As useless as…

teapot choc3

A picture is worth a thousand words? Picture Credit: Creative Commons Attribution ShareAlike 3.0 License- Commonsenses at ja.wikipedia

As useless as a chocolate teapot…. I first heard that expression when I lived in Oxford, and have loved it ever since because of the perfect image it creates. Now I’m finding that it perfectly describes the way I have been feeling for week and weeks. I can’t really achieve anything. I put everything off. I lie for hours, and that is no exaggeration, in my bed in the middle of night with my mind bouncing from one scenario to another, none of them good. I decided to post in my blog about this cancer side trip as a way to keep family members and friends updated, as a way to record triple negative breast cancer treatment for others who might want to know, and as a record of what happened for me to read later. But lately I haven’t been able to find the energy to write anything. Am I wallowing in self-pity? I ask myself that over and over. Is it depression, despite the antidepressants I take? Is it exhaustion from the radiation? I’m only on the eleventh treatment—does it set in that quickly? Or is it chemobrain, or brain fog? I have resisted that concept since the very beginning. I don’t know if there is a technical term for the state of feeling useless, but whatever it is, I don’t like being here.

Deported!

PortaCath

I am no longer the unhappy host of a purple heart-shaped power port! My chest is appliance free!

Last week I was at St. Mike’s at 7 a.m., two bruises on my arm from unsuccessful blood draws the previous day, for the procedure. An hour later, paper booties and gown on, I had the start of two more bruises and was waiting for the “IV nurse.” I don’t know if that’s an official title, or she was called that because of her reputation, but two minutes after she walked in, she had the IV launched. I met a very sweet nurse outside the operating room who said no problem to medication that would have me cool and calm through the procedure, then met the same doctor who inserted the port in February, and it all went off without a hitch. It took half as long to take it out as it did to put it in.

I did have a special request, which was to take my port home with me. Not for me, but for Graydon. When his port was removed when he was 11, after 30 months of chemo, SickKids refused to hand it over—too degraded. So when he asked for mine, I said sure, and the doctor said sure too. He also said Graydon was getting a far better one than what they used in 2001, when his was inserted. They popped it into peroxide, and when they handed it to me, it looked like it would make a nice pendant, with the right wire and beadwork.

The doc left me with an incision that is barely visible—it is incredible. I’d post a pic of it, but the bruising obscures the line right now, so it’ll wait.

Back in my little day surgery cubicle, I had another super nurse who went to bat for me for a pain med—the early hour I had to leave the house that morning left me a little scattered, and I left my meds dosette at home, and I was going directly from the procedure at St. Mike’s to Princess Margaret for radiation, and the freezing was already leaving my chest!

She came through, and that, with my good pills at home for the next day, was all the pain medication I needed. I give St. Michael’s Hospital an A+ for this day.

One more step to the end of treatment out of the way!

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.

It’s hard to be vain when you look like this: Another post devoted to my hair

Finally, enough hair to show up in a photo!

Finally, enough hair to show up in a photo!

I finished my chemotherapy on April 8 with four rounds of Paclitaxel. I took this photo last night, June 26, and there’s enough to show up on a photo! My onc said that many women actually shave their heads for a while when their hair starts to grow back because it comes in unevenly or patchy. I intended to shave mine too, particularly when I gave Luka permission to shave out a Bat-Signal centred on the back of my head, maybe like this one:

batman-hair-tattoo

Unfortunately, Luka and I were too ambitious, because you actually need a decent growth to do a fade like this. Mine was a washout. The good thing was, even though Luka cut loose with the shaver, after a few weeks you could barely see the shape, so I plunged ahead and did not do an all-over shave.

Now I just have to wait, and wait, and wait…

 

To eyebrow, or not to eyebrow?

Image

Way back in February Tessa and I attended a Look Good, Feel Better seminar. I was pretty successful at getting my skin cleansed and toned and moisturized and made-up, all except for the eyebrows. From that day:

After putting the eyebrow pencil dots at the right co-ordinates, using the inside of my eye and the outside of the iris to line it all up, the seminar leader came over and told me I had lovely eyebrows and we had to get rid of the dots. But what do I do when the eyebrows go the way of the rest of the hair on my head? Then I’ll be making strategic dots and filling in the rest. Ugh.

So, here I am, parked outside of a hospital, with barely any eyebrows left, but what I thought were artfully feathery-pencilled-in fauxbrows. When I checked in the mirror for a last look before exiting the car, the right one didn’t look so good. I tried adding a bit more, and the curse was cast. A little more was too much, so I had to add a bit more to the left side. That proved to be too much, so I wiped it all off. I drew the dots, filled them in and it looked like I was trying to channel Jean Harlow from Bombshell. I supply a poster image:

Image

I scrubbed off both fauxbrows to start all over. By the time I thought I was happy with the right side and started the left again, I saw Jean staring back at me. I wiped off the left side once more, then took this picture, hoping to get a more objective look from a photo than from my visor mirror. I did. It was a disaster! I removed both sides, fluffed the bangs from my wig well over my forehead and into my eyes and vowed not to attempt eyebrows again, but wait for them to grow back.

They’re starting! And I have peach fuzz, and some horrible little eyelashes, but anything will be better than the lizard/alien eyes I have had for the last two months or so. Yay!

 

Enjoying cPR

 

Some girls celebrate with a mani-pedi, others with a new pair of shoes—this girl celebrates with silky gravad lax. Image courtesy Donald Russell: http://www.donaldrussell.com/ultimate-gravadlax-salmon-f104.html

Some girls celebrate with a mani-pedi, others with a new pair of shoes—this girl celebrates with silky gravad lax. Image courtesy Donald Russell: http://www.donaldrussell.com/ultimate-gravadlax-salmon-f104.html

 

Feeling just like King Julien

I’m still basking in the glow of my cPR (complete Pathological Response), and trying to spread the love back to everyone who sent their prayers and positive vibes my way through the first six months of this unwelcome side trip in my life. I wanted to do some kind of celebration, maybe a real party, but that would involve all kinds of planning and energy that I don’t have, so after the pathology appointment Tessa, my man and I headed for the St. Lawrence Market. When I was an editor at Toronto Life magazine and later at WHERE, the market was one block away, and I would be there at least twice a week, usually more. I love that place, but since working at CAMH, getting there is a virtual impossibility during the week, and I’m happy to stay out of the downtown on the weekends, so going there was a huge treat. On the list of the celebratory purchases were a full pound of Domenic’s house-cured gravad lax with lemon zest and dill, St. Urbain bagels (Montreal style, baked right there), Jelly Belly’s (my fave), Callebaut milk chocolate chips (not for baking, just for precision portion controlled eating) and other little treats. We ate the gravad lax right from the butcher paper as we were driving home—and there was still plenty left for a vodka toast when we got there (yes, I have read the articles, I had barely a third of an ounce, thank you). We said we would properly celebrate when things return to the new normal anxiety-wise.

 

Shaking off that anxiety angst

I’m working on it, although I haven’t had a chance to really catch up on all the quality sleep I missed while twisting in the how-much-cancer-is-left?? wind. Luka was still on his Ottawa school trip this morning, and I had no appointments to get to, so I planned a good, long lie-in. Unfortunately the message was not relayed to my brain, which pinged awake at 6:40 and would not shut off.

But I didn’t have an endless loop of what-if-it-spread-past-the-original-five-nodes-and-the-chemo-doesn’t-work thoughts. Instead, my mind just wandered around: should we try to visit my dad this Sunday? Will my breasts take a two-hour drive each way? Maybe some tensor bandages and the sports bra together? What would he like for a present? Normal thoughts. What a relief! (I just read that over, and I crack myself up. Asking yourself if your breasts can stand a two-hour drive is a normal thought?)

 

Radiation planning

The morning after the good news appointment I was at Princess Margaret  Hospital for 9:30 to sign consents for radiation. I was in an excellent mood, feeling very positive, on time. I met my second-in-charge radiation oncologist and my radiation tech, of course had to whip off everything above the waist—what else is new? I’m surprised my pharmacist and dentist don’t ask the same thing—and when the doctor started to explain radiation, I asked if it was OK if I recorded our conversation. Either Tessa or my man has accompanied me to particularly info-packed appointments, and if I take notes I have them as a back-up should I forget something. Plus, as treatment goes on, I have found it difficult to actually grasp some concepts, so recording seemed like the best plan. My sisters and I often record doctor visits with our parents so we can share info with the other siblings. But my new doctor said no. I blinked. I explained that I was alone, that I was very anxious (hadn’t been up to this point), that chemobrain was making me stupid, that note-taking was physically laborious and required too much concentration to be able to keep up. She said she would talk veeeeerrryyyyyy sloooowwwwwwllyyyyy, and I lost it. I started shaking and tears literally bounced out of my eyes and down the front of my stupid hospital gown. She handed me a box of tissues and asked if I would like to take a moment. Yes, I’ll have a moment in early 2001, after Luka was born but before Graydon got leukaemia, when Tessa was dancing and my marriage was still intact. That would be nice. I choke-sobbed for a minute or two, then splashed my face and opened the door and took notes I can’t even read.

I will have 25 doses of radiation, five doses a week, to my right breast, axilla, and because my cancer is metastatic, the internal mammary lymph nodes and supraclavicular lymph nodes too. It can’t start until my plastic surgeon, Dr. Musgrave, gives the word that my healing is sufficient. I see her on the 18th, and then radiation mapping on the 26th, and then we see when I start. Radiation should start four to six weeks after surgery, so I should be on track.

 

Dining like a queen

This afternoon the lovely lady from Presidential Gourmet arrived and delivered dinners four and five: rainbow trout and a quinoa and grilled vegetable salad, and a baked pasta with garlic bread. I cannot say thank you enough to the Good Food Fairy who has made it possible to have delicious, healthy dinners five nights in a row—no planning, no grocerying, no prep and virtually no cleanup. It is incredible, and appreciated by all of us. And it couldn’t have come at a better time: I have just enough energy to really enjoy the spoiling!!

Thank you, whoever you are!

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Tuesday morning as I was trying not to rise to consciousness because that would mean starting to worry about my pathology full-time for another day, Tessa wandered up to my room and said:

“I got a weird call just now.”

“How weird? A breather?”

“NO! Not that kind of weird, a nice weird…”

“So, tell me?”

“No, not til later.”

“What do you mean later? What weird call can wait?”

“This one. It’s kind of about you.”

Then followed wheedling, and strategic questioning, and some reverse psychology, none of which worked. So I had to wait until late afternoon to find out what “weird” was.

Mid-afternoon Tessa cleared the kitchen table where she was working on her philosophy course. Not a big hint. Eventually, a really smiley young woman came to the door with a large black cloth bag. Tessa was grinning ear-to-ear, so was I, but like an idiot, since I still wasn’t clear. The woman said that a friend of mine thought that I could use some help with meals right now, and so had arranged to have FIVE DINNERS, from Presidential Catering, delivered starting that night. How could anyone have know the stress level in my head and house? I haven’t given a care about food for this week, and the kitchen shows it. If it wasn’t for Tessa, no one would be eating anything.

The menu was developed by an oncologist. The ingredients are organic. The chef is five star. We have had salmon in citrus olive oil, baby bok choy, rice, an arugula, tomato and sunflower seed salad with a balsamic vinaigrette, incredible cauliflower soup (we’ve had it hot and cold and both are delicious), quesadillas with fresh salsa, and shepherd’s pie, all incredibly delicious. And two more meals to come.

This is such a thoughtful, insightful gift, and the timing couldn’t be better. The worry over this pathology report has had me in pieces. Even now, there is no energy in me. So, thank you, whoever you are. I completely respect your desire to remain anonymous, and that makes this gift even sweeter, that someone is generous enough to give a gift on this scale, and not want any credit or public acknowledgement. Know then that my appreciation is huge, and I feel very humbled by your kindness and thoughtfulness.

And I’d like to say that if anyone is looking for a caterer, I thought Presidential Gourmet was a large-scale catering firm, but these fresh, delicious, clever meals show they can do anything.

Thank you again. Curiosity may have killed the cat, but I’m bigger and stronger than the cat. But maybe someday you’ll tell me who you are?

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