Eight-year survivor of triple negative breast cancer!

When I got my diagnosis of triple negative breast cancer (TNBC) in 2013, my doctors told me to stay off the internet because the information on there was dismal. So of course I went there for a while and yes, it was dismal. So, now that I’m eight years down the recovery road with TNBC, I thought it’s about time to pop back in here and say it’s still in remission. Yay!!!

I survived lousy interwebs survival rates for triple negative breast cancer, dose-dense chemotherapy (two weeks apart rather than the usual three weeks apart), tons of side effects, went bald, had breast-conserving bilateral mastectomy, big path report, 25 rounds of radiation, lymphedema of the arm, hand and sometimes, trunk, fatigue, more reconstructive surgery, yadda, yadda, yadda, back to work, super interesting work I might add, my daughter had twin boys, big life stuff, and I am happy to be here!

So if you’ve come to my blog as a TNBC patient/survivor/info seeker, please read on down, or go the the Pages section to the left on this page, and go to the bottom underlined heading, Start here, to see where you really want to start reading.

Taking stock of post-cancer-treatment me

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).

My own private saint is too busy for caregiver fatigue

This is Saint Nikolai Velimirovich; my saint Nikolay looks considerably younger, has no facial hair, and never wears vestments; from http://orthodoxchurchquotes.com/2014/11/25/st-nikolai-velimirovich-technology-is-deaf-mute-and-unanswering/

I took it very, very easy this first post-surgical week at home. I did not do that first time around—I was more like Hey! bilateral partial mastectomy? of course I can do groceries!

This time, with Tessa, my primary caregiver for the last 15 months in Russia, my man has stayed with me around the clock since Wednesday night (seven days!), making all meals—not a single delivery car has darkened the driveway—bringing them to me, cleaning up afterward, as well as doing groceries, feeding and watering all four cats and the dog, driving Luka to gymnastics, and the bus terminal, and Graydon to the scooter store, and the convenience store and so much more. It makes me feel very special, particularly as I have come out from under the narcotics haze and realized what he really has done while I’ve been sleeping. I hope I never have to return the favour (because then he would be in massive pain, etc.), but will figure another way to return this fine treatment. ❤

My surgery was a success!

 

I am evil and will surely go to Hell, but when this photo popped up while I was researching “successful surgery” I knew I had to use it. In the photo, Dr. Donald A. McCain, Chief, Division of Surgical Oncology Hackensack University Medical Center, Assistant Clinical Professor of Surgery UMDNJ; I’m not sure what type of tumour that is, but It WASN’T mine!! Dr. McCain does more than 20 Whipple procedures a year, which means he’s up there with the best of them. This photo is from http://drdonaldmccain.com/or-cases/live-surgery-images/successful-surgery-ii/

 

Now THIS says successful surgery! And this photo is from The Elite Trainer, Toronto’s own (well, Richmond Hill’s own now, but he started in Toronto) John Paul Catanzaro. He has been in the fitness biz for 20 years, and been published in 25+ mags and web sites, speaks everywhere, has two books, two DVDs and his own private training facility. Photo: http://theelitetrainer.com/ index.cfmt=Blog&pi=BLOG&blid=185

I of course never doubted for a minute that it wouldn’t be—I doubted it for days, mostly in the what-if-I-die-on-the-table? vein, or far, far worse, what-if-she-cuts-in-there-and-there’s-more-cancer?

So neither of those things happened. My surgery was around 10:45, and I was in recovery a long time. I came up to my room about 6, texted a few friends that I was getting “excellent Spain meds” then watched at least three episodes of American Justice on my phone while I made blue bracelets.  I had a feeling it would take a while for me to calm down after I came to, and for them to find the right drugs for me (I hate pain, and will work hard to find the correct relief). Once my wonder-nurse introduced fentanyl into the IV, I was pain free, alert, even lighthearted. If you could see what I could see under my gown, you could estimate how much drug was required to get that effect!

I actually took some photos of my left breast and the incredible sculptural work my surgeon had wrought there—skin, tissue, black thread, wound up gauze, a clear cup—this is what I’d been hounding my surgeon for, and there it was. OMG is all I can say.

••• If you’re considering or have started reconstruction, and you have any questions, please mail me privately and we can talk about anything. The fact that my grandpa and grandma-in-law, and many colleagues, some neighbours, read this blog occasionally means that I think the details of my surgery are simply TMI for this blog. Seriously, I have photos and lots of experiences to share with any sister going through this, triple negative or not! •••

All night long I wandered in and out of sleep, lulled and awakened in turn by my sequential compression booties, fabulous boots that wrapped me up to my knees and went on all night sucking and blowing and making me think more than once that I was safely at home with Dixie, or Princess or Benny or Angel rubbing hard against my leg, almost lifting it off the bed looking for the best place to stretch out. I did fantasize about having a sequential hand-arm-shoulder-breast-and-trunk contraption that I could wear all night and never have to self-massage or wear my yucky sleeve and glove again though…

I was discharged the next morning, exactly at 11, with drains dangling. It was a bit of déjà vu from May 23, 2014 or I guess not, since it was almost identical, except for the compression sleeve and glove. By the way, I wore the sleeve and glove through pre-op and the actual surgery, explaining to the nurses and docs that it was my way of saying DON’T TOUCH THIS ARM! Obviously, they’ve seen it before.

I took it very, very easy this first week at home. I did not do that first time around—I was more like Hey! bilateral partial mastectomy? of course I can do groceries!

This post is long enough. I’ll write shortly about my follow-up.