Yay!

Summer-happiness-photo

My scans are clear!

Good news about my lymphedema!

After less than two weeks of bandaging, these two areas of the ring finger on my right hand went numb and feeling didn’t come back. I was told to try taking the bandages off for three hours and see what happened. Nothing. Then, I was told to leave them off for eight hours. Nothing. So Dr. Chang, physiatrist with the Cancer Survivorship Centre at Princess Margaret, sent me for a nerve conduction study (a really freaky test I don’t hope to ever need again) that found it was a branch of the digital nerve, no idea why, no treatment, no reason for it to spread, keep going with the bandaging.

I have definitely been in a stall with this blog, and I blame it all on my lymphedema. And the fatigue, but this post is about the arm. For the last three months everything has been about my arm: it hurts, it burns, it feels bloated and heavy, it pinches, my hand cramps, my skin crawls, it’s numb, it’s pins and needles, etc., etc., ad nauseam. It won’t fit in any clothes, I can’t get comfortable at night, my fingertips freeze, bandaging takes forever, I AM NOT NOR EVER WILL BE AN RMT!

Two weeks ago, after almost three months of massaging, exercising, bandaging and Cobanning, I went from 24% to 11% more than the left arm. Even though I was told that 11% was good enough to move back into a sleeve, my thinking was that if I stopped bandaging at 11% and went to a sleeve, which only maintains your size, the next time I would flare it would be in addition to an arm that was already 11% larger than the other. My flare this summer was a 21% increase, so if next summer I increase the same amount, I’d be looking at an arm 32% larger than my unaffected one.

This may be a flawed theory, who knows, but it makes sense to me.

I was so deflated and hopeless and angry after that measuring that I began the most aggressive bandaging and pumping and massaging (deep and surface) I had the entire time. I stared at that arm with such hatred I think it might have shrivelled a little just from the evil eye.

Yesterday I went for measuring at the Survivorship Centre at Princess Margaret again and there I was—6%!!!

That’s good enough for me! I went to my fitter—Mansuetta—and got measured for a new custom sleeve and glove. The thought of putting these bandages into a bag and burying it in my closet has me giddy. Wearing a sleeve and a glove will feel like running naked through a sprinkler on a scorching summer afternoon to me (that’s me as a kid, not now, God forbid).

In four weeks I will have my new gear, just in time for my return to work.  I’m looking at starting a graduated schedule the first week of December. More of that soon.

Dad’s birthday

It’s another in the year of “firsts without Dad”—his birthday. First Thanksgiving, then Remembrance Day, then his birthday, the very next day. Tessa, Luka and I went grocery shopping and looked for a gingerbread cake, one he loved. We got the closest thing there was—a honey cake. Tessa bought me a present for Dad’s birthday: A round medallion with crystals on it, and four little single crystal charms with it. She said it could represent Dad and his four kids, or Dad, me and the three of them—Tessa, Graydon and Luka.

My Tessa is an old soul, and loves me so much. Her heart is so, so big. I’m afraid I’ve been taking up a lot of room in that heart since I got sick.

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It was a sweet HAPPY birthday!

Happy birthday bliss by Tessa and Luka

Happy birthday bliss by Tessa and Luka, collage by Tessa

Mother’s Day this year found our house in tatters emotionally, psychologically and physically—my surgery was coming up, I was very anxious, I was sleeping far too much and ignoring everything I could.

Several weeks later, one week after my partial mastectomy, my birthday dawned to a breakfast in bed of French toast, trimmed slices of oranges, warmed maple syrup and a wide mug of café mocha on a tray decorated with ribbons of sparkly gauze and gem flowers and a ball bouquet of gardenias. Wow. And there was a Birthday Girl pin for me to put on.

Then Tessa and Luka led me outside my bedroom to show me the decoration they’d put on my door (top right photo). I have always encouraged artistic expression on our bedroom doors, and the collage of Tiffany & Co., Cartier, Chopard, Bulgari and Piaget jewellery that Tessa made for me in Grade 7 was getting pretty faded (!!!, and for devotees of The Secret, I called these items to me every day for the last 10 years or so, and no luck), so these birds who are clearly outside their cage and the pretty flowers will now inform my thoughts.

Then they led me down the stairs to find the hall and kitchen literally festooned with Happy Birthday banners, Happy Birthday streamers, all kinds of birthday balloons taped up, the door to the basement covered with pink birthday princess wrapping paper. In the hall was a HUGE map of the world (I’d been taping up little ones for all of us to sharpen our geography skills and fantasize about where we would like to go one day, but this one is a serious whole-world map).

Tessa had baked extremely health-conscious cupcakes—applesauce replacing oil, whole wheat flour replacing white flour, honey replacing white sugar, and a cinnamon cream cheese icing—and put them on her tiered tea-service plate, with candies and gem flowers and totally sweet little toppers that said “Love you Mom.”

There were gifts, all of them sentimental and revealing deep thought. The one that touched me most was sort of an affirmation of how much the kids know that I have loved them all their lives. Long story warning:

For Tessa and Graydon’s first birthdays I made sweet First Birthday cakes—foreshadowing Tessa’s healthy cupcakes some 22 years later!—carrot cakes with crushed pineapple, applesauce and no nuts. I hadn’t starting baking and decorating my fancy cookies by then, so the cakes were quite elaborately decorated. Luka’s first birthday cake would be no different. I went to McCall’s—the best by far cake baking art supply store, classroom and online presence—and got the blue gel dyes, blue and green and silver dusting sugars, silver drags (known as these teeny silver balls that go on cakes and cookies) (that I researched to see if a one-year-old should eat, and found no research, so decided to stay on the safe side and keep the blue icing and silver balls on the adult part of the cake, not where my little Lukey would be eating) (which brings again my desire to see if those silver things are actually OK to eat—see this link to http://www.snopes.com’s message board on the subject if you, too, are curious…).Back to the store: I also picked out plastic decorations—a pale blue old-fashioned tricycle, hot air balloon, a stork, baby booties, an intricate cutwork banner that said “Our baby’s first.” SO CUTE!

Luka’s first birthday , December 21, fell on a Friday, the party was set for Saturday. Graydon hadn’t been feeling well the week before. I took him to the doctor the morning of the 12, and was called back that afternoon to take him to Sick Kids for stat bloodwork, then back to his paediatrician on the 14 for a full exam and workup in anticipation of an upcoming appointment at Sick Kids. That appointment was 8:30 a.m. Monday morning, Dec 17. That’s the day Graydon was dxed with acute lymphoblastic leukaemia, and we didn’t leave the hospital for two weeks. I stayed at Graydon’s side 24 hours a day, slept on the window seat at night (fitfully), and Al brought Tessa and Luka to visit. But the cake, and the first birthday party as it was planned, never happened. I still have the decorations packed away.

Tessa and Luka bought me a new box of baby cake decorations for my birthday, and I think it echoed the Mother’s Day that didn’t really happen, to show me how much they know that I love them. I love my kids. They are everything to me—Tessa, Graydon and Luka—and the reasons I get up every day.

Sorry for such a long post, but I’m having a surge of energy, and I gotta grab it and take advantage while I can.

My tongue is no longer wrapped in Vaseline!

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Here is a rant I’ve been meaning to have, but haven’t because it seems very petty in light of cancer and chemo and blisters and pain. I had mouth sores that killed, and moved out to the corners of my mouth, which was both painful and pretty, and I did complain about them.

The most annoying, disappointing and frustrating side effect of my chemos has been the fact that I cannot taste anything. That is apart from foods tasting too spicy and hot when in reality they weren’t hot at all according to everyone else at the table. When food didn’t taste too hot, it tasted like my mouth and tongue were covered in Vaseline. Like no flavour could get through, no matter how good it smelled, or looked, or even when I made it myself, and seasoned it just right just like I would always season it—it tasted like NOTHING. And I behaved like Einstein’s definition of insanity: “doing the same thing over and over again and expecting different results.” I made my special spareribs with secret molasses orange sauce, roasted garlic mashed Yukon potatoes,  roasted marinated peppers, even my beautiful cookies, and nothing tasted like it was supposed to. Nothing tasted like anything!

But now, after another rollicking week of not being able to taste anything the way it is supposed to be tasted, I had THE FIRST THING THAT TASTED NORMAL SINCE THE BEGINNING OF JANUARY!!!

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!st prize for a food tasting like what it is supposed to taste like goes to half a toasted everything bagel with Philadelphia herb and garlic cream cheese!

Now of course I’m not going to eat anything for hours in hours, in case this was a fluke. I want to luxuriate in a taste that tastes the way it is supposed to taste!

Congratulations Tessa!

Yes! All these people are congratulating my daughter Tessa!

Tessa wrote her driver’s examination for her G1 license last Wednesday and passed, with, Ta-da-da-da-da-da—100%!!! One hundred per cent! Whoop, whoop, whoop! That’s my girl!

So I will be teaching her the practical side of driving, bit by bit, until we explore the costs and benefits of real driver’s ed. This will be a huge widening of her horizons, and I think she is ready for it. When she was 16, 17, even 18, she declared that she could not be trusted behind the wheel because if she caught sight of a spider on the inside of the windshield, she’d stop the car right where she was and run. Not the actions of a good driver. So I never argued with her, told her she’d be a great driver, just suck up that fear of spiders and bugs and small furry things, and the dark, and loud noises… I told her when she was ready and wanted to get her license, I’d support her.

That time has come. We’ll be starting the Mum’s School of Driving when my bone pain subsides and I no longer need the painkillers (bone pain lasts from day 2 to 7 for most women), which means classes will begin next Tuesday. Yahoo! I’m hoping she’ll consider sharing the congratulatory milk chocolate and almond bark I gave her…

Dogs do Halloween too: my sister’s Dave

Secretly he preened, knowing the girls in the neighbourhood would be jealous.