Good news about my lymphedema!

After less than two weeks of bandaging, these two areas of the ring finger on my right hand went numb and feeling didn’t come back. I was told to try taking the bandages off for three hours and see what happened. Nothing. Then, I was told to leave them off for eight hours. Nothing. So Dr. Chang, physiatrist with the Cancer Survivorship Centre at Princess Margaret, sent me for a nerve conduction study (a really freaky test I don’t hope to ever need again) that found it was a branch of the digital nerve, no idea why, no treatment, no reason for it to spread, keep going with the bandaging.

I have definitely been in a stall with this blog, and I blame it all on my lymphedema. And the fatigue, but this post is about the arm. For the last three months everything has been about my arm: it hurts, it burns, it feels bloated and heavy, it pinches, my hand cramps, my skin crawls, it’s numb, it’s pins and needles, etc., etc., ad nauseam. It won’t fit in any clothes, I can’t get comfortable at night, my fingertips freeze, bandaging takes forever, I AM NOT NOR EVER WILL BE AN RMT!

Two weeks ago, after almost three months of massaging, exercising, bandaging and Cobanning, I went from 24% to 11% more than the left arm. Even though I was told that 11% was good enough to move back into a sleeve, my thinking was that if I stopped bandaging at 11% and went to a sleeve, which only maintains your size, the next time I would flare it would be in addition to an arm that was already 11% larger than the other. My flare this summer was a 21% increase, so if next summer I increase the same amount, I’d be looking at an arm 32% larger than my unaffected one.

This may be a flawed theory, who knows, but it makes sense to me.

I was so deflated and hopeless and angry after that measuring that I began the most aggressive bandaging and pumping and massaging (deep and surface) I had the entire time. I stared at that arm with such hatred I think it might have shrivelled a little just from the evil eye.

Yesterday I went for measuring at the Survivorship Centre at Princess Margaret again and there I was—6%!!!

That’s good enough for me! I went to my fitter—Mansuetta—and got measured for a new custom sleeve and glove. The thought of putting these bandages into a bag and burying it in my closet has me giddy. Wearing a sleeve and a glove will feel like running naked through a sprinkler on a scorching summer afternoon to me (that’s me as a kid, not now, God forbid).

In four weeks I will have my new gear, just in time for my return to work.  I’m looking at starting a graduated schedule the first week of December. More of that soon.

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.

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.

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.