Pinktober, and mammogram results tomorrow

Plastic surgeons have some of the prettiest and goriest websites around. Thank you to Calgary plastic surgeon for this visual (http://markhaugrud.com/procedures/breast-reconstruction/)

Plastic surgeons have some of the prettiest and goriest websites around. Thank you to Calgary plastic surgeon Dr. Haugrud for this very pretty visual (http://markhaugrud.com/procedures/breast-reconstruction/)

I haven’t posted anything this Pinktober about how uncomfortable the entire month of October feels for me. I like to not think about my breast cancer. The longer I can go NOT thinking about my breast cancer, the better. With most of my waking thoughts on my flipping lymphoarm (made up word) I succeeded in not thinking about breast cancer a lot over the last three and a half months, but the arrival of October and the pink ribbons and walks and sponsorships and fundraisers make it impossible to not get slammed in face with breast cancer constantly. Which is the cause of layers of discomfort: I think about breast cancer far more (bad), but all these things raise money for breast cancer (good) but the money goes all over the place and little of it goes to my cancer (triple negative) (bad), but I should be thankful for the awareness it raises (good) even if companies profit off the suffering and potential suffering of patients and family and friends (bad).

Ug. Suffice to to say I’ll be very happy to see Halloween night. We decorated the house tonight in the rain. I’ll post a pic on the 31st.

Two weeks ago I was back at St. Michael’s for a mammogram. My bandaged arm was too big to fit through the armhole of the hospital gown, so I went toga-style with one shoulder covered and the other bare. I sat in the rectangular room, chairs against all four walls, for a few minutes like that and then another patient came over with a second gown and put it around my shoulders. Why didn’t I think of that? What a nice gesture.

Into the scan room, and four uncomfortable squishings later the technician says “Let’s take a look at these,” so I follow her and we look at the scans and she says, “Hhhmm, the radiologist isn’t going to like the look of that one. I’m sorry, but we’re going to have to do another one. I’ll try to be really fast.” “Oh, I’m not in any hurry,” I said, and she responded, “This one will hurt though, so I’ll try to be really, really fast.” My right breast has all the radiated tissue plus the scarring from surgery and biopsies, so I guess it wasn’t clear enough (or she didn’t correct me when I guessed that was the reason for the fifth scan).

And she wasn’t kidding. It hurt so much (sorry to say that, but might as well be honest), that tears literally popped from my eyes and I found it difficult to stay standing. I was gasping and gulping and crying all the way through the goodbyes and good lucks and sorries to the change room, where I stayed for a full five minutes until I could get a grip again. It was the freakiest thing. And it hurt until the next day.

So it’s been two weeks of Pinktober waiting for the results of my mammogram. I feel like I’m right on theme. I am confident there will not be bad news when I see my surgical oncologist, Dr. Jory Simpson, who could definitely play himself in the film version, because if the scans had shown something someone would have called me in before now. My anxiety level is fluctuating between a 1 and an 8, more in the lower end.

I did my bandaging too enthusiastically tonight because I can no longer feel anything but pins and needles. That means it all comes off and I start over again. I hate this. I can’t wait for my sleeve to come in.

Results from the one-year goodbye-to-breasts-and-lymph-nodes-surgery appointment

 

Up on time, out the door on time, at the front door of St. Mike’s on time, thanks to Nik! Yay!

Appointment with Dr. Jory Simpson—kind, smart, compassionate, calming, handsome—went swimmingly. It’s all good.

Bloodwork before seeing my oncologist, Dr. Christine Brezden-Masley—kind, smart, compassionate, encouraging, beautiful—during which I tried to have a read on my Vitamin D level added in, only to find it costs $110 (!!! what?!?! all the forums I’m on say be sure to get your Vitamin D levels done! who pays for that? not OHIP, so I’ll just be taking my 2,000 IU daily and hope for the best). After plenty of “me time” in the waiting room (I had a laptop, but my arm and hand are killing me…. ), my appointment with her went really well too. See answers to my questions below.

  1. What’s with this damn fatigue, really? It is what it is. Your body went through catastrophic systemic trauma from the cancer itself, two months of testing, four months of dose dense chemo, operations and procedures, radiation—your body needs time to heal. Cut yourself a big break. Everyone is different.
  2. How much longer will my right breast keep shrinking? Likely done shrinking now, but ask your radiation oncologist (August 12).
  3. Will my finger- and toenails ever return to normal? Not sure (the Beau-Reil lines are gone, as is the koilonychia, but they are still lifting off the nail beds and every type of nail polish bubbles up off them. Yuck. I need to find a cancer-experienced manicurist. Anyone?)
  4. Can I have my radiation tattoos removed, and are there any special instructions? Don’t see why not, but ask your radiation oncologist (again, next appointment with him is August 12).
  5. When do the docs start counting survival? At diagnosis (the doctors’ or my self-diagnosis, which are eight weeks apart? of adenocarcinoma or the real deal—triple negative breast cancer? I’m taking the date of my first chemo treatment, since up until then I was doing nothing to fight the fu**er. Asterisks for my mother and mother-in-law 😉
  6. Is there anything special about survival with triple negative breast cancer that isn’t covered in the media? Nope. The first three years are the ones to beat for recurrence.
  7. Will I be getting any extra MRIs or scans since my tumour was never found? Nope. Just standard mammograms, next one in October. Which seems a bit nonsensical since no mammo or MRI or ultrasound or mastectomy found the tumour in the first place, and triple negative rarely comes back in breast tissue anyway.

So, Dr. Brezden gave all my head and neck lymph nodes a good manipulation, and we had a good chat about how difficult it is not to wait for the other shoe to drop. That’s my nagging feeling, which I am sure that having a hormone to take would allay, but who can say? My cancer is still in remission. I’ll see her again in December, Dr. Simpson, my oncology surgeon, in October.

Onward and upward, fatigue, chemobrain and lymphadema are the enemies of the moment now. Survivorship is the goal.

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

marcia-strassman

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.