Sad, sad, sad

One of my Mom’s caregivers comes down to the kitchen in the morning, looking grave. In our household, we’re trying to re-enact the 1970s TV show, “The Waltons,” (if you don’t know the show, just think: big house, many generations, many people, money kind of tight). Our home encompasses three generations, two dogs, one cat and two lovely caregivers, sisters, who take care of my bedridden mother.

I’ve lived in households where there’s an “upstairs/downstairs” dynamic. Working on a book 20 years ago, I spent several months living in Hong Kong with the family of the Asia-Pacific chairman of Merrill Lynch. They had a cook, a housekeeper, a driver, a butler and a gardener. We’re not so grand. And because we’re American, we don’t like to acknowledge the divide between us and my mother’s caregivers. We tell them almost everything that’s going on; they tell us a little of their lives. Partly, I think this is because they grew up in the Philippines, a very stratified society. Partly, I think it’s because keeping a bit of yourself secret is a way to remain sane when your job is to parachute into someone else’s family and clean up after them.

But to the point: The older caregiver comes downstairs looking much more serious than usual. I think she is going to tell me something about my mother’s condition (mind, liver and kidneys failing, for years) or about my mother’s behavior (recalcitrant about bathing and taking her meds, for years). Instead, she says, “Heather, I think you should know, my sister is going to have an operation soon.”

“Oh, I’m so sorry!” I say. “What is it? Is it serious?”

The older sister nods, puts her hand to her breast.

“Breast cancer?!” I say.

The older sister nods again.

“Lumpectomy or mastectomy?”

“They’re going to take the whole thing. We just want to get rid of it. I’ve been telling her for months that she should check out that lump. But she said, ‘No, it’s nothing. It doesn’t hurt.’ Finally, she went in. And it’s cancer.”

My mind whirls. Before you get a diagnosis, there’s at least a month of worrying as you get follow-up mammograms, doctor check ups and biopsies. They’ve been carrying this weight around for weeks as they change my mothers diapers, bathe her, cajole her through her moods. My God.

I want to jump in, download the contents of my brain into theirs so that they have the information they need, I want to go to the doctors’ appointments so that I can ask questions for them. I want to make sure she has the best doctors. But I can sense this isn’t what they want. They want me to know; they want me to help. But they want to keep a little bit back.

Rapid-fire, I ask questions:
Stage of cancer? She’s not sure.
Kind of cancer? She’s not sure.
Reconstruction after mastectomy? No. It might be too expensive. Her insurance isn’t so good.
Will she have to have chemo? Definitely.
Radiation? She’s not sure.
What’s the name of the doctor? Not sure.
Name of the hospital? Not sure.
Does she have disability insurance? No.
How will you survive if she can’t work? I will support her.
Can your family help? (They have several siblings in the US.) I asked my older brother. He said no. We will just have to be strong.

Then the older caregiver asks, “Heather, do you think you could write down that information about the cap that saved your hair during chemo? I would like to get that for my sister. I want to do that for her. Also write down anything else you think we should know.”

I explain that the Dignicap was a clinical trial, and it’s not commonly available yet. But there’s a less high-tech system, I say, the Penguin Cap that is available to anyone who can afford it.

“It costs about $1,500 to $2,000 for a standard course of chemo,” I say. “If you’re already struggling, can you afford that?”

“I will do it,” the older sister says. “I want that to be my gift to her. We just have to be strong.”

I write up all my initial advice and hand it to her. She takes it, and thanks me far more than I deserve.

As she goes upstairs, I wish I could do so much more. And I’m sad, so sad, sad, sad.

I realize how blessed I was when I was in this stage: lots of friends who are doctors, lots of experience doing health reporting, tools to handle the fire-hose of information, a life experience that has taught me to ask questions and to go to the top when necessary, a “gold-plated” insurance policy.

My Mom’s caregivers are college-educated. They’re smart women, just unlucky to be born in a society where class divides are almost un-breachable. They’re used to getting the short end of the stick. They don’t make trouble. They don’t expect much. Otherwise, why would they be willing to wipe my mother’s bottom and all the rest? They hold doctors, any doctor, in such high esteem that they’re likely to accept the judgment of the doctor, any doctor. And, while they’re frugal and hard working and own a condo together, they don’t have tons of money. They don’t have good insurance.

I stand by the coffee maker, feeling helpless. How privileged my breast cancer experience really was. I got to keep my hair, for God’s sake! I had friends who immediately put me in touch with the best docs in San Francisco. The insurance company paid about $500,000 to save my life. My co-pay was about $1,000. How awful it is that the usual breast cancer experience is much more like what my mother’s caregiver is experiencing.

I hate that. I hate that anyone has to be in the breast cancer pipeline behind me.

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About leftbreast

I have had breast cancer. I was diagnosed at 47, and am now 49. I have finished "active treatment," two surgeries, chemo, radiation, monoclonal antibodies. These days, I only take a drug to suppress my uptake of estrogen, since my tumor was highly reactive to that hormone. I have been married to my husband Pete for 21 years. I have a stepdaughter, Maureen, 30, and a daughter, Erin, 10. I've been a freelance magazine journalist for 20-plus years, covering everything from Chinese foreign policy to Catholic nuns to endangered species. I have had a great life. I have lived in Asia and all over the United States. I have spent nights with tree-sitters in Oregon and with astronomers at the Mauna Kea observatory in Hawaii. I've been to a cocktail party on the poopdeck of a British destroyer docked in Shanghai. I've taken the bus to Tibet, and tramped through the cloud forests of Panama with biologists. A magazine sent me on a raft trip down the Colorado through the Grand Canyon; another sent me to cooking school for a week. I have spent time with celebrities, presidents and heroin dealers. I love my work. I have a loving, supportive family and more friends than I probably deserve. I have had the space and time to camp, ski, cycle, garden, cook and spoil my pets (an Australian shepherd, a German shepherd and a tabby cat). If it all ended tomorrow, I would have to say that it has been a really, really good ride. When I was in thick of treatment, I was simply fighting for more time. Now, I'm trying to connect the experience of cancer with the rest of my life, with the time that's been won. I hope the cancer never comes back, but if it does, I'll be ready. That's what this blog is about.
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6 Responses to Sad, sad, sad

  1. Heather: Thanks for sharing this story. It is indeed sad, but it also makes me angry. Angry that I live in a country that values human life based on your socioeconomic status. Your caregiver deserves the same good health care that you and I enjoy. Why is health care a privilege for the rich instead of basic human right?

  2. Person says:

    I’m terribly sorry to hear about another woman on her way through cancer treatment. I just finished up ten days ago. If your mom’s caregiver is interested, I have six Elasto-Gel caps that I would be happy to give away. They might not work quite as well as Penguin caps, but I bought them because they were less expensive. They successfully kept a good deal of my hair on my head through my 3rd chemo cycle / until I decided I could not bear the hypothermia and the dainty hair maintenance through the five months of treatment.

    I’m in SF and could hand them over directly, or mail them where needed. I can be reached at the address associated with this post.

  3. That is very sad, but how lucky for them that they have you to help them navigate all that they will have to over the next few months. Please let us know how she is doing and I’ll keep her in my thoughts and prayers.

  4. Cat says:

    Heather,
    I am so sorry. It is a helpless feeling when someone you care about is diagnosed with cancer, the same cancer you had–and you know what they are going to go through, and the best you can do is give them the benefit of your experience, and all the love and support you can provide. I know you will be an invaluable friend to these sisters as they navigate the awful (yet life-saving) world of cancer treatment. Prayers for all of you.

  5. Lee Ann says:

    Heather — This will be hard all over again. But how fortunate that they have seen your journey through this, and that you have come through well and vibrant and strong. Perhaps that will help just a little with some of the fear. My prayers and thoughts will be with them, and with you.

  6. daliwest says:

    Hello,

    I wonder how your experiences of using the dignicap are? Do you think it will be approved in USA?

    This blog was really interesting to read and I believe it helps many readers to see that life is not over when you face sad and bad news.

    Keep up the good work!

    Sincerely
    Dali West

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