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.

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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.

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.

How am I mentally? Emotionally?

Rather than another avatar (I love my "Queen for a Day" one too much to ever change it), I have adopted a    mammalian mascot to represent me in my blog and at public functions. We share a personality profile, sleep pattern and ugly nails, among other things.

Rather than another avatar (I love my “Queen for a Day” one too much to ever change it), I have adopted a mammalian mascot to represent me in my blog and at public functions. We share a personality profile, sleep pattern and ugly nails, among other things. (Pic courtesy animal-kid.com)

Preamble

I say I will post more frequently in an attempt to engage in thinking, examining my thoughts, planning, typing, sourcing photos, etc., and so here is a little example. I started this post immediately after the “How am I physically?” post. That was Feb 13.  I came back to it at least four times. I had two appointments on Tuesday, one very emotional. I  fell asleep at 8 p.m., woke at 8 a.m. to make lunch and drive Luka to school, then went right back to bed at 8:50 and despite Tessa’s attempts to wake me, I missed my exercise class and a planned lunch after that. I couldn’t wake up, rouse, get my crap together, even when I knew I had to move. I slept until 4. I was asleep again between 7:30 and 10, then bedtime until 8 a.m. Fatigue sucks. Today I got Luka to school and I have a 1 p.m. appointment downtown. I am on my fourth cup of coffee. Now on with the post it took me six days to compose.

How am I mentally?

Lousy, low, lacking in confidence that my brain will recover and that I will stop craving/hating sleep. My brain feels as if it has turned to mush. I can’t get to the end of medical articles, the type of articles I eagerly inhaled even six months ago. Julia, work friend and fellow traveller in Cancerland, sent me a hopeful article a couple of weeks ago and I couldn’t even make sense of the illustrations, let alone the text.

What am I doing about it?

Reading. Doing soduko. Doing crosswords. Taping all appointments and playing them back so I can try to absorb more of what is said. Making lists. Beginning guided meditation for body sensing. Trying to find things that make me feel better, and do them.   This is actually very difficult, which I never would have believed before.

How am I doing emotionally?

Lousy, low, sad. Finding it very difficult to move forward. Three weeks ago I ran out of hot water while doing dishes around 6. I saw it as a sign to stop washing. After sleeping all evening in the living room, I couldn’t get any hot water while brushing my teeth. I took that as a sign to skip washing my face. In the morning, still no hot water. So at 11 I went to the basement to see if a switch was flipped and found the basement flooded from one side to the other, pouring down the floor drain, trapped everywhere around all the boxes and piles of laundry. A complete nightmare. The hot water tank rusted out and sprang a huge leak at the bottom, and just ran all night. We use the back half of the basement for storage, and while some things are in plastic boxes, lots weren’t. I had to throw away boxes of kids drawings and artwork, and photos, and magazines with my articles in them from pre-internet days. The living room and kitchen are still stacked with boxes and baskets and Christmas stuff, despite the fact I’ve been washing and sorting and tossing stuff every day. I would try to draw some parallels between the basement and my psyche, but it looks like too much work and I’ve no energy for it.

What am I doing about it?

Trying to get outside myself, meet up with a friend, do something nice for myself that doesn’t involve a trip to the Lindt outlet store or a bag of salt and vinegar chips. Got a new water heater. Make a little cleaning goal every day and try to do it.

World Cancer Day. What?

WCD_15_Graphics_Lockup01_150ppi

“Now, more than ever there is a need for a global commitment to drive policy and implementation of what we already know to push the global fight against cancer to a whole new level. Action taken by every person, organization, and government will reduce the burden of cancer. On World Cancer Day, we must show that cancer is ‘Not Beyond Us’.

——Mary Gospodarowicz, UICC Immediate-Past President, Medical Director of the Princess Margaret Cancer Centre at the University Health Network

That quote is from one of my two cancer hospitals. When I heard that Wednesday was World Cancer Day, I thought I should do something. My very first reaction was to bake cookies—Valentine’s is around the corner, cookies are top of mind, and as a baker of fancy cookies, each special occasion has a cookie to go with it. But this one doesn’t really, aside from cookies with ribbons of various colours.

So I thought maybe I should go to an event and lend my support. Wednesdays I attend an exercise class that increases lymphatic drainage, so I am up, dressed and sociable for the most part, and tomorrow I am meeting an old friend for lunch after the class. I would be thrilled if we could get through the lunch by not even touching on cancer, let alone celebrate it or spread the good word. Time to look it up on the inter webs: World Cancer Day.

Not too many things to do to celebrate World Cancer Day. There’s a selfie contest, and the screening of N.E.D. , but I found a very real way to spread the word: my cancer IQ self-tests. I did the online test for breast cancer, just five minutes of my time, and guess what my risk for breast cancer was?

YOUR RISK: HIGHER THAN AVERAGE

An average Canadian woman’s risk of developing breast cancer in her lifetime is 1 in 9. Your risk for developing breast cancer is higher than most Canadian women. Use the information in your risk assessment report and talk to your doctor or nurse practitioner about what you can do to help reduce your risk.

Well, with the benefit of hindsight, you can see how accurate the scoring was on that one! They have quizzes for colorectal, lung and cervical cancer as well as breast.

So, sorry, no cookies to celebrate World Cancer Day, just some info to share that might save your life. Go figure…

Stalled

 

Oh man oh man, this is SO how I feel now… a poorly functioning entity surrounded by disaster.

Oh man oh man, this is SO how I feel now… a poorly functioning entity surrounded by disaster.

Wow, it’s been a month and a half since I last posted, and it feels like a year ago or just a few days. December was a month of crappy anniversaries (my diagnosis, terrible holiday, start of my chemo, Graydon’s leukaemia diagnosis and three weeks inpatient, including Christmas) plus the first Christmas without my dad. My boyfriend was wiped out with flu, so we didn’t see each other for more than a week. I was exhausted, so at the last minute we didn’t go to Stratford on Christmas day like we always do—I slept most of the afternoon and evening, getting up on autopilot and frying chicken breasts for Christmas dinner—what a disgrace. We did go to Stratford Boxing Day and had lasagne made by my sister-in-law Sandra—delicious. We visited with my mum, Sandra, Ed and my nieces (in town for a couple of days), sisters Heidi and Juli, and my real BFF, Pam. She lost her dad a few months before I did, and then her mum died just before Christmas, so it was a sombre time in their lovely house. There were many, many occasions where drinking would have been the best answer ever, except the connection of alcohol consumption and breast cancer is so huge, I barely drink at all now. Maybe this is part of the problem—no lubricant for my rusty heart, brain and soul.

So it is now a full year since I started treatment. My testing, diagnosis and chasing the elusive-and-never-found tumour were in November and December 2013. Started chemo December 30. Had bilateral partial mastectomy May 22. 25 rounds of radiation in July and August. Severe burns and fatigue September and October. Lymphedema in right arm, hand, fingers, breast and trunk November, which will continue forever, and fatigue and brain fog (cancer-treatment-related cognitive dysfunction) that continue to make me not myself at all.

Is it my new normal? I HOPE TO GOD NOT!!!

I haven’t posted for six weeks because I was very down. I am now going to try to crawl on up out of my hole by doing things suggested by my cancer navigator over at St. Mike’s (Miriam Sweet-Goldstein, a very sweet—really, a totally appropriate adjective—and concerned woman who has walked the walk herself and now helps others to do the same; she takes the time to listen, and has great suggestions), and by Lorena and Stephanie in the Cancer Survivorship Clinical Program at Princess Margaret. I have not “bounced back” from my cancer side trip, and need to. Facing my mortality, the fear of recurrence, my lifelong lymphedema condition and now the changes that plague my energy level and brain have just been too much for me. For years and years, people who know me well and the misadventures of my family members have said to me “I don’t know how you do it every day!” Well, after this last year, I’m just not able to do it anymore, and I have to change that.

I’m taking on the commitment to post more often as a way to think and type and spend work-type time on the computer. So the posts will be smaller and more frequent.

Thank you for hanging in here with me—if you’re still reading, that is.

Say hello just to let me know? I’m hoping for four responses…

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.