E's not dead yet!

My friend E. has had a reprieve. Indeed, she has experienced a medical miracle. The radiation she received a month ago completely removed the blockage of her bowel, and she has been cleared to eat, resume treatment, and generally enjoy life, although she will still receive assistance from hospice.

It looks like E. will ive to celebrate her 30th birthday next week, plant her garden and reap the fruits, and spend the summer with her family. She may have a month or two; her new goal is to walk her daughter into her first kindergarten class in the fall.

Folklife!

Every Memorial Day weekend the Seattle Center becomes an enormous folk festival, with thousands of volunteer performers and tens of thousands of happy folkies. This year my choir Dunava sang outdoors on Saturday evening. If it's sunny, the crowds are bigger outside. But the competition from other stages and random busking musicians is fierce. Luckily, our audience loved our set. You can hear us here.

On Sunday morning Rik and I attended the annual fundraising breakfast for Northwest Folklife, the organization that sponsors the festival. This is our third year attending, and I KNOW that I can raise more money following the Benevon fundraising model. After all, I've done so for my synagogue three years running. It irks me no end that Folklife doesn't follow the model accurately enough. I liken it to baking a cake: if you leave out the chocolate, you may end up with cake, but it won't be chocolate cake.

Went back on Sunday night for the Balkan participatory dance and pravo'd till my toes hurt. It was great fun to be able to dance to live music from talented musicians.

You gotta love Folklife!

Yahrzeit

Jews have a custom. On the anniversary of the death of a loved one, we light a candle that burns for 24 hours, so that one day in the year, we remember our people. On the eve of the first day of the Shavu'ot holiday, as I always do, I lit a yahrzeit candle for Rabbi Charisse Natalie Kranes, z"l.

I lost my best friend to cervical cancer in 1989. Charisse was 28 and recently ordained as a rabbi when the abdominal pain that bothered her during her final months in school did not go away upon ordination and moving for a new job. The diagnosis? Cancer.

Charisse accomplished much in the few years she had. She studied in Israel twice, sang like an angel, married her true love, and achieved her dream of becoming a rabbi and serving as the spiritual leader for several congregations.

She was a good friend from the time we were teens. We went to Young Judaea conventions and summer camp together. I followed her to study in Israel. Even after "growing up," Charisse and I always managed to stay connected.

Yesterday marks the 18th anniversary of Charisse's death. She's now been dead longer than the time we knew each other. But I still mourn her untimely loss. We were supposed to grow old and grey together, the way my mother has shared her life with her high school friends. Instead, I got cancer too. I only hope I face my cancer journey with as much grace as Charisse did.

Zichrona livracha, may her memory be a blessing.

E. still hanging in there

Yesterday I drove north to visit E., my friend who is dying of metastatic breast cancer. I called last week to leave a message of love. She had sent some email. Then on Tuesday the phone rang! When E. calls, I go running.

We had a long visit together. We sat on the couch for a while, then went outside to look at her garden. Many of their friends spent a weekend getting the garden into shape so that E. and her family could enjoy spring's blossoming. Her husband mounted a guardian angel (a gift from a friend) to look over the garden, and the angels bears a plaque saying "Mom's Garden." I think it gives E. comfort to know that the earth's cycle of birth, fruitfulness and death is going on all around her.

Afterwards we snuggled up on the bed and talked about some really hard stuff, the things very few people are able to discuss. Topping the list of questions is, what happens after I die? E. and I agree that by nature, we human beings aren't equipped to know the answer.

E. heard from an oncology chaplain that some people achieve enlightenment and move on to a special place; others don't get the message here on earth and have to "repeat the course"; and some come back to set an example for others. And of course many people believe in a traditional heaven (and hell).

I think that what counts is the life we lead here. Our example of how we live becomes the legacy we leave for those who know us.

L.'s death

I learned last week that my friend L., who had been sent home to hospice care earlier this month, passed away. She died at home, with her partner close at hand. Her family had all been in to visit and say goodbye, although L. was not very responsive in her last days.

The social worker who runs my support group told us that when the doctor says s/he has no more treatment options to offer, some people relax into hospice care and fade quickly. Certainly we who have advanced cancer are living longer with our disease; our dying seems to be comparably shortened.

L. was one year older than I, had been living with metastatic breast cancer for one year longer than I have.

Last week I told my oncologist I was coming up on 5 years living with mets. His response? "That's your first five year anniversary." If he has hope, then how can I not?

By the way, my (younger) friend E. is still hanging in there...

Exercise

Lately I have been thinking about joining a gym. My medical history notwithstanding, I now weigh more than I ever have previously. While I'm by no means fat, I could stand to lose a few pounds. And at a recent doctor's visit, I was both weighed and measured. I am now 5 feet, 4 inches, after having spent my entire adult life at 5'5"! The loss of almost an inch of height took place over some time. Since I don't get measured regularly, we may never know exactly when I started to shrink, or whether it's a result of the surgery or early onset of menopause.

At any rate, I want to get into better condition, so I checked out a Curves gym today. In this chain of women-only gyms, the machines work via hydraulic pressure instead of weights. In 30 second spurts of activity, you move around a circuit to exercise upper and lower muscle groups. In between each machine is a small platform where you hang out for 30 seconds and dance around to keep up your heart rate. Pulsing music pours out the speakers and every 30 seconds a disembodied voice tells you to move to the next station. Every 8 minutes, the voice tells you to check your pulse. You complete the circuit twice in about 30 minutes. They recommend going three times a week.

This is an entirely new concept to me. All my life I got my exercise from dance. It was both aerobic and weight bearing. But I "retired" from Radost in 2001, and now my exercise has been limited to walking the dog, lymphedema exercises with free weights and a weekly yoga class.

I have a one-week guest pass, so we will see how I feel tomorrow; if I go again; and how much I can put up with that voice telling me to move on to the next station!

Toronto the Good

Just back from a whirlwind weekend in Toronto for Rik's best friend's daugher's bat mitzvah. We met Rik's parents there -- look at what we squeezed in to four days!

Arrived 4 PM Friday, quick change of clothing and joined everyone at Shabbat dinner Friday night.

The bat mitzvah on Saturday morning. A. read the entire double parsha, perhaps 100 lines of Hebrew. This is a feat that adults would tremble to take on! She was terrific, poised and confident, clear in her pronunciation. Her dvar Torah was insightful.
Visited with cousins in the afternoon.
A quick nap, then on to dinner with old family friends at a Japanese restaurant. Love that sushi!

Sunday Mother's Day brunch at Jamie Kennedy's Wine Bar. I had the roast asparagus with wild leeks and mushrooms, followed by potato rosti with smoked trout. We all shared the house specialty, Yukon Gold fries with two kinds of sea salt and thyme, served with lemon and mayonnaise. FABULOUS!
Followed by a visit with my folk dancing friend Jane in her amazing view apartment high above downtown TO.
Then off to the other side of town for a quick visit with another old Katz family friend.
Just time to shower and close our eyes for a cat nap, then off to the lavish bat mitzvah party.

Monday was brunch at the B.'s home, long Jewish goodbyes, and then off to the airport. Our plane was delayed on the tarmac for almost an hour, so by the time we returned to Seattle, we were extremely pooped. I don't know how RIk managed to teach all day today!

I'll post photos soon.

Limericks

My friend Carrie writes limericks. This is the one she composed for me:

I have a wonderful friend named Jill
Who knows cancer can be a real pill
First it was breasts
Then on to bone mets
But she still gets life's fill with strong will

My cocker spaniel saved my life

When I was recovering from that broken leg, my shrink recommended that I get a service dog. She thought a Cavalier King Charles spaniel would be the right size and have the right amount of energy to keep me mobile but not overwhelm me. So I searched online for a rescue dog and found the perfect animal…

This dog was listed on petfinder.com as part Cavalier, part cocker spaniel. Perhaps 7 years old, he had been abandoned at a Portland, Oregon animal shelter and was a day away from euthanasia when he was rescued. He was named Pumpkin for his sweet nature, was brought back to good health, neutered and micro-shipped and listed on the internet for adoption.

The day Pumpkin came to Seattle, my shrink had arranged to meet him with her special dog, Arturo Tosca-Bow-Wow. Arthur was particularly good at measuring the temperament of other dogs. Dr. Judy knew that if Arthur approved, Pumpkin would be the right dog for me. Well, Arthur and Pumpkin hit it off right away, and as they played together in our living room, Pumpkin came into our lives.

Dr. Judy wrote a prescription which I carry in my wallet:
“Jill Cohen suffers from a serious medical disorder that impairs her quality of life and mobility. I have prescribed a service dog to assist her.”

Over the coming months and years, as I recovered more completely, Pumpkin became my constant companion. Together we walked every day and my leg got stronger. Pumpkin goes with me to the oncologist, to treatment, to my support group. He goes out for lunch and for coffee. We run errands together to the post office and even to the grocery store. We’ve been through radiation treatment twice: once for my hip and once for both arms. We even go to a special yoga class for cancer patients, where Pumpkin excels at the Downward Dog pose. When I have Pumpkin with me, I’m able to go and do.

Dr. Judy says that Pumpkin has an uncanny ability to become like a piece of furniture. When we are out in public, he instinctively goes into a long “down” at my feet. Pumpkin has done basic obedience training with me. By temperament, he is suited to being a service dog. He has passed the American Kennel Club’s Canine Good Citizen test and proudly wears this patch on his vest.

Pumpkin’s vest also has a patch saying ”Ask to pet me, I’m friendly.” Many people come up to say hello when we are out and about. He is always friendly and well mannered. Indeed, my husband and I sometimes wonder if his previous owner was in a wheelchair, because Pumpkin seems particularly sensitive to chair-bound folks we meet.

So how did Pumpkin save my life? Well, having to walk him twice a day meant I had to become more active and regain strength in my legs, despite having multiple sites of bony metastases throughout my skeleton.

My husband and I have been through infertility and heart disease as well as breast cancer treatment. Our five attempts at private adoption failed when the birth mothers decided to not to place their children for adoption after the babies were born. International adoption was out of the question – we were told that no judge in another country would place a child with us given our health history. And even our home state would not place a child with us through the “foster-to-adopt” program. So Pumpkin has also become a substitute for the child we so wanted to raise.

Mostly though, Pumpkin loves me. He gives unconditional love, just because I rescued him from a shelter. He needs me, and I need him. Together we make a fine team!

Survivor's guilt

Today I woke up experiencing what I can only call survivor's guilt. L. may already be dead; dying E. will leave two very young children; P. passed away weeks before her life goal of seeing her son graduate high school; D. wasn't prepared for a poor surgical outcome, never bounced back from anesthetic and didn't have a chance to say goodbye. Why am I still here?

I didn't do anything to deserve cancer, yet I got it. I developed a life-threatening post-surgical infection. I got through chemo and radiation. Then the cancer came back worse than the first time. I broke my leg, was convinced i was dying. Yet here I am, four and a half years later, with limited mobility but truly excellent quality of life, still stable on estrogen blockers.

What's different about me? Or is it all random?

Hers is a good death

We are just back from visiting E. and her family. She was mobile, although using IV pain meds, and has a tube through her nose. E. was more coherent than I expected, with spurts of real energy intermingled with some drifting off. We had a wonderful long talk together; Rik talked with her husband; and then we stayed to have dinner with her family when E. said she would come sit in the living room with us while we all ate.

E. told me that she feels at peace with her impending death, that she knows her family will be well cared for, and that she feels carried on the wave of all the love she is receiving from family and friends.

I guess this IS what a good death looks like.

Two friends dying this week

Last night I heard from E. She was hospitalized with severe pain, which turned out to be an inoperable bowel obstruction. Her cancer has spread so far into her abdomen that it can't be removed. She hoped to be discharged to hospice at home today. E., you may recall, is something like a daughter and something like a sister to me. She is just 30, married with two young children.

I am overwhelmed at how she is handling her imminent death. She is making calls to gather her friends and family. Picture her lying on the hospital bed, her favorite Bluetooth earpiece glued to her ear, talking on her cell phone. People are coming in from all over to say goodbye. Whether she has a week or just a few days left, E. will be surrounded by people who love her and who she loves. And on top of all the visits she is writing special cards to give to her children on future significant moments she will miss (elementary school, high school, graduations, weddings, grandchildren).

Then there's L. from my support group. L. has been coming to group for about a year. She too has metastatic breast cancer and is maybe one year older than I am, has been living with mets one more year than I have. We've commiserated over her forced retirement from her beloved career, how to live on ongoing chemo for many years, planning her own funeral so that her partner won't have to guess what she wants.

L.'s brain mets took a turn for the worse last week and her oncologist sent her home to hospice, saying that he had nothing further in the way of treatment to offer her. Often when people get this news, they decide that it's time to stop struggling and relax to the inevitable. That's what L. has done. Between one week and the next, she grew progressively less and less responsive. When she wasn't at group on Tuesday, we knew something was wrong. Her partner tells me she coudl die any day. He's talking with her sister to make sure that they all follow L.'s wishes.

Theirs are 21st century deaths from cancer.

My dog is a cone head

Pumpkin has recovered nicely from his surgery. He has a 3 inch scar winding up his left front paw. But because the scab isn't fully formed, even a week later, he needs to wear an Elizabethan cone to keep him from licking and worrying at it. I think the cone, plus his truly terrible summer haircut, combine to make him look even goofier than ever! In this photo you can see that he can just barely hold onto his favorite toy, a squeaky soccer ball he stole from my friend Jeanne's Golden Retriever GB.

You can keep up to date with Jeanne and her cancer story here.