Back to the tried and true

It turns out that, after careful comparison with measurements taken in January, early February and yesterday, my arm circumference has decreased overall, especially from the elbow to the shoulder. The therapist also recommended that I go back to wearing my sleeve and glove during the day until I am too uncomfortable to put up with it any more, then transfer to the bandaging. Evidently I showed the most improvement when doing this and receiving manual lymphatic drainage massage twice a week.

This should permit me to do the small things that I have been avoiding when bandaged -- typing, cooking, household chores, even driving. I basically do nothing except sit around when bandaged.

The pumping action that comes from using the affected arm and hand while wearing compression garments and the bandaging are supposed to encourage the edema to release into a more normal flow. Unfortunately for me, since I am so left-handed and since my lymphedema is in the left arm and hand, my fine motor skills are severely impacted when bandaged. Hence I am not getting the full benefit of the wrapping.

So I spent yesterday, today, tomorrow and Friday wearing the sleeve/glove during the day and wrapping at night. Maybe by Friday, when I see the therapist again, there will be another measurable decrease.

It's been 70 days - ten weeks - since the onset of this flare up.

On to the ironing!

Academy Award dinner

Last night we watched the Academy Awards with friends and I cooked a Slumdog Millionaire Indian-themed dinner to go with.

To nosh on while watching the red carpet walk, almonds toasted with salt, cumin, cayenne pepper and a little sugar and popcorn sprinkled with the same combo.

For dinner in front of the TV, dal (lentils) with vegetables, potatoes smothered with garam masala, oven-roasted chicken thighs spiced with more garam masala, garlic, cayenne and hoisin sauce (in lieu of tamarind paste) and date chutney, served with beer and sparkling pomegranate juice.

For dessert while awaiting the best actor/actress/picture awards, rice pudding made with cardamom and coconut milk, served alongside hot chai flavored with cardamom and fennel.

Most of these recipes came from Vij's Indian Cuisine, a wonderful cookbook from a fabulous Indian restaurant in Vancouver BC.

Musings

It seems that lately people have been telling me they find my story inspiring, or they admire how I cope with cancer, or they have in some other way put me on a pedestal. This makes me uncomfortable. Why?

I already feel somewhat isolated by having metastatic cancer. When people tell me they find me inspiring, it somehow makes me feel even more alone.

Although I have always seen the glass as half full, I also have low moments. If I feel that if you place me on a pedestal as The Amazing Cancer Coping Woman, I am reluctant to share my down times with you.

Today has been one of those days. I am STILL bandaging up to 23 hours a day, with no clear improvement. I have limited use of my left hand so can't catch up on the household chores, like ironing or making dinner. (I did manage to unload the dishwasher without breaking anything.) I want to lose a few more pounds but had no energy to make real food, so I had a coffee and cookies for lunch. I had lower back pain but didn't take anything until it was starting to drive me a little crazy. Now all I want to do is take a nap.

Sleep has become a coping mechanism. When I feel like I just can't deal with it any more, I go to sleep. At least my dogs like to nap with me. So I think I will crash now and hopefully wake refreshed.

That's me -- always hopeful.

JoViPak® a no-go

I wore the JoViPak® all day Friday - so comfy! - but by 10 PM I could tell I wasn't getting enough compression. So I wrapped the compression bandages over the Jovipak and woke up this morning with a hugely swollen hand (again).

It was worth trying, because maybe the JoViPak® would have worked. However, because I didn't get enough compression from it, my experiment has set me back to spend another couple of days in the bandages 22 hours per day.

But as my mother always tells me (usually with regard to tasting new foods, but apropos nonetheless), "How do you know you won't like it if you don't try it?"

A new idea

Yesterday my friend N loaned me her JoViPak® arm sleeve. She raves about its comfort and ease to put on and take off. When I tried it on, it glided smoothly up my arm. I wore it for a few hours while out running errands and when I got home, removed it to throw in the washing machine. Sure enough, it left the marks of the padded channels on my arm, from my hand all the way up to my shoulder. Just like the bandaging, but so much simpler to put on and remove!

I am going to wear N's JoViPak® sleeve during the weekend and if it indeed provides compression similar to when I wrap, I will ask to be measured for one myself. I believe my health insurance company will cover the cost since this garment should qualify as durable medical equipment.

More later....

Still bandaged

The week of bandaging didn't help enough. Yesterday my physical therapist gave me a new gizmo to try, but unfortunately when I woke up this morning, my hand and wrist were even more swollen after trying the new thing. So now I am back to the old standby of bandaging with chip bags.

I was so frustrated by this yesterday that I came close to a minor meltdown. Instead of crying, I took a nap at 3 PM, woke up at 6:15, got into bed and slept until 8 PM. I got up to pee, visited with Rik and the dogs, eat a bite, and went back to bed by 10. This is my favorite method of coping when I can't cope. I just sleep through the bad times.

Today I had a volunteer project that absolutely had to get done, so my left arm has been au naturel all morning. It's now noon and I am giving up on accomplishing anything else, going to bandage again and hoping that tomorrow is another day.

Oy, am I tired of this!

Turning the corner

I may have figured out that the oldest treatment for lymphedema is still the most effective. Today is day 57, just over 8 weeks of this flare up. I must be particularly slow to learn these days.

Earlier this week I asked my therapist if I should go back to the original treatment of wrapping 22 hours/day for a lengthy period of time. She suggested I do this for one week and then evaluate to see if it's working.

It happens that I didn't have as much going on this week as I thought I did, so I started bandaging for the full cycle on Wednesday. Wednesday and Thursday I spent about 22 hours each day wrapped like a package, with a break only to take a shower. Friday was harder, since I developed a spot on my wrist where something was rubbing the wrong way and irritating my skin. I tried to tough it out but by 3 AM was so miserable that I tore off the whole thing.

Actually, first I dreamed (twice) that I was tearing off the bandages but couldn't figure out why my arm didn't feel immediately better. Then I woke up and realized I had been dreaming. This is not a good repeat nightmare.

When I got out of bed it appeared that the areas of toughest edema had indeed softened after almost three entire days bandaged. So I am going to continue this practice as much as I can tolerate through the coming days and hope that by the next time I see the PT for manual lymphatic drainage, there will be significantly measurable improvement.

Lesson learned? When it's this bad, bandaging at night doesn't cut it and I should go straight to a week in hell. I mean in bandages.

Sex and cancer

Sex and cancer is one of the toughest topics to write about. In past years I have approached it via Pure Romance parties for women with breast cancer, where in addition to talking about sex in a fun way, we had an opportunity to ask serious questions of a psychiatrist who specializes in human sexuality and cancer.

Today I read this powerful article by New York Times editor Dana Jennings, who writes a weekly piece about his aggressive prostate cancer. He could help you understand this most delicate of issues.

Love in the Time of Prostate Cancer

Happy birthday Bob!

Today is Bob's fourth birthday. He's been part of our pack for only 23 days (since January 18).

Bob is a terrific dog. He's mellow, soft and cuddly, and REALLY responds to his name. We're pretty sure that he understands that he is part of Pumpkin's pack, and that he is the #2 dog.

However, we're not too sure that Pumpkin feels the same way. To Pumpkin, Bob might just be the other animal who showed up one day.

But the two dogs get along well and Bob's presence seems to keep Pumpkin calm when both Rik and I are away from the house.

53 days bandaged

Seven and a half weeks of this lymphedema flare up and still not as significant relief as I'd hoped for by now. I'm still bandaging as much as I can. I wear my sleeve daytimes so that I can accomplish some household tasks, but around 3 PM it's too tight to be comfortable. I re-bandage until the next morning when the cycle starts all over again.

My therapist and I were speculating if the stubborn nature of this flare up is due to one or more of the following reasons --
1) the fact that the new sleeve I got in November is a different brand than the kind I've worn for 10 years
2) the new primary tumor diagnosed in December around the same time that I noticed increased edema in my hand
3) change in drugs
4) air travel
5) second and third new primaries diagnosed in January
6) stress related to all of the above or
7) everything combined.

I'm sure it sounds like I kvetch (complain) about this a lot, but part of the reason I decided to blog about dancing with cancer is to give you, my family and friends, and readers I haven't met, a sense of what living with advanced cancer is really like.

Sometimes I think that if my cancer had never come back but I was still dealing with lymphedema to this extent, it would be almost as bad as having more cancer. Te daily impact on my life is literally stunning. Some days I feel totally immobilized by the lymphedema and its treatment.

And yet I am particularly stubborn. I don't want to end up with one arm the size of my thigh, swollen from not treating the edema. So I wrap, I bandage, I take the occasional "chill Jill" pill, and I kvetch about it. A lot.

Thanks for listening.

My kind of holiday

I just learned that the first Saturday in February is Ice Cream for Breakfast Day. Of course this reminded me of Mollie Moon's ice-cream-and-oatmeal Sunday breakfasts, which I blogged about a few months ago.

According to the founders' friend:

A long time ago a nice Jewish couple from New York decided that the best way to perk up the winter doldrums was to invent a new holiday and eat ice cream for breakfast to celebrate it. Their children passed this tradition along to their friends and families and voila! Ice Cream for Breakfast Day!

There is no right or wrong so long as you follow the 3 plus 1 simple Ice Cream for Breakfast Day Rules --

(1) Eat ice cream
(2) for breakfast
(3) on the first Saturday in February AND

(4) spread the word

My friends A & M came across this lovely festival while abroad last year. Their Israeli hosts said the only thing they had to do was agree to host an Ice Cream for Breakfast Day party next year. So this morning we enjoyed four kinds of ice cream with toppings, fresh hot coffee and lost of good conversation.

I heartily recommend you add this holiday to your calendar!

A lymphedema nightmare (literally)

The other night I had a lymphedema bandaging nightmare. While sleeping I felt a fair amount of discomfort from the bandaging. Maybe there was a fold of the inner sleeve pressing against a nerve, or some tingling in my fingertips or hand that went from mildly annoying to outright frustrating. So I started to unwrap the bandages -- I thought. I kept unwrapping and unwrapping and never getting any relief.

That's when I realized that I was asleep and dreaming (actually, having a nightmare) about lymphedema. My frustration and that bit of pain finally woke me up. I could hardly move fast enough to really remove the bandaging.

You can see in the photo that I like to sleep on my side with my arms curled up against my chest (or a dog). This is clearly impossible when bandaged because the bandaging doesn't permit me to bend my elbow. Sometimes I think I get the best sleep of the night in the few minutes or so that I lay in bed after I've unwrapped the bandages. Note the pile of bandaging strewn next to me....

How the bandaging works

My friend G was over the other day and said, "I've never seen you put on all the bandages before." So I thought I'd explain the whole process.

First I put on the cotton under-sleeve (at the bottom of the image). It has a hole at one end for my thumb and extends from my hand to my shoulder.

Next are the grey pad (center, above under-sleeve) and finger bandages (far right, rolled into a circle). The large side of the grey pad goes over the back of my hand. You can just barely make out the openings for my fingers, and the small pad on the right goes in my palm. The finger bandages wrap around each finger individually, including the thumb.

Then I place the large chip bag (far left) around my arm with my elbow in the hole, and the small pale orange foam pieces against my wrist and the inside of my forearm. The chip bags and foam break up fibrosis, lymph fluid which has stagnated in my arm. My usual bad spots are in the forearm and just above the elbow.

Over the chip bags and foam I wrap the colorful fleece around my wrist, hand and arm, extending all the way up to my shoulder. The fleece provides padding and holds the chip bags in place for the final layer.

Last are the beige compression bandages (upper right), which cover the same area as the fleece. These help my lymphatic system to pump lymph fluid and break up any fibrosis. They come in graduated sizes -- smallest goes around the hand, largest around the upper arm.

Here's the full look:


(Like those shots? I took them myself, using my right hand and trying to get enough perspective to get the full impact.)

The rest of my lymphatic system needs stimulation to take up the overflow lymph which has pooled in my forearm and hand. I practice manual lymphatic drainage daily, and have been receiving this specialized physical therapy for the past few weeks.