More on Charisse

From my friend N, who knew Charisse when she was Rabbi Kranes at Seattle's Temple de Hirsch Sinai:

I think I told you this before...but I don't know if I told you this part....that I am recalling more clearly.

When C. was rabbi at De Hirsch and she was ill, I decided to help her at her home, which is something that felt like a big step for me because I did not know her and had never met a female rabbi. I was so sad that I would be losing a role model just as she was getting her stride at the temple.

When I got to her house, she was on the phone. She said she was on the phone with her best friend named Jill. I wondered who that was and I remember the feeling of wanting a close friend just like what I saw. She was on the phone the whole time I was at her house. I don't think she and I said anything more...I just did what I came to do, which was a chore or something like that. I was a bit disappointed that my new role model was on the phone, but as she was sick, I did my mitzvah and left.

Now all these years later I feel connected to her and deeply connected to you, as I was a kind of a witness to your friendship and to how much you meant to her.
I remember her sitting on her sofa and talking on the phone, deeply engaged. I am sure it was you, because I remembered the name Jill and the fact she was on the phone with you for probably one hour.

Thanks you N for recalling this memory of Charisse for me.

Charisse's yahrzeit

Even after all these years, I still find it hard to believe that my dear friend is dead.

Both my grandfathers died young, but after marrying, having children, and celebrating their children's marriages. (I'm named for one and my sister, for the other.) One grandmother died in her 60s, the other in her 80s. My father lived a long, full life and died a week short of his 81st birthday.

But Charisse? She was only 32. She'd recently married, despite her cancer diagnosis. She didn't live long enough to have children.

If I feel guilt in life, and Jews and guilt often go hand-in-hand, it's for the time Charisse asked me to fly to Seattle and take care of her when she was in chemotherapy. I didn't really understand what she was asking. I pleaded a busy schedule, no money, no time.

I might have been young and stupid, but I still feel guilt over not having made time with Charisse when she needed me. Dear friend that she was, I don't think she held it against me. And the last time we spoke, I did understand that she was dying, and that I'd been given a rare opportunity to say goodbye.

Charisse had faith. She died with that phrase on her lips: "I have faith." I don't know what she had faith in. Maybe it was in human nature, that we can, when we understand the nature of the situation, do the right thing. Or maybe she had faith in the universe that gave her the chance to say her goodbyes.

I'll never know what Charisse really believed. But I can follow her example, and tell those near and dear that I love them, every chance I get.

Zichrona l'vracha. May her memory be for a blessing to all who knew her.

Tired and happy

The weekend of singing has concluded.

Saturday's performance of Croatian songs at the NW Folklife Festival went well, although I had a huge brain fart. Our first number was a medley of two songs, and I am supposed to lead the second song. We finished the first song, and there were a few moments of silence, when suddenly our director D whispered to me, Jecam zela (the name of the second song). I looked back at her blankly, as if to say, "What's that?" Then H began to sing and my brain clicked into gear -- that's my solo. Oops! I rose to the occasion, the whole thing likely only lasted 20 seconds, and the rest of the set continued.

We also sang in the Croatian choral piece Ladarke. One minute before we were supposed to walk on stage, that director told me her soloist has been throwing up backstage and I should be ready to sing the solo lines (which I've done before, but still... on a minute's notice?). I told the director of course I would fill in if needed, not to worry. Thankfully the soloist was fine, I kept my eye on her, and she went on as planned.

"Arty" photo of Dunava under the lights

On Sunday we participated in the Bulgarian showcase. We joined with the local Bulgarian Voices choir in singing a popular Bulgarian tune about missing the homeland. Later on we performed our own short set of four songs. I know this audience wanted more from us, because they were cheering even as we walked onto the stage.

Then Rik took my mom home and I stayed on to dance. A friend from Dunava and I went to the Scandinavian dance where we did a lot of polkas, a pols, a swing dance and a waltz.  On the way over many people recognized us in our Dunava garb and gave us compliments on our singing.

After the Scandi dancing we ate shish kebab all the Balkan dancing started. I danced until my feet were even more numb than usual. It was huge fun to dance, to sing, to talk with friends who I might only see once a year, and to whoop and holler from the sheer joy of carrying on with hundreds of other people who all enjoy the same Balkan music and dance.

Today was the second day of Shavu'ot. Rabbi B had asked me to chant yizkor, the memorial service. When I agreed I didn't realize how much singing I had to do at Folklife, but it all worked out in spite of my late night dancing. However, I did have to sing in my lower range this morning. Rabbi complimented me and told me she'd like me to learn yet another part of the worship service. I think festival musaf may be in my future.

PET scan

I had a PET scan today to determine the effectiveness of the 30 days I have been on the  Afinitor+Aromasin+Faslodex combo. It meant getting up too early, not having breakfast, and not even being allowed to listen to music after drinking the barium solution and getting the radioactive dye. This last was because I also had a PET brain scan, and they wanted no interference with that, even from listening to music. Instead I took a 45 minute nap, followed by another nap while on the scanner bed.

Then I went off to Cafe Presse for my favorite post-fasting breakfast: omelette with sautéed mushrooms, salty and crunchy frites, and a cup of hot chocolat chaud served with freshly shipped cream. Plus lots of water, to flush the radioactivity out of my body. It's just about the best meal I know.

I get the results of this scan next Thursday when I see Dr G, and at that time we will either stay with the current combo or determine a new course of treatment. In the meanwhile, I have lots of singing and dancing to look forward to at Folklife, plus a visit from my mother. (That will likely include some shopping as well. What could be better?)

Singing, singing, singing

My life has been chock full of song. Over the weekend my choir, Dunava, sang as guests of City Cantabile Choir. On top of those concerts, we rehearsed for Folklife. I also ran the synagogue's annual meeting Sunday morning. I was pretty pooped by the end of last weekend.

Now Dunava is preparing for the NW Folklife Festival, where we're singing in both the Croatian and Bulgarian showcases. You can hear us in Croatian on Saturday around 1:15 PM in the Exhibition Hall and in Bulgarian on Sunday around 4:15 PM in the Bagley Wright Theatre. I recommend arriving early, since last year's Bulgarian showcase had a one hour wait to get into the theatre.

As always, Folklife is free. If you attend, I encourage you to give a $10 donation each day you'll be at the Festival. That's how we can keep this great tradition free for a long time to come.

Sunny Seattle

No, that's no oxymoron. The sun has been shining for days on end. Today was a bit cooler, so I went out into the garden to spread bark mulch, set up the short fence to keep Bobka out of the strawberries, and weed, weed, weed. This took up most of the day. Each garden component was separated by calls to insurance companies, walking the dog, and lunch. My back hurts a bit but it's the good hurt that comes from doing something worthwhile. As a mest-sister friend posted on Facebook today, there must be something to all that vitamin D!

Afinitor update

My health insurer not only agreed to cover the Afinitor, the copay is only $20!

So far no side effects evident. I've been taking the Afinitor samples for about two weeks. Let's hope it works big time….

Madama Butterfly

Rik and I went to the third in our series of operas this year. (Three operas for $99 a ticket? That's a no-brainer.)

We saw Attila, Orpheus et Eurydice, and this week the crowning glory of Madama Butterfly. It was an opportunity for me to wear my antique Japanese michiyuki. It's a raincoat meant to be worn over a kimono. I would have bought a kimono, but really you have to wear all the pieces to look proper, and that was more than I could afford. So I bought the michiyuki and wear it over a black top and tights.

364 days of the year it hangs on a wall as art, but once a year I like to actually wear it. I wasn't the only woman so dressed at the opera this week....

Drug approved

Dr G's office called to say that my health insurance company, Premera, approved my receiving Afinitor! I don't know what the copay will be. The pharmacy hasn't had a chance to contact Premera yet. But still…. way to go, Dr G!

Sunshine helps

I don't know if it's the StressArrest, the fact that I finished a big volunteer project which I'd been avoiding, or two days of sunshine, but my mood has improved and I feel better. Last night's volunteer ushering at a performance of Damn Yankees probably didn't hurt either -- theatre is great for taking one's mind off of troubles.

Today I met with my shrink, Dr Dobie, who I hadn't seen in more than a year. It felt good to unburden myself to someone with good listening skills, not a friend or relative who would be emotionally involved, and to get her full attention. I mean, I love my support group and go every week, but I have to share the forum with 8-10 other people who all have their own issues. She is going to talk with Dr G before prescribing an anti-depressant, to be sure that nothing would interact badly. Dr Dobie also reminded me that avoidance produces its own stress and anxiety. I may have inadvertently increased my stress by avoiding that big project for so long.

I also spent an hour working in the garden. Rik has carted over lots and lots of cedar chips from the remains of a neighbor's tree (with permission) and I have now barked the entire raspberry bed, the chester berries and the grape arbor. That leaves weeding, fertilizing and barking the strawberry patch, and coming up with some kind of idea to keep weeds from growing in the shade area we just planted. Plus the everlasting hunt for dandelions.....

I cooked a delicious dinner of roasted arctic char and cauliflower and potatoes seasoned with gram masala, salt and a little cayenne pepper. It's been too long since I posted about food. Things must really be looking up.

I had a dream

To quote from the Broadway show "Gypsy" --

I dreamed I was watching pieces of my life being boxed up and thrown out. First I was in the hallway, saying that I needed those boxes, don't move them. Then I was outside watching belted trunks begin tossed around.

I think this is both emblematic of the stress I feel and a reaction to the way cancer appears to be taking over my life. I almost said taking over my life again, because of course this has happened many times over the past nine years. In stead of sitting quietly on a merry-go-round bench, I'd suddenly be thrust upon a pony, hanging on for dear life while it went madly up and down.

I'm not much on dream interpretation. Are the boxes parts of my life I've had to give up? If so, hat are they? I'm still singing an I even danced last weekend. I thought I gave up on the parenting dream years ago. My health is what it is; sometimes I feel okay, sometimes great, sometimes like crap.

Maybe the boxes represent giving up hope that I could continue to ride the metastatic breast cancer merry-go-round even longer than I already have. I confess that I feel my mortality even more so this past week than in recent months. Learning that I have new mets everywhere was daunting. There just aren't too many treatment options left to me.

Dr G says that one just has to live long enough for the next new thing to come along. That next new thing may likely be Afinitor, presuming the FDA approves its use in metastatic breast cancer.


(Pertuzumab is a different drug. You may have heard about Darlene Grant, the woman with mets who believes that pertuzumab could extend her life and appealed via YouTube for compassionate use. Pertuzumab is designed to treat HER2neu+ cancer. We'll see what the results of yesterday's biopsy show, but my cancer has been HER2neu- until now.)

** Today's update on Afinitor: Dr G's nurse says that he had the peer to peer review with my health insurance company and then asked her to contact Novartis, maker of Afinitor, for more information. Rik also faxed my application to Novartis for financial assistance in receiving Afinitor.

Quick update

It's been doctors, doctors, doctors for days now.

Today I saw the dermatologist, who took biopsy samples from the scalp lesion (which was biopsied in 2010, but has regrown) and from a mole on my right breast. He thinks the odds of the mole being melanoma are small, but still... The scalp biopsy was my idea. It's possible that my cancer has changed from highly ER+/PR+ and Her2 neu negative. The last time we did this, in 2010, nothing had changed. But still my cancer had stopped responding to the estrogen blockers. Retesting has the potential to give me more treatment options.

Then it was off to see the naturopath, who didn't change my supplements but recommended StressArrest (mostly niacin and pantothic acid, from what I can tell). My stress level has been climbing and I might be on the verge of a depression.  I also left a message for my shrink.

Yesterday's medical trip involved unclotting my port. On Monday I went to the UW Hospital to give a blood sample for genetic testing for the BRCA 1 and 2 genes. (Again, I was tested in 2002 and came up negative, but the technology has improved in the interim and the test is evidently more sensitive now.) The nurses there were unable to get blood return from my port, and I didn't have time to come back at 4:30 PM for a few hours while they gave me alteplase to dissolve a clot in the port. So on Tuesday I went to Dr G's office. The nurses couldn't get good blood return either on the first try, so they gave me alteplase and voila! two hours later, I was fine.

I also learned yesterday that Dr G was scheduled to participate in a peer to peer review of my need for Afinitor (everolimus) and why my insurance company should pay for it. I haven' heard the results of that call, but interested parties can read about the study confirming its efficacy here. (This link may be for subscribers only, but you can google the title: "Everolimus in Postmenopausal Hormone-Receptor–Positive Advanced Breast Cancer.")

All this medical makes me stressed. Yesterday's therapy was to get in bed at the end of the afternoon and pull the covers over my head (denial). That didn't work too well. This afternoon I worked in the garden for an hour or so (avoidance). Pulling weeds was more therapeutic, but I still wonder if I am on the verge of depression. Tonight I sang with my choir Dunava and that was the best medicine of all. Singing lifts me out of myself.

Now I am tired but it's a good tired. On to more tomorrow.