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.

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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!