Tag Archives: breast cancer cure

With gridlock over, time to roll up our sleeves and work for a cure

Time is compressing. I started my last post with “what a difference a year makes.” Today, I say, what a difference a week makes. I was grousing about Congressional gridlock which had shutdown the federal government. Then last Tuesday, Congress  found a way to mend fences, which means we may actually be able to move on to solving problems.

Of course, I may be speaking too soon. The fix is only temporary.  And while Congress seems determined to keep in tact funding for the National Institutes of Health that it promised at the end of 2016 with the 21 Century Cures Act, nothing should be assumed.  Hence, here are a few bills worth keeping an eye on or even picking up the phone and asking your representative for support in moving  forward. Last week, for example, I asked my congressman Rep. Leonard Lance to co-sponsor a House version of the American Cures Act to secure research funding through 2020. It took less than 5 minutes to pop him an email.

I’ve included links to each bills sponsor’s email, as well as the committee chairs, to make it easy for you to reach out, nudge along or outright ask what the holdup is. If this past year has taught us anything, speaking out leads to action. And every action is a step towards a cure.

American Cures Act (S. 640)

The bill would amend the Balanced Budget and Emergency Deficit Control Act of 1985 to allow larger increases in appropriations for the National Institutes of Health, Center for Disease Control, the Department of Defence health program, and the VA medical and prosthetics research program by making cap adjustments to discretionary spending limits through fiscal year 2021.
Introduced by Sen. Richard Durbin (D-IL)  last March, it now languishes in the Senate Budget Committee, headed by Sen. Mike Enzi.

Cancer Drug Coverage Parity Act of 2017 (H.R. 1409)

The bill would require group and individual health insurance coverage and group health plans to provide the same coverage of oral anticancer drugs (meaning pills )  that they do for IV drugs such as chemotherapy. It would prohibit health insurers from changing, replacing, reclassifying, or applying more restrictive limitations on oral anticancer medications than those imposed on intravenously administered anticancer medications.
Introduced by Rep. Leonard Lance (R-NJ) last March, it languishes in the House Energy and Commerce Committee, headed by Rep. Greg Walden. (As you can imagine, I’ve already pushed Rep. Lance on this).

Cancer Care Payment Reform Act of 2017 (S. 463)

The bill would require the Health and Human Services Secretary to establish a national Oncology Medical Home Demonstration Project under the Medicare program to improve quality of care and cost efficiency by changing the Medicare payment process to include a care coordination management fee and performance incentive payments to participating oncology practices. It would require developing performance standards for participating oncology practices based on specific measures including patient care, resource utilization, survivorship, end-of-life care, and patient experience.
Introduced by Sen. John Cornyn (R-TX) it’s languishing in the  Senate Finance Committee, chaired by Sen. Orin Hatch.

Enhanced Clinical Trial Design Act of 2017 (S. 1048)

The bill aimes to expand patient access to experimental treatments in clinical trials by enhancing the clinical trials process and providing updated guidance on eligibility criteria.

Introduced by Sens. Orrin Hatch (R-UT), Michael Bennet (D-CO), Richard Burr (R-NC), and Bob Casey (D-PA) last May, it languishes in the Senate Committee on Health, Education, Labor, and Pensions which is chaired by Sen. Lamar Alexander.

Triple-Negative Breast Cancer Research Act of 2017 (H.R. 1984)

The bill would require the NIH to expand, intensify, and coordinate programs for triple-negative breast cancer research through centers such as the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Environmental Health Sciences, the Office of Research on Women’s Health, and the Nation. It also directs the CDC to develop and disseminate triple-negative breast cancer information to the public and HRSA to develop and disseminate triple-negative breast cancer information to health care providers.
Introduced by Rep. Sheila Jackson Lee (D-TX)  last April, it languishes in the Energy and Commerce Committee, chaired by Rep. Greg Walden.

Lymphedema Treatment Act (H.R. 930/S. 497)

The bill would amend title XVIII of the Social Security Act to provide for Medicare coverage of certain lymphedema compression treatment items as durable medical equipment.
Introduced by  Rep. David Reichert (R-WA) last February, it languishes in the House Committees on Energy and Commerce; and Way and Means.  A senate version was introduced by Sen. Maria Cantwell (D-WA) last May and languishes in the Senate Finance Committee.

Breast Density and Mammography Reporting Act of 2017 (H.R. 4122/S. 2006)

The bill amends the Mammography Quality Standards Act (MSQA) of 1992 to require mammography results include information about a patient’s breast density and  shared with patients and their physicians.
For women with results indicating they have dense breast tissue, the summary must also include language encouraging them to consult with their physician regarding whether additional screening would be beneficial.
Introduced by Rep. Rosa DeLauro (D-CT)  in October, it’s languishing in the House Committee on Energy and Commerce, Ways and Means. A Senate version was introduced by Sen. Dianne Feinstein (D-CA)  in October and now languishes in the Committee on Health, Education, Labor, and Pensions. The two have sponsored this legislation a least four times, to no avail.

Breast Cancer Patient Protection Act of 2017 (H.R. 3338)

The bill would require health plans to provide coverage for a minimum hospital stay for mastectomies, lumpectomies, and lymph node dissection for the treatment of breast cancer, as well as coverage for secondary consultations.
Introduced by Rep. Rosa DeLauro last July, it languishes in the House Energy and Commerce, Ways and Means, and Education and the Workforce Committees, the latter of which is chaired by Rep. Virginia Foxx

Deferment for Active Cancer Treatment Act of 2017 (H.R. 2976)

The bill would amend the Higher Education Act of 1965 to allow for deferment of certain federal student loans while a borrower is receiving cancer treatment as well as the six months following treatment.
Introduced by Rep. Ileana Ros-Lehtinen (R-FL)  in June, it languishes in the House Committee on Education and the Workforce.

Robin Danielson Feminine Hygiene Product Safety Act of 2017 (H.R. 2379)

The bill would require the Director of NIH to conduct or support research to determine the extent to which the presence of dioxins, synthetic fibers, chlorine, and other components in tampons and other feminine hygiene products pose any risks to the health of women who use the products or the health of their children.
Introduced by Rep. Carolyn Maloney (D-NY)  last May, it languishes in the House Energy and Commerce Committee.

 

 

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Piecing back a life

As I face life after breast cancer treatment, I find I have more questions than answers about how to move forward. So I’ve decided to refocus my blog to examine the lives of the brilliant, successful, fun and happy women who have gone before me as breast cancer survivors. I have separated out the concrete steps they took to get them to where they are today.  I hope to find answers in their experience, strength and hope.

When Sally Creswell was diagnosed with breast cancer in August 1991, she was unemployed, separated and living in an apartment with no furniture.

“In treatment I was just going to get through it. I told myself ‘I can do this.’ But when I was done, no one was watching me. It’s like suddenly you are totally on your own and I was afraid of how my life was changing.”

She was 35 and still wanted children, even though doctors told her not to try, as the high estrogen levels could trigger a recurrence.

“I was feeling a lot of uncertainty for the future, helplessness because I was no longer doing anything,” she said. “There was also some anger about the anxiety I was going through every time I went back for a check up or scan.”

And then there were the unanswered questions: Why me? Will it come back? Will I know if it comes back?

“I had grown up with the message cancer always kills and I was questioning how long I would live, because the statistics were horrible and no one in my immediate family had had it.”  Family members added to the anxiety by expressing their fears that this could be her last birthday or last Christmas.

Not only had breast cancer robbed her of a chance to have her own children, but it detoured her career. The company she worked for had gone bankrupt. While she had plenty of lucrative job offers, she had to refuse them in order to undergo breast cancer treatment.

“I felt out of control and that my life would not be the same,” she said.

Still, she started her own business just as she was starting treatment for breast cancer.  And that gave her something to focus on as she tried to piece back together her life.

“The first thing I did after treatment was get a higher neck bathing suit. I exercised more and went to the beach a lot,” she said.  She found the sound of the waves and the salt air calming.

She also started reassessing her life, her relationships and what she wanted in life.

“I wallowed for a while,” she admitted. “I did not like the person I was after treatment because in my head was the thought that my life was over.”

To pull out of it, she read a lot of self-help books, joined Alanon, journaled, saw a therapist, went on antidepressants for a time and put together a plan.

“I think I journaled some and figured out all the obstacles that were holding me back, where I was unhappiest and decided I had to change those things,” she said. “One thing I decided was that I needed to get out and meet people

“I also think cancer made me realize who my friends were and who they weren’t and that I needed to make better friends and get out of the life I was living.”

Within a year, she had built the business enough to get a mortgage and buy a house in Frenchtown, a small community along the Delaware River. There she got involved in the business association, Alanon and other community groups, where she formed deep, lasting friendships.

Still, there were times fear crept in at night as she tried to sleep. “When I was really anxious, I had a mantra ‘In with the good, out with the bad.’

“What Alanon taught me is that worrying about something you have no control over is just stupid.  Exercise, eating well, you can control that. But otherwise, you just have to remember time counts now, so make the best of it. Be good to yourself and every now and then pamper yourself.

3 Steps to Take

These are the steps breast cancer survivor Sally Creswell took to get her life back on track:

1. Make a list of all the obstacles in your life and what you need to do to change them.

2. Get out and make some new friends. Look in the newspaper or go to meetup.com and see if there’s a group you want to get involved in.

3. Find a mantra that works for you in the anxious moments – such as “In with the good (inhaling) and Out with the bad (exhaling).”

Recommended books:

These are the books breast cancer survivor Sally Creswell recommends:

Codependent No More, by Melody Beattie

Love, Medicine and Miracles, by Bernie S. Siegel.

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Can You Be Cured if You Don’t Know the Cause?

I reached out to a friend who had recently battled breast cancer to ask her about her experience. As a neophyte inductee, I was concerned about the vainer aspects of it – losing my hair, going through early menopause – will it make me prematurely wrinkly and gray? Will I be hugging a toilet for the next four months? How long will it take my hair to grow back? I was a bit taken aback when her reply centered more on her beliefs on what caused her cancer in the first place – the stress of a bad relationship. My sister, who has recovered from brain cancer, believes the same thing.  After having her brain tumor removed, she also excised her husband from her life – her cancer-causing agent – and now lives happily along a sunny, Florida beach, cancer free.

A book I picked up written by a knowledgeable Muggle – someone who knows a lot about cancer and the research surrounding it, but hasn’t actually experienced it himself – proposed that cancer is caused by one of four things: too much stress, too many toxins, a bad diet or not enough exercise. A woman I met in a cafe turned me on to a theory propounded by Dr. R.G. Hamer called the German New Medicine. He believes cancer can be brought on by a sudden traumatic event. His son was killed in an accident and shortly thereafter the doctor developed testicular cancer, which led to his new line of thinking.

I can honestly say I have no idea what “caused” my cancer.  I’ve worked hard at developing good coping skills – journaling,  meditating,  deep breathing – to combat any stress in my life. My blood pressure when I’m not on the cancer ward is 110/70, which shows it must be working. Every year I barbarically “detox” for at least the month of January.  I exercise regularly, running 5ks, half-marathons, triathlons, masters swim, biking, spin classes, walking – I’m exhausted just thinking about it all. Overall I eat a good diet,  full of cancer-fighting foods, whole grains, no sugars, no processed food, nothing fried.  And while I’ve been no stranger to traumatic events over the last three years – having lost my stepfather in a tragic car accident, my father to lung cancer and watched cancer change my sister – my rogue cancer cells started their celebration bash long before any of those tragedies occurred.

I have to admit, while I’ve been angry that I’ve done everything I could to prevent this disease, I haven’t spent a lot of time considering what “caused” it.  After wasting years of my life trying to get to the root of every little thing that happened to me, I finally adopted the Chinese proverb: “If you understand why it is, it is what it is.  If you don’t understand why it is, it is what it is.”  But then I begin to wonder, if I don’t know what caused it, can I be sure to be cured from it? How do I know it won’t come back?

Nassim Taleb, author of The Black Swan: The Impact of the Highly Improbable says that despite our refusal to believe it, highly improbable things DO happen and have a huge impact on us. He says it’s a defect of the Judeo-Christian belief that if we live right, work hard, do the right things we’ll be rewarded with a perfect life. In truth, life is random and horrible things happen to perfectly good, deserving people. And in the aftermath what we learn is that we’re resilient, adaptable – but more importantly, that we were never really as safe as we thought we were. And because we know that, we are less vulnerable and more vigilant. And that makes us safer.

So I can live without knowing what caused my cancer.  My safety now lies in knowing that yes, it can and has happened to me.  My cancer cell count will go down to respectable limits, but the truth is I’d be a fool to think I am “cured.”  What I am now is vigilant, and therefore less vulnerable.  And maybe that makes me a little healthier.

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