Taking stock of post-cancer-treatment me

Not really.

Not really.

I like to think about my breast cancer experience as little possible, and on a good day I succeed. I have many physical reminders of my BC that have nothing to do with the preponderance of pink ribbons and their campaigns:
• my lymphoarm and all the joy it brings me,
• dark ashy hair without a touch of blond,
• aches and pains in my breasts,
• the fact that no bra will ever fit right again (until I get a custom made one with different-sized cups, or wear a prosthesis or padding),
• the suspicion that the lopsidedness is visible to casual onlookers,
• scars on chest/breasts and under my arm, and finally,
• the radiation tattoos.

What I tell myself about each of these points:
• can’t hide the bandages or the sleeve and glove, gonna have them for the rest of my life, so I just have to deal
• thinking that getting some blond highlights back in my hair is a great idea as part of my back to work preparation—just need a whack of cash that I don’t have just now
• can’t take pain pills for that, gonna have them for the rest of my life, so I have to deal
• could have a third breast surgery to reduce the left one, and even though my plastic surgeon is an accomplished anatomical artiste I think I do not want another go-round, so I will just have to deal
• if someone is staring at my chest and discovers one breast is larger than the other, really, what the hell can I do? At present I’m home all day, or running kids around in the car, or going to appointments where I guarantee no one is staring at breasts with anything but a passing or clinical interest, so if that reminder really gets to be too much I will just get fitted for a prosthesis
• I am on my third bottle of Bio Oil in efforts to decrease the appearance of my scars and as long as I keep my arm down and clothing on, the only one that is visible is the one from my port and it’s not so bad now
• the radiation tattoos, particularly the one in the centre of my chest, above almost every neckline I wear, is the one thing I CAN do something about. There is a plastic surgeon here in Toronto who does radiation tattoo removals for free in the month of October (and hopefully shortly thereafter).

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!

Lymphedema, my BFF, and I borrow clothes!!!

My new lymphedema compression sleeve and glove.

My new lymphedema compression sleeve and glove.

Well, I borrowed from her, but I’m lending her nothing.

  • Diagnosis: Nov 6, oncology surgeon Dr. Jory Simpson
  • Assessment and first treatment: Nov 20, Lindsay Davey, Toronto Physiotherapy
  • Compression garment measurement: Nov 24, Mancie at Mansueta
  • Drove to Toronto Physiotherapy to pick up original ADP papers: Nov 24
  • Drove to St. Michael’s Hospital for my oncologist Dr. Christine Brezden-Masley to sign off on ADP papers: Nov 24
  • Drove to St. Mike’s to pick up ADP papers, all signed: Nov 26 (thank you Adiba!)
  • Compression sleeve and glove fitted: Nov 27, Mancie

So, the sleeve and glove are over-the-counter, fitted to my measurements as closely as possible. The two pieces are $234.oo. Once the government agrees to my diagnosis and need for custom pieces, the government program with cover 75% of the cost. The custom stuff costs three or four times the over-the-counter stuff. Ug. That’s how I understand at least, so I will wait for the approval to order the custom set.

Getting it on in the shop was a breeze, getting it on at home was a horror. Tessa did it. If she wasn’t home, I don’t think I’d have got it on without tearing my left rotator cuff or something. It hurts like stink getting it on, but once it’s in place it feels fine. Good, in fact, like I’m doing something about this stupid condition.

And don’t they look fine?

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I am hanging on to one little scrap of vanity and self-care, since my hair is a wreck, eyebrows are sparse and my mood is crap. I can still paint these nails.

 

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.

 

 

Crack out the fireworks: Best possible outcome I could have hoped for!!!

This is what is going on in my backyard tonight. Bring a blanket! Courtesy of Nagoya-info.com http://nagoya-info.com/4249/the-beauty-of-hanabi-in-japan/

This is what is going on in my backyard tonight. Bring a blanket! Courtesy of Nagoya-info.com http://nagoya-info.com/4249/the-beauty-of-hanabi-in-japan/

 

I am so happy! Even though the surgeon told me my pathology wasn’t available yet, THREE WEEKS after surgery when it should have been ready in seven days, and then he sent his nurse off to find out why, and I stood in the hall afraid I would actually throw up, and his nurse came back and said it was just being signed off and uploaded, and we—Tessa, my man and I—went to sit down and wait, when he finally handed it to me and said, “Here you go. It’s all gone,” I could barely believe it.

“You mean I had a complete pathological response?”

“Yes.”

“So this is the best possible thing?”

“Yes.”

“So this gives me the best prognosis?”

“Yes. There is no cancer in any of the nodes, except for the first one, of course [the one he removed for the diagnosis]. And none in the breast tissue.”

And he handed me the report, which Tessa and my man and I went over line by line, with varying levels of understanding. My oncologist will explain it tome in such detail in a week that she said I will understand every single word of it. For now, it says no evidence of cancer and that’s enough for me!!!

THANK YOU, EVERYONE WHO READS HERE, AND THOSE WHO HAVEN’T YET, FOR SENDING GOOD VIBES, PRAYING, CROSSING FINGERS, KNOCKING WOOD, STABBING CANCER DOLLS WITH SHARP OBJECTS (you know who you are), FOR SUPPORTING ME AND BEING THERE FOR ME. I NEEDED YOU AND YOU CAME THROUGH. THANK YOU!

Here is a beautiful display of Kumano fireworks, the best in the world. Turn off all the lights in the room, go to full screen, and imagine you are in Japan enjoying hanabi.

 

 

 

No pathology report yet—crud, or ^#%@^&!!!

 

princess-and-the-pea-2Better living through chemistry…

Life after surgery has been pretty crummy for me, hence the lack of activity on my blog or phone (texting or talking). Surgery was on May 22, and my good pain pills ran out on Day 4. After my plastic surgeon told me at the hospital that I would only stay for one night, then be booted out of the hospital, I said, “I sure hope you’re sending me home with plenty of meds.” The plastic surgeon told me, “You won’t need much medication,” and I said, “Oh yes I will,” and she said, “I don’t think so, not for this.” So when the good pills ran out on Day 4 I did not call her office for more. I went through the ends of other bottles—Dilaudid, T3s, and few Ultram, until I had exhausted my emergency supply, and it’s been Advil and naproxen since then, and to very little effect.

Post-surgery fun…

My right arm is half numb, which is really freaky, and half hurting. My right breast aches all the time, the left one less so. When I am lying down with pillows tucked in at all the right support places, I am in my most pain-free state. But it’s hard staying like that. Driving is murder over Toronto roads after this last winter—I embarrass the kids by cradling my chest the entire time I’m driving, gasping with pain with every pot hole I can’t avoid. Even walking hurts, every time my right foot hits the ground. In the house I can walk very goofy, and have no problem. If I walked like that outside the house, I think I would be arrested for drunkenness in a public place.

Sweating to the oldies…

I keep doing range of motion exercises, and others included with my discharge papers. The numbness makes them difficult, since I’m not supposed to strain, but if I’m numb, how do I know what’s straining?

I’m no longer a plumbing display…

The drain, needed because of the removal of levels 1 and 2 of my lymph nodes, stopped working well after five days, and the blood/lymph fluid started leaking out down my side. It was yucky. My CCAC nurse—Stephanie, an amazing woman in her own right as well as an excellent, caring nurse—kept it as clean and dry as she could, and I went in May 28 so my oncology surgeon could give it a good look too. It stopped being effective, and was removed June 2. No gushing, so it’s all good.

Plastic surgeon visit…

I saw the plastic surgeon today. She says my incisions look good, the healing is good, the shape looks good. She put new paper tape over the incisions and gave me the all-clear for showers—half sponge-bath, half Saran-wrap showers have been a pain. All of the removed breast tissue was sent to pathology, and I for one am anxious to get back the pathology on it. Especially hoping for any sign of the missing or invisible primary tumour. At the end of her appointment, she contacted the lab to see if my pathology report was ready, and said I could get the results with both her and Dr. Simpson, my oncology surgeon. That would bump up that appointment from tomorrow to today, and have me getting the news alone, instead of with the supportive presence of my man, but in a couple of seconds we learned my report was not ready, and wouldn’t be, for days. Oh God, more anxiety, a full week of it. I think I need a week’s supply of MDA and a lot of water and a time machine back to the ’80s.

June 11 is the culmination of this particular run of anxiety…

So, the new date for all of you to cross your fingers, wear you lucky lingerie, send good vibes and pray is June 11. Please cross/wear/vibe or pray for a pCR (pathological complete response), with no cancer left in the lymph nodes, and no DCIS in the breast tissue, and evidence of that stupid invisible primary!

Reviving the 20-Minute Workout…

I have come to the sad realization that I am going to have to exercise. SAY IT ISN’T SO!!! With my H/I breasts gone, and C/Ds in their place, my midsection is looking out of proportion (yes, read, fat 😦 boo hoo). Of course, this makes Tessa absolutely grin and quiver at the thought of slave mastering me though exercises and diet/nutrition instruction. I am glad she is so interested in this stuff naturally. I have a pro under the same roof!

That’s it for now. Must rest arm.