Thursday, October 24, 2013

Look Good ... Feel Better?

I finished chemo last week. By some minor miracle, I still have a respectable collection of intact eyelashes – almost 20 on the bottom of each eye and too many to count on top, according to Brian. Likewise with my eyebrows. I wish I could say the same for the friendly flora in my gut, which seem to have taken a beating, but I figure in about ten days I’ll be clear of residual toxins, if not entirely over their effects. Here’s hoping I’ll also be clean of cancer – the surgeon plans to cut it out in five days.  

I never did break into the make-up haul I scored at a free Look Good … Feel Better® workshop I attended in July. I thought it would offer tips or encouragement for dealing with hair loss and keeping skin healthy through chemotherapy and radiation. There was some of that, but mostly we just went through our goodie bags and put on make-up under the guidance of a 60-something esthetician who volunteers on the side to help women like me.

When we signed up for the class, we checked Fair, Medium or Dark for our complexion. Our friendly esthetician doled out big magenta bags to each of us, and as we rifled through them it became apparent that our bags were assembled with whatever surpluses donor companies had on hand. My Medium bag contained different types and shades of make-up than the other Medium women’s bags. We did a little trading, and tried to help the Fair woman, whose bag didn’t seem to contain anything light enough.

I had figured that without hair, I’d really need make-up, but it turned out to be the opposite. I don’t doubt that looking good helps one feel better, but I’m not convinced that make-up improves anything on a bald woman, at least not when that bald woman is me. Hair – especially my dark, thick hair – tends to conceal, shade and distract from a face, and make-up can bring the face into balance. Without hair, I’m all face. Make-up would look garish. I’d feel like a clown or a guy in drag or a 90-year-old woman trying to make up for some perceived deficit.[i]   

So for me, the best part of Look Good … Feel Better® was meeting the four other participants, all of whom were currently on chemotherapy. None of us knew each other. Two were probably in their 70s and both wore short, coiffed wigs they said looked like their real hair. The other women were in their 30s, and each had three children and found a breast lump during or shortly after the third pregnancy. One wore a hat over a scarf and looked beautiful. Of course, she was 32, which helps. The other had had three chemotherapy treatments and her hair was thinning but still passable; I had started chemo but hadn’t yet lost my hair.   

The older women seemed exhausted, mentally and spiritually. One carried the burden of stage 4 breast cancer and was grappling with the twin demons of death and regret: regret that she had ducked chemotherapy when her stage 1 cancer was diagnosed and treated. She was told there was a 2-3 percent chance of recurrence if she opted for hormone therapy, and a 2-3 percent chance of recurrence if she did chemo; logically, she opted against chemo, but she now wonders if that would have prevented her cancer from metastasizing to the bones two years later.

Now she’s on “maintenance” chemotherapy and living with pain, fear and the everyday presence of death. Dying while living, living while dying -- the two are intertwined with stage 4 breast cancer, which at present can’t be cured but only managed to mitigate pain and prolong life to varying and largely unpredictable degrees. National Cancer Institute statistics give people diagnosed with stage 4 breast cancer a 15 percent 5-year survival rate. While most undoubtedly experience at least intermittent joy and fulfillment, for many it is a slog through a swamp of horrors toward an inexorable death.

This may sound bleak, but there is a vast chasm between stage 3 breast cancer – which can, with luck, be vanquished permanently – and stage 4 breast cancer, which cannot. Once cancer is in the bones, modern medicine has no way of eradicating it. Ongoing or maintenance chemo is to my mind worthy of outlaw by the Geneva Convention. I can only admire the people -- like a vivacious woman on one of Brian’s photo safari tours this summer – who find a way to embrace the life they’re living. Brian texted me a picture of her bald smiling face with warm words of encouragement about living fully.  

But I digress. Back to Look Good … Feel Better.® Older Woman #1 was not feeling vivacious and I was moved by the depth of her sadness. Older Woman #2 was just worn out. Her cancer was not metastatic, but chemotherapy was raining the ten plagues on her; she was tired, sick, depleted. I thought of a friend in his 70s who was diagnosed with a slow-growing cancer a few years ago and chose to forego chemotherapy. He said he looked around his retirement community, where there’s a lot of cancer, and concluded that most people on chemo never really recovered from the ravages of the treatment, even if they recovered from their cancer.   

The three younger women at the workshop, if I include myself, were having an easier time of things. I believe the distraction and immediate demands of raising children help us mentally and spiritually – they give us something to cling to, something to live for, something to worry about besides ourselves. We are also physically better armed to withstand the chemical-weapons assault that is chemotherapy.

I will probably end up tossing the makeup I garnered at the workshop, but I will keep the insights. I looked into the pained eyes of stage 4 cancer and saw the misery aggressive chemotherapy can bestow on older patients. I was inspired by the two mothers-of-three who smiled like Mother Theresa throughout the workshop, who laughed and joked, who thanked the presenter warmly despite the fact that she was 30 minutes late, despite the fact that our makeup bags were a hodgepodge of cast-offs[ii], despite the fact that they had stage 3 breast cancer.

I haven’t seen the women at the workshop since then. It was enough to cross paths for 90 minutes of our lives, to voice the truth about our experiences while penciling in eyebrows, to touch each other with our stories and our shared humanity.   

[i] Plus, I’m not sure make-up is that great for people on chemo. The make-up we were given is conventional stock replete with lord-knows-what chemicals. And I sometimes wonder if my eyelashes hung on because I didn’t harass them with fake-eyelash glue or mascara as the authors of You Can Do This! Surviving Breast Cancer without Losing Your Sanity or Your Style did. I couldn’t relate to most of that book, which was given to me by a social worker at Dana Farber Cancer Institute in Boston. Mostly the book made me feel like I could never live in lower 48 again – I just don’t care enough about clothes, cars and cosmetics.  

[ii] I don’t want to denigrate their contributions, but will point out that the big cosmetic corporations that donate to Look Good … Feel Better® no doubt understand how to play the tax deduction game. They also know how to play the distraction game – being cancer heroes helps stave off questions about the cosmetic industry’s contributions to rising toxins in our air, water and homes, as well as the link between such toxins and cancer. But that is a subject for another day.  

Rosie at the pumpkin patch, October 12
flowers and coins for John, October 12 
Alder with Leo from Juneau and Jerry from Bainbridge--all in high spirits!

Pumpkin minions. Bainbridge people take Halloween seriously!

Last taxol infusion! October 16.

"Running" earlier today. Probably little faster than speed-walking. 

Saturday, October 12, 2013

"How are you?" ... Stressors and gifts of friendship

I’ve been corresponding with a friend who, like me, experienced traumatic loss. When she returned to her church, she said, people gave her forlorn looks and asked, "How are you doing?" While everyone meant well, it was stressful. Finally, someone came up to her with a smile and said, “We’re so glad you’re here.” That felt better.    

I can relate, I told her. Not long after John died, I was invited to a holiday party. I wanted to go – I wanted to be surrounded by warm laughter and smiles, to soak in the good energy. But I dreaded the pitying looks and meaningful “How are yous.” 

Finally, I got a marker and an 8.5” by 11” piece and wrote, “I’m ok, thanks! Can we talk about you?” I taped the paper to my chest and went to the party.  

It worked. I saw people catch my eye, begin to assume crestfallen demeanor, then take in the sign and – smile! I had an evening of laughter and escape, and didn’t have to talk about myself.  

One of my mother’s key pieces of parenting advice, especially for adolescents, is: make statements, don’t ask questions. I find this nugget of wisdom applies to approaching people in any kind of crisis (adolescence is one long crisis, right?). Even a question as seemingly benign as “How are you” places a demand. To respond, one has to find honest but succinct words for a bewildering array of emotions -- or deftly deflect the question, or lie. None of which is stress-free. By contrast, “It’s nice to see you,” and a hug or a smile, gives something and demands nothing.

When I was diagnosed with breast cancer in June, I knew from experience that I wanted to deflect questions before they came my way.  The potential for questions was limitless: How did you find out? How big is it? How bad is it? Do you have to get chemo? What did the doctors say? What’s the prognosis? When will you start treatment? Where are you getting treatment?

I didn’t know the answers to most of the questions myself, and hearing them over and over was the last thing I needed. I wanted to put my limited energy and resources into learning about the disease and making good decisions, giving my children the time and attention they needed, and keeping my body and spirit strong.  

I thought of a small gift from my friend Sarah Conarro, a print she'd made depicting two hands, palms up, and the words, “Ask for what you need.” The words echoed in my mind as I began sharing the news of my diagnosis – in writing, where I could slow the dialog. I asked for people to refrain from asking me any questions.I'm glad I asked, and I'm grateful people were so respectful of the request. 

So what can a person do to help a friend in crisis? I don’t have any brilliant ideas, but I have experienced remarkable and sustained gifts of friendship and kindness over the past three years, which form the inspiration for the following list.

How to be a Great Friend to Someone in Need

  • Check in periodically with a note or text or call or card or visit, depending on that person’s preferred mode(s) of contact. Follow their lead when it comes to talking about the heavy stuff.
  • Just listen openly -- don’t feel you have to offer any wisdom, reassurance or judgment. 
  • Distract them with a story, a joke, a little project, a game of cards, a walk or a run. You don’t have to be sad or serious. Give them a little break from sadness.
  • Bring some food, preferably in a disposable dish so they don’t have to worry about returning it (or return to pick up your dish and check in again). A three-course meal or a chocolate bar, it's all good.
  • Instead of asking, “What can I do to help?” (another bewildering question! Plus it’s so hard to ask for help) try to observe what they need and figure out where you can help -- without overtaxing yourself. Pick up their child at daycare; replace the broken headlight on their car; do some of the kid-shlepping; bring dinner every Friday; set up dates to meet at the gym; do after-school art projects with their child; help them plant a garden; drop off hand-me-downs … 
  • Allow them to care for you, too. It gives them an opportunity to get out of their own world and to feel needed.  
  • Be there for the long haul. Death, disease, divorce – the practical and emotional repercussions of these crises can last a long, long time. I remember telling a friend early on, “It’s a marathon, not a sprint.” That has proven true.
On the third anniversary of John's death, I'm thinking about how much he would want to repay the kindness that has been showered on his family. Of course, he paid it forward, instinctively and without expectation of reward. I'm grateful for all the gifts he gave and for the chain of giving he has inspired.

Rosie with her Ripstick -- I can't even stand on it but she seems to have mastered it in four days.

Excited to be together.

Ninety minutes and 65 pages of instructions later, Alder had assembled the Lego space shuttle Rosie brought him. He has now been alive longer without John than with him.
Sibling love.

Wallace Falls, reached last weekend by a crowded but beautiful trail.

Thursday, October 3, 2013

Genes, breasts and tests

In July I met with a genetic counselor; it was a hoop I had to jump through in order to get genetic testing. I figured I had learned what I needed to know from the pamphlet, “Your Jewish Genes: Hereditary Breast Cancer and Ovarian Cancer,”[i] which I found in my oncologist’s waiting area.   

But no! Bob Resta was a fast-talking, information-dense fount of facts[ii]. My attorney friend Layla and my physician father happened to be with me, and we were all fascinated, so I thought I’d share some of what we learned as I decimated Mr. Resta's bowl of Dove chocolate and madly scribbled in my notebook.[iii]

American women as a whole have a 12 percent lifetime risk of breast cancer. Ninety percent of breast cancer cases do not have an obvious genetic component. There are six genes known to cause breast cancer, at least four of which he said I clearly did not have. Some 30 percent of women who have a breast cancer gene don’t have a family history of breast cancer.

Resta felt it was worth testing me for BRCA1 and BRCA2, two of the better-known breast cancer genes. The odds of a person on the street having a cancer-carrying BRCA gene mutation are about one in 1,000. The chances of an Ashkenazi Jew[iv] having the gene are one in 40. The chances of an Ashkenazi Jew with breast cancer under age 50, with no family history –e.g., me – carrying the gene are one in 10. Striking, no doubt, but it also means there was a 90 percent chance I didn’t have the gene.

One reason to test for BRCA is that it has bearing on treatment decisions. A BRCA-positive woman with breast cancer has a 40 to 50 percent chance of developing breast cancer in the other breast, as opposed to a 5 percent chance without the gene. Presence of a BRCA gene also elevates the risk that a woman with breast cancer will develop ovarian cancer, from 2 percent without the gene to 20-40 percent with the gene. Hence many women with the gene opt for a double mastectomy, oophorectomy and fallopian tube removal, which reduce the chance of developing new cancers. But frankly, the prognosis is poorer with the gene, though like everyone else I have encountered at Swedish, Resta did not talk about prognosis.

There are also implications for one’s children, who have a 50 percent chance of inheriting the mutation, assuming only one parent has it. While the risk for one’s daughters is obvious, BRCA2 in particular increases the risk of male breast and prostate cancer. Children generally aren’t tested before their mid-20s, and face difficult choices if they have the gene.

Interestingly, Resta said, while most women with the gene opt for double mastectomy, overall survival is the same for those who don’t. But the pathway to survival is different for those who leave the second breast, involving frequent screening and, if and when cancer is detected, aggressive treatment. Most women at high risk of a second breast cancer don’t want to go through it again and have their surgeon cut ‘em both off. I’ve met many without the breast cancer gene who opt for double mastectomy, so traumatized are they by the cancer diagnosis and treatment, and so alienated from their breasts as anything but fear-inducing harbors of potential disease.

Resta told me there were three possible results of genetic testing:
-yes: I have one of the known breast cancer genes;
-no: I don’t have a known breast cancer gene, though it’s always possible I have one that hasn’t been identified; or
-maybe: I have a rare mutation on the BRCA1 or BRCA 2 gene but it’s unknown whether the particular mutation is a “good guy,” a “bad guy” or a benign variant.

I decided to order the Ashkenazi panel, a limited and less costly test of the genes I’m most likely to have. My insurance said it would spring for the $600.

I also learned that I could have my DNA banked for $200. This means my DNA will be stored and can be tested as researchers identify additional genes. According to Mr. Resta, the 2008 federal GINA (which refers to the Genetic Information Nondiscrimination Act, not a female body part) says health insurers can’t use genetic information as a preexisting condition; such protections do not apply to life insurance or disability insurance. Resta suggested that if I bank my DNA, I specify in my will who can and cannot access my genetic information.

I was pretty convinced I didn’t have a breast cancer gene. My family’s longevity is legendary – my dad’s cousin Bob, whose mother lived to 105, used to threaten to take up chain-smoking at 80. (He turned 80 a few years ago and instead of smoking, he runs his hobby farm.) My grandmother and her four sisters, and my mother and her two sisters and their many female cousins and nieces were and are vivacious, long-lived and almost uncannily cancer-free. My dad’s family tree was disrupted when he and his parents fled Austria in 1938, but we’ve stayed in contact with most of the surviving family. There are fewer females in the lineage, but again zero cancer history.

So I was not surprised when the results of the Ashkenazi panel and the general panel I subsequently ordered came back negative. For the sake of my children’s privacy and emotional wellbeing, I would not have written this post or divulged the results otherwise; it’s enough stress to have your mother get cancer without growing up knowing you are at increased risk as well. While my results came as a relief, the process filled me with compassion about the added fears and decisions those with the gene face.  

[i] It’s produced by Sharsheret, a nonprofit organization. Here’s a link:
[ii] No doubt a Jew himself, with the hallmarks of the straight-shooting New York variety, he opened our interview with, “There are Jews in Alaska?” I was momentarily taken aback, having forgotten I’d answered yes to, “Are you of Ashkenazi Jewish descent?” on my intake questionnaire.
[iii] Layla and I both considered changing careers. That is, until we realized the market for genetic counseling in Juneau has to be pretty slim.  
[iv] Jews are generally divided into two ethnic groups: Ashkenazim are descended from Eastern Europe and Russia and comprise 75-85 percent of Jews worldwide. Sephardic Jews are of Arabic and North African descent.  

Alder ran 18 laps in 20 minutes at last week's jogathon PTO fundraiser. He loved it. The girl behind him is skipping.
Alder had a great time with Grandma Mary, especially playing "cardboard city."

Juneau in Bainbridge! Alder's dear friend Elias visited. Susu (daughter of the late and much-loved Bethany Bereman), who lives on Bainbridge with her dad, joined them on what sounds like a wild hayride.

Elias brought his mom, my dear friend Emily, with him. (It rained all weekend--we're in front of an indoor mural.)

My cousin Fran from Las Vegas brought thoughtful gifts and her loving self to the infusion room yesterday.

So shoot me, I posted another food photo: halibut (thank you, Kaelke family), mango-avaocado salad, black beans with butternut squash, brown basmati rice.