Scan Results

Got my PET/CT results yesterday -- I have 3 spots of active disease in my sternum, spine (T12) and right scapula. The scapula is the only one which hurts. The spot on my right arm which has been bothering me did not register!

I will see the radiation oncologist on Friday about radiating the spine and perhaps the scapula. And my medical oncologist has switched me from Aromasin to tamoxifen, which I never took. We'll try it for a month, see how I tolerate it, and then maybe try it for a longer period of time.

I'm back on the pony that goes up and down on the merry-go-round.

A new cancer image

Yesterday I thought of a new cancer image:

I'm on a merry-go-round with my cancer. Sometimes I ride on a bench and hardly move at all; other times I'm on the horses that go up and down, up and down. And I'm staying on this merry-go-round until there's a cure.

No more roller coasters for me -- my ride with cancer doesn't end, it just goes 'round and 'round...

New Year, Same Cancer

We rang in the new year with Rik's parents at their winter home in Florida. After a relaxing visit, and a hectic trip back, I slept for 13 hours! Who knew it takes a vacation to recover from your vacation?

I had a bone scan in December, but the results were inconclusive. I may or may not have new or active metastases. So on this Thursday I will have a PET/CT test. This test measures the uptake of glucose. Since active tumors absorb glucose more rapidly than regular tissue, it gives a good measure of tumor activity. It's also VERY expensive -- about $4000. Thankfully our health insurance will cover the costs.

But over the weekend I noticed some discomfort in my right arm, which to me indicates tumor activity. So I have called my oncologist and hopefully will be able to see him within a couple of days of the scan, to get the results, see if the pain in my right arm really is active disease, and talk about treatment options.

I tihnk we are about to take another ride on the cancer roller coaster. Are you ready?

Lit those candles...

Today is the last day of Chanukah. We have had a busy holiday indeed! We began and ended with dinner with friends. In between Seattle was hit with a HUGE storm causing power outages for almost a week; I had a bone scan; Shira came back from Israel; and we went to visit friends on Harstine Island.

Thankfully we only lost power for 24 hours. Instead of sitting in a cold, dark house, we went over to friends and hung out there all day. Around dinnertime we called our neighbors and they reported power back on our block. So we came home to a warm, lit house after all. But our friends on Mercer Island were without power for almost a week. They joined us for a latke fest and a home screening of "Bride & Prejudice" one night and we all went out for dinner together the next night. They have a gas hot water tank and gas cooktop, so they were able to shower and eat hot food -- all things that help make being in the cold tolerable.

Our elderly neigbors didin't fare as well. A tree came down and took with it the power line to their house, so they were cold and dark till last night. They would not come over to stay with us, but Rik took them hot coffee the next morning.

It makes you think how close we all live to the edge -- if we go 24 hours without power our food spoils, our homes are too cold for comfort, and we sit in the dark. Rik and I have reconfigured our emergency supplies again and will be sure to include items in our cars as well as in our home.

I get the bone scan results next week, but it was a regularly scheduled exam. Shira arrived safely bearing many gifts from Israel: a DVD of a favorite movie called "Halahakah" (The Troupe) which is kind of like an Israeli musical M*A*S*H, plus more Armenian pottery tiles, Ahava facial scrub, and za'atar (hyssop) tea. Our friends on Harstine Island welcomed us to their beautiful home in the woods. We went for a long walk in the rain, ate like kings, and even tasted 7 different kinds of single malt scotch!

Last night we concluded Chanukah with friends, more latkes, and lots of candles. You gotta love a holiday where the designated food is fried potatoes!

Raising More Money

Yesterday culminated months of work for my synagogue -- we raised $112,000 for our operating budget! The room was colorful and crowded, the food tasty, the film moving and the program went smoothly, starting and ending on time. I was the keynote speaker and got to tell my story about how being rediagnosed with cancer helped me find community.

Here's what I said:

Good morning. My name is Jill Cohen, and this is my Beth Shalom story.

Four years, three months and 13 days ago, on the day I got the news that my breast cancer had returned and spread to my bones, I went home on crutches, lost my balance, fell and broke my leg.

It takes a long time to recover from a pathological fracture. Almost five months went by before I was able to put enough weight on my injured leg and walk with a cane.

I was overwhelmed by my cancer’s spread to more than 20 sites of bony metastases in the back of my skull, my sternum, my spine, my humerii and my femurs. The drugs I take to control my cancer put me into early, and permanent, menopause. I had three surgeries. I had radiation in five places.

I experienced significant losses. At age 42, I had to retire on medical disability from my career in the Jewish community. I tried to accept that cancer had finally cheated my husband and I out of ever becoming parents. I cried buckets of tears with Rik, with family, and with friends.

But I had help from an unexpected source – the members of Beth Shalom.

I had not been a frequent shul-goer. At one time I was involved with the Keruv Committee to reach out to new members, but that was it. Still, something had drawn me to Beth Shalom and I became a member.

It didn’t matter that I wasn’t active. Rabbi Z encouraged me to write for 15 minutes a day, to help me find meaning in my cancer experience. Rabbi G assured me that I wasn’t alone in suffering. Mitzvah Corps volunteers fed us three times a week for months and drove me to doctor’s appointments and to daily radiation treatments.

But my epiphany came on Rosh Hashanah, just after I broke my leg. I didn’t feel ready to go out in public yet. Harvey N offered to come over and blow the shofar. People from Beth Shalom and other friends filled our home to capacity with folding chairs, prayer books and food. I was lying on the couch, watching the hubbub, when I realized that I had been given a glimpse into the future. This is what my shivah minyan would be like: community and friends, giving support in a time of need.

I knew that I had to give to this community that had given me so much.

Once I was mobile, I began to attend Shabbat morning services. They gave structure to my week. Our connection to the Divine is evident in every beautiful note we sing together.

Steve P asked me to serve on the board, and I said yes, if he would let me try to raise money for the shul my way. So far it seems to be working!

And I always offer to make a meal when the Mitzvah Corps calls.

Involvement in our synagogue gives me a connection with the spiritual and an attachment to community, things we all need in our fast-paced, 21st century lives. Once I looked outside my own personal “four walls,” I found community waiting for me.

Here’s a quote from my favorite science fiction author, Robert Heinlein:

“The banker … pulled out a single credit note. "Eat first — a full belly steadies the judgment. Do me the honor of accepting this as our welcome to the newcomer."

Don’s pride said no; his stomach said YES! He took it and said, "Uh, thanks! That's awfully kind of you. I'll pay it back, first chance."

"Instead, pay it forward to someone else who needs it."

(Adapted from “Between Planets”)

I can’t possibly repay all that I owe. I can’t pay back; but I can pay it forward. I invite you to join me in this mitzvah today. Pay it forward to Beth Shalom.

Get involved in a committee. Come to a class or lecture. Invite someone to your home for a meal.

If you reach outside your personal space, you’ll find community waiting right there for you, the way it was for me.

10 things I am thankful for

In no particular order --

1) Waking up each day alive, alert and able
2) Kisses from my husband
3) A daily dose of Vitamin CH (chocolate!)
4) A warm dog snoozing at my feet
5) Afternoon naps
6) Taking tea with a good friend
7) Walking in the sunshine (or in the rain, or on the beach... walking is vastly under-rated until you can't do it)
8) Lifting my voice in song
9) Reaching people around the world with the push of a button
10) Being in a room full of family and friends

Hope your Thanksgiving day was filled with good food, good cheer, and good friends!

Happy birthday to me!

Today is my 47th birthday. After my cancer came back, I wasn’t sure I’d get to celebrate too many more birthdays, so each one is more precious than turning 16, 18, or 21, or any other, more usual, milestone dates.

I try to celebrate with family and friends as often as possible. Birthdays are one more opportunity to open a bottle of bubbly, eat some vitamin CH (chocolate) and get together with one another. Sometimes the reason to celebrate is just because it’s Wednesday. Or because the sun is shining. When you’ve got cancer, you find the golden moment whenever it takes place.

I found a translation of the prayer I recite each morning upon arising:
“I am grateful to You, living, enduring Sovereign,
for restoring my soul to me in compassion.
You are faithful beyond measure.”

Each day is something of a miracle. Unlike many women, I look forward to being able to say I’m a day or a year older.

I’m really looking forward (in a couple of years) to turning 50!

Out and About

I am typing this from a remote location in New Jersey. Ain't technology wonderful!

I received a scholarship from Living Beyond Breast Cancer to attend their one-day conference on "Moving Toward Wellness: Body, Mind and Soul." They very generously made it possible for me to cross the country to learn more about a timely topic. After all, when one has advanced cancer, trying to live in a framework of wellness can be difficult, if not (on occasion) impossible.

The keynote speaker described some great tools for seeking wellness. Validation, communication, dealing with PWACs (people without a clue -- do you know any?), crisis intervention, and of course the mind-body connection.

I also attended a worksahop on latest medical and complementary approaches for advanced breast cacner, where I learned about two new treatments. SUTENT (SU 11248) has been approved to treat advanced kidney cancer and like so many other chemotherapies, may have good effect on metastatic breast cancer. The other is Avemar, made in Hungary and marketed in the USA under the name Ave. It's made from fermented wheat germ extract and has been studied on oral and colon cancer, but again, it may be also appropriate for breast cancer. These drugs were mentioned by a medical oncologist and the director of a center of integrative medicine. The best of both worlds -- physicians who are open to all possibilities.

The keynote speaker also closed the seminar with some words on fear. Fear of recurrence (well, I guess I got over that one!), fear of dying and death, mortality, vulnerability, and spirituality.

She offered a great tool, one I had not considered before -- writing your own prayer, in words that speak to you, to read aloud every day when you wake up, before you even get out of bed to use the toilet. The sample prayer she shared was simply put, evoked great emotion, and was written by a patient who'd never done any writing before. I will give this one some thought and see what I can come up with.

While back east I am also visiting my family for a couple of days. We have been talking, eating, and generally enjoying each other's company. My dad's mobility continues to improve, and of course since he's been off chemo for several months, he now has a full head of hair again. Mom looks great and is enjoying her work every Sunday at the synagogue. In short, this has been a great trip!

Swimming in Pink

It's October, and that means Breast Cancer Awareness Month. Pink stuff is everywhere -- pink kitchen appliances; pink garden tools; even pink Barbie dolls (oy!).

Do me a favor: if you want to support breast cancer research, advocacy, or related issues, DON'T BUY PINK. The few dollars or even pennies donated per item can't provide enough funding to help in a big way. Women with breast cancer would be better off if you simply made a donation to an appropriate charity.

To get some background on this issue, read Buying Pink from the Seattle Times.

Want to help? You can ---

- Fund research, so I will live to celebrate another birthday.

- Fund instruction in breast self-exams for girls and young women, so they will learn what their breasts feel like and how to recognize changes.

- Fund early detection for women who can't afford mammograms.

- Fund patient support for women who have trouble making ends meet while in treatment.

- Fund advocacy work to get more government funding to find a cure for cancer.

But don't buy pink for me. It doesn't help.

Another cancer dream

I think this is another cancer dream..

I'm in a house, it feels like my house, but everything is topsy-turvy: the bed is in the wrong spot, the couch is gone (!) and another sofa is there in its place AND I DON'T LIKE IT AT ALL. I run from room to room, yelling at my husband. Why has he traded one sofa for another without asking me? How can he leave to go to work when everything is out of whack?

I was angry while dreaming this. I knew I was dreaming, but I couldn't wake up enough to go back to sleep and dream something else. Very distressing...