Lymphedema update

My arm seems to be a bit improved after 4 nights and 3 full days of bandaging. I am trying my sleeve and glove with a small chip bag at the wrist to break up a bit of fibrosis. I will probably have to sleep all wrapped up again. At least I can catch up on household chores (ironing) while wearing the glove.

Words to live by

"Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

- Virginia Satir, American psychotherapist and author

Lymphedema again

On Friday evening when I took off my sleeve I noticed that my hand was a little puffy. THis is NOT a good thing. Although I went to sleep as usual, in the back of my mind I knew i was headed for a weekend of gloves, wrapping, etc. I wore the sleeve and glove while at the Dunava recording session yesterday, but as soon as I came home stripped them off and wrapped my arm.

I'm sad to say there is no immediate improvement overnight, which means I will wrap again and hope to last 23 hours in the bandages. If my arm and hand are still puffy on Monday, then I have to call my doctor and launch another round of physical therapy. We haven't yet received the bill for the last round of PT!

I am VERY unhappy about this and wish I could figure out what might be triggering it. I detest wearing the glove and hope that the balance of my lymphatic system isn't swinging over to needing a glove on a regular basis....

Recording with Dunava

Dunava spent yesterday in the home recording studio of a friend, This was our second time recording and it was a better experience than the first session. We knew what to expect, we had prepared the right amount of material. Still, when we listened to each raw take it was clear that what we hear when we sing is not necessarily what is being recorded. We might think something was great but it might not sound as good as we thought it had.

On the other hand, by the time the recording engineer had done some mixing, we listened to the mixed files and were very impressed that is was actually us singing. So I am note sure what to expect but will keep you posted!

At any rate I was completely exhausted from spending four hours standing on my feet, concentrating hard, trying to sing every note perfectly, even breathing. One woman almost passed out by almost hyperventilating in her urge to sing a particularly high part well and not taking enough breaths.

We have 2 more recording session planned in February and March, will keep you posted on the results!

Rebound Insomnia

This is what happens when you take sleeping pills for a month. The first time that you try to sleep unaided, you get rebound insomnia. Insomnia -- just the thing you have been trying to avoid! Although I have not taken any of the drugs named in the JAMA article, I think this is the best term to define poor sleep after stopping sleep meds.

I had a night or two of this lovely condition, then I guess my body relaxed back into natural sleep. Now I only wake up with hot flashes two or three times a night. That's natural sleep for me.

Lisa's Story: The Other Shoe

I read the comics every day. Although Funky Winkerbean isn't in my daily paper, the Seattle Times, it's included in the combined Sunday edition with the Seattle Post-Intelligencer. And so I read about a character named Lisa, a young woman with metastatic breast cancer who was dying. Naturally I followed the strip as closely as I could.

Then I heard about the book that artist Tom Batiuk made by compiling all of the strips about Lisa's cancer, from her original diagnosis and treatment through her recurrence, treatment, dying and death. That's Lisa's Story.

I recommend you read it. It's true, honest, sad and funny -- just like life.

Facebook

I just joined Facebook!

A month and a day

Yup, that's how long it took to get my lymphedema back under control after a flare up. And that's in the winter, with none of the usual triggers of warm weather, insect bites, gardening, etc.

My physical therapist says that I can wear only my sleeve (and glove, if needed) and sleep without bandaging this weekend. If my arm and hand stay the same, on Monday morning I can cancel my last appointment scheduled for Tuesday.

Cost to me in dollars and cents for this month:
$175 (7 copays @ $25 -- thankfully my health insurance pays for the physical therapy)
$36.50 in bandaging supplies (not covered by my health insurance)
$70 (2 copays @ $35 for urgent treatment while traveling)

Being able to sleep comfortably? Priceless.

Congregation Beth Shalom

If you want to see what our wonderful Conservative synagogue is like, check out this video I helped make!

There is also a link to the trailer for filmmaker Josh Isaac's wonderful film, My Left Hand, about his battle with malignant sarcoma and the amputation of his hand.

Day 27

My hand has been steadily improving but I think I may have overdone it this weekend.

I went to yoga on Friday for the first time in 2 weeks but tried to take it easy. On Friday night we had guests for dinner (yummy Macrina challah, curried pumpkin-peanut soup, vegetable strudel, green salad with apples and sunflower seeds, chocolate mousse and shortbread cookies). So I did a bit cooking on Friday. I bandaged from 9 PM - 9 AM.

On Saturday went to synagogue as usual (also for the first time in 2 weeks) and caught up with a lot of people. Didn't wear my glove because I am a bit tired of talking about it in public.

Saturday night we celebrated a friend's 50th birthday party at a wonderful costume party. The theme was to dress as your favorite literary character from before 1957. Rik was Captain Nemo from Jules Verne's "20,000 Leagues Under The Sea" (1869) in a beige turtleneck, blue jacket, and black captain's hat with a plastic clown fish tucked in the brim (the one from Finding Nemo) to make sure people got it. I went as James Bond from Ian Fleming's "Casino Royale" (1953), wearing my tuxedo with hair slicked back. I carried a plastic squirt gun and gum cigarettes in my pocket, and pulled out a postcard of Sean Connery as Bond if people couldn't guess. I even learned how to play baccarat, just in case! Didn't wear my glove again (somehow I don't think James Bond would have). Bandaged from 10 PM - 9 AM.

On sunny and warm Sunday we walked with the dog at the local off-leash park, then I worked a bit in the garden. We had not yet trimmed the raspberry canes, and the sun was so lovely that I couldn't resist. Again no glove. Bandaged from 9 PM - 9 AM.

So today my hand is a little puffy again and I am wearing my glove. The sleeve is a constant, 365 days a year. But I was so hoping to be out of the glove and finished with bandaging at night. I see the physical therapist tomorrow and will get her professional opinion.

I may be paying the price, but I really got to enjoy my life this weekend!

Three weeks and still bandaging

I am one day short of two weeks dealing with a serious lymphedema flare up. I've had 6 sessions of physical therapy for manual lymphatic drainage massage and 2 cross-country airplane trips.

There is some improvement. For instance, I can wear my sleeve for most of the day and go without the glove for part of that time. Being glove-less has allowed me to catch up on computer stuff (requires typing), cook a good meal (requires using a knife), do all the ironing and brush the dog with relative comfort, all using my left, dominant hand.

However, I'm still bandaging overnight every night. Last night I tried to sleep without meds. I tossed and turned for hours. It felt like my hand was stuffed into a giant oven mitt and it was hard to find a comfortable position.

Tonight I think I will go back to the sleep aid meds just to get a good night's rest and not bother Rik.

Lymphedema and travel

I am back after spending a week with my parents on the other coast. The idea was to give my mother a break while my dad came home after 8 weeks in hospital and rehab. And since my mom had scheduled a surgical procedure, the other idea was to pamper her a bit. The surgery went very well, and I think I succeeded in the respite break and pampering.

I cooked yummy food. I washed the dishes. I folded laundry. I played Scrabble, dominoes, and many rounds of gin rummy. Best of all, my mother could leave the house knowing my dad was safe with someone who cared about him. So she was able to get a manicure, see a movie, run errands with a clear mind.

My lymphedema continues to improve ever so slightly each day. While back east I saw a physical therapist who specializes in manual lymphatic drainage, so I continued to get the treatment I need. Thankfully my health insurance provider recognized that I was in an "urgent" situation and needed specialized care, because they said they would cover two visits to the PT. The long airplane flights should not have set me back too much.

A new year

I celebrated a quiet new year's eve: roast chicken and prosecco for dinner, a wild Scrabble game (I got 62 points for "juggled," winning the game), and watched the last bit of a movie on tv.

My lymphedema continues to improve slowly, so I can wear the sleeve and glove for much of the day. I still need to bandage at night and hence don't sleep well, even with help from better living through chemistry.

If I was the kind of person who made new year's resolutions, I would no doubt aim to have more patience for the daily tribulations of living in cancerland.