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

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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We must rethink a system that disproportionately rewards medical testing and procedures rather than thorough and complete histories and physical exams.

On Being a Difficult Patient

Rarely do difficult patients get to weigh in on why they are “difficult”—and rarely do doctors get to explain to difficult patients why it’s difficult to care for them. In the first of these essays, patient Michelle Mayer, a research professor in North Carolina with a chronic autoimmune system disease, tells why she eventually became a difficult patient, and how it helped her get the doctoring she needs.

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What do you think about the new recommendations on mammograms and self-exams? 

The recommendation of the U.S. Preventive Services Task Force (USPSTF) is that women over 50 should have an annual mammogram. Previously, it was women over 40.  We used to be told to do monthly self-exams. The panel is not recommending self-exams.

What do you think? Will you continue to do a monthly self-exam? 

“The net effect of the new guidelines is that screening would begin too late and its effects would be too little. We would save money, but lose lives,” says Stephen Feig, MD, professor of radiology at the University of California at Irvine and president-elect of the American Society of Breast Imaging.

Breast Guidelines Wipe Out Years of Progress

(A group of breast cancer experts) say the guidelines would represent a major setback, wiping out decades of progress.

“Deaths from breast cancer have dropped by 30% since 1990, when mammography screening beginning at age 40 became more widespread,” says Daniel B. Kopans, MD, professor of radiology at Harvard Medical School.

He says the task force relied on studies with methodology flaws that underestimated the benefits of mammography.

“Numerous [well-designed] studies have proven the benefits of annual mammograms beginning at age 40,” Kopans says.

“The guidelines tell women in their 40s that they can go back to the 1950s when they had to wait until a tumor was too large to ignore, and then go to the doctor when there was no longer any chance of a cure,” Kopans says.

Breast Screens’ Benefits Outweigh Risks

Feig also took issue with USPSTF’s reasoning that for younger women, annual mammograms carry a risk of harm, chiefly anxiety and false positives, that could outweigh their benefits.

“Think of a smoke detector. Do you want it to go off only when the house is half burned down or put up with the fact that it will sometimes go off when there is smoke in the kitchen?

“You’re going to have some false positives, if you detect cancer early,” when it is most curable, Feig says.


Of course, the recommendations were for women who had not had breast cancer. Women who have had breast cancer should follow the recommendations of their doctor.

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The Spirited Walker: Fitness Walking for Clarity, Balance, and Spiritual Connection, by Carolyn Scott Kortge, gives me guidance about walking and breathing. Kortge was a presenter and a workshop leader at the Life Beyond Cancer Retreat at Miraval when I attended two years ago. I’m not a fitness walker, but I turn to Kortge’s book for help and inspiration. Walking might be the one best thing that I can do to improve my health, reduce my risk of recurrence, and increase my sense of well-being.

This morning, I re-read the chapter, Breathwork for Walkers, which explains how controlling the pace and depth of breathing can increase our stamina and help us relax by tapping into “a channel of energy that reaches deep into the body instead of ending in gasps at the neck.”  When we breathe right, “fears disappear. Breath spreads through the body like a soothing breeze.” 

When I returned from six weeks of radiation treatment and felt fear and panic intrude into my day, I grabbed a jacket and headed out the back door to walk it off. Sometimes I drove into town and walked the sidewalks around the lake or the fishing pond. Or I drove up to the farm, left my car, and headed down the gravel county road, sometimes veering off on a pivot road into the middle of a field, then back to the car.  Once I didn’t want to worry about calculating how far I could go before needing to turn back so I called a relative and said I was walking as far as I could, then I would call them to pick me up. 

Sometimes I walked and counted my breath. Sometimes I counted my steps or followed other of Kortge’s directions. Sometimes I walked counterclockwise around the walking path and prayed, then realized I was meeting serious fitness walkers going the other directions, knees and elbows pumping high.

I went through a time this year when I didn’t feel well and I was depressed and I didn’t walk.  I believe if I had walked during that time, I would have been better much sooner, both physically and emotionally.  Walking and breathing fills us with a life force. Kortge discusses that connection between between breath and spirit or life.

 The Latin word spiritus means both breath and spirit. The Sanskrit language speaks of prana, the life force carried in the breath. English places spirit at the essential core of life in the words inspire and expire. . . . The power of deep rhythmic breathing to enhance physical, mental, and spiritual well-being forms the foundation of many ancient spiritual and healing practices. . . Breath links the inner and outer worlds, unifying action and intention. It guides us across the communication gaps that develop when mind and body are separate. . . .By developing awareness of the breath, we become better listeners for the physical information we receive from our own bodies.”


As a cancer survivor who is constantly learning how to be vigilant for signs of a recurrence without being anxious over every physical change, I can use all the help I can get to become a better listener for the information I receive from my body. Walking and breathing are not just good for me, but may help me learn a new way of being a survivor.  I’m going to re-read Kortge’s book.

And I am going to walk somewhere, somehow, each day, whether it is on a treadmill when the weather is bad, through the fields in the sunshine, down a gravel road, up the sidewalks in town, down a fence row, or up and down the stairs in my house.

This morning when I went outdoors,  there was a dusting of snow on the ground. The pheasants came out of the newly harvested cornfield and flew up into the tops of the trees.  I took a photo of them against the pale morning light.

Later, I saw them hurrying past my house, headed for a wheatfield.

On The Walking Path to Survival – more on Carolyn Scott Kortge

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