Ringing in the New Year: Taking stock

This is what Coban bandaging looks like. I was wrapped by nurses every three to four days for 14 weeks to take down the swelling of unchecked lymphadema in both legs

I don’t know a single person who would say that 2021 was a great year. It was a cruddy year for me.

Let’s see, COVID, a second cancer diagnosis, this one during a pandemic, which meant going to every appointment, exam, CT scan, chemo and radiation treatment alone, a total abdominal hysterectomy and bilateral salpingo-oophorectomy, left uterolysis, right uterolysis, omentectomy and bilateral sentinel lymph node biopsy, chemo and radiation side effects, and now late effects that include an increased risk for bowel obstructions forever, a lifelong restrictive diet, chronic lymphedema in both legs, chronic diarrhea, my Mum’s stroke, advanced dementia diagnosis, and placement in a long-term care home. Wow.

I’m making no jokes about how 2022 couldn’t be worse, because we all know it could be.

Updates since September 27

Things are progressing slowly…

IV hydration. The four days worth of IV fluids turned into 18 days, and I was thankful for every one of them. it made me feel more normal and less sickly.

Mental health. My mental health took a beating—second cancer, physical fatigue, my blood tanking, chemo fog, bandaging, the thought of three of my four limbs now affected by lymphedema—so writing a post was the furthest thing from my mind. I felt sad, heavy in my heart, content to lie in my bed with my legs elevated and my hands folded over where my uterus used to be. No TV, no podcasts, no scrolling, just waiting and hoping to fall asleep.

I have a wonderful therapist at Princess Margaret, clinician-scientist Dr. Madeline Li. She has a three-pronged approach: physical (bloodwork showed extremely low B12, I took a supplement for two months, levels actually went down, so now weekly B12 shots, leading to monthly. Low B12 is associated with depression, and preventing anti-depressants from being effective); pharmaceutical (I started on an SNRI that alleviated pain from my peripheral neuropathy and lessened mood swings. Now we have added an SSRI to work on the depression itself); and talk therapy. She is so very supportive.

Chemo brain. My mood swings, or as I call them, mood spikes, and emotional extremes were very much out of character for me. Sadness was easy to understand, but I would get such rushes of frustration and anger I was shocked. When I went back and took an inventory of my anger, I found that almost all anger stemmed from when my brain wouldn’t work. I had chemo brain with my breast cancer, read all about it, took a seminar or two on it, and it basically went away as I got better.

This time it has been different, and my reaction to it has been different. I’m seven years older now, and my mum has dementia, so I am hypersensitized to comments like: “Oh, don’t worry! I never know where I put my keys!” or “Some days I can’t remember my own name” or “We’re all getting older, face it.” I have never had to write down a six-digit verification code to remember it, now I can barely hold a four-digit number in my head. I have watched my hand pour boiling water into a coffee filter over a dirty glass, dog food into bowl in the sink, spray clorox onto the plant sitting on the kitchen table. I can’t find words I need and the length of silence while I search drives all of us nuts. I lose plot threads in popular shows (Luka and I have worked our way through all 120 episodes of Psych, and I had to go back and rewatch some to understand what was going on, and this is not a complex show. Some episodes I just had to give up). I would get so frustrated, angry, then desperate, then hopeless.

I spoke to Dr. Lori Bernstein, clinical neuropsychologist with the Cancer Rehabilitation and Survivorship Program. She helped me sort out which of my cognitive problems are common with chemo brain, which are stress-related and which are not signs of early dementia. She talked about self-directed neuroplasticity, how to be more forgiving to myself, to not beat myself up when my brain screwed up. That is a tall order, but I’ve been trying and sometimes succeeding. For example, rather than remain silent while I grasp for the right word, I now search out loud, which shows others I’m still searching, and maybe will get me some help.

Leg lymphedema. In the second week of December the stars aligned to get me my daytime and nighttime garments (I had to go to two different doctors, two different physiotherapists and two different fitters) so I could stop the toe-to-hip bandaging on both legs. The 14 weeks of bandaging did their work: I saw my ankle bones for the first time since the summer began. I now have insanely hard-to-get-on tights — putting them on takes 30 minutes on a bad day, 20 minutes on a good one, I’m bathed in sweat by the end of the struggle, my heart rate elevated by 40 bpm — for daywear and nighttime velcro braces, four sections per leg. My legs are now like my right arm and hand, trapped in compression for 23.3 hours a day. I have yet to have a manual lymphatic drainage massage because I’m just not proficient enough at getting the tights on to try and do it in an office setting (I use a very low footstool and the side of my bed frame to give me support at various stages) after I’ve been up and moving around. Goals AF! MLD massage by the end of January.

Gastrointestinal. I am still frigging around with different laxatives to find a combo and schedule that will work. When I think I may have one, two days later it fails. The very restrictive low-residue diet winds its ugly way around, made more difficult now because the dietitian pointed out some days I was only taking in 20 grams of protein, when I need to take in between 80 and 100 PER DAY. Holy waaa! That is close to impossible. My pelvic floor therapy has been on hold. It should pick up in January. So now I keep daily logs of my fibre and protein and fluid intake. I still require 24/7 bathroom adjacency, and that’s where those details end. I had no pain on a daily basis for the first three months, now I have tons of pain. It feels like I did 10 times the rope-climbing and sit-ups that I was supposed to. Like I’m working out like crazy, but I am not. Anything that involves the core—standing up, reaching, straightening up, getting out of or into bed, coughing, sneezing, deep breaths—hella hurts. My nurse sent a note to my onc, who has booked me in to see her early next week. Here’s hoping it’s nothing.

It’s all about the hair. I think the only people who can identify with cancer hair loss are people who’ve had it happen. I was super worried that the delay of my last chemo would screw up my regrowth. My hair was all coming back in when I had the last chemo, then all the regrowth fell out, sending me back to shiny bald. Three months on, I have a half-inch of hair. I was staring at it in the mirror one day and saw a weird pattern in the growth. It corresponds to the straps on my CPAP mask—where the straps go from ear to ear over the head and behind the head. The hair is sparser and shorter under the straps, because I use my CPAP religiously. I love it. My sleep with the CPAP is like Hypnos and his sons are my sleep valets. What to do? Hair wins, so I’m one night on CPAP, three nights off, until I can’t see the difference.

That’s it for now. Bye!

8 Responses

  1. You are the strongest person I know. And the most articulate. Your description of and observations on “chemo brain” are chillingly honest. Your posts scare the crap out of me but also give me hope.

    • Sometimes I feel incredibly strong, other times the complete opposite. I think I am finally on an upswing, in part because of improvements over time, medications and the support of you! The whole leg lymphedema thing has been made easier by those shopping trips in “My Sister’s Closet,” and all the things you sent me to get used to the fact I’ll never wear pants again! Thank you, thank you! xoxox

  2. Hi Jackie, like Heidi said….
    You’re definitely taking a beating but you hang in there every day. I think about you often and send hugs and love across the country. ❤❤

  3. Well said Heidi and Jen.
    I am speechless… to say the very least.. and in awe of your strength and ability to be as articulate as well as ever.
    Thinking of you often and not too far away if you need anything… ever.

    Big hugs and love, Shelagh

    • Aw, thank you. I just wish it didn’t take me so long to get the energy to write something. Maybe that’s why most people Instagram this stuff, but the stuff my eyes see are NOT fit for distribution most of the time! Thanks for saying hi here!

  4. You are a warrior, my friend. Your strength and power leave me in awe. Every success is yet another step forwards. 2022 will be better. Love ya, girl! Sending positive energy and hugs. Always.😘🤗💪🏽

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