Pinktober, and mammogram results tomorrow

Plastic surgeons have some of the prettiest and goriest websites around. Thank you to Calgary plastic surgeon for this visual (http://markhaugrud.com/procedures/breast-reconstruction/)

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.

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Lymphadema / lymphahell revise

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You would never believe how long it took me to do this fishtail bandaging. It was far easier to do a fishtail braid on my hair! When I had hair long enough to braid, that is…

(This is a long somewhat whiny post, now that I read it, so apologies upfront)

I went back to the Lymphadema Clinic at Princess Margaret Tuesday for a follow-up on the art of bandaging. Tessa and Luka accompanied me this time, Tessa to film and Luka to do some hands-on bandaging. One of the many frustrating things about this stage of lymphadema is that when the hospital therapists show you how to do the required  bandaging, they do it with their two hands. Then you go home and have to bandage your arm with one hand. In my case, my dominant hand is the one with the lymphadema, so I am using my not-very-adept left hand, which makes it even slower and more frustrating. So, Luka agreed to come and be the RMT-in-training.

This is not new—Luka coming with me to appointments—when Tessa returned to Russia in March, Luka stepped in as my right-hand when it came to appointments. He had a break when Tessa returned at the end of May, but since she is back to Russia again first thing in September, Luka has been my partner in this new lymphadema bandaging debacle. He came and filmed the first bandaging appointment and demonstration at the hospital, then came and filmed a one-hour manual lymphatic drainage massage with an RMT and osteopath last Saturday. Michel Moya-Mora, at the Wellness Institute on Royal York Road, gave me an excellent two-handed massage, and talked all the way through, telling Luka how to angle the shots, and instructing me on what he was doing and why. Such a luxury!

At Princess Margaret I learned that my swelling wasn’t at 13% more than my left arm but at 23%. Ug. I thought my right arm and hand looked HUGE, but when I heard 13% I thought “Well, it looks really puffy to me but 13%, that’s not so bad.” Who knows what percentages look like when you’re looking at your own appendages? But hearing the value is 23% made me think “Holy crap, I knew this was serious.”

Pam, the lymphadema therapist I met with, was very sweet. I’d met her before in the clinic, but with all the women she must meet there I was surprised she remembered me. I told her I was freaked by the increase in the size of my arm and the hardness of the flesh now that I was bandaging. She made suggestions, changed me from soft cotton padding to the thick, firm, open cell foam I’m using now. I asked her for truths about my condition, not gentle platitudes, and she gave them to me.

Bandaging is a pain, but it is he only way to reduce the size of the affected arm. I can and must do self maunal lymphatic drain massage twice a day, for an hour. That involves stimulating lymph nodes in the head, neck, shoulder, chest, back, armpits, trunk and groin, in addition to massage to move the fluid in the fingers, hand, arm, shoulder, back, chest, breast and trunk.

Then, in this order:

1. cotton stockingette on full length of arm

2. bandaging of all fingers, thmb, hand and writst with two rolls of two-inch gauze

3. channelled foam padding between the fingers and on the back of the hand

4. cotton stockingette over the hand

5. strip of fine four-inch foam around the hand twice, above and below the thumb

6. wrap four-inch-wide, four-centimetre thick open-cell foam all the way up the arm

7. 6-cm short-stretch Compilon bandage over te hand at least eight or nine layers, then up the forearm until it runs out

8. the 8-cm wide bandage from wrist to armpit

9. then 10-cm wide bandage from wrist to armpit

10. then tape securely and go for a nap. Sometimes I do—it’s a tiring wrestling match.

This bandaging has yet to go smoothly on the first go. I do it too tight and can’t feel my fingers by the time on the second short-stretch bandage, or worse, the tingling starts 10 minutes after I’ve finished the whole thing, which means I have to unwrap EVERYTHING and start fresh. There’s no such thing as leaving the arm wrapped and finessing the hand—it starts with the hand. I drop rolls of bandage and gauze, and of course they unroll across the floor.

The lymph node and arm hand massage takes an hour. The bandaging, so far, takes at least an hour when you factor in the fact I must re-roll all the gauze and bandages before applying them.

That’s four hours a day!

I am elevating my arm above the level of my heart twice a day for an hour at a time, letting gravity do its part to lessen the swelling.

Through my work insurance I can get five hours of professional lymphatic drainage massage, so I’m planning to blow that in the next two to three months to try and get this arm down and into the sleeve and glove I hated so much before.

Now I think wistfully of my sleeve and glove. It’s like Joni Mitchell’s Big Yellow Taxi: you don’t know what you’ve  got til it’s gone.

Onward and upward.

Mmmmmmaple: My prize for first follow-up appointment

 

This is not a Second Cup advert. It just does a great job of celebrating maple and making me think I should just pour maple syrup in my next coffee...

This post is not a Second Cup advert. This photo just does a great job of celebrating maple and making me think I should just pour maple syrup into every coffee I make…

 

May 20, 8 a.m. follow-up with my plastic surgeon. Her nurse marvelled at the ingenious functional work of art in progress that is my left breast. I told the doctor that the nurses, resident even clinical assistants all stared at it in wonder and she laughed that now people will be talking. I said let them talk. If it works it’ll be worth it. They removed the dressings, green and brown bruising, cleaned everything up, removed the drains (yay!) , gave permission for a real honest-to-God-stand-under-running-water shower in 48 more hours, and made a second follow-up appointment for one week later.

Nik had to leave me at hospital because he had a meeting across town, so I elected to head out to Queen Street and see if I felt like a Queen Street streetcar all the way to Etobicoke, then a bus (VERY BUMPY, my body was warning me), or splurge on a cab.

As I stood there weighing the $3 vs $28 question, my eye wandered over to the Second Cup. Being on disability has made me even more cheap budget conscious than I was before as a single parent living in Canada’s second-most expensive city (Vancouver wins the dubious distinction of being most expensive). Second Cup might as well have been a Prada pop-up shop for the attention I gave it every time I went to St. Mike’s over the last 18 months. The only time I had a Second Cup coffee during that time was when Graydon treated me! Staring back at me from the wall beside the counter was the photo I put above. Maple is my favourite all-time flavour. I am most happy when I have an amber, medium and light maple syrup at home in my fridge. Standing there, feeling very sore, and a bit sorry for myself I admit, the pull of a cup of maple-infused steamed frothed milk and coffee was too much.

Three minutes and $5.05 later, I had a medium maple latté in my hand, and five minutes after that I had my butt in the backseat of a cab, and all the way home the driver and I commiserated over the price of coffee, car repairs, fresh lamb, cell phone service, internet charges, you name it.

And I drained that latté.

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/

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/

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/

 

My surgery was a success!

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: http://theelitetrainer.com/ index.cfmt=Blog&pi=BLOG&blid=185

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.

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.

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!