Out damned spots! or, my tattoos no longer trigger my carcinophobia

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Yes, this is a photo of my chest. If you look down to the lowest loop of the necklace (made by me, 8mm moss agate beads and tiny black glass beads) you’ll see just above that strand one of my radiation tattoos. No big deal, yes? But when I see it every single time I look down, every time I spill something on myself (which is alarmingly often), every time I look in a mirror, it is a big deal. It smirks at me “Hi, I’m still here, maybe you’ll need me again.” Or it proclaims “Hey! This woman had breast cancer!” Or it snarks “Ha. Thought you wouldn’t think about cancer today, did you? Gotcha. Think about it.”

But, the joke is on the tats.

Two weeks ago I went to visit the office of Dr. Sean Rice, Toronto plastic surgeon, founder and director of Rice Cosmetic Surgery, thanks to a press release issued by Ashworth Associates, and a number of articles and TV news spots on Dr. Rice. In the month of October, Dr. Rice waives his fee, all of it, for removing radiation tattoos from breast cancer treatment.

First, I had to get clearance from my radiation oncologist. No problem. Then I made the appointment and spent ages preparing mentally for a procedure that was not medically necessary (I do not like pain of any kind). I’ll go through the whole experience because it was so short! In the door, greetings from two really lovely—beautiful—women, go to the procedure room, snap a pic of my chest, put on cool glasses, lie down, swab, a whooshing cold rush of air, three electrical zaps, and done. I couldn’t believe it. I originally said I would only get the centre one removed, but it was SO EASY I asked if I could have the second one zapped as well. They use new technology for tattoo removal, a PicoSure laser, which is apparently light-years ahead of the standard equipment. I was Polysporinned and bandaged, and told to keep applying lots of Polysporin and they would scab up and in three or four weeks I would be tattooed no more.

Oh yay!

That’s one more thing crossed off the list of things to do before I go back to work.

I cannot wait to be able to look down and see no reminders of radiation…

 

 

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Why am I having another surgery?

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This is a weird post to write. I’m hoping that since I am flipping out about my surgery in just over 48 hours, writing this could be cathartic, lessen some of my anxiety, give me some release.

Over the last few months I’ve had people ask me why I was going for a second surgery. I’m an open person, and a big believer in talking through your problems—a problem shared is a problem halved, that sort of thing. If I didn’t talk about things going on in my life, I think I would have imploded years ago. So when I would say that I had another surgery to go in my breast cancer saga, I was always prepared for the “what” question, and would respond with the whole “it’s called a revision, I had a partial mastectomy last year after chemo, but they call the recon a work in progress, radiation shrinks you, excess skin, scarring, balancing,” blah, blah, blah.

But the question that threw me each time was the “why?” “Why are you having another surgery?” “Aren’t you worried that something could go wrong? “Why not leave well enough alone?” “I wouldn’t let them near me with a scalpel again.” “They look fine to me.”

Why would these questions and comments bother me so much? I’m the one who says to talk everything over, get it out in the open. Maybe it’s because I’ve hit a tipping point where talking isn’t helping anymore. Maybe because I finally have to face I’m a vain person. If you’re a friend, or have been following my story, you’ll know how freaked out I was about losing my hair, butI still don’t think of that as vanity as much as it was about losing my identity and not recognizing myself. But really, is not wanting to have two differently sized breasts vanity? I’ve met wonderful women who walked away from their mastectomies and lumpectomies without any further surgeries and they’re satisfied, content, happy and thriving.

So here’s what I think, after much self-examination.

I want to do the surgery because I feel that cancer has taken away more than a year of my life, has left me with lymphedema of the arm, hand, breast and trunk, a lifelong sentence of wearing a compression sleeve and glove, the need for twice daily exercises and self-massage, restriction of movement, pain, loss of energy, craving for sleep that never satisfies, feeling that my memory will never work well again, and the crushing fear that the cancer will come back.

I intend to be here for a long, long time, and I want to take back as much as I can from cancer. I want my hair back to my shoulders, and I want breasts that match. I look at these things every single day, and while I’ll never get the original size back (nor would I want it back now that I’ve experienced life at this size), I do want to be able to fit into an off-the-shelf bra and not have to rearrange myself all day long. Or wear a prosthetic breast form.

I want to be able to buy a bra from La Senza or Victoria’s Secret and have it fit. I’d also like to be able to function on eight hours of sleep a day instead of 14, but small steps, small steps.

I have my surgery date!

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I received a call from my plastic surgeon’s secretary on Thursday with the date of my surgery: May 28. That had a few inconveniences attached to it—Tessa would be arriving back home from Russia the same evening; my boyfriend is planning to fly out May 29 to visit his sick father. But I don’t want to get caught in summer vacation roulette at the hospital, so it was a go. Pre-op on May 20.

I started the 27 Day Cleaning Countdown for the house. After this surgery I’ve been told there is no lifting, bending, raising arms, etc. With my current level of fatigue I achieve very little housecleaning, and the place has slid downhill. Anything that isn’t cleaned and sorted by May 27 will have to wait until mid-July, So Friday it was sort out the laundry room. 13 hours of sleep. Saturday was clean out front hall closet, sort, toss or Goodwill all footwear clear and wash front hall floor and baseboards, dust furniture.  3 hour nap; 13.5 hours of sleep. Sunday: 6 hours 15 minutes of sorting the garage, more laundry, cleaned out two kitchen cupboards. 3 hour nap; 2 hour nap, 9,5 hour sleep. Monday: Empty drawers in my room, pack some winter sweaters, reorganize upstairs linen closet, clean out and organize shelving unit in upper hall. 2 hour nap, 3.5 hour map, 9 hour sleep. I was channeling my anxiety over the surgery into cleaning, but it wasn’t doing anything about the fatigue. My house is looking better, and if I last three weeks, I’m sure the house would look houseguest-ready.

Then on Tuesday, the lovely secretary called with the offer to jump the surgery ahead two full weeks to May 14. Pros: My anxiety/dread/fear would be over two works earlier. Tessa will be spared having to be my personal support worker. My boyfriend will be here to take care of me. Cons: not enough time to clean house. No time to get the car fixed. Must have Luka’s birthday party this weekend. No travelling to Stratford for Mother’s Day. I’m still scared.

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So it’s on for Thursday, stay over one night, home on Friday. Preop is Tuesday.

Now I really need meditation and inner resources as  I climb clean the walls!

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.

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…

Goodbye October, don’t let the door hit you in the ass

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Marcia Strassman, 66, died of metastatic breast cancer this Pinktober.

October is over, and with it maybe some of the extra pink. Joan Lunden waved in the month on the Today Show, all over Rockefeller Centre Plaza with many, many bald-headed women in pink—and the network invited bald women, but only bald women, to join her (read Katherine’s post “Hey Joan Lunden: Stage IV Wants More! in her blog Ihatebreastcancer). Joan has triple negative breast cancer, my breast cancer. A woman whom I only knew through a common friend, but who gave me a wig in my first month of baldness, died this month of triple negative. She had 10 years of treatment.

Tessa came back from her 78-day visitor’s visa to Kostroma, Russia, and her biggest shock was cancer-shock—the pink, the news stories in every medium. In one of my guilty TV watches, The Real Housewives of New Jersey, Amber celebrated her five-year mark of surviving breast cancer with a topless photoshoot (some shots were of scars down her back). Netflix viewing this month included the last years of Nip/Tuck and Christian’s breast cancer, complete with his support group. Marcia Strassman, the stunning woman above, who played many roles including that of Julie on Welcome Back, Kotter, died this month of metastatic breast cancer. She was diagnosed in 2007 with Stage IV invasive lobular carcinoma that had already spread to her bones. Drug therapy, then a lumpectomy, then more drugs. She was on treatment for seven years before breast cancer killed her. She was fully public with her metastatic disease, speaking and fundraising and showing that people do live with cancer until it finally takes them. Pink is so freaking perky for a disease that grinds you down until you stop altogether.

Last post, I said I would post the writings of others who say how I feel about pink October. This is the best one: “I survived breast cancer, but I hate Breast Cancer Awareness Month,” by Leah Nurik in The Washington Post.  I thank the Cancer Curmudgeon and her blog Anotheronewiththecancer for finding it and passing it on.

 

A view of Kostroma, Russia, taken by Yuriy Chulkov, not Tessa. I'll post her photos in a later entry.

A view of Kostroma, Russia, taken by Yuriy Chulkov, not Tessa. I’ll post her photos in a later entry.

I have almost finished writing the thank-you notes for donations in my father’s name. We had Thanksgiving dinner in Stratford, the first of a whole year of “firsts” without Dad. When it came to siting at the table, there was his chair at one end, opposite my mother at the other end, and as the eldest child, I guessed that I should sit in his place. I had never sat at the end of that table. When we were all seated, it was me who said we should say grace, and then I said we should hold hands. I thought Juli might choke, but at the time, it seemed the right thing to do. I woke three times that night crying and screaming, but couldn’t remember a single dream.

I started a 10-week exercise program—Healthy Steps Lebed Method at Princess Margaret/Toronto General—that concentrates on the lymphatic system. I had 15 lymph nodes removed during my partial mastectomy, so that lymphatic system needs to work as smoothly as possible. All of these classes have flattened me—each Wednesday I have slept from 4 or 5 in the afternoon straight through to the next morning. It doesn’t say much about my fitness! Fatigue is my enemy now, as is chemo brain, or chemotherapy-related cognitive dysfunction, as a seminar I attended calls it. Tessa attended with me. She had thought we would get the skinny on this condition at the seminar, but we really just got an excellent overview on what I have already experienced.

Lonnnnngest caaaption in my blog thus far: A map shows the front of the brain with bright yellow and lime green hues predominating along the left half of the brain medially. This region corresponds to the left superior medial frontal gyrus, the part of the brain known for its role in prioritizing thoughts and actions. The bright yellow and lime green hues in the left superior medial frontal gyrus sharply contrast the cool blue hues in the same region on the right side. The brain uses glucose as its energy supply. The bright colours represent large decreases in glucose usage by the brain. Chemotherapy can induce changes in the brain that may affect concentration and memory, according to a study presented today at the annual meeting of the Radiological Society of North America (RSNA). Using positron emission tomography combined with computed tomography (PET/CT), researchers were able to detect physiological evidence of chemo brain, a common side effect in patients undergoing chemotherapy for cancer treatment. http://www2.rsna.org/timssnet/Media/pressreleases/pr_target.cfm?id=629

Lonnnnngest caaaption in my blog thus far: A map shows the front of the brain with bright yellow and lime green hues predominating along the left half of the brain medially. This region corresponds to the left superior medial frontal gyrus, the part of the brain known for its role in prioritizing thoughts and actions. The bright yellow and lime green hues in the left superior medial frontal gyrus sharply contrast the cool blue hues in the same region on the right side. The brain uses glucose as its energy supply. The bright colours represent large decreases in glucose usage by the brain. Chemotherapy can induce changes in the brain that may affect concentration and memory, according to a study presented today at the annual meeting of the Radiological Society of North America (RSNA). Using positron emission tomography combined with computed tomography (PET/CT), researchers were able to detect physiological evidence of chemo brain, a common side effect in patients undergoing chemotherapy for cancer treatment. http://www2.rsna.org/timssnet/Media/pressreleases/pr_target.cfm?id=629

Wait and see. That’s what my oncologist and psychiatrist say. Like just about everything in life, that’s easier said than done. Right now, I am waiting on the results of my first mammogram since last November. Next week I see my oncology surgeon one day (he will tell me how the mammogram looks) and my plastic surgeon on another (she will tell me how I’m proceeding to the next surgery—how things are settling in each breast, and how much smaller the right one is than the left one—to me the difference is very noticeable). Radiation has made the right one smaller and it continues to shrink even now, and it hurts all the time—my oncologist says “radiation is the gift that keeps on giving!” Well, as far as I’m concerned, it can back the fuck off. I really, really don’t want another operation there.

And I have started my own year of cancerversaries. When Graydon had leukaemia, the other mothers on my list serves and I called them crapversaries. October 21 was the one-year crapversary of finding my lumps under my right arm during a Monday-morning shower. I knew it was cancer, I told my GP it was, and off I went to start 11 weeks of testing to confirm my paranoid, but correct, self-diagnosis.

Last, but by no means least, November 5 is Bring Our Grade 9 Kids to Work Day, and I am not back at work yet. Luka might have mentioned this a week or more ago, and like anything that I do not write down several places, it slipped away until he produced a form that needs signing now. That’s next Wednesday. So, if you are reading this, live in the GTA, and can have Luka shadow you at work this Wednesday (I will cover lunch, deliver him and pick him up), please let me know ASAP here, or call me at home, or on my cell, or email me at jacquelynwv@yahoo.com. This is a huge program that has run since 199r, and has support nation-wide. Luka is clever and cute and will not show up looking like this unless you request it:

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Seriously. He can come in his navy and grey Bishop Allen Academy uniform. Quite dashing. I know he’s secretly happy he won’t have to watch me edit for eight hours. He could do a half day if you can’t have him for a whole day. And he is skilled at coffee runs.

Appy-polly-loggies for the bolshy post.

 

 

pink, pink, pink, PINK, PINK, PINK, pink, pink, pink

I did not see this, I saw it on xxx blog (vvv), and maybe found the original at http://www.luvimages.com/image/campbells_pink_label_soup_cans-5975.html

I did not see this display in a store—I’ve been avoiding stores like the pink plague this month. I saw it on Stephanie Gilman’s blog Pass Me Another Cupcake blog (http://passmeanothercupcake.com/2014/09/29/one-of-those-days/), and maybe found the original (http://www.luvimages.com/image/campbells_pink_label_soup_cans5975.html).

This photo totally explains why I’ve stayed out of the grocery stores this month. Pink packaging runs amok in October. Pink soup, pink juice, pink milk, pink M&Ms (pink outside package, pink M&Ms inside the bag), pink toilet paper, pink curling irons and blow dryers, pink Kitchen Aid mixers for heaven’s sake!!! Please send me one. And a big bag of those M&Ms.

I’ve been trying to write a posting on October, you know,

 

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But I am so conflicted I can’t really get anything out on paper. Or here either.

I knew October would suck for me. I discovered my lumps last October. I feel as though I have let my pink sistahs down—I never painted a pink ribbon on my nails, or dyed my hair pink before it fell out, or wore pink to chemo days. I don’t have a magnetic pink ribbon on my car, or one hanging from my rearview mirror. I don’t call myself a cancer warrior, and I haven’t signed up for a cancer run or walk. I discussed with my psychiatrist (new experience for me, an actual real psychiatrist just for me) how I haven’t gone to any group sessions, have done no bonding with any other breast cancer women, or men for that matter.

What I have found is some excellent writing by other bloggers who have breast cancer, and over the rest of this month I will be reposting some of their posts.

As for me and the avoidance of stores this month? I have Thanksgiving dinner dishes to prepare, and there is not enough in the fridge to cobble anything together, save a pearl onion, olive, anchovy, pickle and fish sauce stew, and I don’t think there’ll be any takers for THAT one!

So it’s off to the shops later today. Maybe I’ll wear my wig. And I won’t be wearing pink.