The "package" is off

Mom left this morning after a week's visit. We had a good time together, even though in retrospect I can't recall that we did anything special.

Well, we did go out with many friends for our annual Chinese food extravaganza on December 25th. And then they came over (and more of them showed up) for dessert and shmoozing. That was really fun, and I was exhausted after spending five hours with everyone.

We three also saw the movie of "Les Miserables," which we all enjoyed. We went out for a couple of meals, we went for treatment and Mom accompanied me when I saw Dr G. Mom skunked Rik and I both at Scrabble. I cooked some yummy meals and served up cocktails twice (Moscow Mules and Campari with orange juice, a family favorite).

We also did a lot of talking, the kind of mother-daughter conversation that you can do best in person and is harder to manage over the telephone.

So all in all, it was a very good visit, and Rik, Bobka and I will both miss having Mom around. Especially Bobka. Until her next visit!

Tiny change in treatment plan

I saw Dr G today and the good news is that my tumor markers keep dropping, this time by 65 points. But he wants to mix things up in the treatment plan.

Eribulin can be given in three doses (think Papa Bear, Mama Bear, and Baby Bear). Papa  dose wiped me out completely in October. Mama dose came close to wiping me out a few weeks later. Baby dose has been tolerable but as Dr G explained to me today, too small a dose of chemo might mean my cancer has a greater opportunity to get out of control. 

So next week I start at Baby dose on day 1 of the eribulin cycle and then move to Mama dose on day 8 if my numbers look good. I am slightly anemic at this time but not enough to warrant a transfusion.

In other news, we're having a great time with my mom, who skunked both Rik and I at Scrabble last night!

Just an update

A friend reminded me at shul last Saturday that I hadn't posted to my blog in quite a few days. So here's the latest:

I braved Costco, which was not especially crowded for this time of year. They had black cod, which I adore. Then had to go to Umajimaya for the kazusuke marinade.

Dunava had our last choir rehearsal on 2012. We worked hard, sang well, and are busily preparing for the next recording session in January.

I had the second dose of eribulin plus the monthly dose of Faslodex (two shots in the tush). It's odd how the Faslodex didn't work on its own the first time I took it, but in combination with exemestane (Aromasin), it seems to be helping keep my cancer down.  Three days of steroids followed, but only 4 mg per day, so I didn't feel especially strung out.

I made it to the synagogue board meeting that same day as chemo treatment, after a long nap in the afternoon (despite the steroids). I was even able to follow and participate in the discussions.

Went back to the oncologist's office the next day for my Neulasta shot, to build white blood cells and allow me to be around people and limit the risk of infection.

Cooked Shabbat dinner for good friends (Thai-ish tom yum soup, black cod kasuzuke, black rice with coconut milk and chopped almonds, rice wrappers with sliced vegetables and sweet chili sauce, ginger cake with fresh pineapple. And J's delicious challah.

I've done almost nothing since -- well, walked the dog, took some naps, read a book, and watched "Strictly Ballroom" for the umpteenth time. (One of the best and funniest dance movies ever made!)

Tonight my mom arrives for a visit. It should be a great week!

What's new in CancerLand

I was able to start another round of eribulin last week. At first Dr G wasn't sure that my numbers would rebound in time, particularly my platelet count, but everything came back up by the end of the week.

Dr G also gave me permission to reduce the follow up doses of dexamethasone (daily for three days after chemo). I took only 4 mg per day, and that seemed to be fine. I had enough energy without feeling completely wigged out.

The neuropathy in my feet continues about the same. It's apparently still confined to my toes and the balls of my feet. Occasionally I am in pain by bedtime, with searing foot cramps. Wearing socks to bed seems to have helped that. I think it has to do with keeping my extremities warm. If my feet feel warm, they don't cramp. Taking lorazepam in the evening if the discomfort is intolerable also helps.

I am beginning to feel some numbness in my fingertips and a tiny bit of tingling in the palms of my hands. I'll be sure to report this to Dr G when I see him next week.

Today I took a nap, for the first time in days. Maybe it was the steroids wearing off (today was the third of three days), maybe I was just bored, but one minute I was reading and the next I was snoozing.

And that's the news from CancerLand today.

Latkes and Chanukah

Tonight we'll light the fifth candle for Chanukah. Last night I made latkes for dinner (and fresh trout, and green peas). I used my Dad's recipe but instead of standing and frying while Rik sat and ate (Dad used to fry while we ate; he'd eat standing up at the range), I kept the latkes on a rack placed on a rimmed baking sheet in a warm oven until we were ready to eat. I learned that trick from Cook's Illustrated.

The real problem for me is that I don't always like other peoples' latkes, so when I go to a Chanukah party, I might be disappointed. Latkes should be made from potatoes grated on the small, round holes of a box grater, not shredded, with plenty of onion, salt and pepper, and just an egg or two (depending on quantity) and maybe some matzah meal or flour to bind everything together. Okay, I use my food processor instead of a box grater. But after I shred the potatoes, I spin them a few times using the S-blade. This gives the texture of grated potatoes without the risk of bloody knuckles. Same with the onions.

My sister taught me two tricks:

1. After you mix everything together, place the mixture in a strainer over a bowl and let it continue to strain while frying. The less liquid, the better.

2. If you want to make latkes in advance for a large group, fry and then freeze on a flat tray. When frozen, bag until you need them. Reheat gently in a low oven.

Today I fried about 30 latkes and froze them to serve for dinner on Friday night. I couldn't help but eat the broken bits. YUMMY!

BUSY

A quick update: I worked on the synagogue's big fundraiser at the end of last week. I cooked dinner on Friday night for eight people, everything made from scratch (challah, pumpkin curry soup, chicken roasted with green beans, farro with mushrooms, and apple strudels). Dunava spent three hours in the recording studio on Saturday. Sunday's fundraiser was a great success, with record attendance. Rik took me out to dinner to celebrate at Luc.

I spent most of today trying to recover from all of the above, but also took the dog on a long walk, went to the grocery store, and made mushroom lasagna for dinner.

I get chemo again on Friday, and plan to take full advantage of feeling well and having lots of energy this week!

Good report from the doc

My tumor markers fell another 57 points with this last round of chemo. That's not as dramatic as the initial 133 point drop, but it's still headed in the right direction. We'll do another set of labs at the end of the next round of treatment, and hope for a continued slide downward. Dr G did mention something about increasing the eribulin dosage back to a higher level, and when I gave him a hairy eyeball look, he said, "They'll throw me out of the oncologist union if I don't at least mention it!"

What I think he meant is that I might get more benefit, and faster, from a higher dose, provided I can tolerate the side effects. If we try it and the side effects become too much, we can always go to the lowest dose again.

Speaking of side effects, my neuropathy appears stable at my toes and the balls of my feet. I have begun to notice the tiniest amount of numbness in my fingertips, enough to report but not so much that it interferes with life.

Dr G also made a Jewish joke today. He asked, did I know what the trade name of eribulin was? He pronounced it Ha-leven. Leven is "white" in Hebrew and leben refers to a kind of yogurt. (B's and V's can be interchangeable in Hebrew.) But the manufacturers pronounce it Ha-la-ven. I don't know why they named it this, but it did make a clever play on words by my doc.

As he left we had a mutual love-fest about how we suit each other so well and how if I still have to be treated for cancer, he wants to treat me. I'll certainly stay with Dr G!

Coming down from steroids

We had a sort of quiet few days while I was on the steroids these past few days.

On Saturday I had permission from Dr G to go to synagogue, and I enjoyed visiting with the 150 or so people there. All that socializing did wear me out a bit, so I spent the afternoon relaxing on the sofa. At 5:00 PM we had an invitation to a friend's home a little ways north from here, so Rik and I tootled out there for a glass of wine, a nibble and some lively conversation.

Afterwards we decided to have an impromptu date night. We almost never go out on Saturday night, for no particular reason, just never do. We stopped at Third Place Books in Lake Forest Park and ate at the food court, listened to a 15-piece swing orchestra (very hot!) and browsed the bookstore. I found a great book to give my niece for Chanukah. (I've been giving my nephew and niece books for every birthday and Chanukah since they were babies. If only I had written down every title -- I am sure it would make a great but small children's library collection!) Rik came home with two new books as well. I thought about buying The Smitten Kitchen Cookbook or Dahlia Bakery Cookbook: Sweetness in Seattle, but I'm not sure I have room for more cookbooks.

On Sunday we did almost nothing. Rik walked the dog and did some yard work. I spent a lot of time with the newspaper and a book. But around 2 PM we both smelled natural gas, as though the range was leaking. Rik turned off the gas hookup behind the range, and I called Puget Sound Energy. They were terrific on the phone, and a technician was at our home within an hour. He tested everything and sure enough, the central burner was leaking a bit of gas due to a cracked knob. The technician removed the knob, we covered over the space with masking tape, and I called a repair place this morning through The Homeowners Club. Hopefully everything will be checked out on Thursday and it won't take too long to get the replacement part. We don't use the central burner frequently, so it's no hardship to be without it for a week or so. The other burners and oven are safe to use according to PSE.

But what a scare! Natural gas smells like rotten eggs, so it's hard to ignore -- which is the point. I was mildly freaked out by this experience, as was Rik. It took an Ativan and some dinner to settle me down afterwards.

For the last part of the evening I was in my jammies, on the sofa, watching TV and snuggling with Rik and Bobka. No more steroids until my next chemo. This is the week off, so I'm hoping for reduced pain in my feet from neuropathy and a good report at Dr G's in a few days.

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.

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.

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.

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.

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!

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.....

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!"

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.

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.

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!

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.

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!

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.

Rik votes

My Canadian-born husband decided to become a US citizen on the evening of the last presidential election. As soon as the California returns had come in, and we knew that Barack Obama would be the next President of the United States, Rik downloaded the citizenship application, completed it and mailed it the next day.

Here is Rik as he votes in his first presidential election:

(In Washington state, we now vote exclusively by mail.)

Dr G says:

Today I received Avastin and had a lovely visit with my friend R. Afrerwards I saw Dr G in an actual office visit, when he told me the following:

My kidney function is normal. Yay! I'll just finish that dose of antibiotic he prescribed.

He will reduce the eribulin dose and we hope I will tolerate it better. My next dose is Wednesday.

Although my blood pressure is going down nicely, I should stay on the diuretic and potassium supplements for as long as I receive Avastin, if not longer.

He agreed to look over a number of clinical trials I found (while surfing the web one night when I had serious insomnia).

When I need to move to another treatment, Dr G will consider prescribing Xeloda. Xeloda is an oral form of 5FU, which was so hard on me a few years ago. However, Xeloda is supposed to be more easily tolerated than 5FU and have fewer side effects. It's a mainstay of metastatic breast cancer care and I've never been on it.

All in all, it was a most satisfactory visit. Tomorrow, the eyebrow tattoos!

Better, better, better, better ....!

I have been feeling much better these past few days. I have plenty of energy and my feet hurt less from the neuropathy. My back still occasionally gives me a twinge. The jury is still out on how well the kidney infection is healing.

I still, however, have terrible insomnia. I get into bed and I simply cannot fall asleep. Last night I decided that I couldn't afford another restless night, when I had to get out of bed to rest on the sofa after tossing and turning for hours. So I took some Ativan and it did eventually relax me enough to fall asleep. Otherwise, after trying to sleep on the sofa,  I would desperately need a nap in the middle of the day, and the whole pattern would repeat again. So I will stick with the sleeping pills again tonight and ask Dr G about it tomorrow.

No chemo again

I went for chemo today as planned. My friend T joined me for a visit and we talked about our mutual but differing chemo experiences. I think T found it very interesting to be in another facility.

I reported to nurse Sam that for a few days I'd had pain in my flank (the area between your shoulder blades and waist, where the kidneys are located). So I peed in a cup and the sample showed that I have a urinary tract infection. Since I started on diuretics a week or so ago, I have not experienced any of the symptoms usually seen in a UTI: pain when urinating, urge to go but no urine, etc.

Dr G came in and within five minutes he'd written a scrip for an antibiotic to treat the UTI (no chemo until that's been taken care of!), said that he would consider reducing the dose on the eribulin, and agreed to write a note approving my request for a cosmetic eyebrow tattoo. (Mor eon that later.) I am to go back next week so we can try chemo again.

My counts have rebounded and I am no longer restricted from being in crowds. So after touring T's office, I took myself out to lunch and for a shopping spree at Nordstrom Rack. I found Rik the perfect blue cords he's wanted, a new jacket for me (which I need to cold weather test tonight), and tried on a fabulous pair of boots. I couldn't bring myself to buy it all, so I am still thinking about the boots. I have to act fast -- things don't stay around long at the Rack!

On the way home I stopped at the grocery store, the drug store, and then crashed for a short nap. I couldn't sleep, but putting my feet up and snuggling with Bob the dog was restorative.

Now it's off to rehearsal. If I don't have chemo, I want to keep up with my commitments.

Our clematis

Look what's still blooming in our front yard!

Clematis Blue Ravine

Pink accessories divert funding

My cousin sent me this letter to the editor of the Cincinnati Enquirer.

Pink accessories divert funding10/17/12 at 7:27am by Letters Editor
A sea of pink! Baseball players, football players, NASCAR drivers, all wearing pink for Breast Cancer Awareness Month. All well and good. But think of the money spent on pink caps, gloves, shoes, socks, wristbands and headbands - even the lanyards holding the officials’ whistles - for hundreds of players, coaches, managers, drivers and officials for even one weekend. This same money could have done some good had it been donated directly to breast cancer research.
Judith Enneking
Green Township

Naturally I loved that my cousin thought of me and that she gets my frustration with pink ribbon stuff. The comments posted after this letter were not thoughtful responses, so I won't share them here. But there was another letter to the editor that caught my attention on this topic. After reading both letters, I decided to write my own letter to the Enquirer. 

I am a 14 year breast cancer survivor (10 years stage IV metastatic disease). My cousin sent me “Pink accessories divert funding” because:
1) Could there really be anyone in the USA who’s not already aware of breast cancer?
2) Buying pink ribbon stuff doesn't contribute a lot to finding a cure.
3) Shoppers could Think Before You Pink.
How did the (mostly?) male viewers of these sports events react when they saw men wearing pink? Toast a glass? Give a dollar? Or talk about the scores?
I’d be satisfied with one more dollar towards research. Only a tiny portion of all USA research dollars funds every kind of metastatic cancer.
The ‘sea of pink’ rarely talks about women living with stage IV disease. It's as if we don't exist in the pink ribbon world. But we're the ones who breast cancer kills.

No chemo today

My white cell counts were too low today for me to receive treatment with eribulin. I did get a shot of Neulasta, which should bring the counts up, and was told to reschedule for next week to try again.

Because my white cell counts are so low, I am instructed to stay out of crowds. Even a passing stranger with a sniffle could set off a major infection for me. However, I do get to go to Shabbat dinner Friday night at the home of friends.

Funny (peculiar)

Now I know why they give this chemo once a week for two weeks. I feel just enough better this morning that I can handle another dose later today. However, I predict that the queasiness, fatigue and perhaps even a slight increase in neuropathy will continue. I imagine that I will be on the sofa a fair amount of time next week.

I'll be sure to have the staff check my blood pressure both before and after I get the eribulin. More news later....

Eribulin dose one follow up

Friday was fine. Although I took a nap, we went to dinner at a friend's home.

On Saturday I went to synagogue but really crashed in the afternoon. My nap was followed by some nausea that the Aloxi didn't relieve. Turns out my old prescription of ondonsetran (Zofran) was 18 months out of date, so it didn't provide much relief either. I've since had that scrip refilled. Ginger ale did the trick.

Dunava had an all-day retreat/workshop on Sunday which I very badly wanted to attend. I dragged myself out the door early and managed to sing with everyone for about six hours. We started at 10:30 AM, took a break for lunch and another short break for dessert, and I finally turned to toast at 5 PM. The rest of them continued on for maybe another hour. It amazes me that even on chemo, I am keeping up with these women, a couple of whom are 20 years younger than I am!

Dunava is preparing to record a second CD of all Bulgarian music and this was a chance to start on a monster huge piece. We got almost all the way through it in the one day, leaving one short section and the coda still to learn.

Today was filled with doctors. Because the health insurance company only pays for the eribulin as a monotherapy, meaning it can't be given with another drug, I had to schedule the Avastin for another day. Plus Avastin is given every other week. Eribulin is given once a week for two weeks in a row and then the third week is off. On the day after the second eribulin dose I also go in for a shot of Neulasta, a white cell builder. You can see this leaves me tethered to a chemo chair just about every week.

For instance, this first cycle is:

Thursday, Oct 11 Eribulin 1
Monday, Oct 15 Avastin 1
Thursday, Oct 18 Eribulin 2
Friday, Oct 19 Neulasta
Monday, Oct 29 Avastin 2

The Avastin may also be giving me high blood pressure. Dr G and his staff monitored me for a bit and he decided to add a diuretic to my meds for the next month. The diuretic will relieve pressure on shortness of breath (which I don't have) and edema (swelling in hands and feet).

I also met my new specialty dentist today who I like very much. I spent 90 minutes with her and I think she'll be a keeper health provider.

I came home, started a pot roast, and took a major nap. The nap was restorative, the pot roast was delicious, and I'm looking forward to a good night's sleep.

Metastatic Breast Cancer Awareness Day.

I found this on Facebook today from METAvivor Research and Support Inc.

Today, Oct 13, is Metastatic Breast Cancer Awareness Day. Here are a few facts to share when you are soliciting support for the MBC cause.

1) 30% of all breast cancer patients metastasize -- even stage 0 patients can and do metastasize. 

2) Breast cancer patients can metastasize 20 and more years after their original breast cancer. 

3) Metastatic breast cancer is the only breast cancer that is fatal -- 97-99% of all metastatic breast cancer patients succumb to the disease. 

4) Average survival after metastasis is roughly 2 years. 

5) According to the American Cancer Society website, only 15% of these patients are alive 5 years after diagnosis.

6) Only 2-5% of research funds in the western world go toward research for ANY stage IV cancer. 

6) Roughly 40,000 Americans die annually of the disease ... that is 110 every day. 

7) Why do some people metastasize while other do not? Forget all the "feel good" myths you have been told. The truth is this: It is sheer luck ... either good luck or bad luck ... and that's the plain, honest truth of the matter.

So, when are we getting a cure?

PS You can see a METAvivor video here.

First day after new chemotherapy

I'm feeling more than okay today. I slept well with the help of Ativan then walked the dog, trimmed some berry bushes, made dessert for Sunday's Dunava retreat, did a load of laundry and ran the dishwasher.

Right now I plan to take a nap and later go to Shabbat dinner at a friend's home. That seems pretty much like a normal day to me!

Maybe it's the Decadron.....