Back to the bandaging

Here's a photo to celebrate International Coffee Day (http://internationalcoffeeday.org), a day I missed because of sloth-type behaviour of avoiding all forms of media for a couple of days. On International Coffee Day my first coffee was poured down the drain because the organic milk I poured into it was baaaaad. The 2 p.m. cup also went down the drain because Graydon mistook the unsweetened almond milk for grass-fed cow's milk. I can't stand almond milk in coffee or tea or me. Coffee is truly my drug of necessity—to say no to the constant call of my bed I drink a large coffee every hour for the first five or six hours of the day. That is the only way to beat my fatigue so far. This photo is what my days feel like, courtesy of meridian.com.

Happy International Coffee Day (http://internationalcoffeeday.org), a day I missed because of sloth-type behaviour of avoiding all forms of media for a couple of days. On International Coffee Day my first coffee was poured down the drain because the organic milk I poured into it was baaaaad. The 2 p.m. cup also went down the drain because Graydon mistook the unsweetened almond milk for grass-fed cow’s milk. I can’t stand almond milk in coffee or tea or me. Coffee is truly my drug of necessity—to say no to the constant call of my bed I drink a large coffee every hour for the first five or six hours of the day. That is the only way to beat my fatigue so far. This photo is what my days feel like, courtesy of meridian.com.

Being out of bandaging lasted for five days, then back into the Coban bandaging done by Lisa, my physiotherapist. My skin was all cleared up with just Polysporin. Dry blisters and old skin (ew!) meant it was OK to bandage again. I chose to go with Coban again because the trade off is worth it—$32 not covered by OHIP or my work health insurance plan, but it means I don’t have to do that ungodly bandaging or massage. It does mean I have to do mad lymphatic system pumping exercises and diaphramatic breathing (very hard on my scrambled brain to be doing movements, counting and regulating my breathing the whole time) (and embarrassing to have to admit that that combination of doing three things simultaneously is hard!!!). Since the Coban bandages have absolutely no stretch, when one gets the lymphatic system really pumping there is nowhere for the excess lymphatic fluid to go except out of the arm—or that’s the plan anyway.

I see Lisa tomorrow for the cutting off of the bandages and measuring to see if I’ve made more progress. Then, on Tuesday I go back to the Lymphedema Clinic at Princess Margaret and have the major measurements done to see how the arm and hand compare to my pre-flareup size. I’m not sure what the goal is according to them. According to me I want to be right back to the pre-flare measurements, so when I flare up again (keeping in mind that this is a chronic lifelong condition and I will flare again) it will be on my original lymphedema size, not on top of a new, bigger normal. If I reduce to, say, 6% larger than my left arm and then I flare again, it’ll be on a bigger arm. At that rate, my arm will just swell and swell and harden and harden. I picture a Violet Beauregarde scenario, and it isn’t pretty.

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Is a recording contract next? or, Lebed Healthy-Steps isn’t just exercise

Me and the girls from my exercise class just belting one out. (This photo shows The Five DeMarco Sisters, Arlene DeMarco, centre, who performed with the likes of Frank Sinatra, Jerry Lewis , Ed Sullivan and Jackie Gleason. Photo courtesy Noah K. Murray/ The Star-Ledger)

Me and the girls from my exercise class just belting one out. (This photo shows The Five DeMarco Sisters, Arlene DeMarco, centre, who performed with the likes of Frank Sinatra, Jerry Lewis , Ed Sullivan and Jackie Gleason. Photo courtesy Noah K. Murray/ The Star-Ledger)

 

Quick answer: no, but it’s certainly a start 😉

Every Wednesday since October I have pulled on yoga pants and top to take part in an exercise class. The last time I did that was before I had Tessa, pre-1991, and that was with my sister Heidi. We had joined Premier Fitness Clubs, and would go there and do weights and machines and a class and then sit in the parking lot and have a cigarette and wonder when we were going to start feeling that wonderful exercise “high.” I never did.

Now I drive downtown to Toronto General Hospital every Wednesday for an exercise class designed to increase lymphatic flow. I do not have a cigarette afterward—quit that for good in 1999—and I do feel good afterward. The Healthy-Steps Lebed Method exercise program was designed by two doctors and a dance movement therapist to heal and prevent complications from all cancers and chronic illnesses, with a special nod to those thrivers/survivors of  breast cancer and lymphedema (the dance-therapist co-creator has both, plus hep C). From very humble beginnings, the classes are now available in 900 locations around the world, and Toronto General Hospital is one of them.

I am not a joiner, a cheerleader or a dancer, and frankly, I really had to force myself to even sign up for this class, let alone take the elevator to the basement to find the room. It’s part of ELLICSR, the very name of which conjured up the taste of a nasty medicine. The full title is ELLICSR: Health, Wellness and Cancer Survivorship Centre (the acronym stands for Electronic Living Laboratory for Cancer Survivorship and Research) and after spending time in this warm, peaceful, multi-use space I think the long-life, changing-base-metal-into-gold definitions for elixir are more appropriate.

There are two certified Healthy-Steps instructors for the two weekly classes: Barbara Jenkins and Stephanie Phan. The Lebed organization announced a contest for a theme song last fall, and sent out guidelines for the song, including a long list of words and phrases that had to be in the song, all of them buzzwords for the exercise program: “smooth, slow resistance” and “Sherry, Mark and Joel”—not exactly lyrical on their own! Barbara took on the challenge of writing the song, and set it to the tune of the World War I marching song “Pack Up Your Troubles in Your Old Kit-Bag, and Smile, Smile, Smile.” She worked it out so the words perfectly fit the tune, then printed them out and took us through practices before and/or after class for weeks.

The women I exercise with are sweet, funny and very brave. They come from Etobicoke, North Toronto and downtown (Scarborough too, I’m sure) with headscarves, curly chemo hair, stylish short cuts and a few with beautiful full heads of hair. We blow bubbles—to increase deep breathing—do leg raises to work on balance, and do all manner of “jazz-hands” moves to get that lymphatic fluid moving past zapped lymph nodes and back into the system. Singing wasn’t exactly on the program description, but when you listen, stretch and dance to Adele, The Beatles and Beach Boys, UB40, ABBA, Pit Bull, Madonna and Stevie Wonder, what’s a WWI marching song? Barbara and Stephanie had us sing it a few times to get it recorded, and then sent it off to Lebed. The winning song would give the creator, host organizations (TGH and PMCC) and songstresses bragging rights for winning an international competition. The song will be played at Lebed functions and conferences, and be on the website—whether it will be our voices remains to be seen.

Weeks later, we got the word—we won!

Congrats to Barbara for doing all the work, and to Stephanie and all my fellow thrivers/survivors for hitting those high notes (or not) and laughing all the way through. And that was in the fall. This winter Barbara choreographed a dance for a second competition, this time to The Beach Boys’ Kokomo, and we did it on video with paper palm trees, beachwear, Hawaiian shirts, flowered skirts and flip-flops. It’s been like the summer camp I never attended. And it has been lots of fun. So much so it’s almost possible to forget, for a while, why we’re all here.

Found on huzzah-huzzah.tumblr.com

Found on huzzah-huzzah.tumblr.com

And the hits just keep on coming!

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I got some excellent news when I saw my oncology surgeon week before last. The mammogram was fine, nothing to report there. Great news! I really wasn’t stressing out about those results since no tests, not mammograms or ultrasounds or MRIs ever found any cancer in my breasts (or anywhere else) in the first place.

He poked and palpated, and I said ow, oooh, that hurts, that’s really tender. He seemed mildly surprised. Then I asked him if I should be asking him, or my plastic surgeon, or my oncologist, or even my radiology oncologist, why my hand hurt so much, and why the length of my arm on the inside, and my upper arm and breast, still hurt so much. I explained that I’ve had arthritis in my wrists and thumbs for years, when he said, “Give me your other arm.” He held them both to the front, examined them briefly and—here’s the crap news—said, “You have lymphedema. I’ll refer you to the Lymphedema Clinic at Princess Margaret.”

It was like something clamped my heart, stuffed it in a lead box and slammed the lid shut.

I had a very out-of-proportion fear of developing lymphedema from the very beginning of my cancer. My lymph nodes were the only evidence of my cancer, so I knew from very early on that they were stuffed with cancer, and they’d be going. Once the lymph nodes are removed—I had 15 taken out—the lymphatic fluid builds up in the limb—right arm for me—because the mechanism to keep it flowing out of the limb is gone.

I went to a seminar on lymphedema at Princess Margaret Hospital. I made copious notes, asked questions, asked questions about the answers. I was told that lymphedema happens to 20 to 30 per cent of women like me. I did every single thing suggested as a way to avoid and not trigger lymphedema, and I’ll list them in a later post.

I will have the condition for life. I have had a lot of time to train myself to put breast cancer as far back in my mind and heart as I can, so I can live without constant thoughts about it. But lymphedema? How can I ignore not seeing the knuckles in my right hand? I now have that rubber-band wrist that is so adorable in chubby babies, but is gross and unnatural on me. And the feeling of pain and tightness and fullness.

I held it together in his office, because it was the very end of the appointment. I cried in the change room, at the elevator, with my oncologist’s secretary (she was very sweet), then when I got to the car I just sat there and bawled. It was for me, a lifetime sentence of lymphedema, for triple negative breast cancer terror of metastases, for pain, for my dad… you name it, and I cried it out.

It will take the referral at least four weeks to get through the Lymphedema Clinic, so on the advice of my cancer navigator, I made an appointment with a registered lymphedema specialist at a physiotherapist office. That’ll be in two days. My man is coming with me to learn the different therapies, particularly the lymphatic massage. More on that after Thursday.

For now, it’s sleep I crave. I have been keeping track of my sleep hours in 24-hour cycles. Last Wednesday, Thursday and Friday it was 18 asleep/6 awake; 14/10; 16/8. Fatigue causes a lot of guilt, and I never feel rested. It’s a ripoff.