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.