Archive for November, 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,
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.
Tags: coping, courage, grief, Jeremy
Posted in End of Life | 1 Comment »
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 »
What do Walter White and General Patraeus have in common?
Aside from being white American men of a certain age, maybe not much.
But they do both have a cancer diagnosis.
Does this explain the General’s recent revelation that, after a 38 year marriage and while holding a position vulnerable to blackmail, he has been carrying on an affair, perhaps even with two women at once?
I do not generally engage in the gossipy side of news, but when I found out that, beyond the scandalous headlines, Patraeus is facing a cancer diagnosis, I could not help but wonder if the two were related.
Since my brother’s diagnosis over 7 years ago, I have witnessed and experienced firsthand numerous instances of what I have come to call Mortality Acting Out. As I explained on twitter this morning:
Since becoming a patient myself, I have used my anthropological skills to explore CancerWorld and document instances of Mortality Acting Out. I have heard stories about sudden affairs after longterm monogamy, increased promiscuity, quitting stable jobs, breaking off friendships, and reckless spending. It’s like a midlife crisis on steroids.
Do you have a story to share? You can add it in the comments section or email me at babe[at]chemobabe[dot]com. I will write a follow up post on this topic in the coming weeks.
Tags: attitude, changes, coping, daily life, identity loss, mental health
Posted in End of Life, Survivorship | 1 Comment »
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.
Tags: coping, courage, essay, grief, identity loss, Jeremy
Posted in End of Life | No Comments »