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).

Pinktober, and mammogram results tomorrow

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.

First day out of bandages in 8 1/2 weeks

Not my hands on the keyboard, but a pic from 3M showing the coban bandaging I have been in lately

Aaaaahhhhhhhh. After self-bandaging from July 28 twice a day, every day and every night, and the new therapist-applied coban bandaging, today is the first day I have been able to return to a compression sleeve. I can bend my arm! Touch the side of my face and neck with my right hand! Eat with a fork in my right hand and not lose half the food!

The reason why I’m back in a compression sleeve is because my skin is degrading under the coban bandages so I need to wear something breathable while I apply Polysporin and clean the areas and keep them from getting infected. As soon as the skin heals, or starts to, I’ll be back in the bandages (which ones I don’t know yet).

For this period of CDT (complete decongestive therapy) I have seen three different therapists—an osteopath, a massage therapist (Lucy) and a physiotherapist (Lisa). Lucy and Lisa both practice at Toronto Physiotherapy, the first place I went with my lymphedema after diagnosis and an assessment at Princess Margaret’s Lymphedema Clinic.  My first therapist at Toronto Physiotherapy, last fall, was Lindsay (weirdly alliterative, yes?), the director there. I have had six professional drainage massages since this flare-up began, and blown my health coverage reimbursement for the year. Now I’ll have to cut into my spa budget or wine-cellar allowance to pay for massages (I wish!).

The difference in my arm between what I can do and what a trained therapist can do is night and day. They do 135 hours of training for certification in lymphatic drainage massage; I received 80 minutes. It is ridiculous that this condition doesn’t qualify for OHIP-covered services. My one-handed effort at this type of massage is ludicrous. I’ve been doing it for 10 months, and I don’t think I’m going to get any better at it. I talk to my therapists, question them, get my kids to videotape the sessions, watch every YouTube video on lymphatic massage, and still, my left hand reaching across my body is a poor substitute for a trained therapist.

Complain, complain.

The sleeve I’m in today allows my skin to breathe so the degradation will stop. But as that happens, I can almost feel my arm filling back up with this gross fluid. It’s one of those “damned if you do, damned if you don’t” situations—in the bandages I can exercise my arm and hand and force the fluid up the arm, but my skin gets gross and blistered and red; let the skin heal and my arm swells back up. It sucks.

Complain, complain, again.

But right now I can bring a spoon up to my face and eat with my right hand, brush my teeth with my right hand, and I actually attempted eye liner today. So I am enjoying myself!

 

Lymphadema / lymphahell

This is my impression of Dr. Zoidberg. It is my first bandaging for Stage II lymphadema.

Today was a typical day in my new normal: sleeping from 1 a.m. to 9 a.m. with many wakings due to lonely, mewing cat Benny, bad dreams and new screeching leg cramps; drifting in and out of sleep from 9 a.m. to noon; up until 5, then sleep until 9:30 when Tessa woke me to a fully prepared meal (made by her and Luka). That was a bonus and welcome treat. Now I will prepare for the new fun in my daily routine—bandaging my lymphadema arm.

The bandaged arm. Note my normal hand and how you can actually see bones there.

I had been managing the lymphadema in my right hand, arm, breast and trunk very well since it was diagnosed in November last year. Twice daily self MLD (manual lymphatic drainage) massage, meticulous skin care, wearing custom-made compression gloves and sleeves all day (only taken off when I was lying down) and participating in a specialized exercise program (Lebed Healthy Steps) kept my lymphadema at Stage I. After my May surgery it was difficult to do the self-massage and since I was on bed rest for two weeks I kept my arm elevated and massaged as well as I could. Unfortunately it wasn’t enough. In June my arm started hurting the same way it did when I was diagnosed, and I could see the swelling was increased. I saw Dr. Chang, a physiatrist at the Princess Margaret Lymphedema Clinic, and among other things we discussed—like this freaking fatigue that keeps hanging around—he referred me back to a lymphadema therapist for hand and arm measuring and the dreaded treatment for Stage II: bandaging.

This angle shows I actually still have all my fingers…

I thought massaging and wearing the compression sleeve and glove was a life sentence, but this fresh hell is far worse. My arm at Stage I was only 3-4% larger than my unaffected left arm, which was very good. Now my right arm is 13% larger, and feels gross and painful. Compression sleeves and gloves hold your arm and hand at the size they are. Only bandaging can hope to reduce the size of the arm and hand. Extended massage of the neck, arm, etc., etc., right down to the tops of my legs now has to happen twice a day, no more than an hour at a time. Then I do the bandaging: a stockinette over the entire arm, bandaging of all the fingers, thumb, hand and wrist, then wrapping of the whole thing in cotton padding, then wrapping with three different widths of compression bandages in specific patterns and directions, right up to the armpit. WITH ONE HAND!

Luka came to the first bandaging appointment and videotaped everything. Thank God for that, because even with his video I was barely able to figure out what to do once I got home. I do not know how anyone could have that one session and then be prepared to do this at home with only one hand to do everything. My brain was unable to absorb anything from the session. That is very alarming.

I have had three good sobbing cries while trying to do this bandaging. It is taking me almost an hour each time. Add the hour-long massaging before bandaging and I’m looking at four hours a day on my hand and arm. Try not feeling hopeless. I’m hoping the pity party on the Stage II is nearing its end and that I’ll be able to speed up the bandaging somewhat.

My life as a sloth: Now, this is funny!

That was a depressing post yesterday because I was, well, depressed. I did as I said I should, which was go look at cute animal videos, and found this one.

It is very cute, very funny, and pretty loaded with swear words and inappropriate things, but it made me howl with laughter, so here goes. You are forewarned.

 

True Facts about Sloths

 

I hope you liked it! The creator has many more: check him out on YouTube.

 

True facts about my status

I have a double-barrelled day of fun tomorrow: follow-up appointments with my oncology surgeon (one-year anniversary of my bilateral partial mastectomy and lymph node dissection) in the morning, and with my oncologist in the afternoon. I think there’s bloodwork in there, but no mammogram.

I’ve made a brief list of subjects to touch on:

1. What’s with this damn fatigue, really?
2. How much longer will my right breast keep shrinking?
3. Will my finger- and toenails ever return to normal?
4. Can I have my radiation tattoos removed, and are there any special instructions?
5. When do the docs start counting survival?
6. Is there anything special about survival with triple negative breast cancer that isn’t covered in the media?
7. Will I be getting any extra MRIs or scans since my tumour was never found?

That’s all I’ve got right now. I’m not worried so far.

Wish me luck!

 

 

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.

I have my surgery date!

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.

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!

Goodbye dishpan hands!

 

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/