant for shorter stints because of how it affects your body.  

In addition to the first chemo being a “holy shit why are you trying to kill me?” reaction from my body; I was also a few days away from getting my period. Pardon my language, but this is a load of total shit. You should have cancer OR your period. There should be a magical box to check where you can sign out of getting periods for however long your treatment lasts. I’ve heard a lot of stories of periods going away with chemo but (spoiler alert) THIS HAS NOT HAPPENED TO ME. Not cool biology, NOT COOL.

The week after my first chemo, my hair started falling out. From root to tip. And since I hadn’t had a haircut since March 2020, it was long as long could be and I hated the feeling of it falling out. I lasted 10 days after chemo number one before it had to go.

On March 7th, a Sunday, Willis was ready to buzz my hair and I was mentally on board. When we mentioned it to the kids, Etta had a FULL BLOWN meltdown. She started crying at the dinner table and exclaimed:
“WHAT?! YOU’RE GOING TO HAVE NO HAIR? YOU’RE GOING TO BE BALD LIKE UNCLE TOM AND IT’S NEVER GOING TO GROW BACK?!?!”
Then, she got up from the table and stormed to her room.

Etta’s only reference point to baldness is her Uncle Tom, who has been bald a long long time now. Once when Mary was young she said to my sister, “Mommy, why did you take Daddy’s hair?” And we all still chuckle about it, except maybe Uncle Tom. 

So, I followed Etta to her room and sat down and gave her a hug. I assured her my hair falling out is because I’m sick and it will grow back. I had to explain Male Pattern Baldness to my five-year-old a little earlier than I anticipated.

As she cried she finally looked at me and the reason for the visceral reaction revealed itself “I don’t want you to die” she said through her tear-stained-eyes. I took her little face in my hands and looked her right in the eye and said “The doctors and nurses know what they’re doing. See how much better I am now? I’m not swollen anymore. I can breathe. I’m excited, the medicine will heal me so I can get back to playing with you properly. I’m not scared, I’m brave. And it’s just hair, it will grow back.” (For the record I believe you can be brave and scared at the same time, but those are the words that came to me that evening).

After that breakthrough, we had another big hug and returned to the dinner table. To my family hearing this for the first time, I didn’t want to tell you what Etta said because I knew you were all feeling it. It was all raw and terrifying in the beginning.

The next morning she hopped on my lap in my office, I opened my laptop and I showed her pictures of Cara Delevingne, Demi Moore, Kate Hudson and more women who shaved their heads and their hair grew back. We happened to have karate that day and her badass teacher, Miss Emily from Determination Martial Arts (the best, please check them out and sign up for online classes) happened to have shaved her head in high school just because. She pulled it up on her phone for Etta to see. If you know Emily, you know her hair is very, very, long. After that, she was game. That evening, as a family, we shaved my head. Willis did a great job. Clark cut some with scissors. Etta got to use the razor and buzzed a bit on the back. And I found out that I have been blessed with a perfectly shaped head and can actually pull this off. Finally, my tiny head comes in handy. Finally. 

In short, post-first-chemo was no fun. On the Thursday or Friday of that week my parents came over. I believed the words of my Internal Medicine Doctor at the hospital that I would need help with the kids, so they would bubble with us to be that help. They’d been self-isolated since the day I was admitted to the hospital, and I’m pretty sure they’d been at home crying randomly in all the days since. We needed them to be there, no way could Willis and I do this alone and I needed a hug from my parents SO BADLY. I have never been more excited to see them as I was that first day. When they walked in the door we shared two very big hugs. My mom spent the day making sure I was okay, putting blankets over me and rubbing my back. My dad spent the day going to the freezer and getting me popsicles (to help with the mouth / throat sores). It. Was. Glorious. And it has been glorious every time they’ve come to help since. There is so much love in this world. For me. For all of us. And I have maintained since the beginning of this journey, watching me go through this is the hardest for them. I hope Willis and I never have to go through what they’ve been through.  

Between my diagnosis and my first chemo I reached out to friends and family to let them know what was happening. Within weeks, the house was full of flowers, cards, meals, Uber Eats and Skip The Dishes gift cards, text messages, emails, DMs filled with well wishes, prayers, good thoughts, promises for free movement classes (thank you, thank you friends, you know who you are), tarot card readings, virtual hugs and all around me I felt LOVE. Looking around the house I felt LOVE. A friend of mine I worked with a 12-years-ago showed up at my door with the most delicious food from a small shop in Dundas. It was so wonderful to see her. My friend’s mom and her husband (from when I was A KID. I don’t think I’d seen them for 20 years) stopped by one weekend with a quilt she made for me and books from my old friend’s sister. We had such a great visit and promised to bring the kids over when the pandemic is over and this cancer is GONE. It was so deeply kind of her. My friend Laura immediately arranged a Meal Train based on my chemo treatments. We get four meals a week after chemo from wonderful friends all over Hamilton and beyond. This has been going on since February and we haven’t had a repeat meal once. Thank you, thank you, thank you to everyone who contributed, to everyone whose brought treats and food and and and. I will cherish this love forever. 

So while physically, I didn’t feel great, emotionally I was so high. So lifted. 

Nearing the end of Chemo One’s cycle, I finally got to stop taking the steroids. One evening my parents were over and Willis and I decided to go for a walk to get me moving after a week of being slumped on the couch. I had to walk SLOW. I had to stop frequently. It was surreal not to be able to walk very well after a lifetime of high-energy, skipping, running, walking fast and dancing. Honestly, it shook me. We ended up only making it to the mailbox before I said “we have to go back”. I collapsed on the couch when we got back and told myself this was temporary. The best way I can describe it is, it was like walking encased in cement.

I’ve realized, the beauty of this whole horrible journey, as has everyone close to me, that is everything is temporary and tomorrow isn’t always promised. It’s brought us all closer. I feel closer to my friends, I feel closer to my friends who are family, I feel closer to my family. I feel more grateful for all of the above. 

Some of the joy to come out of this garbage dump that need special mentions are:
1.) How much I’m enjoying my parents being over once or twice a week and how much I love their hugs when they get here. I’m a hugger so not being able to touch people for OVER A YEAR and now having fucking cancer… I need some GD hugs. If you know my husband, you know he is not a hugger (his friends nicknamed him “Surly” in university.** LOL) so having two more people to hug has been a blessing.
and
2.) The diagnosis and this road has brought me closer to my sister, Barbara. It’s so nice to see her name pop up on my phone with encouraging words and emojis. I’m the youngest of four. Two siblings are from my dad’s first marriage, Barbara and Richard. There are 11 years between me and Barb and 10 years between Rich and I. We didn’t grow up in the same house. They were over a lot when I was little, but life is life, and it grows and expands and time zips along, so we don’t see each other nearly enough or keep in touch as much as we should. I’m so grateful for this connection and can’t wait to all be together and share great big hugs when this journey is in the rear-view and the pandemic has passed us over. I look forward to cultivating these relationships for years and years and years to come.

In short, this post is a reminder to tell the people you love you love them. To forgive each other. To know we are all doing the best we can with the tools we were given. To do your best to stop taking this glorious life, even in quarantine, even in a pandemic, for granted. It’s a miracle any of us are even here, let’s soak it up. Let’s spread the love. Today. Tomorrow. Always. 

**Disclaimer: I love you Willis, you’re truly the best and the way you’ve taken care of me and the twins over the last six months has been nothing short of extraordinary. I can see in their beings how much Etta and Clark have thrived and grown from this extra time with you. You do all the things at home and work full-time and you haven’t complained even once. Willis is a saint and everyone who knows him is better because of it. He is genuine. Kind. Caring. He stands up for people. He calls you out when your blinders are on because you’re too entrenched in whatever beliefs you’ve acquired over the years. In short, he has been my hero, my light and my rock. Willis, I can never thank you enough. I will never forget this kindness and will do my best never to take you for granted. I leave you with this poem that was read at our wedding, truer now than it was seven years ago:

Love, by Roy Croft
I love you,
not only for what you are,
but for what I am when I am with you.

I love you,
not only for what you have made of yourself,
but for what you are making of me. 

I love you,
for the part of me that you bring out. 
I love you,
for putting your hand into my heaped-up heart,
and passing over all the foolish, weak things that you can’t help dimly seeing there,
and for drawing out, into the light,
all the beautiful belongings that no one else had looked quite far enough to find. 

I love you,
because you are helping me to make of the lumber of my life not a tavern, but a temple.
Out of the works of my every day, not a reproach, but a song. 

I love you,
because you have done more than any creed could have done to make me good,
and more than any fate could have done to make me happy. 

You have done it without a touch,
without a word,
without a sign. 
You have done it by being yourself. 
Perhaps that is what being a friend means, after all.