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

marcia-strassman

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 breast cancer.

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.

MRI reveals adrenal adenoma: NO BIG DEAL!!!

What the CT scan showed, and the MRI detailed, was simply an adrenal adenoma, a noncancerous tumour.

YAY!!!

Join me and Spidey in a dance of cancer freedom!

Yes, this is what I did once I got out on Queen Street in front of St. Mike's. I was ecstatic! I love this gif, thanks to http://gifvault.com/dancing-gif-111.html/dancing-gif-111

Yes, this is what I did once I got out on Queen Street in front of St. Mike’s. I was ecstatic! I love this gif, thanks to http://gifvault.com/dancing-gif-111.html/dancing-gif-111

I have spent so much time and energy convincing myself and Tessa that I would be told I needed a biopsy this afternoon that when Dr. Brezden told me I was clear and could now go home and celebrate, I didn’t know how to respond. I was in a daze of sorts. I wandered out right past the desk with my blood req in hand and they called me back to set up the next appointment. They thought it was pretty funny that I had forgotten the drill already. They set me right up with a printout of upcoming visits to St. Mike’s: I have a plastic surgery app’t, mammogram, and checkup with my cancer surgeon in November, and see my oncologist on December 18, exactly one year from my sentinel node surgery.

From the hospital I went to my place of work, picked up a fellow editor friend, drove to her house and this happened:

Only when Diana opened the bubbly, she did it like a pro, with a pop and no loss of champagne. Pic from http://www.huffingtonpost.com/richard-jennings/holiday-champagne-buyers_b_4325064.html

Only when Diana opened the bubbly, she did it like a pro, with a pop and no loss of champagne. Pic from http://www.huffingtonpost.com/richard-jennings/holiday-champagne-buyers_b_4325064.html

And then this happened:

Hmmmmm, this was tasty. Made me wish I had a driver so I could have indulged more. This pic courtesy of http://www.matfenhall.com

Hmmmmm, this was tasty. Made me wish I had a driver so I could have indulged more. This pic courtesy of http://www.matfenhall.com

So, this is the confirmation that there is no discernible cancer in my body now, after chemo, surgery and radiation. Thank you to the many doctors and nurses who have taken care of me, and thank you to my family members and friends for their prayers and positive vibes and healing thoughts. It looks like everything worked.

I should sleep very well tonight!

Thank you all ♥

Midnight MRI

I had a full chest-abdomen-pelvis CT done just before radiation was over. I called a week later and was told  by my oncologist’s assistant that it was clear. YAY! No little cancer worms, scraps or shrapnel got loose into my body between surgery and radiation. Huge weight off my shoulders. Yahoo, whoop, whoop, whoop!

One month later, at my September appointment with my oncologist, I say, “Well, I heard my CT scan was clear,” and she says, “Yeah, well, about that. There’s something on your adrenal gland in the CT. Could be something, could be nothing.” I’ll order an urgent MRI and we’ll see what it is.”

“IT’S METASTASIS, THAT’S WHAT IT IS!!!” I didn’t say that. I asked, “Is that in my brain? Because I don’t want it in my brain.”

I love when I am my own comic relief. My doc laughed and laughed—”no, they’re little glands on top of your kidneys.”

“Oh good. I just don’t want that cancer in my brain.”

I didn’t ask any questions, because Dr. Brezden-Masley and I don’t deal in what-ifs. She said she’d ask for the MRI on an urgent basis, and I should call her one week after the test. Then I left the hospital and drove to Stratford for Dad’s visitation and funeral.

It took me a day or two to actually get to my computer and look up triple negative spreading to adrenal glands—and damn, it does! I also found this image:

OMG! How could I be scared of what looks like two chocolate-covered jumbo jellybeans with cute little toques on???

My urgent MRI came up five days later at 12:45 a.m. I drove back to Toronto, and took Graydon as my companion—when you self-medicate in the MRI tube, they won’t let you leave the hospital on your own. It was loud and clangy, and claustrophobic So at 2 a.m. I was back in my bed in Toronto, thinking about my dad, about this aggressive triple negative cancer, about metastasis, about prognosis with metastasis, about that evil freaking cancer. Low, low times.

So tomorrow I will call and hope the CT had a shadow, and the MRI banished it.

Join me in hoping please, please, please?

My dad is gone…

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My dad, L. Ray Waller, died last week on September 17. My sister Heidi called at lunchtime to say one of the nurses had called her because he really wasn’t eating anything, he was making noise when he breathed, and they were having a hard time waking him up. Heidi said she was on her way to see him. I said I had an appointment with my oncologist to go over my recent CT scan the next day, and I would likely leave from the hospital for Stratford. She called me five hours later and said he was gone, in his sleep.

One of the reasons I never wanted a big wedding was that I knew I would cry all the way down the aisle walking on my dad’s arm because I couldn’t stop thinking that he would one day die and leave me forever.

I took a university psych course on death, dying and grieving, because I knew I had a problem if I couldn’t even handle the thought of it.

I visited my dad at every hospital stay, staying overnight a few times so there would be a family member right there to advocate for him, went to specialist followups, visited him in his nursing home. I told all my family NOT to mention my cancer, because I couldn’t bear the thought of him thinking that his “baby Jackie” was sick with this f’ing disease. I wore my wig religiously every time I saw him.

Ed and Heidi spoke at the funeral for themselves and for Juli and me, two chickens who have never been able to speak publicly. They made me cry. The mayor spoke as well—my dad lived in Stratford 52 years, yet when the mayor added up my dad’s years of public service, he found that my father put in more than 140 years of public service. The city flew the flag at half-mast the day of his funeral, out of respect and gratitude and mourning his loss.

I drove back home today for a test, and have spent the last four hours in my room, trying to cry it out. So far, it’s fresh tears every time.

The flag flies at half-mast in Stratford on September 22, 2014, in honour of our father, Leslie Raymond Waller, November 12, 1929 – September 17, 2014. Photo by Juli.

The flag flies at half-mast in Stratford on September 22, 2014, in honour of our father, Leslie Raymond Waller, November 12, 1929 – September 17, 2014. Photo by Juli.

Heidi made a website for dad, and if anyone would like to read about an amazing father and man, please visit. She did a great job on a great man.

Do you smell something burning?

This incredible hand-beaded bag—Genie's New Hangout—by Sherry Serafini has nothing to do with this post about side effects on the skin from radiation treatments. Photos to illustrate the post would be gross. This beading is gorgeous. Better to look at, by a long shot! Find Sherry's work at ww.serafinibeadedjewelry.com.

This incredible hand-beaded bag—Genie’s New Hangout—by Sherry Serafini has nothing to do with this post about side effects on the skin from radiation treatments. Photos to illustrate the post would be gross. This beading is gorgeous. Better to look at, by a long shot! Find Sherry’s work at ww.serafinibeadedjewelry.com.

Oh yeah, that’s my skin. Ick.

When I started radiation, I obsessed over whether my skin would burn dark red or just sunburn red, maybe just pink, or not, in particular if I would end up with weeping, oozy, open sores. I heard about a full range of skin effects from women who’d been through it, from a light sunburn, to a full sunburn, to the dreaded weeping, oozy, open sores.

After three weeks, I had a rosy pinkiness to half of my chest, underarm and back. My weekly appointment with the radiology oncologist came up, and I told him how I was really worrying about the full five-week effect on my skin, even though I knew he couldn’t possibly predict what would happen with me. I said I would appreciate knowing even a rough percentage, based on all the breast cancer patients he sees, of women who end up with raw, open burns from their radiation. Overall, he said, maybe five per cent.

FIVE PER CENT!!! I was torturing myself over five per cent?!?! What a doofus. I stopped worrying.

Less than a week later the skin under my arm turned black. For a little while I thought it was because I wore a black top and the copious amounts of moisturizer I was applying picked up the black colour from it. Then the black crumbled off to reveal bright red, raw, oozy me. Of course, with triple negative, and no actual primary site, I would fall into the five per cent of women with weeping second-degree burns. My radiation oncologist prescribed a silver sulfadiazene cream (Flamazine) to prevent infection, and for the first time since May 22, I was glad my nerve endings didn’t work in my arm and underarm area—it feels creepy, but it doesn’t hurt. Thank God! Because the sight of it turned my stomach.

When I saw my plastic surgeon during the last week of radiation, undressed from the waist up—of course, I feel like a poorly paid stripper since last October, ripping off my tops, sweaters, bra and gown for almost anyone—she gingerly lifted up my right arm and said, “They fried you, sister!” She sure spoke the truth.

Radiation is finished now. The sleeping continues.

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!

 

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