My birthday this year was, well, low key. I felt like dirt.
No one could get in the mood.
The Tuesday before I had driven to Stratford to see my mum for a late Mother’s Day visit, and my sister Heidi for an early birthday visit. Tessa and the babies (they’re 3 years 2 months, but still seem like the babies to me) came along.
We met Mum in her backyard, where we sat down to a lunch of chili and uproarious entertainment from the babies. They kept Mum in stitches with neverending stories, chalk drawings of her, bug identification, flower picking and more storytelling.
Oh yeah, hanging out in the backyard with the babies, their mum, her mum and her mum: four generations in attendance!
After an hour, Mum was ready for the indoors and a cup of tea, so we took our leave and headed over to Heidi’s for what turned out to be a private shopping event. A friend of hers owns The Wardrobe, a Stratford institution for the coolest, most creative women’s clothing in town (since 1984!). Because of the lockdown, there was no in-person shopping, so Heidi arranged that I could pick out 10 looks online and her friend would drop them off so I could have a private shopping experience—trying clothes on, showing them off to Heidi, Patty (longtime Stratford friend and number one driver to many of my radiation appointments and all my chemos!), Tessa and the babies (who touched the fabric and said ooooohhh).
Me and the babies, Sasha birthday dress
The clothes were all beautiful—check out the inventory here and you’ll see what I mean. We settled on a Sasha dress in blue from Heidi, and a Penny tunic in aqua from me to me! The freedom of being able to try clothes on at one’s own pace, be the only person in the mirror, be free to try things on again for a second or third look—it felt like I belonged to the rich and famous set.
This is us back at my house, me in the Sasha dress from Heidi. So pretty!
A week later, four days into chemo, I felt like dirt and the birthday vibe just wasn’t there. You can’t will yourself to be happy, and the weight of having to do this whole cancer thing again, and put my kids and family members through it and question mortality and all that, well, it got away from all of us on the 31st. Except my mum, who sent me this email:
Sunday, May 31st, 19xx was a sunny day in Toronto. I was up all night Saturday. L.Ray kept a record of every cramp. You were born around 7pm.Sunday. My hibiscus has a big bloom today, for your birthday?? —xoxo
On my birthday I had a lot of texts and emails full of well wishes. I was a punk in the worst sense of the word, and responded to just about none of them. It took days for the rotten effects of the chemo to lift, and by then I felt embarrassed to write back and say sorry, so I just let them sit. Two weeks after my birthday Kate came over, I felt great. She brought me a present, the Los Angeles Times Harry & Meghan: Their American Life magazine. I love this stuff! Back in the day I was one of those people who stayed up all night in order to watch Lady Diana marry that jackass Prince Charles. The magazine has everything—the wedding, their arrival here, the Oprah interview, you name it.
Along with the magazine she gave me a card, a thick card. Upon opening it and seeing the gift cards inside, I was scrambling for the words to ask if Kate had robbed a Shoppers Drugmart gift card stand or won a lottery, but she jumped in and said “this is from more than just me” and went on to explain the cards were from my team members at work! Wow! I had in no way expected that, and it made me feel so valued, and yes, loved. Away from my actual birthday, with no pressure put on me by me, and no chemo crap, I felt happy. So. I had a different kind of birthday this year, with cancer, and lockdown, but with family and friends showing up for me.
I am lucky.
With stores opened up, I went to a sweet little shop on Dundas St. West, in The Junction, Underworld Lingerie (yes, that’s the name of the lingerie factory in Coronation Street, which I’ve been watching on and off since I lived in Oxford in 1986!). I bought this really pretty sunhat there, which has a good-sized black bow at the back, and this very breezy cotton dress with my gift cards, as well as something to do with my hair, which I will post about soon. Make no mistake, my hair is gone from my head, but in a craft project like no other, it has a second life.
After several months of missteps with PMCC waiting to be vaccinated against COVID-19 (I had my signed letter of Phase 2 high-risk health condition status and 21-day interval and carried it with me everywhere, like a vaccine-wielding good actor might jump out from a pharmacy as I passed), I came back to my workplace.
There were nothing but positive and compassionate vibes at the gym at CAMH for both of my visits, and an optional Hep C while-you-wait test. I am now fully vaccinated, have negative Hep C status, and feel protected in at least one part of my life!
Yes, my hair is super short—it’s disappearing quickly now—and the weird lines pointing up to my right shoulder are the aftermath of my port insertion. They are fading, thank goodness.
Feb 11. Last day at work, taken as a vacation day, packing and pretending I could actually come home the same day if the keyhole surgery approach worked.
Feb. 12. Surgery. When you’re coming in for surgery, you are actually allowed to have someone accompany you into the hospital. That was a welcome change from two months of solo trips for exams, tests, CT scans, MRIs etc., and seemed only fair since Kate had to get up at 5 a.m. to give me the ride to the hospital. We took advantage of the plus-one bonus, and took it as far as we were allowed—a counter where she handed over my CPAP bag (I was told to bring it “in case”)—and then we turned our masked faces and hugged. It felt right and I needed it. Then we said goodbyes. In what seemed like no time flat I was changed into a gown, IVed, seeing the anesthesiologist, getting a central line put in my neck. I knew in my head there was no way the keyhole surgery would work (major abdominal surgery when I was 17 was going to make it impossible), so my biggest issue that night, after the laparotomy, the big surgery, was pain control, followed by thinking my insides would spill out at any minute (delirium, anyone?). On Valentine’s Day Kate visited (one visitor once per week, and Kate was sweet enough to be mine, even though she was technically spoken for by her boyfriend). This was lunch March 15th, the following day:
so it was definitely time to leave! I went home with pain issues aplenty, but convinced the 41 staples would hold my middle together ;-).
March 4. Pathology report. This appointment, of course, was the most important one in the entire process. What did they find?!?? My surgeon took out everything but the kitchen sink (gotta love that idiom), including sentinel lymph nodes, and the report was good: the tumour was entirely contained within the uterus and cervix, no signs of spread. Clear cell endometrial carcinoma (clear cell represents only 3–6% of endometrial cancers. WTF). Some intense information about markers, and then the fact that both surgical onc and radiation onc were both recommending adjuvant radiation to decrease the risk of local regional and metastatic recurrence, and because of my markers, the PORTEC-3 regimen—radiation, brachytherapy, chemotherapy—starting in three weeks.
March 26. PORTEC-3. This Thursday was a doubleheader: I started chemotherapy and radiation on the same day. My first rodeo, 2014 for triple negative breast cancer, was a straight line of therapies—chemo to shrink tumours, surgery to remove tumours, radiation to blast any remaining cancer. This time, it seemed otherworldly to be doing chemo and radiation simultaneously—how to sort out the side-effects? how to determine which ones take precedence? how to keep putting one foot in front of the other? The answer to that one is easy: have an appointment every freaking workday, Monday to Friday, for radiation for 25 rounds and you have no excuse for not putting one foot in front of the other! You don’t miss radiation. The other way to keep it moving is to have amazing family and friends: my kids, Heidi, Patty, Nik, Kate, Pam, Daryl, Nick, Diana, Kelly, Christine, and so many others I think I will have to do a separate post for them.
March 26. Chemo°1. Cisplatin is a platinum-based chemo drug that is super powerful, necessary, has yucky side effects and is resistance-building. The best thing I could say about it after the first round was that its administration was quick, as in two hours! My 2014 chemos were five or six hours long, so this was easy-peasy. Pre-medicating with steroids and anti-nauseants kept things positive for two days afterward, then I felt like crap for four or five days, but the side effects of radiation had already piled on so heavily that I was just 100 per cent miserable. The radiation was every day, the panic was every day, it sucked.
Me on Chemo°1:
March 31. Fancy meeting you here! After less than a week, down in the radiation basement of the hospital, I saw a longtime friend I had lost contact with years earlier. When I saw this woman from the side, then back, I thought “Wow, that really looks like A——!” She is a very stylish woman, and the floral blouse, pleated black skirt, right down to the shoes, looked like exactly she would wear to class up the radiation area. I didn’t want to to pull a “Hey, is that you?” on a woman receiving radiation, but I did re-seat myself strategically diagonally behind her. You see, at radiation a tech walks out to you right where you are sitting and always addresses you by your name and asks how you are before leading you to your radiation suite. I thought either she’ll be greeted first, I’ll hear her name, and can then jump in and say hello, or she might hear my name and I would certainly speak loudly enough for her to turn her head. Chance saw her greeted first, and I said, “Oh my God!” and it was old home week. We agreed to wait after so we could chat, and it was a huge catch-up! She is in her 12th year of metastatic cancer, still getting in for treatment, still plugging away. It made my heart sing to see her again, and we’ve since met up, called and emailed. How amazing!
April 15. Chemo°2. The baby chemo—as I was referring to Cisplatin because it didn’t take long to get—went haywire on the second round. That afternoon was my second round of chemo and my 15th round of radiation. That night I was over at Tessa’s, and started feeling sick, then sicker and I thought my anti-nausea medication wasn’t working anymore. I went home, tried to eat something because I thought maybe I was hungry and not sick, but felt no better. I eventually looked in the mirror and my forehead and neck were red. I felt my forehead and it was hot. I started having wee shakes and took my temp, but it was only 99.1. Over the next hour and a half it climbed to 100.3, which is when chemo patients are officially having a fever and go to the hospital. By that time I wasn’t just shaking, I was shaking hard and I couldn’t control it so I knew I couldn’t drive myself to hospital and that’s when the control-freak in me really started to worry. Because I was shaking so much Graydon came with me in the Uber there. By the time I got there my fever was 40.2 (mental note: maybe get a new home thermometer) and it was 2 a.m. It was a terrible reaction to the chemo that afternoon. At the hospital I had three sets of blood work, ECG, chest Xray, saline IVs with various meds added, COVID up-the-nose test, got Tylenol and Advil and the good anti-nauseant plus sleepy gravol, which of course never really got to work in the sleep department because they were in picking and prodding at me every half hour the whole night. They even did bloodwork looking for heart damage. My radiation doc told the attending that I could skip radiation that day. They released me at 10:30, fever down, as red as a steamed lobster and completely bloated with fluids. I Ubered home and slept til 6. Lots of follow-up over the weekend and Monday at Princess Margaret. I have to say I was not unhappy to have had my last Cisplatin.
May 19. Port-a-cath insertion. My chemo nurses had challenges getting my IVs launched, so at their suggestion I asked for a central line, specifically a port-a-cath. I had one for my 2014 chemos, and while it is creepy having a piece of equipment sewn into my chest with a catheter snaking out of it, it is better than worrying and seeing stuff like this, which happened as a result of the actual insertion procedure:
May 27. Chemo N°3. Welcome back to chemo the way I know it, hours and hours long. I don’t know if this will be a regular thing or not, but instead of a chair in a group room or a hallway, this awaited me:
A room of my own, right across from the nursing station, off to the side. No need for earbuds. I felt relieved, since after two two-hour infusions I was wondered what I would do with six hours and no one for company. Tessa was with me for all eight of my other chemos, and it really helped to move the time along when you can talk and visit instead of endure a procedure that seems to be without end.
The new chemo is lots of pre-meds—steroids, antihistamine, histamine receptor antagonist—and then paclitaxel and carboplatin. I brought a laptop and earbuds for Netflix, crocheting for the devil’s workshop, snacks and water, and a change of clothing just in case. The antihistamine gave me 90 minutes or so of happy drowsiness, and then, a visitor!!! My friend A——- was in the building for scans and appointments, first vaccine under her belt, and we thought we’d try a visit in the exterior hallway, but due to a number of factors, my “private” room, our shared treatment schedules, a wonderfully compassionate nurse and supervisor, we were allowed a very chatty visit that ranks right up there with the best mood-altering meds. Chemo N°3 went off without a hitch, port accessed, snacks eaten, 7.5 hours in hospital and NO ADVERSE REACTION like with chemo N°2. So far, so good.
Mom (with cancer, twice) blog: It's Because I Said So! 