Florida part 1

Last week we traveled to Florida for a family visit. We flew into Orlando, rented a car and stayed overnight. We spent the morning at Downtown Disney, which is the shopping and eating part of "The Mouse" (no admission fee, no rides). There was a giant Lego display for kids to play with; being big kids ourselves, we tried to build a fort with a moat. I had to pose with the Lego doggies.

Then we drove to visit my cousins in Coconut Creek (near Fort Lauderdale). We spent an evening of Chanukah with them, watching the candles, eating potato latkes and talking, talking, talking!

These cousins -- two sisters -- are in their mid-eighties. My father's father and their grandfather were brothers. We met in the late 1960s when my family had moved from New York to to Cincinnati and my mother was lonely for family. My dad remembered he had cousins in Cleveland, called them up one day and said "Hello, this is Sheldon Cohen." (At the time, Sheldon Cohen was the name of the head of the IRS. Imagine my cousins' surprise -- they thought they were being audited by the head of the IRS himself!)

I found a lovely hotel right on the beach, the Ocean Sky Resort and Hotel. We had a king bed, small fridge, balcony with partial view (meaning you had to sit sideways to see the ocean). I understand why people stay on the beach for a week. The restaurant is right by the pool, there was even a bar, and it all overlooks the ocean.

The Lauderdale area beach is narrow, especially compared with the Pacific ocean beach at Moclips. But we had a little time to walk on the sand, dip our toes into the Atlantic, and take photos of jelly fish.

A little less edema

Evidently the full time bandaging has helped. I seem to have a smidge less edema in my hand. Today I am wearing the sleeve and glove for a few hours so that I can have the use of my hand. Maybe the fluid has begun to move up my arm, because my sleeve feels tight around the elbow. I will bandage again later this afternoon.

Last night I couldn't figure out why I had trouble falling asleep despite having taken pain meds and ativan (lorazepam). In my fogged mind I realized that two of my fingers were numb at the tips poking out of the bandaging. Either I had wrapped too tightly or something was pinching a nerve. At 3 AM I finally realized what was going on and tore off the bandaging as fast as possible. Then with the feeling restored in my fingertips I was able to sleep soundly and when I awoke my hand was not swollen.

Still bandaging

Sorry to let so much time go by, but it's hard to type while bandaged! I've been spending up to 20 hours a day wrapped and can't see any improvement. On the other hand, the edema isn't getting worse either. Given that the first available appointment for manual lymphatic drainage therapy was in January, bandaging is about all I can do. Even if it limits what I can do.

Today I have places to go, things to do so and people to see, so I plan to wear my sleeve and glove (maybe with a second glove on top of the first one). When it becomes more than I can handle, I will wrap again.

Oy!

Lymphedema continues

I still have edema in my hand, despite several days of wearing the sleeve and glove during the day and bandaging at night. So today I wrapped my arm before breakfast and plan to stay wrapped until tomorrow morning. Hopefully that will make a difference. Thank goodness for drugs to help me sleep while bandaged.

I also called the physical therapist and got the earliest appointment available. Maybe I won't need it, but I'd rather have an appointment and cancel than be stuck and unable to get in to see someone.

Click here to read more about lymphedema. I think that after looking in the mirror at one's scars, lymphedema is the worst daily reminder of breast cancer.

Happy Chanukah!

Today was the first day of Chanukah 5769. We celebrated in the usual fashion: lit the chanukiyah, sang the blessings, and ate potato latkes. The whole house smells from fried potatoes!

(Although today was the first day, it was already the second night, hence the two flames in the photo. Well, three if you count the shamash.)

Chanukah is possibly the least important but most widely celebrated Jewish holiday due to it's proximity to Christmas. Rik and I don't exchange gifts but do get together with friends, play games, eat food fried in oil to remember the miracle, and sing. It's the perfect solstice celebration.

On other fronts, we've been snowed in for several days with very un-Seattle-like freezing temperatures and more than 8 inches of snow. I did get out to attend a wedding yesterday (a friend who has chains on her car's tires offered a lift). And our neighbors hosted a block party which everyone attended, since we were all able to walk over.

Chag sameach, wishing us all the best of the season.....

A touch of edema

I went to bed Wednesday night with some edema in my left hand, woke up Thursday morning and it was still there. Since we'd had snow overnight and schools were closed, meaning Rik would be home all day, I seized the moment and wrapped my arm. Bandaging is always my first step in dealing with a lymphedema flare up.

I woke up today with about the same amount of edema in my hand, so clearly I didn't do such a good job of bandaging. I'm wearing a sleeve and glove today so that I can do things (like type), but I plan to bandage again tonight.

Schools are closed again today due to snow. We went for a walk with the dog -- Pumpkin loves going out in the snow! Rik heard a story on the radio about why dogs enjoy snow so much. Something to do with the texture....

After dog walking, we took the car out to the nearby grocery store. Our elderly neighbors needed some things and had asked for a ride. Originally we were going to walk, but after going around the block with Pumpkin we thought it would actually be safer driving than walking home with bags of groceries. We took advantage of the closest store and also picked up my new meds from the drugstore in the same block.

More on Arimidex as I start taking it!

Next treatment: Arimidex

The new spot in my breast is apparently a cancer recurrence. The full pathology report indicates it's highly ER/PR + and Her2/neu negative, as in the past.

My oncologist will start me on Arimidex, the remaining estrogen blocker that I have not already tried. I'll take a pill daily. Dr. G says that stopping the tamoxifen will help anyway, and I may even lose some of the weight it's added to my 5'4" frame. Dr. G also told me the risk for ipsilateral (same side) metachronous (recurrent) breast cancer is about 14%. He thinks the safest bet about the potential lung lesion is that it, too is breast cancer and therefore would likely respond to systemic treatment.

Arimidex (anastrazole) is closely related to Femara (letrozole), which gave me good coverage for about 2.5 years. The side effects are osteoporosis, which would be addressed by continuing me on IV Zometa, and joint pain, for which I'll have pain killers. Who knows? I may get a long enough run on Arimidex that by the time it stops working, something new will come along.

So this is good news all around. I moved up and down on the merry-go-round, but everything is still very treatable. A new drug for a new year....

News on metastatic breast cancer

This might be the right week to change treatments. The annual San Antonio Breast Cancer Symposium
just ended and it's been in the news.

Just look at some of the posters that were presented. These are only a few of the things that may benefit me in the future --

Effective metabolic intervention of breast cancer progression and metastasis

A novel capecitabine dosing schedule combined with bevacizumab is safe and active in patients with metastatic breast cancer: a phase II study

All-oral combination of oral vinorelbine (NVBo) and capecitabine (X) in HER2-negative metastatic breast cancer (MBC): latest results of a multicenter, international phase II trial with a median follow-up of 37.7 months

High dose estrogen as a salvage hormonal strategy for highly refractory metastatic breast cancer (MBC): "back to the future"

SABRE-B: a randomized phase II trial evaluating the safety and efficacy of combining sunitinib (S) with paclitaxel (P) + bevacizumab (B) as first-line treatment for HER2-negative metastatic breast cancer (MBC): final results

The one featuring high dose estrogen has received a lot of press. Read this CNN article for more.

"You've got to have a positive attitude" -- feh!

Today I was interviewed for a short film to be screened at Gilda's Club Seattle's annual fashion show and fundraiser next spring. I attend yoga class regularly. I've been there just about every Friday for the past four years. So I was happy to say yes to the interview request. And to participate in the fashion show. And to help the committee achieve it's fundraising goals. Gilda's Club really is a place where people living with cancer can "come as we are."

But one question today really got me. The interviewer said she thought I had a really positive attitude and that made a difference. I reacted very strongly to this, one of my hot button issues.

Cancer is the only disease I can think of where people say that those of us who've got it must have a positive attitude. Well, there's very little about cancer to be positive about! Having cancer is terrible. No one would choose to have cancer. And those of us who have cancer need to be able to express ourselves. If we feel good, that's fine. But if we feel ill, or the treatments are rough on us, or we're depressed, or we're angry, or you name it -- we need to be able to express those feelings.

It's true that I'm a glass-half-full kind of person, always have been, even with metastatic cancer. But even I have times when I need to cry or rage against the universe for sticking me with this awful disease. It's just that other people usually don't get to see it.

So when someone you know is diagnosed with cancer, don't focus on being positive. Show support, ask how you can help, offer a shoulder to lean on. Let the person living in CancerLand say whatever they need to say. Be strong enough to listen to them, even if (especially if) they need to talk about their fears.

That's what we need from our family and friends.

Biopsy results

Yes, the spot on my left breast is breast cancer. Again.

I saw Dr. Patricia Dawson, my breast surgeon, today to discuss my options. The preliminary biopsy results don't indicate the ER/PR or Her2/neu status, but it's definitely cancer. Those results should be available when I see my oncologist next Wednesday.

Dr. Dawson gave me three options:
1) standard treatment for a recurrence is a total mastectomy; OR
2) a lumpectomy; OR
3) treat systemically (i.e. with medication) to see if the tumor responds by shrinking.

We will let Dr. Sheldon Goldberg, the best oncologist in Seattle, weigh in, and hope that he agrees that option 3 is the way to go. Given the fact that my cancer had already spread (metastasized), Dr. Dawson thinks there is no reason to schedule surgery when a systemic treatment might do the trick. Plus systemic treatment (chemotherapy, anti-estrogen medication) would also have an impact on my metastases. Surgery would not.

I see Dr. Goldberg on Wednesday and will have more information to report then. In the meantime, this is a good outcome -- I don't have to have surgery immediately.

News from Hadassah: ALS PATIENT LECTURES VIA EYE BALL CONTROL

I receive a monthly e-letter from Barbara Sofer of Hadassah. This story brought tears to my eyes. Dr. Melamed- Cohen is so right: no matter what life deals you, "Until the last moment, one has to live and rejoice and give thanks to the Creator."

The late Randy Pausch delivered the now internationally famous Last Lecture, at Carnegie Mellon University before he died at the age of 47. A lecture at the same level of wisdom was delivered recently at Hadassah's Ein Kerem campus. The speaker was Dr. Rachamim Melamed-Cohen, a writer and philosopher, who has suffered from ALS, (Lou Gehrig's disease) for more than 15 years. He's completely immobilized except for his eye muscles. But with technology, he can activate a computer with his eyes and type his thoughts. They are simultaneously translated into a voice-activation program. In the audience were Hadassah medical and nursing students and faculty, including his own doctor, Professor David Michael Linton, who has provided his respiratory care for nine years.

Dr. Melamed-Cohen reminded the future physicians and nurses that people in wheel chairs may be the height of ten-year olds, but they have the mental acuity of grown ups. They want to be acknowledged as more than their medical charts which only list their problems and not their life strengths. "I feel at times that God has allowed me to live in order to show the world that even in such a condition one can continue to be creative and contribute to society," he told the students. "Until the last moment, one has to live and rejoice and give thanks to the Creator."

For more of Barbara's stories, click here.

To subscribe to Barbara's Jerusalem Netletter, send a blank message to Netletter-on@mail-list.com.

And click here for more about Hadassah.

Update

I was a little sore last night (had to sleep wearing a bra to give support to the biopsy site). But today has been fine. I was told to take it easy for 24 hours.

All the usual routine --
Woke up
Checked email
(Took a call from the shul's executive director)
Showered, ate breakfast, walked the dog

Then I went out to buy groceries and run some errands. When I came home it was pouring rain, so I baked some cherry-chocolate chip cookies and caught up on some volunteer work. All in all, a typical day.

I expect to get the biopsy results on Thursday.

Biopsy today

I had the biopsy today. I took 0.5 mg ativan beforehand to reduce stress and was I glad I did! My blood pressure taken just before the procedure was 140/76, unusually high for me. Taken again immediately afterwards it went down to a more typical 110/70. Dr. Kelly talked me through the whole thing and Rik was there for emotional support.

First the nurse took my blood pressure. Then Dr. Kelly draped my left breast with sterile cloths and did an ultrasound of the area. She gave me a lot of lidocaine to numb any pain. Then she isolated the right spot through the ultrasound and using a hollow core needle, took a sample of tissue to send to the pathologist. Actually she took two samples. She warned me I'd hear a snapping sound -- I involuntarily flinched a bit but not enough to cause any trouble. Then she placed a tiny metal marker near the biopsy site under my skin. I had a mammogram to confirm that it was placed, got dressed and we went home.

I promptly fell asleep for a couple of hours. Now I'm sore but that's what pain meds and ice packs are for. I get the results on Thursday.

Encore presentation of "my left hand"

Jewish Family Service will host another presentation of my friend Joshua Isaac's film, my left hand, on Thursday, January 29th. They are partnering with our synagogue, Congregation Beth Shalom.

Tickets are now available through Brown Paper Tickets.

my left hand: A film by Joshua Isaac
Thursday, January 29, 7:00 pm
Congregation Beth Shalom
6800 35th Ave NE, Seattle
1-800-838-3006 or www.brownpapertickets.com

Josh's parents were long-time members of Beth Shalom and he was raised in this community. Now as an adult he's an active member, raising his kids in turn. You can catch up on Josh's journey with advanced epithelioid sarcoma on his blog.

Today's tests

Today I had a mammogram and ultrasound of the left breast. When the radiologist said, "Do you want to do the biopsy today also?", I asked how long it takes to get the results. She said to expect 2-3 days.

As it happens, I have a major fundraiser I'm working on taking place this weekend, so I would prefer not to be distracted about waiting for a pathology report. So I decided to postpone the biopsy until next week.

The Breast Center staff were very good about working with me to set up appointments. First we got on the surgeon's calendar for next Thursday. Then, working backward, we scheduled the biopsy for next Monday. The pathology report should be back from the lab in time for the appointment with the surgeon.

IF the pathology report is positive for cancer, I'll be perfectly positioned to talk about options with my breast surgeon.

And IF the pathology is negative for cancer, the nurse will call me and we can cancel the surgical consult.

Either way it's a win-win for me: I get the information in a timely way and get to make treatment choices right away.

Ultrasound and biopsy

Tomorrow I will have the ultrasound and biopsy for the suspicious spot on my left breast. Dr. Mary Kelly did my first biopsy more than nine years ago in 1999. I like her and was glad she was available. She works at the Swedish Medical Center's Comprehensive Breast Center at the Cherry Hill campus, where I received treatment for that first round of breast cancer. I'm comfortable there, know and like the staff. It's where I continue to get my mammograms.

How am I coping? I am scared that this might be a new primary cancer. Of course, if it is, and if it's breast cancer, I've already been through that treatment -- surgery, chemo, maybe radiation (but I'm not sure they can re-radiate the same breast). And if it's not breast cancer, according to my cousin the oncologist, it might be nothing. A friend told me there is only a 3% chance of developing a new cancer in the same breast. The American Cancer Society says,

A woman with cancer in one breast has a 3- to 4-fold increased risk of developing a new cancer in the other breast or in another part of the same breast. This is different from a recurrence (return) of the first cancer.

More news when we get the results, which might take a week.

Overslept again

It is so much harder to wake up at 6 AM in the fall and winter than it was in the summer! This is the second week in a row that I have missed attending morning minyan to say kaddish for my dad.

Last night I reviewed the correct Hebrew spelling of my dad's name with my sister. Last week she and Mom ordered a monument and we will have the unveiling in the spring. Dad's stone will have his Hebrew name (Shimon Shir ben Zalman haKohen) and his English name (Sheldon Charles Cohen).

Because Mom ordered a double headstone (always thinking ahead, my mother), there will be room to add her name, may that day be many years in the future.

And between the names, since my dad was so proud of being a Kohen, there will be an etching of two hands placed as though blessing birkat hakohanim.

Dad would like that. Zichrono l'vracha, Poppy -- may your memory be a blessing. We miss you.