October: A Month of Ambivalence

October:  A Month of Ambivalence

October is a month of ambivalence—some leaves still lingering green next to brilliant golds and reds, crisp mornings that morph into warm, sunny afternoons, dense fog that rolls in on morning commutes and then moves into clarity an hour later–October with its uncertainty and predictions, courage and fear.

It’s a month that for whatever reason has been designated breast cancer awareness month, a month of prolific pink ribbons, pink scarves and t-shirts, pink appliances, pink M&Ms, marketing gone awry.  Wouldn’t April be a better choice with its first yellow daffodil signaling hope?

In October of 2003 my sister’s breast cancer returned and mine was first diagnosed.  It was a month that changed the course of our family’s life, teaching us not to make plans but to take each day as it comes, a month of inward searches and hidden tears and fears, brave smiles, hope tempered by a reality that loomed large.  My sister’s cancer would not be cured but could be treated for a while, only eighteen months it turned out.

What is certain about October is that it will return every year to be experienced again and again in all its pinkness that could overshadow October’s brilliance if we let it.  It signals the possibility that this October could be my mother’s last.  It signals memories and fears my cancer will return.  It signals uncertainty for my daughters’ and granddaughters’ futures, as we are all reminded of October’s ambivalence, October’s uncertainty, October with its courage and its hope, its losses and its grief.

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If you would like to read the story of how my sister and I faced breast cancer at the same time, my memoir In My Sister’s Footsteps:  A Walk with Breast Cancer is available now on Amazon.  I think the story of my sister’s courage and her determination to live life to the fullest while she could will inspire anyone faced with the challenge of surviving breast cancer.

Grocery Shopping List: Arsenic, GMOs, Pesticides, and Parabens

My grocery shopping just became even harder this past week with the release of a study about the levels of arsenic, a known carcinogen, in rice.  As a breast cancer survivor, I have spent the last seven years working on a diet that is nutritious that will also prevent a recurrence.  I avoid soy, gluten because of gluten intolerance, meat, lactose because of  lactose intolerance, nightshades because of fibromyalgia, and pesticides. I avoid personal care products that contain parabens because of their estrogen-like effect on the body.  I buy natural cleaning products to avoid as many chemicals as possible.   I try to buy organic for the ten foods that contain the highest levels of pesticides.  Because of my gluten intolerance, I was eating mainly corn and rice products (cereal, pasta, bread mainly) and trying to find corn products without GMOs.  Now I need to limit rice because of arsenic.

I know I am a little obsessive about food.  I am haunted by my sister’s last year of life.  I don’t have the BRCA1 OR BRCA2  gene.  Since all four members of my family have been diagnosed with cancer (my father also died of cancer), I am left wondering if the cause could be environmental or diet.  Preventing cancer is hard work; preventing a recurrence is even harder.

After an hour spent strolling the aisles of the grocery store a few days ago, I had a nearly empty cart.  I had passed by the cereals with GMOs and products made with corn or rice.  I was tempted to buy more products made with quinoa, but honestly, quinoa and I don’t like each other.  I picked up some spinach, bananas, and a magazine on healthy eating and came home.  A few minutes later, my daughter called to ask me if I heard about the spinach recall—e-coli apparently.  I sat down with my banana and the magazine, hoping I could find a recipe using some grain other than corn or rice that would also include pesticide-free vegetables.  I’m not very hopeful.

I know I might be extreme in my obsession to find healthy diet options.  I have no control over genetic factors.  I have limited control over my environment, although I can be careful about the cleaning products I bring into my house.  I can buy paraben-free cosmetics and organic fruits and vegetables.  I can’t control what goes into the food I buy.  I wish I could.

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My book In My Sister’s Footsteps:  A Walk with Breast Cancer has just been published and is now available on Amazon.
I hope my sister’s courage and sense of humor during her cancer diagnosis and treatment will be an inspiration to anyone diagnosed with cancer.  Her spirit was strong, and she left behind a legacy of  hope and a love of life that can guide us all through challenging moments in our lives.

A Cruel April 1

“For there is no friend like a sister in calm or stormy weather.”  —Christina Rossetti

A Cruel April 1

I never liked April Fool’s Day.  I suppose it’s because I am a very serious person, probably too serious many who know me would say.  Still, I don’t like seeing a person made a fool of unless they really enjoy it, and who does?

In 2005 on April 1, my sister died of breast cancer after a fight that began in 1999.  I spent the last ten days of her life in the hospital room with her, and I am still haunted by those final days.  April 1 no longer signifies April Fool’s Day to me.  It is the day I lost the only sibling I had.

My sister’s breast cancer recurrence was found in October 2003, the same month I was also diagnosed with breast cancer.  We fought the disease together, supporting each other all the way until the end.

I sometimes read about sisters who don’t get along, sisters who don’t keep in touch, sisters who don’t even like each other.  I can’t imagine it.  We didn’t always get along, but she was my big sister, the one I looked to every day for strength and guidance.  I thought she was the strong one, the loving and giving one, the one who knew how to face a challenge and win out over it.  Instead, she died and I lived.

The cruelty of her death on April Fool’s Day is also ironic.  It was a day I already disliked, but now when the day arrives, it hits my heart like a catapulting rock.  Throughout my sister’s illness, there was a place within me that hurt every day, a fear that kept growing and growing as I watched her health deteriorate while her optimism, sense of humor, and courage grew.  She hid her fears from all of us.  After her death, that spot in my heart was filled with grief, a grief I still have not gotten beyond.  I struggle every day with survivor guilt.  I lived and she did not, and there are times when I believe the wrong sister died.

I won’t be playing any jokes on anyone today or on any April Fool’s Day in the future.  I know many people, especially children, love this day.  It’s such fun for them to pull a prank on someone and be able to justify it by saying, “April Fool’s!”  I don’t begrudge them their fun.  But today I will buy some flowers, and my mother and I will take them to the cemetery as we always do.  We will put them in a green plastic cone at the side of the headstone marking her grave, and I will walk away as always wishing I had her still by my side to guide me, to make me laugh, to keep my focus on the good things in life instead of the bad.  I want her to call me like she did every day.  I want to giggle with her like we always did since we were little.  I want to shop with her and find bargains, a special talent she had.  I want to be with her the way we once were before breast cancer.  I don’t want to go every year on April 1 to the cemetery in order to be near her.  I want to hear her laugh, see her smile, and watch her hold her grandchildren.  I don’t know where she is, and I am left with this emptiness that nothing seems to fill.

A Phone Call That Ended My Breast Cancer Donations

“Perhaps everything terrible is in its deepest being something helpless that wants help from us.”
—Rainer Maria Rilke

A Phone Call That Ended My Breast Cancer Donations

This past week I received two phone calls soliciting donations for breast cancer treatment and research.  I am a breast cancer survivor and my sister died of breast cancer, so I know how important these organizations are.  However, the phone calls this week changed my willingness to donate.

I usually just hang up when I receive phone call solicitations, but when the calls relate to breast cancer, I sometimes am willing to at least listen.  One call came from an organization I was not familiar with.  Many of them sound similar:  Breast Cancer Research Foundation, The International Breast Cancer Research Foundation, The National Breast Cancer Coalition, The Breast Cancer Fund, The Breast Cancer Alliance, and many others.  They all want my money.  But what I want is prevention.  What I want is a cleaner environment.  I want chemicals, especially parabens, removed from the products we buy and use every day.  All the money poured into research so far has still not produced a cure.

The first phone call I got was fairly high-pressure, even after I explained that I specifically choose local organizations to support and I don’t contribute money over the phone.  The caller would not give up, so I had to just hang up. The second call the next day came from Memorial Sloan-Kettering.  I have supported the hospital with small donations because my sister went there for a consultation after her cancer returned.  I don’t send much.  I am now retired and on limited income.  I do support two local organizations, CRAAB and To Life! and I will be volunteering more for them.  After the phone call this week from Memorial Sloan-Kettering, I will no longer be donating there.

It would be an understatement to say that this caller was more than persistent.  He began by saying how much they appreciated my past donations.  That would have been a nice phone call to receive.  But he went on to ask me to donate more.  I explained I could not, but he would not take no for an answer.  He continued to ignore me, interrupt me, and ask me to contribute $1.00 a day, just $30 a month.  I didn’t want to know if this was a one-time donation or if he meant every month because at that point it didn’t matter.  I told him he was not listening to me when I said I was doing all I could and I was beginning to resent his suggestion that it was not enough.  He countered by saying he was appreciative of what I had done in the past and he wasn’t suggesting it wasn’t enough, but then he went on to say he was simply asking me to contribute more.  It was a little bizarre to hear him deny what he was obviously saying, so at that point, I told him I would no longer contribute to Memorial Sloan-Kettering.  I would instead keep my money supporting local organizations where I could see where the money went.

Every time I send money anywhere for breast cancer research, I hesitate because no cure is coming.  The pharmaceutical companies and the entire oncology industry seem to me to be profiting from this disease more than they want to eradicate it.  I know that probably sounds crazy to some people.  I know it is my grief speaking through anger at the loss of my sister.  I am much more at peace now as I plan to volunteer my time to help local groups and send a little money to these groups when I can afford it.  But I will no longer respond to phone call solicitations or mailings from companies that send me note paper, address labels, calendars, and memo pads in the hopes that I will continue to support them. I won’t.

Note to the Susan G. Komen Foundation and Planned Parenthood: Never Underestimate the Power of a Breast Cancer Survivor

“I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I’ve bought a big bat.  I’m all ready you see.
Now my troubles are going to have troubles with me!”
—Dr. Seuss

I try not to blog about controversial issues, but this week’s news story about the conflict between the Susan G. Komen Foundation and Planned Parenthood has forced me to reconsider, at least for today.

My sister and I have supported the Susan G. Komen Foundation for years.  Since my sister’s diagnosis twelve years ago, since my diagnosis eight years ago, and my sister’s death in 2005, I have believed that Komen’s support of women with breast cancer was worthy of my donations.  The walks have been important to my family because much of the money was kept locally to support diagnosis, treatment, and research in our area.

The important thing to remember about all of this is no one should underestimate the power of a woman who has had breast cancer.  We are vocal, passionate about survival, and determined.  We will never stop our support for services for women wherever those services are offered.  Anyone who sat in the room with my sister during her final ten days of life would never insert politics into the issue of providing services for women that could save their lives and spare them the agony I witnessed my sister undergoing at the end of her life.

This is one more examples of how our dysfunctional Congress affects us all negatively.  I hate to see women react emotionally to the point where they say they will no longer do the Komen walks or support Komen in their efforts to provide grants for breast cancer research.  I wish more than anything something could have saved my sister’s life, but at least I can hope that there are women whose lives will be saved by early detection, by better treatment, and by environmental changes that will prevent breast cancer.

I have seen in the past two days how people, including New York City Mayor Bloomberg, will step in and support free mammograms and treatment for women without insurance.  Good can always come out of bad.  In the past few days Planned Parenthood has received more in donations than they were receiving from a Komen grant and abortion is not the reason for this increased support.  The mixture of politics and emotional issues such as breast cancer is a volatile one, so we cannot allow the controversy over abortion to take away financial resources that could save lives.  We can prove to Congress and to the Komen Foundation that we will do what they will not.

I don’t know if Nancy Brinker did the right thing.  If the Komen Foundation cannot support organizations under investigation and if our Congress is currently investigating Planned Parenthood for misdirection of funds, then it seems obvious that Komen has the right to withdraw funds, even temporarily, until the issue is resolved.  But for women to withdraw support for Komen and refuse to buy pink or participate in walks as many women are now threatening to do is to miss the core of the issue.  Women die of breast cancer.   We cannot allow any woman to die because she could not afford a mammogram or treatment.

I hope women will continue to support women diagnosed with breast cancer in any way they can, put aside political issues, and reach out in any way their hearts tell them to.  I am not planning to withdraw my support for Komen at this time, although I will continue to keep up with developments as they occur.  Perhaps the Komen Foundation will reverse its decision in the coming weeks.  My sister supported the Komen Foundation and if she were alive today, I believe she would continue that support because I know for her the only thing that matters is life.

Should we support the movement for a bald Barbie doll?

When I started my blog a year ago, my intention was to post some of my poetry and writing about nature.  I didn’t want my blog to become a platform for my opinions.  There are already plenty of those.  However, this morning’s story about the Facebook movement to create a bald Barbie has affected me so deeply that I just can’t refrain from using today’s blog to express my thoughts on this movement.

As an eight-year breast cancer survivor, I usually support any movement that would encourage people to contribute money for cancer research.  The problem so far is that no matter how much money is contributed, there is still no cure for cancer.  Over thirty-nine thousand women died in  2011 from breast cancer, and 13, 500 children are diagnosed with cancer every year.

I’m not a fan of the Barbie doll.  I admit I bought Barbie dolls for my girls when they were pre-teens.  At that time, body image for girls was not such a major concern as it is today with the emphasis on childhood obesity.  We want our girls to grow up with a positive body image, but we don’t want them to believe that the ideal body image is that of a Barbie doll.  My six-year-old granddaughter has an athletic build.  She plays soccer, takes classes in dance and karate, and is active and beautiful.  However, she recently has expressed concern that she is fat.  Her arms are fat, she claims, and her clothes feel tight.  We cannot take a chance on our children being affected by dolls with a so-called “perfect” body or a doll that is bald because of cancer.

I hope we will all continue to contribute to cancer research.  I don’t see how we could not be aware of the need, and I don’t see why we need a Barbie doll to remind us that children get cancer, lose their hair, and fight for their lives.  I am sure that the bald Barbie will not then grow her hair back like a child will.  Will children with cancer fear they will always be bald even if they are told they will not be?  Will the bald Barbie on their shelf remind them long after their cancer battle has been won of a time that was frightening for them?

Let’s contribute to cancer research without always buying a product.  Let’s visit children in hospitals, hug them, bring them a soft, comforting toy, and reassure them that their hair loss is temporary and they will soon be well again.

I know this is not a black and white issue, and I sympathize with mothers of children with cancer.  I too wish we could comfort children in as many ways as we can, and the idea of a comforting doll makes sense to me. But as a mother and grandmother who has reservations about the Barbie doll’s affect on body image, I’d like to see us find ways to directly contribute to cancer research without having to buy one more product  to do it.  Let’s offer children our love and hope for their future in a more positive way.

(I am still working on changing the theme for my blog, and one I like is PinkTouch 2 which I am trying today.  I think the pink color is appropriate for this blog, but I have others I like also.  I like change, so bear with me as my blog’s appearance may change again.)

http://www.boston.com/lifestyle/health/articles/2012/01/11/after_cancer_hit_women_lobbied_for_a_bald_barbie/

Infinite Hope

“We must accept finite disappointment, but never lose infinite hope.”
— Martin Luther King

Today dawned cold and dark, but the sun broke through by 8 a.m. and the 4 degrees outside didn’t seem quite as frigid.  An hour later I was on my way to my oncologist’s office for my six-month checkup.  I am always surprised by the sunshine on days like this, days when I expect gray and gloomy skies.  I am no longer fearful of these appointments as I once was, but I know a cancer patient can never be complacent about a recurrence.

My oncologist’s office was crowded today, much more so than usual.  I later was told it was because this was a short week due to the holiday.  I filled out the usual health update form and sat back to wait and watch.  I try not to observe the other patients too closely, but I can’t seem to help myself.  Most patients were with someone, a husband or wife or relative.  Several were there for their chemotherapy sessions. They looked gaunt and gray and wore winter hats or baseball caps.  They were taken into the chemotherapy area separate from the lab area or examining rooms.

I overheard a conversation between two couples who had obviously come to know each other over the months.  An older man provided an update to the other couple.  He would be going to Memorial Sloan-Kettering for further treatment.  That is never a good thing, since my sister also did that.  But he seemed upbeat, optimistic about this trip.  He would be living with relatives on Long Island, and he talked about this as though it were a vacation.

There was a couple sitting in the chairs across from me.  The man sat slightly doubled over, looking at the floor the whole time.  The woman had her i-phone in her hand and was playing games while they waited.  After a while, she put the phone away, looked at the man, lightly touched him on the arm, but neither one of them spoke a single word the whole time.

While I was waiting for the doctor in the examining room, I could hear conversations in other rooms.  Just bits and pieces of conversation I really didn’t want to hear.  One man was asking about pain, and the doctor discussed with him options of increasing Percocet and morphine.  I tried to imagine what it would be like to have pain every day that could only be relieved by high-powered pain killers.  I remember how my sister struggled with pain, especially toward the end.

My own exam went well.  I was even told I no longer needed to come in every six months.  I had graduated to a yearly exam.  Good news in a way, but there is always a level of insecurity that comes with these new steps toward total recovery.

After a stop at the lab for blood work, I made my way back out to the waiting room, now even more crowded with cancer patients in a variety of headgear, using canes for balance and assistance walking.  I made my appointment and left, feeling both relief and guilt.  I was in good shape.  Maybe a few others in the room were also.  Maybe they too had completed treatment.  But most were in the process of treatment and my wish for them was that within a short time, they would be where I am now, needing only yearly appointments, and appreciating life in this new year that offers to us all so much promise, so much hope.