Archive for October, 2013

posted by Amy on Oct 29

It was holiday season–Thanksgiving or Christmas. In the checkout line at Whole Foods my eye fell on a magazine called “Spirituality and Health.” I bought it. Inside was an article about groups that knit “prayer shawls” and give them to people who are experiencing hardships. I liked what it said about how the sound of the needles clicking could be meditative. Soon I bought the yarn and needles that I’d need to make one.

I cooked up a plan to make one for my children’s grandmother (my former mother-in-law.) I’d have each of my five kids knit part of it. Luckily, everyone was home for Christmas. And, because they love her, everyone did at least a few stitches after some quick knitting lessons.

Then came the news that a friend from church, Kathy Burrows, had been diagnosed with metastatic breast cancer a few years after her initial diagnosis and treatment. I was almost done with the shawl, and I decided to give it to her. She knew my kids, and I thought she’d like knowing they had all helped make the shawl. One of my daughters helped me pick out new yarn, and I got to work on a second prayer shawl. Mom appreciated the story about how I gave the first one to Kathy.

The pattern for the shawls is simple: Knit 3, Purl 3. It’s easy to recite psalms or prayers while knitting. I pray or sing hymns while I knit. Anyway, sometimes I do. To be honest, most of the time I let the knitting be the prayer practice by itself. The finished shawl is large–finger tip to finger tip, and about 30 inches wide. The ends are fringed.

I’ve made a lot of shawls. I gave one to my sister, and she promptly lost it. I haven’t gotten around to making her another one. I made a purple one for a long-time friend. I made one during the weeks that, via email, I shared another friend’s experience of his mother’s slow death from cancer. It was finished before she died. I gave it to him the next time I saw him. For that one, I did do a lot of intentional praying. I made one for my brother when I found out he had metastatic lymphoma. Fortunately, that got to him before he died. Oh, and I did make one for myself. I keep it draped over a living room chair.

I made one for a friend whose husband of many years simply decided he no longer wanted to be married anymore. No discussion, no negotiation, just out of there. She told me more than once that she cherished it, even sleeping with it wrapped around her.

The article had a prayer to go with the shawl. Over time I’ve modified it to be nonsectarian but (I hope) still comforting. I print it out and include it with shawls I mail out.

Last February a friend told me about “pocket prayer shawls,” and I made a bunch of them from thin yarn remnants. They’re about 2 inches by 3 inches. You can form a cross shape with alternating blocks of stockinette stitch. I also made some with seed stitch, and a few with the knit 3, purl 3 pattern of the full-sized prayer shawls.

A week ago yesterday, Marilyn came to our support group. She had started on a last-ditch treatment, hoping it would buy her more time. It was such a blessing to see her. Our hour together in the group was amazing; unlike anything else I’ve ever experienced. We were simultaneously crying and laughing, grieving and rejoicing. Marilyn said she’d be back. I gave her a pocket prayer shawl. It was purple, made out of “silk bamboo” yarn, in seed stitch. She tucked it away into her purse. We posed for pictures. She looked thin and frail, but her beautiful smile lit up her face. It was holy.

Friday we learned that Marilyn had died early that morning. Her funeral was Sunday. Four of us from the group sat together near the front. Another member sat farther back with her husband. Hester couldn’t be there, because she was out of town, but yesterday we filled her in on all the details.

It’s still fresh–the grief and sadness over losing Marilyn, as well as the realization that I am on the same path (though I have no idea how long it will be before my time comes.) Since Sunday I’ve been trying to catch up on school work, but mostly all I want to do is knit.

posted by Amy on Oct 12

It’s National Breast Cancer Awareness month. I don’t always blog about cancer, and I usually try not to mention it at all in October because (a) other people are doing a fine job of talking about breast cancer, and especially about “Pinktober” (for example: herehere, here, herehere, and here) and (b) I think everyone is already “aware” of breast cancer, and I don’t want to enable the commercialization of a public health issue and the commodification of women. I put “aware” in quotes because what people think they know about breast cancer is usually wrong. Here is a concise summary of true things about breast cancer that you wouldn’t know if all you did was take in what “Big Pink” tells you. There’s more, but that’s a good start.

But it’s getting personal. I belong to a support group for women with metastatic cancer that meets every Monday at Beth Israel Deaconess Hospital in Boston. Our group leader, Hester Hill Schnipper, is a treasure. She’s been doing this for over 20 years, and she’s known a lot of women who died. Her skill in leading the group, her perspectives on the emotional and social aspects of living with metastatic cancer, and the relationships we form in the group, make it much easier to live in cancerland.

Stage 4 support groups are rare. Also, not very many of the women who could be part of the group choose to do so. The ones who do show up regularly seem to share a feisty/realistic attitude toward their disease. We know we’re not very likely to escape the gravitational pull of cancer; that sooner or later we will run out of options, stop treatment, and face death. But in the meantime we have things to do, people to love (including each other), information to share, gifts to give, and thoughts to express. In addition to that group, I belong to an online support group for people with my particular subtype of breast cancer. That group has members at all stages, but whereas many people diagnosed and treated at a lower stage can (and should) think in terms of getting back to normal, a stage 4 diagnosis imposes a weird, dreamlike “new normal.” They are the ones with whom I have the most in common.

It’s one thing to say, “I understand my chances of living long enough to die of something else are not good,” and quite another to have the true meaning of “end stage” continually slap you in the face. People I care about have been dying lately. It hurts. It’s hard. I miss them. I ache for their families. And I really don’t like having my defenses breached time and time again. Most of the time I really can live joyfully or at least busily in the moment, and not think too much about how this is going to turn out for me and the ones who will be left behind when I die. But watching cancer keep claiming lives of people who matter to me makes that impossible.

I don’t know what else to do except talk a bit about two of the unique, irreplaceable, funny, good, kind, smart, feisty women who have come into my life for no other reason than our common medical condition and who are now past the “treatment” phase.

First there’s Marilyn, who has been a fixture in my in-person group as long as I’ve been a member. She brings a breath of fresh air and sparks of energy with her every time she walks into a room. She was getting tired, from both the cancer and treatment, so she got a prescription for stimulants, and she called them “supplements.” That always made me laugh. She knew full well it was speed, not vitamins. She wore outlandish but always stylish outfits–cowgirl boots, mini skirts, a magenta wig, hats, jackets. I never knew her before she had cancer, but I think it was a not-so-subtle message: “Look at me. I’m here. I’m alive. I’m not dead yet.” Some people don’t know what to say to someone with a terminal illness, or don’t want to deal with that reality, so they fade away, or they act like you’re not there. It’s impossible to do that with Marilyn.

But she’s dying now. She went through the drill for 10 years after her cancer metastasized, but finally nothing worked anymore and she had to stop treatment. She was in the ICU for four or five days, but went home Wednesday. Hester sent us an email saying she saw Marilyn and her husband, and that Marilyn looked and sounded like her normal self, including her sense of humor. I would like to have seen that. Hester gave us Marilyn’s address and invited us to write to her. Yesterday I spent three hours coloring a mandala for her, and I mailed it with a letter saying a bit about what she means to me, and obliquely saying goodbye.

This morning I logged on to my online support group and learned that “Mandamoo” had died. Oh, man. That’s really hard. She had three little kids. Her cancer progressed from stage 3 to stage 4 while she was being treated for stage 3. Nothing ever worked very well, or very long, for her. She lived in Australia. She was thoughtful, kind, supportive, and smart. She was diagnosed at about the same time I was. She stopped treatment in late September, and she’s already gone. She was 41. Her last post was in response to a member who staunchly insists that we “make our own reality.” Here’s what she said, on September 25:

Andi

So many of those words in your prayer have been said by me over the past 2-3 years. I have always known I would get better.

Today the doctors told me there is nothing more that can be done by them apart from making me comfortable. The chemo which I have been determined would work (number 9) hasn’t helped as the disease has continued to take over my lungs now resulting in quite severe symptoms.

I have not caused this to happen. I have pursued TCM and acupuncture, changed my diet, upped my exercise even to swimming ocean races. I have worked with a spiritual healer and metaphysical counselor, I meditate regularly.. I have lived and loved fully, always believing I would be a miracle survivor.

 I do believe thoughts have an impact and I have had a wonderful 41 years but it is not enough. I will not give up my knowing unless I can know no more.

I haven’t been on the forum recently, and I missed seeing that. I wish I could have said goodbye to her.

There are so many others, but this is getting long. I’ll name the ones in my in-person group who are no longer with us in body: Lynn, Mary, Joyce, and Pam. And some of the online friends who have died: Chris, Jessica, Pam, Brenda, Amanda.

Goodbye, friends. I’m glad we met, though not glad about the circumstances, and so sorry your voices have been stilled. I’ll speak for you as long as I can.

 

 

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