November 30, 2012

How they said goodbye to Gilda Radner

I came across this today on Facebook (thanks, Chemobabe!) and knew I had to share it with you.

From HuffPost Comedy, 2 January 2012

“Gilda got married and went away. None of us saw her anymore. There was one good thing: Laraine had a party one night, a great party at her house. And I ended up being the disk jockey. She just had forty-fives, and not that many, so you really had to work the music end of it. There was a collection of like the funniest people in the world at this party. Somehow Sam Kinison sticks in my brain. The whole Monty Python group was there, most of us from the show, a lot of other funny people, and Gilda. Gilda showed up and she’d already had cancer and gone into remission and then had it again, I guess. Anyway she was slim. We hadn’t seen her in a long time. And she started doing, “I’ve got to go,” and she was just going to leave, and I was like, “Going to leave?” It felt like she was going to really leave forever.

So we started carrying her around, in a way that we could only do with her. We carried her up and down the stairs, around the house, repeatedly, for a long time, until I was exhausted. Then Danny did it for a while. Then I did it again. We just kept carrying her; we did it in teams. We kept carrying her around, but like upside down, every which way—over your shoulder and under your arm, carrying her like luggage. And that went on for more than an hour—maybe an hour and a half—just carrying her around and saying, “She’s leaving! This could be it! Now come on, this could be the last time we see her. Gilda’s leaving, and remember that she was very sick—hello?”

We worked all aspects of it, but it started with just, “She’s leaving, I don’t know if you’ve said good-bye to her.” And we said good-bye to the same people ten, twenty times, you know.

And because these people were really funny, every person we’d drag her up to would just do like five minutes on her, with Gilda upside down in this sort of tortured position, which she absolutely loved. She was laughing so hard we could have lost her right then and there.

It was just one of the best parties I’ve ever been to in my life. I’ll always remember it. It was the last time I saw her.”

- from Live from New York: an Uncensored History of Saturday Night Live

“Gilda got married and went away. None of us saw her anymore. There was one good thing: Laraine had a party one night, a great party at her house. And I ended up being the disk jockey. She just had forty-fives, and not that many, so you really had to work the music end of it. There was a collection of like the funniest people in the world at this party. Somehow Sam Kinison sticks in my brain. The whole Monty Python group was there, most of us from the show, a lot of other funny people, and Gilda. Gilda showed up and she’d already had cancer and gone into remission and then had it again, I guess. Anyway she was slim. We hadn’t seen her in a long time. And she started doing, “I’ve got to go,” and she was just going to leave, and I was like, “Going to leave?” It felt like she was going to really leave forever.

So we started carrying her around, in a way that we could only do with her. We carried her up and down the stairs, around the house, repeatedly, for a long time, until I was exhausted. Then Danny did it for a while. Then I did it again. We just kept carrying her; we did it in teams. We kept carrying her around, but like upside down, every which way—over your shoulder and under your arm, carrying her like luggage. And that went on for more than an hour—maybe an hour and a half—just carrying her around and saying, “She’s leaving! This could be it! Now come on, this could be the last time we see her. Gilda’s leaving, and remember that she was very sick—hello?”

We worked all aspects of it, but it started with just, “She’s leaving, I don’t know if you’ve said good-bye to her.” And we said good-bye to the same people ten, twenty times, you know.

And because these people were really funny, every person we’d drag her up to would just do like five minutes on her, with Gilda upside down in this sort of tortured position, which she absolutely loved. She was laughing so hard we could have lost her right then and there.

It was just one of the best parties I’ve ever been to in my life. I’ll always remember it. It was the last time I saw her.”

- from Live from New York: an Uncensored History of Saturday Night Live

Hopped up on steroids

I am on day two post-chemo and have been on dexamethasone (Decadron) since my eribulin infusion on Wednesday. This is the steroid that makes me a little hopped up (hah, a litle).

Yesterday I ran a couple of errands, did three loads of laundry, participated in a 90 minute conference call, baked a pecan pie for  Shabbat, made dinner for Rik and I, and hosted rehearsal for my choir. I had to take Ambien to get some sleep even after relaxing for an hour after rehearsal.

Today I went to Dr G's office for my Neulasta shot (to boost my white blood cell count), met a friend for some fun, came home and started more laundry and am now blogging. In a few hours we will go to friends for Shabbat dinner and bring the aforementioned pecan pie along with coffee flavored whipped cream.

My feet hurt, I feel stressed from the steroids, it's impossible to relax. I will try to cuddle with the dog and read a bit while the laundry does its thing. Maybe the Ativan I just took will help me calm down.

November 27, 2012

Avastin today and years since diagnosis

My dose of Avastin today went very smoothly. Dr G heard me shmoozing with my friend J and said through the drawn curtain, "Is that Jill?" He came over for a short visit and we caught up over how well I feel, despite my increasing hair loss (as he says, "Well, that's not surprising") and painful neuropathy in my feet.

I asked him again about his other patient, the one who's lived with breast cancer for 24 years. This time I was sure to ask if this time period was since her initial diagnosis or her metastatic diagnosis. Well, the 24 years is since her first diagnosis. It made me feel even more confident in having chosen Dr G as my oncologist 14 years ago.

I don't know anything about this woman, not her age at first diagnosis nor anything about her condition now. I was 39 at first diagnosis and I'm now 53. I look forward to turning 54, 55 and older under Dr G's care. If this other woman can live 24 years with breast cancer, then I can do the same and longer. As we Jews say about birthdays, until 120 years.

And as I a;ways say, I should live so long.

November 26, 2012

Eribulin side effects

This is a quick reality check on actually living with cancer and chemo side effects. Be prepared.

Even on this lowest dose of eribulin, I have begun to experience more significant side effects. I was constipated all weekend, which I thought was due to too much turkey and stuffing and not enough fruit and vegetables, but turns out is prevalent in fewer than 29% of people taking eribulin. I always keep some Senokot-S® on hand (it contains senna, which helps move the bowels) and it helps soften stool.

My hair has begun to come out. I think this was true of 45% of eribulin patients, and clearly I am in that group. It started thinning a few days ago, so I had it trimmed to be more even. This morning in the shower, much more hair came out that in the previous days. Since I get the next chemo dose on Wednesday, by next week I might be pretty much hairless. Thank goodness I had those eyebrows tattooed! At least I won't look completely like a bald egg (or a male version of myself with a significantly receding hair line).

The neuropathy in my feet has gotten a bit worse but not terrible, except late at night. I think I am more aware of it at night because I'm not as busy. Reading a book, watching TV or snuggling with Rik and Bobka don't distract as much from the pain and numbness in my feet as doing chores or cooking.

On the glass half full side, the sun is shining today and Bobka and I walked 20 blocks to the bank and drug store despite my neuropathy. It was lovely to be in the sun after some torrential rains this past week, and I am glad that I didn't let the pain in my feet stop me.

November 24, 2012

Gobble gobble

We enjoyed a lovely Thanksgiving meal with our good friends G and D and others. Everyone brought delicious food, lively conversation and a spirit of well-being to the table.

What am I thankful for this year?

As always, that I have lived ten-plus mostly very good years with metastatic breast cancer.

That I have the continuous love and support of the best husband on the planet.

That my family and friends try hard to understand how tough living with advanced cancer can be, and that they understand when I need to talk about it and when I need to just be a regular person.

That my medical care team respects me as a person -- Dr G and all my doctors, nurses, and their administrative support staff. To them I'm not a disease or diagnosis; I'm me.




And last but not least, that I have the unconditional love of Bobka the dogka, who always knows when I need a cuddle and snuggle.

November 20, 2012

The rest of the birthday celebration

On Friday night we enjoyed Shabbat dinner with friends. Their young daughter made me a card and a small paper lantern "lit" with carnation flower. It was a sweet way to celebrate.

Saturday morning saw me in synagogue, feeling well enough to lead the musaf service as planned. There's something very powerful and satisfying about standing in front of the congregation, with my back to them. I can't see them, but I can hear their voices lifted in song along with me. Leading the congregation in prayer has got to be my favorite synagogue activity.

That night our inner circle of friends got together at one home for a potluck dinner and birthday party. We noshed on nuts, cheeses and crackers, focaccia, and a bottle of champagne. Then we went to the table for Moroccan vegetable stew with quinoa, broccoli and leek quiches, green salad, more talking and more wine.

Our friends from Vancouver were in Everett for a kid thing and drove to Seattle in order to see us. They arrived in time for dessert. I had picked up a yummy selection from Whole Foods including mini cupcakes and tarts in chocolate, vanilla, lemon, key lime and salted caramel; a couple of eclairs; a fresh fruit tart and a small apple pie. In addition we had Graeter's chocolate-chocolate chip ice cream, Fran's dark chocolate sauce, more mixed nuts, pomegranate seeds both fresh and covered in chocolate, and chocolate covered ginger. Of my four personal food groups (champagne, chips, chocolate and whipped cream), only the whipped cream was in short-ish supply on the eclairs and the mini tarts.

Sunday's festivities featured a clothing exchange with about ten friends. We had all picked from our closets the items we no longer wear, or don't like, or that don't fit properly any more. Everyone contributed, and everyone went home with something. You should have seen R in a slinky one-shoulder black velvet gown. Just about everything looked good on N. S was particularly helpful in saying if something really flattered or wasn't worth keeping. Even a couple of teenaged daughters ended up with stuff they loved! I think I ended up with the best bargain: a grey cashmere dress with short sleeves by designer TSE. It looks kind of like this item from the TSE spring 2010 collection. The remaining clothing from our exchange will go to another clothing exchange, and the final bits will go to the Lifelong AIDS Alliance thrift store.

Now the birthday celebrations have ended and it's time to pick up some projects I've avoided lately, prepare for Wednesday's chemo cycle three, and get ready for Thanksgiving!

November 15, 2012

Good news

The eribulin is clearly working. My CA 27.229 tumor marker fell by more than 100 points! This is exactly the kind of reaction Dr G and I hoped to see.

The next step will be to reduce the eribulin dose once more (to the lowest of the three options), because the neuropathy in my feet has increased dramatically. In the morning I now feel numb all along the toes, the balls of the feet, and the outside edges of each foot. (Previously I didn't have any symptoms in the morning.) By 4 PM I have that pins-and-needles feeling, which soon progresses to full numbness and more pain by evening. Hence Dr G wants to try reducing the dosage to see if the eribulin will still be as effective but less toxic. I agreed to try for one more cycle.

Also, today is my 53rd birthday. Rik bought me red roses, Bob snuggled with me, and I managed to do a little shopping. But what did I really do today? Go to the doctor and get good news!

I'm already looking forward to turning 54.....

November 13, 2012

Veterans Day


I maybe one day late, but still wanted to post about my dad the veteran.


Parents and proud soldier
Sheldon Charles Cohen, z"l, (may his memory be for a blessing) began his service in WWII at 17. He lied about his age to enter the Army Corps of Engineers, and spent the war driving trucks all over Europe. It was his grand youthful adventure. He never saw action or fire, and returned home safely to marry my mother and run the family seltzer business (hence all that truck driving). 

If I had a US flag, Dad, I'd be flying it in your honor and memory. You served your country proudly.

And my sister reminds me, "He also peeled a lot of potatoes!"

November 11, 2012

Another anniversary

It turns out yesterday was the 40th anniversary of my bat mitzvah! I went to shul knowing that the week's portion was Chayyei Sarah (the life of Sarah), which was my bat mitzvah portion. I arrived early enough that the Kohen aliyah was still not taken, and the gabbai offered it to me.

I went up to the bimah to tell Rabbi Borodin that today's was my bat mitzvah portion, and she immediately asked how old I was. I told her I was going to be 53 next week, and she said, "It's the 40th anniversary of your bat mitzvah!"

When I went up for my aliyah, Rabbi B had prepared a mishebayrach for this occasion, also asking for blessings for good health. She even remarked to the bat mitzvah girl, "This is where you could be in 40 years!"

I called my mother after services and we had a nice catch up about favorite memories from my bat mitzvah. The memory that leaped to my mother's mind was my little sister turning around to say to my mother, "Look, Aunt Edol is finally here!" (Edol is chronically late to everything.) My mother also praised me for doing such a good job on that special day so long ago.

All in all, it was a lovely and most unexpected concatenation of Jewish moments.


November 09, 2012

Reduced steroids

Dr G agreed that yesterday I was flying too high ("defying gravity..." to quote Stephen Sondheim). He reduced my steroid dose from 12 mg to 8 mg daily through Sunday. I am still whirling with energy.

Even though I took Ambien at 11 PM, I woke up at 4 AM and about an hour later, after Rik got up, I still hadn't fallen back to sleep. I took some Ativan, which helped me relax again and I slept until 8:00, my more usual hour. After breakfast Bobka and I walked to the pharmacy, about 22 blocks total. I came home to a visit with D, who chatted while I baked Smitten Kitchen's delicious bittersweet chocolate pear cake, substituting apples this time and adding Theo's chocolate nibs as well as chocolate pieces. Last time I overbeat the eggs and burned the brown butter a bit, plus I used a larger-than-called-for cake pan. This time the butter and eggs were perfect, but I subbed a smaller pan and part of the batter overflowed onto the oven floor. So I had to turn the clean cycle on to burn off the burned chocolate and fruit. I nibbled on the cake edges with my other visitor S, and we agreed the cake is delicious.

I've done two loads of laundry with a third on the way. The dishwasher is full and working. A pot of ginger tisane is simmering on the stove top. I made the bed. I did a little business, and scheduled the recheck on my eyebrow tattoos. (They have softened and look terrific!)

And it's only 2:15 PM. I will try to lay down on the sofa but I doubt I'll be able to relax. Perhaps my book calls....

This is what life is like for me on steroids.

November 08, 2012

Day 1 post-chemo cycle 2

Wow, that title was a mouthful!

Yesterday I received the second dose of the second cycle of eribulin. All went incredibly smoothly and I was in and out within 90 minutes. The lab was fast, the pharmacy was fast, even the drips were fast! And my nurse was so on the spot with her timing, she scooted into my area just as the beeper went off. I had a great visit with T again, and we waxed philosophic on cancer, the recent US presidential election, and our deepening friendship. Shared burdens do make for increased closeness, in my experience.

Dunava came to my house for rehearsal last night, which I greatly appreciated, as my feet were truly talking to me about the neuropathy. The feeling is more intense than two weeks ago: burning, painful, numb, although it hasn't spread beyond the last area to be affected in my toes. The lack of spread may be due to the Cymbalta I started a few months ago. It's hard to tell.

At any rate, Dr G says he will consider reducing my eribulin dose again, or consider changing the dosing schedule, but first he wants to know how well this chemo is working. He won't keep me on it if it becomes intolerable. I'm a compliant patient --I  will keep him informed.

Today I went in for my shot of Neulasta, to boost my white blood cell count. I asked the nurse if she would consult with Dr G about my taking four days of steroids instead of only three days post-chemo. Normally Saturday would be my last dose of steroids. On Sunday afternoon I am supposed to be interviewed for a video at our synagogue, and on Sunday night Dunava has our first recording session for our new CD. I want to have energy for both events, and I'm afraid that if I don't take the steroids on Sunday, I will crash too hard. The nurse says it's okay to take one additional dose of steroids, and will confirm with Dr G.

Deb Perelman, aka "Smitten Kitchen"
Speaking of steroids, I am clearly flying! I was up until midnight last night, surfing online (but NOT shopping!). I awoke today at 7 AM, an hour earlier than usual, practically vibrating with energy.

I met my friend G at a book signing for our favorite cooking blogger, Deb Perelman of Smitten Kitchen, who just had her first cookbook published, The Smitten Kitchen Cookbook. ( haven't read it yet, just paged through a copy while we listened to Deb talk. She's as funny in person as online!) Afterwards we ate lunch at The Continental (avgolemono soup and a shared platter of dolmades, olives, feta cheese and their terrific Greek pita). I went for the Neulasta and to my support group.

I'm still vibrating with energy, but my feet hurt, so I'm going to put them up for a bit and snuggle with Bobka. I do have a shul meeting this evening, and hopefully will still have energy to get out tonight.

Gotta love those steroids!

November 05, 2012

I was so BORED

Yesterday I was so bored I thought I'd drive myself crazy. I wanted to be prepared for a post-steroid crash, similar to what happened with the first dose of eribulin, so I cancelled our volunteer shift at a local theatre. But I didn't schedule anything to replace it, and I made myself stir crazy with boredom.

I couldn't concentrate on reading my book.
I couldn't nap.
There was nothing to watch on TV (except cooking shows and sports).
I didn't have enough energy to walk the dog.

What I should have done was call a friend or run an errand. Instead I did some laundry and emptied the dishwasher. It was most emphatically not enough.

On the Meyers-Briggs Type Indicator (MBTI)*, I am pretty far on the extravert side of the scale. Not as far as Rik, but pretty far. That means I get my energy from being with people (unlike introverts, who get their energy from being alone). If I spend too much time alone, I get cranky. Yesterday I was supremely cranky. I didn't begin to feel better until I went to my voice lesson and my teacher D gave me tea, gingerbread and sympathy.

Of course, my feet hurt as well. The neuropathy has increased since last week's eribulin. It feels more intense, although it  doesn't seem to have spread beyond the current area at my toes.

Still, between the boredom and the neuropathy, I think I won a "prize" for crankiness. Thankfully my wonderful husband has tremendous patience. He put up with my bad mood, took me out to dinner and commiserated when nothing tasted right after a few bites. After we got home and I cuddled up in my pajamas, robe and blanket, I took some Ativan to get the edge off and Rik and Bobka the dog snuggled with me. Soon all was almost better.




* If you really want to know, I consistently test as an ENFJ on the MBTI.

November 02, 2012

Eribulin cycle 2

Even though I only had one dose of eribulin on cycle one, I am calling this cycle two.

My counts on Wednesday were all normal, so I received the lowered dose of eribulin. The first dose had been 1.5 mg/m2; this was 1.1 mg/m2. If needed, there is even a lower dose available.

I'm on day two post-chemo, and the steroids are keeping me well. I've had plenty of energy to run errands, spend part of the day with a friend, cook dinner, etc. We did ask for and received an invitation for Shabbat dinner tonight. (Actually two invites, thanks P and R, but first come, first served or in this case, first guested.)

My eyebrows feel a little itchy but I'm trying hard not to scratch and to apply more Vaseline instead. They still look great and I am very happy I did the cosmetic tattooing.

I'm about to lie down for a nap or at least a cuddle with the dog before Rik comes home.

PS I reinvented my favorite hot drink from the old Gravity Bar on Seattle's Capitol Hill -- the Hot Gregory. Part ginger tea, part apple cider (thanks R and D!) diluted with 50% little hot water. So delicious on a cool day!

November 01, 2012

Eyebrows!

I promised an update on the tattooed eyebrows!

A few months ago I started researching cosmetic tattooing. I had gotten so tired of my sparse eyebrows and having to brush on brown eye shadow every morning just to give my face a "frame." I didn't want  to go through chemo again if losing all my hair made me look like a bald, egg-shaped space alien every morning to myself.

One day, while walking along 45th Street in Wallingford, Rik and I came across Radiant Med Spa. They were just closing, but the esthetician who does the cosmetic tattooing was happy to talk with me for a few minutes. She explained the procedure, told me she had already worked with cancer patients, and that she offered a 50% discount to cancer patients. I took home a brochure and thought about it some more, for a few months at least.

About three weeks ago I decided I wanted to do it. If I was going to lose my hair to the eribulin (only 45% chance, but still), I wanted the tattooed eyebrows. Dr G gave permission, provided I waited until he said it was okay. Last week, when I had a kidney infection and couldn't get chemo, he gave the go-head. and sent an approving note to the spa

On Tuesday I showed up at the Lynnwood location for my tattoos. Dawn Hunter, the esthetician and chiropractor who I had met earlier, was ready for me. She was very capable and extremely good at listening to my suggestions about how to improve her cleanliness procedures for my compromised system (washing every time before gloving, giving me a clean blanket straight from the wash, etc.). Dawn first tweezed my brows, then drew on the shape she intended to tattoo. She numbed the area with a topical lidocaine mixture and re-applied it as necessary throughout. I felt a buzzing sensation from the needle and an occasional zing, which was when she'd apply more numbing meds. She mixed two colors: a dark brown and a reddish tint. After she'd done most of the work, she handed me a mirror (first cleaned with an alcohol solution, what a gal!) and I had a look. We agreed on some tiny tweaks, but the shape but basically fantastic, as you can see.

I am not to pick at the scabbing for two weeks and place Vaseline across each brow twice a day to keep the skin moist while healing. The shade will lighten during this time as well, but it's already the same color as my hair and lashes. (I just don't have a lot of lashes anymore.)

All in all, I am extremely satisfied and would recommend Dawn Hunter at Radiant Med Spa to any cancer patient who wants to look like him- or herself while undergoing chemotherapy.

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I dance with cancer. Oy!