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.

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My life as a sloth: What else did I miss?

Still a fairly constant state for me. And no actual attribution for this photo other than galleryhip.com, which seems to be a place to post pics you've stolen from someone else. Sigh.

Still a fairly constant state for me. And no actual attribution for this photo other than galleryhip.com, which seems to be a place to post pics you’ve stolen from someone else. Sigh.

Sometimes I read my last post and ask myself, “What was I on?” I sound so alert. That’s when I realize that when I am awake and up and moving, I am still a force to be reckoned with. Then there are days like today, when cats Benny and Angel escaped through the front door only to appear on the 10-foot-high kitchen ledge, demanding rescue. I stumbled into the backyard to get them and found a flower garden gone wild: forget-me-nots, phlox, end-stage lilacs, raspberry bushes pushing through the deck, Some plants (of course they are weeds) are as tall as me. When was the last time I was out here?

My lily of the valley? All dead.

What time is it? I start harvesting my lily of the valley by the bucketful when they first blossom, I take them to the office, day after day, doling them out. The kids pick them and bring them in the house, stuck in vases and mugs and Mason jars. There are gobs of them every year on my birthday, May 31. Where have I been?

I got the kitties, and called the clinic to check on my rescheduled followup—one year from my May 22 goodbye breast and lymph nodes surgery—only to find it was this morning at 8. Sorry, missed that.

I missed celebrating National Cancer Survivors Day, which was last Sunday, which I didn’t even know about until 9 p.m. that day (where was the memo on that one?!?!). I missed going to Animé North, the annual convention and celebration of Japanese culture through anime, manga, music, games, cosplay, costumes, etc. with Luka for the second year in a row (both times because of breast surgery, go figure). I missed the Sunnylea Spring Fair, a really sweet fair at the kids’ primary school where I manned the cookie decorating booth for a decade and always donated plates of my fancy iced cookies to the bake sale. I missed picking up my Tessa at the airport from her last sojourn to Russia, the only time I have not greeted her at the arrivals gate, and this time she came back as an engaged woman! (surgery again).

Ug. I am low. I am so sad about the damn lily of the valley. I must go sleep or find some cute baby animal videos on YouTube.

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.

Goodbye dishpan hands!

 

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This was me, drowning in angst and ennui at the prospect of another two and a half hours of dishwashing. But now I know it’s easier to chunk big jobs into more manageable sizes, then I would look out the window and think to myself, “I only have eight 20-minute chunks of dishes to do. Yay!” Image is from http://www.preslaysa.com/how-to-clean-1/

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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.

Whew! Surgery is finished, healing has begun

Hi there. This will be a short post—low energy and aches and pains and discomfort—finally that word has real meaning for me. Everything, from my breasts, to my lungs, to my armpit to my back pulls and aches, my side is wet, the skin all around and under my right arm is numb, in short—discomfort.

The day before my surgery I got a wonderful letter from a friend with some personal tips from her experience with breast surgery, and one of her points was the I would use every pillow in the house. I took this as a sign to go buy more pillows, so Tessa and I went to Target and found two beautiful white-on-white heavily beaded bolster pillows, $29.99 each, marked down to $10! Score! Then, at the checkout, we struck up a convo with the woman behind us in line (she complimented Tessa on her dress and her whole “look”) and it ended up with the woman praying on me and blessing me and tomorrow’s surgery! It was more than I bargained for, and I was grateful for it.

That night there was parent and new Grade 9 student 1.5-hour presentation at Luka’s new school, and since it was the eve of my surgery, I intended to blow it off, but after watching Luka at his gymnastics class I had pangs of responsibility to get him the best start at his new school, so we went there after gymnastics. I got to bed by 2, and had a quick, nervous sleep.

Thursday morning we were at the hospital at 6 a.m. with my man, Tessa and Luka, on the table at 7:50 a.m., first surgical patient of the day. Apparently the procedures took two hours more than planned, but I didn’t care because I was unconscious. My oncology surgeon and plastic surgeon both visited me in my room that night, and again in the morning. I was home by noon on Friday.

My sister Heidi came up Friday afternoon (with homemade Thai dinner, THANK YOU) to help get ready for our Yard Sale for the Cure benefitting the Canadian Breast Cancer Association on Saturday the 24 (it’s the same day across Canada, just lousy timing for my surgery and the sale). She brought great posters and a banner, and she and Tessa priced stuff all Friday night. I helped get everyone up bright and early Saturday morning, went out to the garage for a bit, but then went to bed. Tessa and Heidi worked their butts off, Luka and even Graydon pitched in. We didn’t make a lot of money, but our local Goodwill scored with everything that didn’t sell.

The first four or five days after surgery were pretty much a blur of sleeping and dozing and taking pills for pain. My chest and arm and armpit hurt like crazy. Sleeping was easier than being awake. My man stayed for a few days, Tessa was in charge of food and everything, basically. We’ve eaten up my frozen homemade meals, a delicious almost-vegetarian lasagne made by Chris, a friend at work (THANK YOU CHRIS!!), and Tessa made a big soup tonight. A friend from my magazine days, and the woman who was at Women’s College with me when I delivered Luka—Meredith—sent me a wonderful funny retro card and said if she were here she would make me dinner. Unfortunately, she’s living in Vancouver now, but she came to the dinner rescue by sending a gift card to the Milestones-Kelsey’s-Swiss Chalet group, and said all I have to do is dial the phone. THANK YOU MEREDITH!!

So that’s it. If you were wondering what you could do to help when you heard about my diagnosis, and I said, “Wait until I have that surgery, then I’ll need the help,” well, now’s the time. My energy and range of motion and abilities to do the meals is non-existent, so if you can, a meal of any kind would be hugely appreciated. 

One last medical bit—I have a drain from my right armpit (axilla, to be medically accurate) which was working great until yesterday when I started leaking from where it goes into my body. I called the hospital instead of my CCAC nurse and the NP said come in. I did, my surgeon looked at it, and it’s all OK, no swelling, no infection, just leaking, and since the nurse will remove the drain probably tomorrow, it’s no problem.

Good night for now. 

 

Surgery and date set!

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This is a long post, so apologies in advance. I spoke to the surgeons’ assistant yesterday, and I have my surgery date—May 22, next Thursday, six days from now. On Tuesday of this week I spent almost seven hours at St. Mike’s and saw my surgeon, the director of the breast centre, my plastic surgeon and my oncologist. I went in absolutely wired because I didn’t have a plan. For 16 weeks of chemo, I thought I was getting a lumpectomy, then was told no, bilateral mastectomy 110%. That started five weeks of agony, anxiety, terrible dreams, depression, crying and frenzied research online, on triple negative breast cancer forums, on breast cancer forums, anywhere I could find info. After a week I was just reading and rereading the same articles. I couldn’t absorb any more.

There isn’t much out there for women triple negative breast cancer with no primary tumour. No primary site for breast cancer is rare—statistics from a 2012 multi-centre study in the journal Cancer looked at 770,030 breast cancer patients, and 750 had no primary site. Of the 750 they studied, there was no distinction of patients with triple negative breast cancer, so that study means nothing to my situation. Triple negative is 15% of all diagnosed breast cancers. That’s the biggest problem—the subset of triple negative with no primary is infinitesimally small, so there are no studies. 

No primary tumour means there’s no target for surgery or radiation. The emotional response is bilateral mastectomy—get them the hell off me. When I finally got my diagnosis of TNBC (triple negative breast cancer), chemo was started immediately. No one asked me “What do you think of paclitaxel? How does some cyclophosphamide sound? Would you like to schedule that every three weeks, or does dose-dense suit you better?” No, my onc said this is the drill, the pharmacist sat with me and explained, the dietician told me what foods to avoid. That was fine by me.

Then after chemo was finished, it was “Ah, here are your options, it’s your decision.”

What? My decision? I don’t want this decision. Some women do want it, but I don’t. I want the people who went to medical school and specialized and read journals and go to conferences and Tumour Board every week and see 30 women a day with breast cancer to make this freaking decision for me.

But no one wants to take the risk. Triple negative means there are no markers on the cancer cells, so none of the targeted cancer treatments that work on 85% of breast cancers work. The standard of care is three chemo drugs, which I had, and thank God and all things good, I had a very good clinical response. After chemo and before radiation (a must because of the metastases in my lymph nodes) however, there is no standard of care when you don’t have a primary tumour/site. That’s why all my frenzied reading. Of course I’m only trying to catch up to what my onc and surgeons already know. And the docs gave me four surgical options and a non-surgical (yeah, sure, let’s do nothing and see how that works), but the plastic surgeon customized a fifth option, which I’m going with. 

I thought I was wasting the plastic surgeon’s  time seeing her for a second appointment when, after five weeks, I still couldn’t face a bilateral or even unilateral mastectomy, but knew I could never walk away with these large, dense breasts intact, harbouring God knows what. But I sat with her—Dr. Melinda Musgrave—and my boyfriend, who has been with me at every single specialist appointment, and half of my chemos, and she went through my most recent MRI, the two additional ultrasounds that my oncology radiologist at Princess Margaret Hospital wanted to rule out a different non-breast cancer (all clear, still sticking with the breast cancer diagnosis), and she went over all the options that I had been offered, and then said, “or, we could do this.”

I’m thinking of it as mastectomy-lite. Breast-conserving surgery on both sides, taking my sizeable natural breasts to a demure C or D cup. Everything that gets cut out goes to pathology. Maybe they’ll find my primary. Maybe they’ll find markers that make me not triple negative. Maybe they’ll find DCIS. My oncologist says depending on what they find, I may still proceed to the bilateral mastectomy, but at least I’ll know I explored my options. The surgeon will remove lymph nodes (called an ALND—axillary lymph node dissection) from levels one and two in my right armpit—the ones that alerted me to this great experience in the first place. Those will be analyzed in pathology too. The number of lymph nodes with cancer is the best predictor of survival. The one he removed in the sentinel node excision had cancer, so then I wait and see. My right breast will get radiation, as will the armpit.

So, surgery is in six days. Not long enough to get my house—and groceries, meals, laundry, school stuff, etc—organized. Please cross your fingers and say a prayer or send me all the good vibes you can. Thank you!