Friday, June 29, 2012
The place where my breast used to be swelled up with fluid. My surgeon stuck needles in and drained. This doesn’t hurt because the tissue where my breast used to be is numb.
Three times it filled up. Three times, I let her drain it.
When it filled up for a 4th time, I refused the draining.
This isn’t just swelling and sloshing. This fluid makes it hurt to raise my arm over my head or do other stretches. It hurts from below where my breast used to be up, across my bicep, to my elbow.
I decided it was time for more web research.
My surgeon doesn’t use words like that. I could see and feel that my former breast area and my side were swollen. The web taught me the word for this is lymphedema.
Sloan-Kettering has been doing research on acupuncture to treat lymphedema.
Propaganda on acupuncture sites claims that the skinny needles don’t hurt. Being a needle phobe, this encouraged me.
My husband, the alien, has several students from China. He asked them where they go for acupuncture.
Their favorite doctor was in Chinatown.
I went to him. Those needles hurt going in! And he twisted them, which also hurt. And he left them in for about 20 minutes coming back periodically to twist them again.
None of the needles went into my swollen tissues. They were mainly on my shoulder.
All I felt when I left was relief that the needles were out. The acupuncture doctor said to come back in a week for another treatment. He also tried to sell me some herbs. The American name for his recommended herb is astralagus. It’s much cheaper when sold under its American name.
Over the next few days, the swelling went down.
I went back two weeks later. That was 2 weeks ago.
I can now report that the swelling is nearly gone. When I reach my arm over my head, it doesn’t hurt. If I hang from my hands, there’s tightness below where my breast used to be, and a little tightness in my armpit. But that’s it.
If it stops improving, I’ll give it one more go – acupuncture isn’t cheap.
I’m just glad to find that needles – not sucking stuff out, or injecting stuff in – just small sterile needles that don’t make me bleed – can fix a health problem that regular medicine wasn’t able to help.
Thursday, June 14, 2012
First, I want to make clear that I never stuffed my bra as a teenager. I never could figure out the point. It wouldn’t stop the girls in the gang shower at gym from calling me “barely a pinch” and it wouldn’t stop the rude boys from saying the truth, “she only cares about homework.” Both groups thought these were insults. I didn’t see it that way.
The only time I cared at all was when a boy whose poetry I admired said he only likes “the big breasted ones.” A friend who was endowed in that department went out with him. She said he spent the entire date figuring out ways to touch her breasts as if by accident. I was glad I didn’t attract that kind of attention.
I just checked both Google and Amazon to see if that high school poet ever got published. The only place I found his name was on mylife.com. Not on poetry sites or book vendors. I didn’t bother to join mylife.com to find out more about him.
But I am now interested in bra stuffing. My clothes look odd with only one breast. Medicare will pay for one prosthetic every 2 years. I went to a local store that has a department that specializes in mastectomy products. I was stunned to discover that Medicare has approved a $240 silicone bra insert. The thing is heavy and has a weird texture. The store carries other more expensive models, but nothing I liked. So, I made it my homework to find out what else is out there.
I discovered that there are silicone models that weigh less, but none of them feel natural. And when I lie on my back, they stick up like a Star Trek bra, but only on that side. Some of the prosthetics come with a matching support for the other side, so the wearer can look like a Star Trek actress on both sides.
I found swimming models that are designed to allow water to flow along the skin, so they’ll feel natural while swimming. They are so heavy that they weigh down the pockets in mastectomy swimsuits. I put one into a swimsuit, and suddenly one breast appeared at least an inch lower than the other.
Then I started reading the web. Bath puffs are popular as swimming prosthetics. Bath puffs are just held together with a piece of string. So, the wearer can cut the string, cut off the appropriate length of bath puff and re-knot it. There are also instructions for cutting up an old nylon stocking to make prosthetic pockets to sew into any swimming suit.
There are instructions for knitting a tit. These looked so soft and light weight that I went to my local knitting shop and took a lesson. After that I decided it was worth the $12 to buy one from the former midwife who sells them on ebay. This woman says she’s sold thousands to the British Health Care Services. At $12, medicare might be interested. They do need to be washed and dried, so women will need at least 2 of them. Still, that’s 1/10th what the official approved model costs.
There are also instructions for filling an unlubricated condom with water and knotting it. And instructions for folding up nursing pads to use as bra stuffing.
All of these are way more creative than the wadded toilet paper that teenagers used to use. For all I know, today teenagers may buy the lumpectomy prostheses that are guaranteed to add at least one size.
Medicare also pays for 4 mastectomy bras a year with pockets. I never looked at $40 bras before. http://www.metromedicalonline.com/2591amoena.html
These things are great. They have wide shoulder straps. Ever since I had surgery to repair my broken collar bone (it took a 2-ton car to break my collar bone, so I deserve bragging rights here), I can’t feel when the strap slips off my shoulder. This bra stays on, no matter how much exercise I do.
It’s nice to know that if I have to stuff my bra, the bra will stay on.
Tuesday, June 5, 2012
The American Cancer Society is equivocating with women’s health.
According to National Breast Cancer Foundation, “Taking a few minutes to do a breast self-exam a minimum of once a month can make a lifetime of difference. Nearly 70% of all breast cancers are found through self-exams and with early detection the 5-year survival rate is 98%. If you find a lump, schedule an appointment with your doctor, but don't panic—8 out of 10 lumps are not cancerous. For additional peace of mind, call your doctor whenever you have concerns.”
I found my cancer by self-examination. It was surgically removed at an early stage. I think this is the best possible outcome. Find the cancer. Get rid of it. Get on with my life.
I wrote ACS: “I'm writing to ask that the ACS recommend monthly breast self-exams. I recently had a mastectomy because I found a lump. The mammogram didn't see it. Mammograms miss 30% of tumors. If I had not been doing monthly self-exams, I could be dead now. I think it would save lives if ACS were to endorse monthly breast self-exams.”
They wrote back a long meandering letter, which I’ll print in its entirety after I have my say. Their main objection to endorsing Breast Self Exam is that it makes some women uncomfortable. I don’t know any women who are comfortable with mammograms. ACS endorses them. Very few women are comfortable with having doctor poke and prod their bodies. ACS endorses that.
So, why not Self-Exams? I like the motto of the Breast Cancer Survivors organization Beyond Boobs: “If you’re old enough to have them, you’re old enough to check them.” Any other answer makes no sense. Women’s lives are at stake. Men’s too.
Here’s the ACS reply to my simple and reasonable request.
Congratulations on your survivorship! Thank you for taking the time to share your suggestion regarding monthly BSE with the American Cancer Society. You make some good points and your feelings are certainly understandable. You are correct that mammograms are not perfect at finding breast cancer. The American Cancer Society believes the use of mammograms, MRI (in women at high risk), clinical breast exams, and finding and reporting breast changes early, according to our recommendations for breast cancer early detection offer women the best chance to reduce their risk of dying from breast cancer. This approach is clearly better than any one exam or test alone. I have forwarded your feedback to our staff who handle these considerations. Please be assured that your input is important to us and helps us improve our information.
It is important to note the Society has placed emphasis on breast self-awareness, which for some women may be achieved by regular or occasional BSE, or simply being attentive to changes that can be noticed during daily activities such as bathing, dressing, etc.
Breast self-examination is an option for women starting in their 20s. Women should be told about the benefits and limitations of BSE. Women should report any breast changes to their health professional right away.
Research has shown that BSE plays a small role in finding breast cancer compared with finding a breast lump by chance or simply being aware of what is normal for each woman. Some women feel very comfortable doing BSE regularly (usually monthly after their period) which involves a systematic step-by-step approach to examining the look and feel of one's breasts. Other women are more comfortable simply feeling their breasts in a less systematic approach, such as while showering or getting dressed or doing an occasional thorough exam. Sometimes, women are so concerned about "doing it right" that they become stressed over the technique. Doing BSE regularly is one way for women to know how their breasts normally look and feel and to notice any changes. The goal, with or without BSE, is to report any breast changes to a doctor or nurse right away.
Women who choose to use a step-by-step approach to BSE should have their BSE technique reviewed during their physical exam by a health professional. It is okay for women to choose not to do BSE or not to do it on a regular schedule such as once every month. However, by doing the exam regularly, you get to know how your breasts normally look and feel and you can more readily find any changes. If a change occurs, such as development of a lump or swelling, skin irritation or dimpling, nipple pain or retraction (turning inward), redness or scaliness of the nipple or breast skin, or a discharge other than breast milk (such as staining of your sheets or bra), you should see your health care professional as soon as possible for evaluation. Remember that most of the time, however, these breast changes are not cancer.
I can also provide the following link to view our complete recommendations:
American Cancer Society recommendations for early breast cancer detection in women without breast symptoms
Thank you again for sharing your concerns with American Cancer Society.
Online Cancer Information Specialist
If you have any questions, please contact us via http://www.cancer.org or call 1-800-ACS-2345. Information Specialists are available 24 hours a day, 7 days a week.
This e-mail message is not intended as medical advice, and should not be relied upon as a substitute for consultations with qualified health professionals who are familiar with your individual medical needs. The American Cancer Society makes no warranties of any kind regarding this e-mail message, including but not limited to any warranty of accuracy, completeness, currency, reliability, merchantability or fitness for a particular purpose and such warranties are expressly disclaimed.
Copyright (c) 2007 The American Cancer Society, Inc.