Results from the one-year goodbye-to-breasts-and-lymph-nodes-surgery appointment

Nothing but….
Thank you to http://www.thetimeshareauthority.com/2012/12/27/good-news-you-are-due-a-well-deserved-timeshare-rental-vacation/ for the photo of my future.

 

Up on time, out the door on time, at the front door of St. Mike’s on time, thanks to Nik! Yay!

Appointment with Dr. Jory Simpson—kind, smart, compassionate, calming, handsome—went swimmingly. It’s all good.

Bloodwork before seeing my oncologist, Dr. Christine Brezden-Masley—kind, smart, compassionate, encouraging, beautiful—during which I tried to have a read on my Vitamin D level added in, only to find it costs $110 (!!! what?!?! all the forums I’m on say be sure to get your Vitamin D levels done! who pays for that? not OHIP, so I’ll just be taking my 2,000 IU daily and hope for the best). After plenty of “me time” in the waiting room (I had a laptop, but my arm and hand are killing me…. ), my appointment with her went really well too. See answers to my questions below.

1. What’s with this damn fatigue, really? It is what it is. Your body went through catastrophic systemic trauma from the cancer itself, two months of testing, four months of dose dense chemo, operations and procedures, radiation—your body needs time to heal. Cut yourself a big break. Everyone is different.
2. How much longer will my right breast keep shrinking? Likely done shrinking now, but ask your radiation oncologist (August 12).
3. Will my finger- and toenails ever return to normal? Not sure (the Beau-Reil lines are gone, as is the koilonychia, but they are still lifting off the nail beds and every type of nail polish bubbles up off them. Yuck. I need to find a cancer-experienced manicurist. Anyone?)
4. Can I have my radiation tattoos removed, and are there any special instructions? Don’t see why not, but ask your radiation oncologist (again, next appointment with him is August 12).
5. When do the docs start counting survival? At diagnosis (the doctors’ or my self-diagnosis, which are eight weeks apart? of adenocarcinoma or the real deal—triple negative breast cancer? I’m taking the date of my first chemo treatment, since up until then I was doing nothing to fight the fu**er. Asterisks for my mother and mother-in-law 😉
6. Is there anything special about survival with triple negative breast cancer that isn’t covered in the media? Nope. The first three years are the ones to beat for recurrence.
7. Will I be getting any extra MRIs or scans since my tumour was never found? Nope. Just standard mammograms, next one in October. Which seems a bit nonsensical since no mammo or MRI or ultrasound or mastectomy found the tumour in the first place, and triple negative rarely comes back in breast tissue anyway.

So, Dr. Brezden gave all my head and neck lymph nodes a good manipulation, and we had a good chat about how difficult it is not to wait for the other shoe to drop. That’s my nagging feeling, which I am sure that having a hormone to take would allay, but who can say? My cancer is still in remission. I’ll see her again in December, Dr. Simpson, my oncology surgeon, in October.

Onward and upward, fatigue, chemobrain and lymphadema are the enemies of the moment now. Survivorship is the goal.

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)

 

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.

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