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

Seven years of blogging; or, have I really been doing this since 2007?

Wordpress's anniversary award

WordPress’s anniversary award

After more than a month of not posting (thank you to Tessa, daughter who even at 7,457 kilometres distance can still get me to do what I’m supposed to be doing but are not) I got a little award thingy in my blog mail—see above.

I am, I stress really am, working on my fatigue by sitting with it in guided meditation, and slippery brain, and self-massage with skin care and compression garments, and lymphatic openings and exercise. I know I said I would post more often, but I am exhausted, and I honestly don’t have anything interesting to say. Sorry Tessa.

So, for this post, which WordPress marks as an anniversary, I’m going to re-post my first entry to this blog. It had a far larger audience than I now have, because I was the Mom Blogger for Canadian Living magazine then, and eyes were reading from across the country. In this post I introduced myself to them:

 

Mom blog: All about Jacquelyn, the mom blogger

momblog1

Posted on  by itsbecauseisaidso

 

Hello. If you are reading this, you are the witness to the very first words of Canadianliving.com’s Mommy blogger. I am thrilled to be here – winning the reader poll to become the Mommy blogger is on my Top Ten List of Achievements, along with giving birth to my three incredible children, beating back my son’s leukemia, being nominated for a National Magazine Award, hanging on to a marriage for 19 years, quitting smoking, and the rest are state secrets.
THE REMAINING ITEMS ON MY TOP TEN LIST OF ACHIEVEMENTS
One thing you’ll learn about me is a secret is a secret. And a state secret is even more sacred. Don’t ask me how old I am.
LET ME INTRODUCE MYSELF
I am a mom (I prefer mum – my kids call me “Mummy” not “Mommy”) (when they’re not calling me Goofy-Head, or Boss, or Mummy-Dearest, or Slave-Girl-Mummy – this is only allowed from my six year old). I have three kids whom I am currently in negotiations with regarding their privacy, the parameters of their exposure in my blog, any possible compensation – this is where I start laughing hysterically and negotiations predictably break down. The cat, Angel, who is nothing like her name, lives here, as does Nibbles the hamster.
NIBBLES, OR SHOULD I SAY NIBBLED??
When things were getting very stressful in our home a couple of years ago, the kids thought it would be good to get a hamster. They actually thought it would be way better to get a dog, but I’m not that crazy. I was crazy enough to be talked into not one hamster, not two, not three, you get the idea. We had six hamsters at the height of our love-in, in five cages. We were told that sisters could live together in the same cage. Miss Jellybean and Princess Lou Lou shared a cage for quite a while, until one day we thought Jellybean had escaped. But how could she escape when the door was near impossible for us humans to open? Realization dawned ugly when we spied a wee half-square-inch of Jellybean-coloured fur. Hamstericide!
THIS IS TAKING A CREEEEEPY TURN
Suffice to say, Jellybeans’s piece of fur was carefully wrapped and boxed and shrink-wrapped and triple Ziploc-bagged and put in the freezer alongside Hammy Yu-Gi-Oh, Crazy Connie, Victor and Ooch, to wait for the spring thaw for appropriate internment. We got a few more hamsters, among them Nibbles and Bunny. Sisters. Did we put them in the same cage?DID WE PUT THEM IN THE SAME CAGE????
Read my next blog to find out.

Illustration courtesy of Juli Waller at www.grrrdesign.blogspot.com.

You can go here too: https://itsbecauseisaidso.wordpress.com/2007/09/21/canadian-livings-mom-blog/

 

Now, I will aim for an original post in less than a week. Promise. ;-)

How’s the family?

Warmth in the Cold, by Katie M. Berggren, says it all for me and my three kid lets up here in the frozen north (tomorrow morning it'll be -30°C again!). Her paintings are all about motherhood, and all are available as prints—her website is http://kmberggren.com and this piece is here: http://shop.kmberggren.com/Warmth_In_The_Cold_mother_with_3_children_print_p/warmthinthecold.htm

Warmth in the Cold, by Katie M. Berggren, says it all for me and my three kidlets up here in the frozen north (tomorrow morning it’ll be -30°C again!). Her paintings are all about motherhood, and all are available as prints—her website is http://kmberggren.com and this piece is here: http://shop.kmberggren.com/Warmth_In_The_Cold_mother_with_3_children_print_p/warmthinthecold.htm

How’s the family?

Enough about me. Tessa is carrying four university courses from Queens University while living here at home. She is down to just 13 hours a week at the health-food-vitamin-supplement-organic-produce store Healthy Planet because the school workload is 46 hours per week, and she puts in more than that because of her need to succeed and her drive for perfection (very tough in an arts program). She has been saving every spare dime for the next trip to Russia. The official invitation has arrived, she has purchased her tickets, and she leaves in seven days. She had wanted to be home for my next surgery and recovery, which we all thought was going to be in January, but is now looking like May. I will be very lonely for her company, but true love cannot be denied (it can and has been delayed a lot already!) The miracle of distance education—she’ll be sitting exams for Queens University with a proctor somewhere in Kostroma in mid-May.

Graydon has started his second semester of a jewellery design course, specifically a casting course. He has a real design sense, and has mastered markers and airbrush and canvas and skateboards, so carving, modelling and casting is an excellent way to move into three-dimensional design. The fact he can wear his work is a major plus.

Luka continues in gymnastics, laying the foundation for a career in parkour. His instructor last week was a circus arts dude who makes his living at it, so that is inspiration. On the flip side, Luka survived his first week of exams in high school, and today he got the results and his first term marks. 86, 83 80 and 76, for an average of 81.25!!! This from a guy who for years despaired that he was “the stupidest one in the class.” Makes me wish that I had given in years sooner to medicating his diagnosed ADHD (Inattentive). It would have spared him years of feeling stupid. A case of mother is trying her best, not mother knows best.

How are the pets?

Clover is excellent. Princess and Dixie are excellent. Benny has back off running outside because of snow taller than he is and morning temps of -15 to -27. We all feel better when he stays in the house anyway. Angel, our 16-year-old Birman kitty, has had a visit to the vet and has early stage kidney failure. The vet says she’ll likely be manageable with a low-protein diet for six months or so, then she’ll show symptoms and go downhill. That’s very sad, and makes us all let her sit on us or our computers any time she wants, feed her butter off a spoon, get her fresh water ninety times a day. But she is in no pain and is still limber enough to leap onto the kitchen counter from the floor (in search of butter and fresher water). So we’ll buy her fancy food and pet her tons.

How is the car?

Wouldn’t turn over for 20 minutes after exercise class and an appointment at Princess Margaret. Graydon and his friend looked under the hood and found that my battery was missing all the caps that cover the openings to the fluid inside—battery acid or electrolyte or whatever that stuff is. I took the car to Canadian Tire. Dude came out in the parking lot, looked and said no way would they ever have removed those caps during my last oil change, and he’d never seen anything like that and they couldn’t fix it, but maybe I’d like to go back to the dealer and see if they could help.

Weird coincidence, I received a notice about a factory recall for my model and year of car for an airbag issue, so I got the factory recall and new battery, killing two trips to Mississauga with one drive.

How is the dishwasher?

Unusable. It’s as if someone pulled it out (it’s a built-in) and shoved it back in crooked, because the door wants to close half an inch to the left of where it is supposed to. It will close under great protest, so with the basement flood of January, I am NOT going to run the dishwasher and see what happens. It came with the house when we moved in back in 1992, and has worked for 23 years without even a service call, so it’s earned its retirement. We will now use it to hold the overflow of pasta pots and sauté pans that I’ve been stacking on the back burners of the stove for years.

Washing dishes by hand is not the best (read: is really bad) for my lymphedema, because it puts my hand in a forced down position (gravity pulls the fluid farther down my arm and fingers) and in hot water (it’s recommended to use water no hotter than 90°F or 32°C—that is blasphemy for washing dishes in my house, where the more scalding the water the cleaner the dishes). I’ve told the kids they’ll all be sharing the new joys of handwashing dishes, or they can do the arm and trunk massage on me to get rid of the extra pressure I’ll have if I do all the washing. We’ll see how that goes. Massaging mum’s arm, hand and fingers doesn’t sound so bad, but trunk??? That should flip them right out. I hope.

How am I mentally? Emotionally?

Rather than another avatar (I love my "Queen for a Day" one too much to ever change it), I have adopted a    mammalian mascot to represent me in my blog and at public functions. We share a personality profile, sleep pattern and ugly nails, among other things.

Rather than another avatar (I love my “Queen for a Day” one too much to ever change it), I have adopted a mammalian mascot to represent me in my blog and at public functions. We share a personality profile, sleep pattern and ugly nails, among other things. (Pic courtesy animal-kid.com)

Preamble

I say I will post more frequently in an attempt to engage in thinking, examining my thoughts, planning, typing, sourcing photos, etc., and so here is a little example. I started this post immediately after the “How am I physically?” post. That was Feb 13.  I came back to it at least four times. I had two appointments on Tuesday, one very emotional. I  fell asleep at 8 p.m., woke at 8 a.m. to make lunch and drive Luka to school, then went right back to bed at 8:50 and despite Tessa’s attempts to wake me, I missed my exercise class and a planned lunch after that. I couldn’t wake up, rouse, get my crap together, even when I knew I had to move. I slept until 4. I was asleep again between 7:30 and 10, then bedtime until 8 a.m. Fatigue sucks. Today I got Luka to school and I have a 1 p.m. appointment downtown. I am on my fourth cup of coffee. Now on with the post it took me six days to compose.

How am I mentally?

Lousy, low, lacking in confidence that my brain will recover and that I will stop craving/hating sleep. My brain feels as if it has turned to mush. I can’t get to the end of medical articles, the type of articles I eagerly inhaled even six months ago. Julia, work friend and fellow traveller in Cancerland, sent me a hopeful article a couple of weeks ago and I couldn’t even make sense of the illustrations, let alone the text.

What am I doing about it?

Reading. Doing soduko. Doing crosswords. Taping all appointments and playing them back so I can try to absorb more of what is said. Making lists. Beginning guided meditation for body sensing. Trying to find things that make me feel better, and do them.   This is actually very difficult, which I never would have believed before.

How am I doing emotionally?

Lousy, low, sad. Finding it very difficult to move forward. Three weeks ago I ran out of hot water while doing dishes around 6. I saw it as a sign to stop washing. After sleeping all evening in the living room, I couldn’t get any hot water while brushing my teeth. I took that as a sign to skip washing my face. In the morning, still no hot water. So at 11 I went to the basement to see if a switch was flipped and found the basement flooded from one side to the other, pouring down the floor drain, trapped everywhere around all the boxes and piles of laundry. A complete nightmare. The hot water tank rusted out and sprang a huge leak at the bottom, and just ran all night. We use the back half of the basement for storage, and while some things are in plastic boxes, lots weren’t. I had to throw away boxes of kids drawings and artwork, and photos, and magazines with my articles in them from pre-internet days. The living room and kitchen are still stacked with boxes and baskets and Christmas stuff, despite the fact I’ve been washing and sorting and tossing stuff every day. I would try to draw some parallels between the basement and my psyche, but it looks like too much work and I’ve no energy for it.

What am I doing about it?

Trying to get outside myself, meet up with a friend, do something nice for myself that doesn’t involve a trip to the Lindt outlet store or a bag of salt and vinegar chips. Got a new water heater. Make a little cleaning goal every day and try to do it.

How am I physically?

I know a post ago I said that I was going to try writing more often and see if that helps with my outlook, and it’s been a slow start (better than a no start, I tell the dog). So tonight I’m going to give my state of the physical address.

My right hand with lymphedema, in need of major massage to force all that fluid back up my arm, over and across the right shoulder and down into the neck area where lots of lymph nodes are hanging out, looking for work, I hope.

My right hand with lymphedema, in need of major massage to force all that fluid back up my arm, over and across the right shoulder and down into the neck area where lots of lymph nodes are hanging out, looking for work, I hope.

When my hand is like this, it hurts a lot!

When my hand is like this, it hurts a lot!

So, how am I physically?

I am managing my hand, arm and trunk lymphedema with twice daily self-massage. Graydon and Tessa each came to an instructional session at Princess Margaret’s Survivorship Program for the decongestive massage and filmed it each time. Pam was the therapist both times, and she was amazingly patient and accommodating about filming. I have found that it really helps to have the video when I do the massage myself, both for pacing and remembering to do all the parts of the massage routine. I am taking a second session of Lebed Method Healthy Steps exercise classes at Toronto General Hospital, designed for opening up and promoting lymphatic drainage through the whole body, which I need to keep the swelling down in my right fingers, hand, arm and trunk, and reroute that fluid to other lymph nodes. I try to do a modified (shortened) version every day at home—the days I do it I feel better in the arm and chest. I need to do aerobic exercise, but am having a hard time keeping that up five times a week.

The fatigue continues, and is the most frustrating thing I face on a daily basis. I didn’t “believe” in fatigue before, now I believe it but I hate it. Fatigue usually lifts a few months after radiation, but I’m five months out from radiation and still bagged. After seeing my psychiatrist last week, and running two more errands, I slept from 4 p.m. to 10 a.m. the next day. 18 hours. On days I have to get out and do stuff, I need to drink a large coffee every hour or so until I am done, then it’s water. If I don’t drink coffee, by 10:30 or 11 a.m., whether I have exercised or not, I need to sleep. That sleep can be two hours or six, and if there isn’t a huge reason to get up, I can nap all evening and then sleep all night, punctuated by my mind waking up to rattle through bad thoughts for 10 minutes or two hours. If I can will myself back to sleep, great. If not, I lie there with a body that can’t get up.

I have breast surgery coming up. The right side has continued to shrink thanks to the radiation, the gift that keeps on giving. The plastic surgeon left my right breast a fair bit larger than the left after my surgery, because radiation hardens and shrinks the breast tissue. That way, depending on the shrinkage, the two breasts might end up close in size. No luck in my case. They are now at least two cup sizes different, which means no bra can possibly fit. And the difference is definitely noticeable by more people than just me. I have thought about going with a prosthesis, but there are enough other things that need to be fixed and rejigged that surgery is planned. I’ve had the surgical consult, reviewed expectations, procedures, recovery. Now I wait for an appointment to sign my consent papers, and then I’ll be scheduled. I don’t want surgery, but this damned cancer has screwed me over enough already, I don’t need to see more evidence of it every time I look at myself.

Miscellaneous items: My hair is coming in like I always thought it would if it was ever short—curly at first, now wavy, just as thick as before, texture still silky. So, except for the natural dirty, dirty dishwater blond colour, it’s not so bad. I still want my long, blond highlighted coif, so I am not trimming it in any way—just keep it growing! My right breast hurts all the time inside. On the outside, there is no sensation, and I still have no sensation under my arm and around to the back. That makes the massage feel really freaky—my left hand knows what it’s doing, but my right arm can’t report back. Weird. My toe nails are not growing back. This will start panicking me soon, because I go barefoot from May to October, and those toes look like photos in a medical journal. I can’t even paint them, because there are no nails! Fingernails are much better, as in I have nails on all ten digits, but they don’t adhere to the nail bed very well yet, so lift up a lot, have bubbles and ridges in the nails themselves, and peel and split a lot. But, I can paint them, so it’s OK.

 

World Cancer Day. What?

WCD_15_Graphics_Lockup01_150ppi

“Now, more than ever there is a need for a global commitment to drive policy and implementation of what we already know to push the global fight against cancer to a whole new level. Action taken by every person, organization, and government will reduce the burden of cancer. On World Cancer Day, we must show that cancer is ‘Not Beyond Us’.

——Mary Gospodarowicz, UICC Immediate-Past President, Medical Director of the Princess Margaret Cancer Centre at the University Health Network

That quote is from one of my two cancer hospitals. When I heard that Wednesday was World Cancer Day, I thought I should do something. My very first reaction was to bake cookies—Valentine’s is around the corner, cookies are top of mind, and as a baker of fancy cookies, each special occasion has a cookie to go with it. But this one doesn’t really, aside from cookies with ribbons of various colours.

So I thought maybe I should go to an event and lend my support. Wednesdays I attend an exercise class that increases lymphatic drainage, so I am up, dressed and sociable for the most part, and tomorrow I am meeting an old friend for lunch after the class. I would be thrilled if we could get through the lunch by not even touching on cancer, let alone celebrate it or spread the good word. Time to look it up on the inter webs: World Cancer Day.

Not too many things to do to celebrate World Cancer Day. There’s a selfie contest, and the screening of N.E.D. , but I found a very real way to spread the word: my cancer IQ self-tests. I did the online test for breast cancer, just five minutes of my time, and guess what my risk for breast cancer was?

YOUR RISK: HIGHER THAN AVERAGE

An average Canadian woman’s risk of developing breast cancer in her lifetime is 1 in 9. Your risk for developing breast cancer is higher than most Canadian women. Use the information in your risk assessment report and talk to your doctor or nurse practitioner about what you can do to help reduce your risk.

Well, with the benefit of hindsight, you can see how accurate the scoring was on that one! They have quizzes for colorectal, lung and cervical cancer as well as breast.

So, sorry, no cookies to celebrate World Cancer Day, just some info to share that might save your life. Go figure…

Stalled

 

Oh man oh man, this is SO how I feel now… a poorly functioning entity surrounded by disaster.

Oh man oh man, this is SO how I feel now… a poorly functioning entity surrounded by disaster.

Wow, it’s been a month and a half since I last posted, and it feels like a year ago or just a few days. December was a month of crappy anniversaries (my diagnosis, terrible holiday, start of my chemo, Graydon’s leukaemia diagnosis and three weeks inpatient, including Christmas) plus the first Christmas without my dad. My boyfriend was wiped out with flu, so we didn’t see each other for more than a week. I was exhausted, so at the last minute we didn’t go to Stratford on Christmas day like we always do—I slept most of the afternoon and evening, getting up on autopilot and frying chicken breasts for Christmas dinner—what a disgrace. We did go to Stratford Boxing Day and had lasagne made by my sister-in-law Sandra—delicious. We visited with my mum, Sandra, Ed and my nieces (in town for a couple of days), sisters Heidi and Juli, and my real BFF, Pam. She lost her dad a few months before I did, and then her mum died just before Christmas, so it was a sombre time in their lovely house. There were many, many occasions where drinking would have been the best answer ever, except the connection of alcohol consumption and breast cancer is so huge, I barely drink at all now. Maybe this is part of the problem—no lubricant for my rusty heart, brain and soul.

So it is now a full year since I started treatment. My testing, diagnosis and chasing the elusive-and-never-found tumour were in November and December 2013. Started chemo December 30. Had bilateral partial mastectomy May 22. 25 rounds of radiation in July and August. Severe burns and fatigue September and October. Lymphedema in right arm, hand, fingers, breast and trunk November, which will continue forever, and fatigue and brain fog (cancer-treatment-related cognitive dysfunction) that continue to make me not myself at all.

Is it my new normal? I HOPE TO GOD NOT!!!

I haven’t posted for six weeks because I was very down. I am now going to try to crawl on up out of my hole by doing things suggested by my cancer navigator over at St. Mike’s (Miriam Sweet-Goldstein, a very sweet—really, a totally appropriate adjective—and concerned woman who has walked the walk herself and now helps others to do the same; she takes the time to listen, and has great suggestions), and by Lorena and Stephanie in the Cancer Survivorship Clinical Program at Princess Margaret. I have not “bounced back” from my cancer side trip, and need to. Facing my mortality, the fear of recurrence, my lifelong lymphedema condition and now the changes that plague my energy level and brain have just been too much for me. For years and years, people who know me well and the misadventures of my family members have said to me “I don’t know how you do it every day!” Well, after this last year, I’m just not able to do it anymore, and I have to change that.

I’m taking on the commitment to post more often as a way to think and type and spend work-type time on the computer. So the posts will be smaller and more frequent.

Thank you for hanging in here with me—if you’re still reading, that is.

Say hello just to let me know? I’m hoping for four responses…

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