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Archive for December, 2009

I am having more pain in my left shoulder, numbness down my arm and tingling and numbness in my left hand and fingers.  It isn’t as painful as it is annoying. The more painful my shoulder is, the more numbness I have in my hand.  In the area where I had radiation treatment, I have a lack of sensation in my skin, but pain underneath in my muscles, especially under my arm and around my shoulder-blade.  I sometimes have a sharp pain when I reach for something over my head. Other times there is no pain, just a stretching sensation in my skin.

I thought it might be temporary, but it is happening more often and lasting longer. 

I’m wondering whether this is a typical side effect of radiation therapy or if it’s a sign that I’m developing lymphedema.  I’m also wondering if I should have been doing some range of motion or other exercises to prevent this, and whether exercise will help prevent it from getting worse or even make it better. No one has given me any information about this. But, no one told me that self-massage would prevent the fluid buildup around the surgery site that makes it difficult to get a good ultrasound reading until after it was already a problem. I don’t know why, since it is simple and works in a few weeks.

I will talk to my doctors about this when I see them in January. In the meantime, I found this November 2009 article online:

Many Breast Cancer Surgery Survivors Report Lingering Pain

Women at the greatest risk for chronic pain were ages 18 to 39 and had undergone breast-conserving surgery, or lumpectomy, in which doctors remove only the tumor and some surrounding tissue. Other risk factors for persistent pain included radiation therapy, which is directed at the breast area to destroy any remaining cancer cells after surgery.  There are several reasons that breast cancer survivors experience pain such as nerve damage or injury from the surgery or radiation, but in the future, nerve-sparing surgery may help take the sting out of this persistent pain, according to study authors. . .

Another doctor adds. . .

“Pain decreases quality of life and should be a cause to reach back out to the surgeon or radiologist and ask for a referral to a physical therapist for intervention,” says Kneece, who is also the author of “Your Breast Cancer Treatment Handbook.” “Most pain can be addressed and reduced or eliminated.”

And this – which I suspected, and so have been doing some stretching exercises on my own:

Physical therapists can help women develop a plan to reduce or eliminate pain. In general, range-of-motion exercises after surgery can help reduce the risk of pain, according to Kneece. “If not performed, there will be a fibrous tissue which forms in the area restricting motion and causing pain when the arm is stretched,” she says.

I want to find out if this is early lymphedema, or if it may be the results of fibrous tissue. Either way, it is getting worse, but it sounds like it can be addressed:

“If one notices increasing swelling accumulating in the affected limbs or trunk, it is likely an early warning sign of lymphedema and she should be evaluated by a fully certified lymphatic drainage therapist,” says occupational therapist Cathy Kleinman-Barnett, a lymphedema specialist at Northwest Medical Center, in Margate, Florida.

“The additional fluid buildup can cause abnormal sensations such as tingling, aching, [and] heaviness, and should diminish or stop with range-of-motion exercises, stretching, and massage to stimulate lymphatic flow,” she says. “There is help available, and women should not have to live in pain.”

This article was in CNN Health

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I’m adding links to blogs written by women about their experiences with breast cancer, living with and beyond this disease.  Just finding and reading these blogs is another journey for me. It will take some time, because I don’t want to hurry through it. I want to get to know these women and what they went through.  If you have a blog and it isn’t listed here (yet), please contact me and send me the link.  I’m looking forward to getting to know all of you.

At the same time, I can’t help but feel overwhelmed by the number of women experiencing just this one type of cancer. There are far too many of us.

I appreciate all of you sharing your lives with the rest of us.

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The owl does not like to have her picture taken. This morning before dawn, I saw her sitting on the very tip top of a tree. When I went out the door as quietly as I could to take her picture, she saw me and flew away. All I got was this dark photo of her through the window.

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Resources for Women with Triple-Negative Breast Cancer from Living Beyond Breast Cancer  

Order Guide to Understanding Triple-Negative Breast Cancer, created by LBBC in partnership with the Triple Negative Breast Cancer Foundation (download brochure, order brochure).

“This publication offers helpful information, whether you have just been diagnosed or you are moving forward after treatment. Learn common terms your doctor may use and what might increase your risk for developing this type of breast cancer. Get the facts on treatments, and find out how to deal with myths about this diagnosis. If you have finished treatment, sort through post-treatment concerns, including follow-up testing and managing the fear of recurrence. Read the experiences of real women affected by triple-negative breast cancer and tips from healthcare professionals.”

“Read our publication on Triple-Negative Breast Cancer: Treatment Update and Tools for Healthy Living with Lyndsay N. Harris , MD, and Suzanne Dixon, MPH, MS, RD (transcript, audio recording). Hear the latest news on triple-negative breast cancer from medical and nutrition experts. Dr. Harris gives an overview of the biology of triple-negative breast cancer and explains how it differs from other types of breast cancer, who is at high risk and targeted treatments in the pipeline. Ms. Dixon explains how a low-fat diet and vitamin D may affect your risk of recurrence.”

“Listen to an audio recording on Triple-Negative Breast Cancer: Understanding Treatment Options and Post-Treatment Concerns (audio recording) with Ramona F. Swaby, MD. Learn which groups are affected more often by triple-negative breast cancer and why. Dr. Swaby discusses available treatment options including a review of the latest research in targeted and biological therapies, how to manage follow-up care and the importance of participating in clinical trials to further research development.”

Living Beyond Breast Cancer

Triple Negative Breast Cancer Foundation

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I put off finishing the ceramic tile job in the bathroom and laundry room for about a year because I work from home and I don’t have an office in town where I can escape the mess. And I only have one bathroom. And it meant the washer and dryer and other laundry things would be sitting in my kitchen.  And because I didn’t have the energy. But most of all because one thing invariably leads to another — the looming unforeseen.  

The men came and started work on the last nice day before our cold snap.  The next day it snowed and the wind chill was several degrees below zero. I don’t have a heated garage — actually, I don’t have a real garage —  so in order to continue working, the men put their tile saw on my back porch and fastened up plastic walls around it for a workroom.  My porch serves as my “workshop” until I build a real workshed, and it also serves as the mudroom and a place where my grandsons keep some of their things for plundering and adventures when they stay in the country.  

So the porch holds the tool box and on the wall above hang jars full of different sizes of nails, hand saws, hammers, and other tools.  Hanging on pegs are John Deere and dairy caps, along with my down-filled red winter hat with Holden Caulfield earflaps that I bought for winter vet check days. Shelves hold stacks of magazines that need to find their way out the door, more tools, and normal miscellaneous in a house with boys — little packages of bobbers, a baseball, a pack of BBs, canteens for hiking, a tent in a bag, and below is the footgear – boys’ workboots, green Wellies,  and Sorels with winter liners.  

On another wall is a gunrack holding several fishing poles, a BB gun, slingshot, two sets of binoculars and a canvas fishing tackle bag.  Cabinets are crammed with canning jars, oil lanterns, flashlights, housepaint, glue guns, sandpaper, oil and filters for the riding mower, and just about everything else I’ve ever thought I needed for a project whether I got it done or not.  

In other words — a lot of stuff. That should be in a garage and a workshop.  

Everything Including the Kitchen Sink

Everything Including the Kitchen Sink

The tile saw buzzed and whined and buzzed and whined while I sat behind a closed door doing my paid work and trying not to think of what was going on around me in my house and hoping I didn’t need to use the bathroom. When the men were done cutting tile, everything was covered with a thick layer of white dust. A very thick layer of white clinging dust.  

Then we discovered the 220 outlet for the clothes dryer didn’t have a proper ground wire. That became apparent when the man washing down the tile with a big, wet sponge got shocked. An Unforeseen Thing. So I called the electricians who came to replace the outdated wiring and outlet. They needed to get into the cellar, but the tile saw in the temporary room full of tile dust was sitting on the cellar door, which is located in the floor on the porch, and there was nowhere to put the tile saw because the wind chill was still minus 26.  

Wednesday, when I had to go to an actual real time work meeting, I walked out the back door with strips of tile dust on my slacks and jacket.  I reached the Babbling Stage yesterday morning and had to tell myself this would soon be over — nothing like the neverending “two weeks” of months-long complete remodeling projects, such as the one I undertook several years ago when I had to watch Money Pit for comic relief and perspective.  

This morning the tile work is complete. The only thing left is to touch up the baseboards and install a threshold.  

And put everything back and clean up all the rooms.  

Must go now. Men entering the premises . . . . to be continued. . . .

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More about Carolyn Scott Kortge, author of  The Spirited Walker: Fitness Walking for Clarity, Balance, and Spiritual Connection

Recent post – Spirited Walking and Pheasants

 

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Here’s a post from Awful Library Books that’s worth reprinting here. Beware of outdated information on cancer in books that have been on the shelf too long in your small town library – which might be the first place lots of us go to find information when we get a diagnosis.  Check the publication date and remember — there is a lot of new information on the causes, types, and treatment for cancer.

Helpful Cancer info!
November 20, 2009 · 12 Comments

You can fight cancer and win
Brody
1978

Medical topics that are obviously dated REALLY chap my MLIS, folks! I know Jane Brody is a respected health writer, but she would not depend on information from the 70’s. I am sure those of you old enough to remember the 60’s and 70’s can remember that a cancer diagnosis almost equaled a death sentence. This kind of material needs to be weeded pronto! I would like to suggest that everyone in public library drop ‘cancer’ into your catalog search and see how many “old” things come up! Holly and I find WAY too many floating around out there in library land to be very helpful.

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