Girl irradiated

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Today I am four-fifths of the way through the radiation portion of my breast cancer side trip. I was in a bad place when I started radiation—sad, scared, not too brave and strong, and not in a mind space to be confidently ticking off the days. So, here’s a recap:

After a triumphant poisoning of my entire body, I had a complete pathological response to that poisoning, known as a cPr. That was the best-case scenario from chemo. Then I struggled over bilateral mastectomy, one side only, lumpectomy, partial mastectomy, radiation only (and I mean a kind of tortured inner wrangling with my emotional self vs the opinions of the medical people, who did not have consensus, mixed up with blogs and forums and discussion boards by women who’d made the choice and were living with their choices, happy or miserable). I had my fancy customized bilateral mastectomy, and after the pain and “discomfort” I must admit I have healed up pretty good. Then, on July 4, I started radiation.

Before the actual radiation began, I went for a simulation appointment, where my chest and breasts and armpit were measured six ways to Sunday in an effort to pinpoint exactly where the radiation beams would be directed and at what angles and for what spread. It was not an unpleasant procedure, nice techs—one guy and two girls—and the tattooing of four blue dots didn’t even hurt. Unfortunately, one of them is front and centre between my breasts and  and up three inches—visible with almost every summer top I own. It looks like I’ve been doodling on myself or dropped a teeny blob of ink there. Oh well.

Why do I need radiation? Speaking personally, I want to zap any and all bits of cancer left behind from the mastectomy and lymph node removal. There’s hours of cutting and scraping and poking about during that surgery, and God only knows what might have been missed or dislodged. Radiation zaps the tissue were it is pointed, in my case to four “fields”: entire right breast, right axilla, and because my cancer is metastatic, the internal mammary lymph nodes and supraclavicular lymph nodes too. Radiation that is delivered to these areas kills off the good cells as well as the bad, but the healthy cells can build themselves back to working order, while the cancer cells are weaker, and research has shown that doses of radiation delivered daily will kill off the cancer that is left. I HOPE!

My radiation treatments are at Princess Margaret Hospital, every day, five days a week. The appointments are scattered throughout the day, which I thought would be disruptive but turned out to be good—I come in as scheduled, some days at 8 a.m., sometimes at 5:40 p.m. Treatments are always on time, and many times I have come in early, even by an hour, and I’m always seen quickly. I’m called in, change into a gown, then go into the treatment room where I lie in a narrow table. They place a form under my knees to keep them bent and my back flat. I take my arm out of my gown and place it up over my head in a metal arm rest so it’s always in the same position. The two technicians then ask for my birthdate, rhyme off measurements and numbers to each other, sometimes cover me with a sheet if the gown doesn’t want to stay up. Lately, they also strap me down with a thick, wide Velcro band (a new practice since a patient at another hospital reportedly fell asleep on the table and rolled off) (I practise deep breathing during my radiation, but I have never been close to relaxed enough to fall asleep!). Then the techs step outside the treatment room to their computers, and the linear accelerator does its thing, whirring and beaming and then rotating around the table to get various angles on me. The whole thing, from gown on to gown off, takes 15 minutes. Nothing hurts. Nothing feels sick. I say a cheery thank you and see you tomorrow, and they say the same.

Side effects from radiation:

  • my skin is burning—you can see one patch in the photo above, and there is more under my arm, on the breast, and on my back. I put Aveeno and Lubriderm on every day, but some areas are getting worse, so the nurse gave me ProShieldPlus, which is the stickiest, gooiest stuff I have ever felt.
  • I hurt on the inside—apparently radiation can cause swelling of the tissues in the chest and armpit, and I’m feeling that. Nothing that tylenol or ibuprofen can’t fix.
  • fatigue—i am sleeping far too much. On a typical day when radiation is in the morning, I can sleep from noon until 5:30, then 7:30 to 11, when Luka wakes me so I can actually go upstairs and sleep until 4 or 5, when I wake and worry until I fall asleep again, always lightly, until I get up at 6:30 or 7. A variation on that one is sleeping from noon until 8 p.m., then going upstairs to sleep through until 4 or 5. Today, Saturday, so no radiation, I woke at 8, fed the animals, slept from 8:30 to 10:30, Skyped with Tessa and woke up Luka, slept 11 to 4 p.m. and have remained awake all evening. This is a feat!

I have one more week to go. Yay!

 

To read or not to read? Netflix to the rescue!

For the photo that could have been taken at my house, I thank Dianna at  http://www.diannahuff.com/2013/01/the-best-books-i-read-in-2012/

For the photo that could have been taken at my house, I thank Dianna at http://www.diannahuff.com/ 2013/01/the-best-books-i-read-in-2012/

Like many people who love to read, I have stacks, and shelves, of books I want to read. When I got my TNBC (triple negative breast cancer) diagnosis, I had visions of me lying in bed, propped up by countless pillows, a cup of tea on the nightstand, Clover and the cats lounging on and around me, as I read my way through those books. Between chemo and surgery and radiation, it became very clear that reading anything longer than a magazine article, and I mean a short one, was not going to happen. Chemo made me feel artificial and achy and foggy, surgery made sitting up and holding a book uncomfortable for anything more than 20 minutes. Concentration is poor, my body aches, and I just don’t care about people in books. It takes too much effort. Just like so many things. And I used to love reading my books in bed, and if I lie down now it’s 95 per cent certain I will be asleep within minutes.

Enter Netflix, streaming TV series and movies to your TV, computer and even the phone. Netflix has become my go-to hobby, pastime, babysitter, amphetamine, sleeping pill, best friend, you name it. Eight seasons of House M.D. had 176 episodes, which is approximately 7,920 minutes, or 132 hours of viewing nirvana. After almost every episode I also read a review and medical analysis written by Dr. Scott over at Polite Dissent—we agree that House was the best medical series EVER. If I hadn’t had cancer and been sentenced to the life of a hermit, I would never have had the chance to watch it.

I’m on a roll. I haven’t been completing many things these days, but I think I can pull a list together. Here is what I have consumed as a cancer hermit:

Luther, from the BBC, a psychological police/crime drama, starring the gorgeous Idris Elba. Three seasons; 14 episodes.

Fringe, a sci-fi, parallel universe, time-jumping, paranormal series that fills a bit of the void left by X-Files. Lead is female (Anna Torv! yay!) as FBI agent, with Joshua Jackson as her right-hand man and John Noble as an LSD-dropping scientist. Five seasons; 100 episodes.

House of Cards, political thrills drama starring Kevin Spacey and Robin Wright that got 13 Emmy nominations. Netflix original. Two seasons and a third in the works; 26 episodes.

Boss, super-dark political drama starring Kelsey Grammar as the mayor of Chicago as dementia with Lewy bodies begins to take over his body and his life. Only two seasons, which is a crying shame; 18 episodes.

Orange is the New Black, everybody knows this one. I’m halfway through the second season; 18 episodes so far.

The Fall, British detective drama (BBC) with lots of murders and fabulous accents, starring Agent Scully Gillian Anderson. Only one season thus far, but a second season is in the works; five episodes.

The Killing, very dark, crime drama, based on the original Danish production, features intricate weaving of plots and personalities. Best lead actors of any show. Three seasons, and eagerly anticipating season four, available August 1 (or 5, I can’t remember); 36 episodes.

Damages, legal drama with huge arcs, adore Glenn Close and Rose Byrne. Five seasons, 59 episodes.

Canterbury’s Law, courtroom drama starring Julianna Margulies, whom I would watch acting in just about anything. It was a warm-up to watching The Good Wife, see below. One season; just six episodes.

The Good Wife, courtroom, legal and political drama starring Julianna Margulies, Matt Czuchry and Christopher Noth (whom I have adored since the first-ever Law and Order in 1990). Four seasons; 113 episodes

Shameless, Brit comedy import about a drunk dad and his eight kids and how they basically bring each other up. Four seasons; 33 episodes.

Dexter, super bloody, murder-an-episode set in Florida with C. Michael Hall playing a psychopathic forensics tech who kills the criminals he feels have eluded their true punishments for bad deeds. Sometimes too predictable. Seven seasons; I’ve watched 36 so far.

The Guardian, legal drama and social work meet as Simon Baker (swoon!), corporate lawyer who likes coke way too much, is forced to rack up 1,500 hours of community service as an ad litem. Three seasons; 67 episodes.

Lie to Me, behavioural psychology meets crime drama starring Tim Roth and Kelli Williams. Three seasons; 48 episodes.

Homeland, American political drama, starring Claire Danes, the CIA, the Marines, Al Qaeda. Two seasons; 24 episodes.

Numbers, a crime-solving pair of brothers who rely on mathematics to solve EVERY case! I make my son watch this one to show him the pure beauty of math. He got 100% in a summer school math test = TV is good for your grades. Six seasons; 119 episodes.

United States of Tara, a comedy/drama about a mum with dissociative identity disorder (Toni Collette), her husband (John Corbett) and their family. I don’t know anyone with this disorder, so I can’t vouch for how on the mark it was with the psychiatry, but I could have watched another season or two. Three seasons; 36 episodes.

And I am watching Wallander, starring Sir Kenneth Branagh, a fabulous BBC Scotland project that is adapted from Swedish novels, and filmed in Sweden, Three seasons; I’m on the last of 12 episodes, and an episode is an hour and a half long—lots of time for character development.

So you know I have to do what I’m going to do now. Add them all up.

946 episodes. Roughly 135 episodes a month, which is four and a half episodes a day. And I cook and clean and do laundry and sweep and fold clothes while Netflix streams on, keeping the little voices in my head how I like them—overpowered.

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!

 

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