Posts Tagged ‘courage’

Shehecheyanu

06.16.2013

The Shehecheyanu blessing (Hebrew: שהחינו‎, “Who has given us life”) is a common Jewish prayer said to celebrate special occasions. It is said to be thankful for new and unusual experiences.[1] The blessing has been recited by Jews for nearly 2000 years. It comes from the Talmud. — from Wikipedia

During the six months in between my diagnosis in September 2009 and the day I got re-staged after my mastectomies in March 2010, I pondered my mortality on an almost daily basis. My oncologist was never less than honest with me, so I knew the facts on the ground.

If the chemo didn’t work, my stage III aggressive cancer gave me a 10% chance of being alive in 5 years. We wouldn’t know how well it worked until they surgically removed the cancerous breast and did a pathology study of it.

When she gave me this dire news, one of the first dates I calculated was my eldest daughter’s bat mitzvah, about 3 1/2 years out.

I needed the chemo to work. If it didn’t, I very likely would not live to see that day. If, despite failed chemo, I managed to hit the outside range of the life expectancy and make it to that day, I would very likely be seriously ill: the mom doing a hora in a wheelchair.

When I suffered side effects, when I really felt like I could not continue after the allergic reaction in the 4th dose, when I thought I could not endure any more assaults to my poor system, I would think about these odds and how much I needed to change them, and I would climb back in the chemo chair and subject myself to another round of hell.

When my pathology report came back, I was re-staged as Stage I, dramatically changing my prognosis. My 6 cm tumor had melted away to less than 1 cm, giving me a 90% chance of living 5 years.

IMG_8094

Last weekend, I got to see the day that frequently preoccupied my heartbroken ponderings of my mortality and inspired me to persevere.

The prayer referred to at the start of this post, the shehecheyanu, is one that we say any time we feel gratitude for a moment, particularly for firsts.

I had been told by other parents that I would not believe the unbridled joy and pride of seeing my daughter through this first rite of passage.

Family

They were right. In addition to my awe for the young woman she is becoming, I felt like the day was one enormous shehecheyanu. I did not take my presence for granted. Alongside the joy and pride I felt in my daughter, my heart was overfull with gratitude. Throughout the weekend, the prayer would play like a soundtrack in my mind, bringing tears to my eyes.

Blessed are you, Lord our G-d, who has granted us life, sustained us, and enabled us to reach this occasion.

And to this I say, Amen.

 

 

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Posted in Survivorship | 12 Comments »

The Chatter About Jolie

05.19.2013

My bloggy friends have really hit some important notes about Angelina Jolie’s prophylactic bilateral mastectomies, a decision she made public in a recent editorial in the New York Times.

Jackie called out those who were judging her decision.

Marie wrote a good explainer about the BRCA gene and why its presence might lead to such a choice.

Nancy took up the issue of gene patenting and how the prohibitive cost of the BRCA test limits women’s choices.

Philippa reminded us of the stark global inequities in breast cancer care, telling some stories from Sri Lanka and Timor.

What could I possibly have to add?

angelina_jolie_13

Like my friends, I was asked by many to offer my opinion about Jolie’s choice. (I fully support it.) But since I have been hanging back on blogging, I was delighted to know so many smart and articulate people who cover the big issues when these Cultural Moments in Cancer happen.

Something struck me, though, amidst the media frenzy that has been less central to the ensuing conversation.

Women’s self-hating chatter about a radical surgery.

First there was a BRCA positive celebrity on an entertainment news program who talked about anticipating her prophylactic mastectomies. She told the interviewer laughingly:

It’s like a deluxe boob job!

Here is another exchange from a Facebook thread. Both women are educated –– Woman A is a doctor –– but the attitude is the same:

Woman A: I was tested!
Woman B: Were you really? It’s a little bit of a game changer once you realize you’re in any sort of high risk group, isn’t it?
Woman A: It was for me. I’m not willing to let a modifiable risk end my life. And, I’d have gotten new tatas…

 

Each time, my stomach dropped. This trivializes a body-altering operation.

I had a preventive mastectomy. A tumor presented in one breast, but I had to decide about whether to remove the healthy one as well. After genetic counseling, I was tested for the BRCA genes as well as a known mutation prevalent among Ashkenazi Jews. My genetic tests revealed no known genes, but the multifocal presentation of the tumor in my breast, my young age, and my ethnicity led four clinical oncologists to suspect some unknown genetic origin. Although I did not get a definitive risk like Jolie –– 87% is pretty clear cut in the medical world –– all these doctors recommended a prophylactic mastectomy.

I went ahead with the surgery. I got reconstruction, although mine was more complicated than Jolie’s because of the radiation I received as part of my treatment.

I have the new tatas that the women seem to joke about.

And you know what?

I really miss my old ones. We had a history together. I nursed three children with them. They fit my middle aged body. They felt much more than the ones I have now.

As I tend to do when something in CancerLand raises my ire, I posted the following on my Facebook page:

Just stop

As you can see, this got a lot of “likes.”

On that thread, somebody generously shared the following:

Immediately prior to formal diagnosis (i.e., after the lump was discovered but before the second biopsy), I found the idea of a “deluxe boob job” (and tummy tuck, woo hoo!) to be very comforting. When talking to friends, that’s how I framed it, because breast cancer was much easier to talk about in those terms.

I really appreciated this honesty. It gave me insight into this “boob job” framing.

And here is what it reveals about our culture and breast cancer:

It is more socially acceptable for us to dislike our bodies to the point of wanting to surgically alter them than it is to grieve the loss of identity and sensation that mastectomies require.

I notice that folks are not chatting as playfully about the oopherectomy (ovary removal) that Jolie plans to undergo. There is no soft-pedaling that operation. An oopherectomy means a sudden, surgical menopause. Friends of mine have described it, and it is not pretty. There is no femininity-preserving (or, to hear some women describe it, femininity-improving) reconstruction.

So my question is:
When women with ambiguous cancer risks undergo preventive mastectomies, how much does their own culturally acceptable body-loathing play into that “choice”? Can we call it a choice when there are obviously such strong messages that downplay the loss and pain and overplay the body improvement aspect of this surgery?

For information on genetic risks and breast and ovarian cancer, please visit FORCE: Facing Our Risk of Cancer Empowered.

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Posted in Treatment | 29 Comments »

Five years ago

11.23.2012

Five years ago today, my stepbrother died. I can’t believe so much time has gone by already. I am experiencing that strange tangled sense of time, where his death feels like a lifetime ago and just yesterday all at once.

I have been remembering that time by posting my emails to my friends from Jeremy’s final days. You can read two earlier posts here and here.

 
Dying is messy and confusing business.

So is caring for the dying. It is alternatively heart-wrenching, boring, arduous, graphic, and intimate.

I just got back from spending some time helping care for Jer.

Sometimes he was lucid, and we had really important conversations. We reflected on his life and our relationship. Sometimes he was slipping away, unable to communicate, not even to squeeze a hand to signal yes or no.

Yesterday morning, he was losing his ability to swallow, so I fed him honey water through a straw. Then last night, a couple of hours after I left in tears, he ate Thai food for dinner and called me to let me know how glad he was to see me. My parents tell me he was up late editing a video for Greenpeace on his computer.

Every day is different, and the events of one moment do not always help you predict the events of the next.

Caring for the dying involves so many parts of one’s self. At one moment, you’re talking to the hospice nurse, having to parse sentences like, “Phenergan potentiates opiates.”

Another moment, you are having to swing your brother’s swollen legs up onto the bed for the 15th time in an hour, because he keeps getting out of bed before realizing he’s too weak to stand, but he’s afraid of falling asleep and not waking up.

And in the best moments, you know that your song or your poem or your story — or just the warmth of your hand — is bringing a little bit of peace and comfort in the midst of a lot of anguish and pain.

I sang him lots of songs and read him poems on the restless time I spent on the night shift. In between we had conversations about what an amazing life he has had, how much he has done in the brief time he has had. There are people alive in Burma who would not be had it not been for him. There are forests that are preserved that would have been clearcut had it not been for him. He really seemed to enjoy these conversations and listening to the poems and songs.

Not surprisingly, this poem was his favorite:

UNTIL ONE IS COMMITTED

Until one is committed, there is hesitancy,
the chance to draw back,
always ineffectiveness.
Concerning all acts of initiative (and creation)
there is one elementary truth,
the ignorance of which kills countless ideas and splendid plans:
that the moment one definitely commits oneself, then Providence moves too.

All sorts of things occur
to help one that would never otherwise have occurred.
A whole stream of events issues from the decision,
raising in one’s favor all manner of unforeseen incidents and meetings and material assistance,
which no man could have dreamed would come his way.

Whatever you can do,
or dream you can, begin it.
Boldness has genius,
power and magic in it.
____

I miss you, Brother. I try to live my life in a way that honors yours.

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Posted in End of Life | 1 Comment »

Nearing the End, Part 2

11.04.2012

This is the second of three posts I will share from the time when my stepbrother’s life was coming to a close. (The first is here.) I wrote them for concerned friends via an email list. As I process my own cancer experience, I am struck by how deeply Jeremy’s story has shaped my own. This season brings back many memories from this time, so I am posting them  here.

When we were kids, we would sometimes go out exploring in the woods. Jeremy used to always lead the way and had a kind of fearlessness when we were confronted by an obstacle in our path. He’d be the first to find a way to cross a stream, scale a rock, find a route through a canyon when a trail came to an end. We’d stand by and watch, in awe and fear, and then we’d follow.

I am having a bit of that feeling now, as Jeremy blazes the trail toward death, a place we all must eventually go. While before he showed me how to pick out the rocks that made a trail  across a stream, now he’s showing me how to end your days with love and courage.

I spoke with my sister today, and she was ending a visit with Jeremy in the hospital. She told me about the way Jer had charmed the nurses to get them agree to an in-hospital visit from his beloved dog, Rusty.

A friend of Jer’s had also treated them to an hour-long cello concert in the room. The best friend with the RV has changed roles, moving from chauffeur to social secretary with aplomb, keeping Jeremy from becoming overwhelmed by the many visitors who want to see him, literally scheduling the visitors in different timeslots.

The Rainforest Action Network, a group Jer has worked with over the years, has a big annual banquet on Thursday, and they are instituting a new award to acknowledge people for their contributions in helping people use forests responsibly. Jeremy will be the first recipient of this award. I’m sure it’s in no small part to his last Greenpeace campaign, with the cheeky slogan Love Your Wood. Jer negotiated with some major manufacturers to get them to use sustainable wood in the creation of their musical instruments.

Jer goes into surgery on Tuesday to remove the tumor on his T9 vertebra that is threatening to paralyze him and to get his intrathecal pump installed. Needless to say, we’re a little concerned about how he will handle the procedure. But it’s his decision and it’s his life, and this is what he wants to do. It’s just for us to stand back, hold our breath, and watch him go forward.

I’m making another batch of what I now think of as Jeremy’s granola. It’s good. Try it if you want.

[This was one of the only things he would eat in his final days, as his appetite was often poor.]

APRICOT AND CARDAMOM GRANOLA BARS (aka Jeremy’s Granola)
2 cups old-fashioned oats
1/2 cup packed chopped dried apricots
1/2 cup pumpkin seeds
1 1/4 teaspoons ground cardamom
6 tablespoons (3/4 stick) unsalted butter
1/3 cup packed dark brown sugar
3 tablespoons honey

Preheat oven to 350°F. Line 9-inch square baking pan with foil,
allowing foil to extend over sides. Butter foil. Mix oats, apricots,
pumpkin seeds and cardamom in bowl. Combine butter, sugar and honey in
medium saucepan. Stir over medium heat until butter melts and mixture
is smooth and begins to boil. Pour butter mixture over oat mixture and
stir until well coated. Transfer to prepared pan. Using spatula, press
mixture evenly into pan.

Bake oat mixture until top is golden brown, about 30 minutes. Transfer
to rack and cool. Using foil as aid, lift out of pan; place on work
surface. Using large sharp knife, cut into 18 bars.

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Deviance and Righteousness

10.15.2012

This guest post comes from a friend who lost her mother to ovarian cancer. Jennifer Harbel, a family friend, was full of empathy for what my children might be experiencing as I went through treatment. She wrote me notes of support, expressing her compassion for the children’s experience. Jenn has also been sympathetic to my frustration with Pinktober, and she shares her views in this moving tribute to her mother, who died when Jenn was 16.

The other day I realized it’s Banned Books Week. Which was a relief, since I thought I’d missed it for the first time in my memory. Out with the guilt and on with the celebration!

Because in my family Banned Books Week has always been celebrated. On the last Sunday in September my mom – a librarian, of course – would take my brother and I to the library to pick out seven banned or challenged books, one for each day of BBW. When I was little, we read picture books like Hansel & Gretel and The Lorax. As I got older we read titles like James and the Giant Peach and A Wrinkle in Time. Not only did we read banned books, we also discussed why each book was challenged or outright banned.

My mom was an outspoken advocate for BBW. She would tell the neighbors and our friends’ parents about it, and even offered to take their kids with us to the library. A few of them actually took her up on it, though I sometimes wonder how much choice they were really given.

Mom not only spoke her mind, but she was also what you would call strict. She brooked no nonsense (I’m pretty sure I learned that phrase straight from her) and one didn’t often challenge her authority without dire consequence. Yet, for one week a year we focused on reading books – great, fantastic books – that some people in authority claimed were dangerous.

The books we chose were chosen for that one reason alone; because some people said that we shouldn’t read them. We made a statement by checking those books out. We were saying that they were worth reading. That the ideas in them were worth knowing, that the books were vital and necessary to somebody.

Our act of reading was sedition. It carried with it a sense of duty. It is an act that is both deviant and righteous.

Every year during BBW I visit the library and check out a banned book. I return it late. I pay my fine in person, so that a human has to discover which book it is (computer checkouts are so handy, but so impersonal). And, if the librarian doesn’t remark on the title, I make sure to point it out. Because I want them to know.

This year Banned Books Week extends mostly into October. I have a love/hate relationship with this month. I like it because it’s usually early autumn and the air is crisp and light. The new-schoolbook smell still lingers. A few relatives and friends have birthdays to celebrate. It’s apple and fall squash season.

But, there are things I hate about October, too. Like my mom’s birthday on the 17th. At the beginning of the month I always think my mom would be xx years old this month. I feel a little sad, but not too sad because she wouldn’t be that old just yet. And it wouldn’t have been xx amount of years that we’ve been without her either, because she died in March.

As each day nears closer to her birthday, I feel like my sadness should exponentially increase. Then life gets in the way and I go to work, birthday parties, meet up with someone for drinks, etc., until I wake up and realize that today would be her birthday and that I should remember to give myself permission to be sad sometime during the day. Or, I remember in the evening that I should have been sadder that day because it was mom’s birthday and she isn’t here to celebrate it. Or, worse – it’s a few days after the 17th and I feel like crap for not feeling like crap on the actual day, that the 17th had been a good day, if not a great day. And then remembering the happiness I felt on her birthday makes me feel even crappier.

I also hate October because it’s Pinktober, or Breast Cancer Awareness Month. And, yes, I feel deviant and righteous about this view. My mom died of cancer. Not the good, hip-to-have kind of cancer. She died of ovarian cancer, with a small ‘o.’ The kind that’s hard to detect and therefore usually too late to cure when it is finally detected. The highest-rate-of-feminine-cancer-mortality kind, a rate that has remained virtually unchanged since 1987 according to the National Cancer Institute (5 yr survival rate = 46%). Not feminine, like girly or sexy, but as in “not male,” therefore not as many research dollars are thrown at ovarian cancer as is prostate cancer. Or, maybe the out-of-sight, out-of-mind rule applies since no man can give one of your ovaries a squeeze unless he’s your OB/GYN and you’ve made an appointment. I realize this makes me sound bitter and I won’t bore you with the details, but I can’t tell you how many times in more than two decades I’ve somehow been pressured to feel guilty for daring to mourn my mom in October – because she didn’t die of the type of cancer we’re supposed to be focusing on this month. I hate the fact that though there are many different types of cancer, over 200 in fact, only one month for one form of cancer garners so much of our attention as a nation. I think that ALL cancer sucks all of the time.

As you may have guessed, I resented October long before it became known among the cancer community as Pinktober. It overshadows the cancer awareness efforts and research for all the other forms of cancer, with the added bonus of guilt thrown in if you don’t buy into the whole cause. Like when purchasing a product in October, you must choose the pink one because hey, you needed it anyway, you like the color pink, and a whole 30¢ goes to “the cure” right? Breast cancer (unlike other cancer?) is like, scary and stuff, and we should do everything we can to raise awareness. As if wearing pink or a pink ribbon some time in the span of 30 days transforms you into a good person. Purchasing something pink doesn’t change you, and it almost certainly doesn’t change a damn thing about cancer.

Let me explain. A few years ago a friend in my community was told by her doctor that she had breast cancer. She told her friends and family about it. Then, she told the world about it through her cancer blog. We who read her blog have followed her long journey to being cancer-free again. Her journey sucked. And what really sucks is that the journey continues. Because the truth is, for everyone who has had cancer and beaten it there is always the fear that the cancer will come back. For cancer survivors and their families the journey evolves into one of vigilance tinged with fear. I pray that one day a cure is really found so that that no one will have to embark on these unwanted and undeserved journeys in the future. Anyway, it was on her blog that I first learned about Pinktober.

The main thing to learn about Pinktober is that Breast Cancer Awareness Month is a really, really sick joke. Whose punchline is so much a travesty that it should be made a crime. False advertising, fraud, coercive monopoly. Because the truth is, less than 20% of money raised for The Cure™ (capital letters and the trademark this time) actually goes towards finding a cure through research. Let me repeat that: less than 20% goes towards an actual cure. The vast majority of profit from your pink purchase goes to the manufacturer of course. What little money is left is divvied up for more unnecessary awareness campaigns (has anyone on the planet not heard of breast cancer yet?), the overhead for running the unnecessary awareness campaigns, a race/walk event, and for increasing net assets. While 17% goes toward treatment and screening, let’s not forget the purpose of this organization is for the trademarked cure. There only one word in my vocabulary that describes it: reprehensible.

If you’ve made it this far in what has turned into a lengthy essay, my sincere congratulations and appreciation. I’m about to check out of this one-sided conversation and I’m writing it.

In conclusion, I’d like you to know:

  • I wore a pink t-shirt this past Sunday, September 30 (The beginning of Banned Books Week! Coincidence or my subconscious working, I’m not sure) with the exact forethought of not wearing it again for the next 30 days. Proudly deviant and righteous. If you’re mad at me about it, I suggest that you go back and read the whole essay above so that you can at least try to understand me before you send me an angry email about your views.

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  • I may wear a teal shirt on the 17th for Mom’s birthday. As I mentioned somewhere above (in case you skipped it), I’ll likely forget the significance of the day on the day in question, so please don’t email me or ask on Facebook what I’m wearing. On second thought, it will never be a good idea to ask what I’m wearing whether it be on FB, twitter, email, or on the phone. Not. Ever.

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  • Before you buy pink, think. Do you know if any portion of your purchase goes towards charity? Some companies make a blanket donation then sell pink products to promote their partnership – whether or not you purchase their product. Visit Think Before You Pink for more information.

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Posted in End of Life | 7 Comments »