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. 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.
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.
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.
Tags: chemo, chemo rollercoaster, courage, daily life, doctor-patient interaction, gratitude, grief, parenting, survivorship
Posted in Survivorship | 12 Comments »
Who are we? What makes our lives what they are?
These are some of the essential questions of our humanity.
Some answers to this question place a lot of emphasis on free will and merit, that our lives are largely the result of our deliberate action and inherited talent. Other answers emphasize the social forces that come into play, like poverty and access to education, that shape our life chances.
I had been heavily steeped in these sort of debates, but these conversations did little to prepare me for cancer.
When we fall ill, there is no escaping the profound connection between our bodies and our biographies. Social scientists Anselm Strauss and Jennifer Corbin illustrated this body-biography connection in different illness scenarios:
The dashed line represent an individual’s unfolding life story and the solid line represents the body’s path, both over time. The top diagram shows a chronic illness situation, with the body having its ups and downs, the biography dipping sometimes and holding steady others. The second diagram shows sudden catastrophic illness, with both the body and biography taking a drastic, irrecoverable dive. The last shows an acute illness and recovery, with the body and biography in sync.
I have been thinking of what the picture of my body-biography would look like. I think I would need to have different color lines for the different subplots in my biography; some aspects of my life have recovered better than others. It’s that very disconnect that can make day-to-day life uncomfortable: my external body looks recovered (well, with my clothes on anyway), but my energy and psyche are not back to their baseline.
This past week, my feeling of returning to my old biographical path got a boost.
As many of you know, I am a professor. One of the great parts of my job is that I get to have a sabbatical now and again. I haven’t yet had one in my career, and had really looked forward to taking my family abroad for some stretch of time. Travel has always been a great learning experience for me, and I was excited to share that with my children.
Things have fallen into place: my sabbatical request was granted, the visiting scholar fellowship came through, and we are off to Israel for a couple of months next Fall. There is still a lot to be worked out, but what a delightful disruption this will be.
It has me hopeful that, someday, my biography will feel like it’s mine again, like I am authoring the story and not simply having to maintain a sense of myself in the face of the loss of illness. This is a big first step.
Tags: appearance, attitude, body issues, changes, coping, daily life, gratitude, identity loss, parenting, survivorship
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Mommy, when I grow up, I will invent a vaccine that stops cancer before it grows.
Then I will invent a time machine and travel back in time. I’ll give you the vaccine,
and then you will never have had cancer.
- my five year old
Tags: coping, daily life, grief, parenting, support
Posted in Survivorship | 8 Comments »
One of my children has faced some serious challenges that, I believe and some of the experts we have talked to concur, have been exacerbated by our family’s two year plus cancer crisis.
Out of respect for my children’s privacy I will not name the child or the problem. But I will share with you the heartbreak I feel as a mother, knowing the parenting opportunities I missed out of necessity of saving my own life.
I know what you are thinking. You want to reassure me. you want to talk me out of my maternal guilt. You want to let me know that I did what I had to do, which is undoubtedly true.
But it does not change this, yet another brutal reality of cancer. As with other uncomfortable truths, it is one I feel compelled to share.
Nobody can replace a parent’s attention and love. But if you know a family with a parent with cancer, please reach out to support their children too.
Tags: parenting, straight talk, survivorship
Posted in Survivorship | 7 Comments »
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.
- 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.
- 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.
Tags: advocacy, cancer orphans, co-surviving, coping, courage, daily life, essay, grief, parenting
Posted in End of Life | 7 Comments »