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.

Lymphadema / lymphahell

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

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.

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...

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.

It just wasn’t enough to lose my wallet, now it’s my phone

I lost my phone two and a half weeks ago, somewhere between Costco at 4 p.m. on Monday and 2 p.m. the following day in my house. I went from Costco to my driveway into my house and didn’t leave. The kids and I (mostly me) have ripped the house apart. I’ve gone back to Costco and examined their lost and found drawers myself.

I didn’t back it up, of course. It held all my doctors and clinic appointments through all this cancer crap, including my questions and the doctors’ answers, unposted blog entries, ideas, notes of gifts received, people to thank, all of the photos I’ve taken of myself through before-chemo hair to short hair to bald to regrowth—only the “good” photos because I deleted the others, pics of the kids, little things like the progression of puzzles at the radiation suite as people put in their 15 minutes a day, plus all the text exchanges that I kept because some people are so comforting to me their texts calmed me months and months later when I would re-read them, and all my voice recordings of doctor meetings, my psychiatrist’s guided meditations and inner resource work with me, the lymphadema therapists working through 30 and 40 minute massages so I could do them myself at the same pace without forgetting what’s next, and all the phone numbers and addresses of every person, clinic, department, hospital, supplier, etc. I’ve been in contact with for more than the last two years. It is so overwhelming.

I have been having a world-class pity party for the last two and half weeks and I still feel like 30 pounds of crappy sausage in a 10-pound casing. No, that’s what my arm feels like in this sumer heat and humidity. I feel like a leaky, weepy old outdoor faucet.

I need to get over it and get a new phone. I should take it as a sign and start with a clean slate and no old cancer photos and cancer appointments and lists of cancer questions. But it seems far too hard.

Thank you for reading. If you’ve texted with me in the past, please send me one soon. I haven’t cancelled my service (no one has used the phone since I did the day I lost it) so when I get and activate a new one, the texts should just flow in and catch up. That’ll give me a start in building up my contacts list again. Sigh.

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.

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 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.

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.

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