Monday, June 14, 2010

The saga continues

Well. Apologies are in order for my lapse in reporting here about my battle. This lymphedema thing really hit me hard. Once I digested the news of having breast cancer, and decided how to go into battle against the beast, I was committed, strong of will, and ready for whatever it delivered. But I wasn’t sufficiently warned about this new distraction, and definitely not prepared to face it. So it’s been really difficult for me to get my head around the newest change to my body!

As I mentioned, I told the therapist on the 3rd that I wasn’t going to get another graduated compression wrap – at least not until I had someone to help me out. I really didn’t want to go back to her at all, as you may have noticed in my not so subtle comments. She did give me a prescription for a compression sleeve, based on the results of my first couple visits with her. The therapist did say that I wouldn’t need to have the glove she had threatened me with, and that my condition was only mild to medium at this time. So I did go to the prosthetics office to get measured for a sleeve, and then returned the next day for a fitting.

The thing is like the very heavy duty support stockings we saw some little ol’ ladies wearing under their housecoats when we were younger. :o) Mine squishes my arm really tightly from wrist to armpit, presumably to help keep lymphatic fluid from accumulating in the arm. It’s flesh tone, so it’s not horribly offensive. I guess. It’s certainly offensive to me!!!

The consultant who outfitted me with this thing was funny and engaging and humorous and supportive. I liked her immediately. She told me how to care for the thing (did I mention that I don’t like it?) – taking it off each evening and hand washing it in dishwashing soap, rinsing it well and hanging it to dry, and then just slipping it on again in the morning.

Slip it on? Remember how hard it used to be (still is!!) to get into our sexy jeans – laying down on the bed and breathing in, in hopes of getting the zipper up? Slipping this thing on is at least 20 times harder than that!! The strength of my compression sleeve is measured as 20-30mmHg (20 to 30 millimeters of mercury)…whatever that equates to. VERY tight jeans!

And after ‘slipping it on,’ I could watch my poor right hand puff up with retained fluids that were trapped there. That couldn’t be right!??!!!

The same day I was fitted with the thing, I had an appointment with the Radiation Oncologist. This is another doctor I like, because of her openness and empathy, plus her clear and understandable explanations of the whys and wherefores of radiation. When she walked into the exam room, Maggie and I both saw her expression change when she saw my compression sleeve. She knew immediately why I was there to see her.

We talked about the lymphedema, and radiation. She confirmed that the radiation treatments would absolutely make the lymphedema worse, and that it couldn’t be prevented from doing so. She explained why limiting the radiation to only a certain portion of the chest area and excluding the armpit area (where it would be needed just as much) was not recommended. Seems that if such partial treatment was performed, and the cancer did return later, radiation could not be repeated because of possible overlapping of the treatment area, which would be more detrimental than helpful.

She went on to explain that there really aren’t any good studies yet to verify statistics on the benefits of radiation in my type of situation, partly because there are so many variables, and partly because of the requirement for placebo treatments (meaning no radiation for patients who really need it). They ‘believe’ it to be beneficial to the delay of recurrence of the cancer based on past history, and recommend it highly.

Dr. Basden said she totally understood my concerns and would not try to force me to have the radiation if I was opposed to it because of the lyphedema. Said she would be there if I have any more questions or changed my mind. And would certainly be there if I need her down the road.

So…for the time being, I’m content with my decision not to receive radiation treatments at the end of the chemo.

Today I spoke with another lymphedema therapist here who had been recommended by the prosthetic consultant. They work closely together, and she said Cindy is the best in town. Very interesting conversation!

I explained my situation, said I’d had a couple treatments from another therapist but that we simply did not work well together, that I have a sleeve, know the self-massage technique and have exercises, but that I am interested in receiving a more complete initial therapy session. Cindy was quite surprised to hear that I had worn the compression bandage for several days at a time, saying she changes them every day! Was very surprised to hear that a glove, or at least a gauntlet glove (kind of like a weight lifting glove), was not prescribed. Was shocked I’d been told to wear the compression sleeve without a glove, and recommended that I not wear it at all until we have a chance to go thru the full MLD therapy routine.

She’s very busy for the next couple weeks, but will schedule me as soon as she can squeeze me in. So to speak. And I’m delighted to report that I’m not wearing the damned sleeve anymore, as of today!

Tomorrow is chemo, and the next day is the shot that keeps me well while making me so miserable. I’m going to ask if they can reduce the quantity of the shot if my blood report comes back as exceptionally well as it has in the past.

Meanwhile, I’m doing amazingly well. I am tired all the time, and my tongue still delivers taste like bottom of a birdcage, and I don’t sleep worth a damn…but all in all, things continue to be better than I anticipated! Except the lymphedema, of course. I’m no longer angry about that, which is good for my health, just very sad. But I’ll get over that too.

Today, Maggie and I had lunch down in the little town of Sahuarita, at the grand opening of a Tucson favorite, the El Charro Mexican Café. Ate too much, had a couple good margaritas, and took a nice nap when we returned home!

‘My’ baby owl is growing up nicely. He/she is coloring out beautifully, and is flying better every day, though his landings in trees are still clumsy and noisy! And last night I heard him trying to hoo-hooo-hooo-hoo-hoo, but so far, all he can manage is chirping sounds!

We had a few gorgeous relatively cool days here, hi 80s to low 90s, but tomorrow is supposed to be back to 104 or so. Back under the air conditioner!!

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