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.

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!