Posts Tagged ‘courage’
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 »
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 »
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 | 6 Comments »
As I process my whole cancer experience, I realize I cannot separate what I went through from the loss of my stepbrother two years prior to my own diagnosis. Sorting through my own trauma in order to heal, I have to go back before the date I was told, “You have cancer.”
This time of year is particularly painful for me, as it was the season of losing Jeremy. As the five year anniversary of his death approaches, I will post some of the updates I sent to friends and family at the time to share with you my firsthand accounts of that time.
We just got back from spending 10 days in the Bay Area, with the goal of being of as much service as possible to Jeremy and Beth [his wife]. I think we managed to help out, but it was a heartwrenching experience.
Not surprisingly, the situation with Jeremy was more complex once we got up close to it. The first thing that I needed to sort out was the state of the palliative care/hospice issue. As I indicated in my last post, I got our family on a plane as soon as I could manage after my dad called and told me that Jeremy was being moved to palliative care only, and that the doctors did not know how much time he had left. When I got there and talked to Jeremy, however, he was still talking about treatments and such, leaving me more than a little confused.
It turns out that he has two main doctors he is seeing right now, the pain guy and the oncologist. The pain guy is advocating for palliative care, and the oncologist is on the fence. So I contacted the marvelous advanced prostate cancer specialist here at the UW (Tia Higano) who has been consulting with me pro bono. I wrote her an email saying that I was kind of at a loss and did not have the expertise to judge what the right thing to do is in this situation. My dad and I spoke with her on the phone for over and hour, trying to summarize Jeremy’s treatment. She told us in a lot of detail the kinds of questions she would have about Jeremy’s treatment in making such a decision. The bottom line is, although the pain management has become the overwhelming issue, the door has not completely closed on treatment.
But the challenge of pain management cannot be underestimated. Jeremy is on high doses of pain medication, and still has a lot of what is called “breakthrough pain,” meaning that the pain breaks through the shield provided by the medication. Jer tells me that bone pain is particularly hard to manage. He was hospitalized during our visit to address breakthrough pain and swelling in his leg. Basically, his quality of life has greatly diminished, as his existence centers around pain management. Somebody has to be with him 24/7, supervising his medication, rubbing his hip and leg, reminding him to take care of basic things that he gets too distracted to remember. It is absolutely heartbreaking to see him suffering like this. On Tuesday, he has an appointment to get something called an intrathecal pump, which would administer meds directly into his spinal column, hopefully giving him quicker relief with less medication.
The miracle in all this is how, in the moments where his pain is under control, Jeremy manages to stay Jeremy. He has every right to be bitter and angry, but instead he wants to connect with the people around him in the most loving and authentic ways possible. [My husband] Adam spent a couple of nights at Jer & Beth’s, doing the overnight caretaking so Beth could get some sleep. (Jer wakes up frequently with pain issues throughout the night.) Adam had a chance to have some meaningful conversations during those wee small hours, and he expressed our awe at Jeremy’s determination to remain loving and resist bitterness. Jeremy basically said that if he doesn’t have a lot of time left, he doesn’t want to spend it being angry and pushing people away.
And, in fact, he seems to do the opposite. He and Beth have an amazing network of friends who come to help in every way they can. One day I came over, and he was getting a massage from a friend; another day, an at-home acupuncture treatment. This past Saturday, Beth actually had to turn away about 10 people who dropped by unannounced, because Jer was too tired to visit. Many of these friends told me about how much Jeremy has meant to them in their lives. He helped them climb mountains they were afraid they couldn’t conquer; he helped them contribute their talents to one of his many causes. He has inspired love and devotion in a lot of people.
But, outside of his family, no one is as devoted as his best friend, an activist with a kind of earn-enough-money-to-get-by lifestyle. He drove his vintage RV up from LA and is living behind Jer & Beth’s apartment building, helping Beth manage Jeremy’s care (which is more than a full time job), rotating on the night shifts, weighing in on medical decisions, making sure Beth doesn’t forget herself, and hauling Jer around San Francisco to his various appointments in the big RV. Driving and sitting are uncomfortable right now, so Jeremy gets to ride in style in the RV, where he can travel lying down, take naps between appointments, and have a snack. I told Jer’s friend that it absolutely tickles me to picture him going around SF (is there a more RV unfriendly city in the US?), finding parking, managing the hills, in that old RV. He replied dryly,”Well, the disabled parking permit helps.”
So what did I do in the face of all of this? I cooked, did laundry, walked the dog, watered plants, rubbed Jer’s sore hip, ran errands. I held Jer when he felt nauseous. I insisted that the nurses and technicians in the hospital sanitize their hands before treating Jer. I made calls to make sure that the CT scan taken at the hospital made it to Jer’s oncologist. I cooked some more, coming upon a granola recipe that Jer was particularly fond of, and given his nausea and weight loss, I was inspired to make multiple batches. It all seemed so insufficient, but it felt important to do something. I did manage to wrangle a little time to talk to Jer heart-to-heart. And I can tell you that my heart is broken.
Where things are at now: We’re hoping that the pump helps increase his quality of life. He is still receiving some chemo (in pill form) in the hopes that the cancer will respond (although he has not responded to any chemo so far). There are still 2 treatments he might try if he is strong enough: an intravenous radioactive isotope that Tia told me has had a “Lazurus effect” on some of her most dire cases and, if he is ever strong enough again, the bone marrow transplant. The isotope treatment would only be able to send his cancer into remission, but if it helped him gain strength and time, it might allow for the bone marrow transplant to take place, which could theoretically provide a cure. His oncologist is reluctant to use the isotope treatment because he has lost 2 patients from it who ended up with brain hemorrhaging. But Tia (who, I might add, is reviewing his oncologist’s promotion case) thinks it could be managed with vigilant monitoring of his platelet count.
At the same time, we all realize that these options are not great. Jer and Beth are going to start investigating hospice programs nearby. Jer is definitely walking a fine line right now, and we all recognize that another big setback could make even these remote possibilities of treatment recede into the background for good.
Thank you for all your loving and supportive messages. I know there isn’t a lot to say right now, but just knowing that you all care about us means the world right now.
Tags: body issues, changes, coping, courage, end-of-life, essay, gratitude, Jeremy, pain, support
Posted in End of Life | 2 Comments »
When I was a young girl, I liked to read Grimm’s fairy tales. Not the cleaned up versions, but the old school ones with cruel villains and extra spooky plots.
I had seen enough ugliness in the world to suspect that the saccharine, popularized retellings were inaccurate in their representation of the world, so I sought out dark stories that felt more honest.
As I have been processing all I have gone through, I keep thinking back to The Seven Ravens. In it, a girl’s seven brothers get bewitched and turned into ravens. She goes on a quest to find them, and learns they are locked inside a glass mountain. The only way for her to free them is to cut off her finger and put it in the keyhole. She does so without hesitation and frees her brothers, who resume their human form.
The moment where she cuts off her finger always caught my breath. It was one line in a very brief story, but I meditated on it as a child.
What would I have done in that situation? How badly would it hurt to cut off your own finger? What went through her mind as she brought the knife onto her own flesh? How did she have the strength to actually push it through all the way? Does she realize that she will never have that finger again? Will her brothers ever understand what she did for them?
The Seven Ravens and the questions it forced me to ponder are not unlike what I had to face as a cancer patient. I willingly chose terrible suffering, a cruel regimen of pain, as a sacrifice I made to have more life.
Being a participant in my own pain is not something that came easily or that I am getting over. As my friend Xeni has entered the middle part of her course of daily radiation, I am reminded of this unnerving aspect of the treatment.
Climbing on the table. Day after day, even as your skin gets sore and maybe even blisters. Even as you feel the energy draining from your body. Like the ancients who sacrificed animals to unknown gods, we offer ourselves up to the unseen cells we seek to placate.
All this is done on our own accord. Unlike chemo, nobody typically escorts you. The sessions are brief and frequent. You climb on the table yourself, get into position. Unlike surgery, there is no heavenly moment of Versed bliss before you lose consciousness and it is all in the doctors’ hands. Your volition, your showing up, your stillness and cooperation is what makes it all work.
What prepares us for this? How do we make sense of what comes next?
As the news of NED sinks in, as I approach my three year milestone, I vacillate between anger at what has been lost and amazement that I am still alive.
My arm catches fire with lymphedema and nerve damage. I am in anger again.
My brain gets clicking, my energy sustains me through a day, and I connect to what I love most in life. I feel immense gratitude.
I thought the roller coaster ended with treatment. But I now see recovery has its own ups and downs. We are reminded by our own bodies, by our friends’ stories and suffering, of all that we have endured.
The challenge, as I see it, is to make the most of the moments of joy. To seek them out.
That may be the only way to make good on this terrible sacrifice.
Tags: attitude, changes, coping, courage, daily life, fatigue, gratitude, grief, hope, identity loss, radiation, recovery
Posted in Survivorship, Treatment | 6 Comments »