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.

Back to the bandaging

Here's a photo to celebrate International Coffee Day (http://internationalcoffeeday.org), a day I missed because of sloth-type behaviour of avoiding all forms of media for a couple of days. On International Coffee Day my first coffee was poured down the drain because the organic milk I poured into it was baaaaad. The 2 p.m. cup also went down the drain because Graydon mistook the unsweetened almond milk for grass-fed cow's milk. I can't stand almond milk in coffee or tea or me. Coffee is truly my drug of necessity—to say no to the constant call of my bed I drink a large coffee every hour for the first five or six hours of the day. That is the only way to beat my fatigue so far. This photo is what my days feel like, courtesy of meridian.com.

Happy International Coffee Day (http://internationalcoffeeday.org), a day I missed because of sloth-type behaviour of avoiding all forms of media for a couple of days. On International Coffee Day my first coffee was poured down the drain because the organic milk I poured into it was baaaaad. The 2 p.m. cup also went down the drain because Graydon mistook the unsweetened almond milk for grass-fed cow’s milk. I can’t stand almond milk in coffee or tea or me. Coffee is truly my drug of necessity—to say no to the constant call of my bed I drink a large coffee every hour for the first five or six hours of the day. That is the only way to beat my fatigue so far. This photo is what my days feel like, courtesy of meridian.com.

Being out of bandaging lasted for five days, then back into the Coban bandaging done by Lisa, my physiotherapist. My skin was all cleared up with just Polysporin. Dry blisters and old skin (ew!) meant it was OK to bandage again. I chose to go with Coban again because the trade off is worth it—$32 not covered by OHIP or my work health insurance plan, but it means I don’t have to do that ungodly bandaging or massage. It does mean I have to do mad lymphatic system pumping exercises and diaphramatic breathing (very hard on my scrambled brain to be doing movements, counting and regulating my breathing the whole time) (and embarrassing to have to admit that that combination of doing three things simultaneously is hard!!!). Since the Coban bandages have absolutely no stretch, when one gets the lymphatic system really pumping there is nowhere for the excess lymphatic fluid to go except out of the arm—or that’s the plan anyway.

I see Lisa tomorrow for the cutting off of the bandages and measuring to see if I’ve made more progress. Then, on Tuesday I go back to the Lymphedema Clinic at Princess Margaret and have the major measurements done to see how the arm and hand compare to my pre-flareup size. I’m not sure what the goal is according to them. According to me I want to be right back to the pre-flare measurements, so when I flare up again (keeping in mind that this is a chronic lifelong condition and I will flare again) it will be on my original lymphedema size, not on top of a new, bigger normal. If I reduce to, say, 6% larger than my left arm and then I flare again, it’ll be on a bigger arm. At that rate, my arm will just swell and swell and harden and harden. I picture a Violet Beauregarde scenario, and it isn’t pretty.

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

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 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.

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.

How am I physically?

I know a post ago I said that I was going to try writing more often and see if that helps with my outlook, and it’s been a slow start (better than a no start, I tell the dog). So tonight I’m going to give my state of the physical address.

My right hand with lymphedema, in need of major massage to force all that fluid back up my arm, over and across the right shoulder and down into the neck area where lots of lymph nodes are hanging out, looking for work, I hope.

My right hand with lymphedema, in need of major massage to force all that fluid back up my arm, over and across the right shoulder and down into the neck area where lots of lymph nodes are hanging out, looking for work, I hope.

When my hand is like this, it hurts a lot!

When my hand is like this, it hurts a lot!

So, how am I physically?

I am managing my hand, arm and trunk lymphedema with twice daily self-massage. Graydon and Tessa each came to an instructional session at Princess Margaret’s Survivorship Program for the decongestive massage and filmed it each time. Pam was the therapist both times, and she was amazingly patient and accommodating about filming. I have found that it really helps to have the video when I do the massage myself, both for pacing and remembering to do all the parts of the massage routine. I am taking a second session of Lebed Method Healthy Steps exercise classes at Toronto General Hospital, designed for opening up and promoting lymphatic drainage through the whole body, which I need to keep the swelling down in my right fingers, hand, arm and trunk, and reroute that fluid to other lymph nodes. I try to do a modified (shortened) version every day at home—the days I do it I feel better in the arm and chest. I need to do aerobic exercise, but am having a hard time keeping that up five times a week.

The fatigue continues, and is the most frustrating thing I face on a daily basis. I didn’t “believe” in fatigue before, now I believe it but I hate it. Fatigue usually lifts a few months after radiation, but I’m five months out from radiation and still bagged. After seeing my psychiatrist last week, and running two more errands, I slept from 4 p.m. to 10 a.m. the next day. 18 hours. On days I have to get out and do stuff, I need to drink a large coffee every hour or so until I am done, then it’s water. If I don’t drink coffee, by 10:30 or 11 a.m., whether I have exercised or not, I need to sleep. That sleep can be two hours or six, and if there isn’t a huge reason to get up, I can nap all evening and then sleep all night, punctuated by my mind waking up to rattle through bad thoughts for 10 minutes or two hours. If I can will myself back to sleep, great. If not, I lie there with a body that can’t get up.

I have breast surgery coming up. The right side has continued to shrink thanks to the radiation, the gift that keeps on giving. The plastic surgeon left my right breast a fair bit larger than the left after my surgery, because radiation hardens and shrinks the breast tissue. That way, depending on the shrinkage, the two breasts might end up close in size. No luck in my case. They are now at least two cup sizes different, which means no bra can possibly fit. And the difference is definitely noticeable by more people than just me. I have thought about going with a prosthesis, but there are enough other things that need to be fixed and rejigged that surgery is planned. I’ve had the surgical consult, reviewed expectations, procedures, recovery. Now I wait for an appointment to sign my consent papers, and then I’ll be scheduled. I don’t want surgery, but this damned cancer has screwed me over enough already, I don’t need to see more evidence of it every time I look at myself.

Miscellaneous items: My hair is coming in like I always thought it would if it was ever short—curly at first, now wavy, just as thick as before, texture still silky. So, except for the natural dirty, dirty dishwater blond colour, it’s not so bad. I still want my long, blond highlighted coif, so I am not trimming it in any way—just keep it growing! My right breast hurts all the time inside. On the outside, there is no sensation, and I still have no sensation under my arm and around to the back. That makes the massage feel really freaky—my left hand knows what it’s doing, but my right arm can’t report back. Weird. My toe nails are not growing back. This will start panicking me soon, because I go barefoot from May to October, and those toes look like photos in a medical journal. I can’t even paint them, because there are no nails! Fingernails are much better, as in I have nails on all ten digits, but they don’t adhere to the nail bed very well yet, so lift up a lot, have bubbles and ridges in the nails themselves, and peel and split a lot. But, I can paint them, so it’s OK.

 

Lymphedema, my BFF, and I borrow clothes!!!

My new lymphedema compression sleeve and glove.

My new lymphedema compression sleeve and glove.

Well, I borrowed from her, but I’m lending her nothing.

  • Diagnosis: Nov 6, oncology surgeon Dr. Jory Simpson
  • Assessment and first treatment: Nov 20, Lindsay Davey, Toronto Physiotherapy
  • Compression garment measurement: Nov 24, Mancie at Mansueta
  • Drove to Toronto Physiotherapy to pick up original ADP papers: Nov 24
  • Drove to St. Michael’s Hospital for my oncologist Dr. Christine Brezden-Masley to sign off on ADP papers: Nov 24
  • Drove to St. Mike’s to pick up ADP papers, all signed: Nov 26 (thank you Adiba!)
  • Compression sleeve and glove fitted: Nov 27, Mancie

So, the sleeve and glove are over-the-counter, fitted to my measurements as closely as possible. The two pieces are $234.oo. Once the government agrees to my diagnosis and need for custom pieces, the government program with cover 75% of the cost. The custom stuff costs three or four times the over-the-counter stuff. Ug. That’s how I understand at least, so I will wait for the approval to order the custom set.

Getting it on in the shop was a breeze, getting it on at home was a horror. Tessa did it. If she wasn’t home, I don’t think I’d have got it on without tearing my left rotator cuff or something. It hurts like stink getting it on, but once it’s in place it feels fine. Good, in fact, like I’m doing something about this stupid condition.

And don’t they look fine?

CAM00473

 

CAM00476

 

CAM00479

I am hanging on to one little scrap of vanity and self-care, since my hair is a wreck, eyebrows are sparse and my mood is crap. I can still paint these nails.