So far, so good

Yesterday's acupuncture treatment may have begun a revisal trend in my neuropathy -- or at least helped me tolerate it better. The acupuncturist placed two needles below my ribs, two along my collarbones, two in my feet (he left those in place for about 30 minutes) and two in my right hand. Evidently the needles that stayed in place for some time were sedating, or at least I fell asleep and when Dirk came in, he seemed pleased that I had dozed off. I came home feeling more energized and was able to make dinner and putter around the house.

This morning I awoke early (for me) and made waffles for breakfast, changed the sheets on the bed, started some laundry and am about to go to the grocery store.

It's not that my feet really feel better, but more that I am able to tolerate the discomfort.

I thought of another way to describe neuropathy. When I curl my toes against the balls of my feet, it feels as though my feet are swollen and tender. But when I examine them, that's not the case. My feet appear totally normal. That's the thing about nerve pan -- it's not visible.

And that's the thing about disabilities. They're not always visible. You can't see my cancer. You can see the side effects of the treatment, such as baldness. But cancer itself is invisible to the naked eye.

More on neuropathy

Although Tuesday was a good, high-energy day, yesterday my feet troubled me even more than at the end of last week's first dose of Taxol. I hobbled to lunch with a friend and tried to wander in a bookstore. After about 30 minutes I simply had to sit down. Getting home and putting my feet up for hours didn't help. By 10 PM I was practically in tears with frustration about the whole thing. I took some lorazepam, got into bed, and tried to forget the situation. Unfortunately, I still woke up with the same level of neuropathy.

Why does this neuropathy bother me so much? It makes me feel helpless when I have trouble moving around the house, much less trying to go out, walk the dog, drive the car, run an errand, cook a meal -- the really simple things in life that can be so easy to take for granted.

Part of my neuropathy experience feels like constant pins-and-needles tingling. That might not sound so bad, but remember, I said "constant." As in, no break: 60 seconds a minute, 60 minutes an hour, 24 hours a day, seven days a week. There is no escape from this tingling, a relatively low-level annoyance whose inescapability grates hard.

On top of the tingling there's the numbness. Parts of my feet, from the toes, through the ball of the foot and onto the heel, simply have no sensation. That means I need to be extra careful about tripping or losing my balance, since I might not be able to feel the floor beneath me well enough to correct my posture should I stumble. And I can't risk breaking a bone in a fall. This is why my gait is so rough. I lurch around the house from numb spot on one foot to another numb spot on the other foot. As a safety precaution, we've taken up all the floor rugs except one small one. The floors may be cold, but there is less for me to potentially trip over.

I hope that today's acupuncture appointment will bring some relief so that I am more able to live my life. After all, the dog needs a walk, and so do I.

Better today

Not having chemotherapy yesterday has given me more energy today. Despite awakening at 3:19 AM and being unable to return to sleep, I caught up on email, walked the dog for the first time since Thursday, swept the floors, ironed a half dozen of Rik's shirts and we went out to see a matinee. A much better day!


Yesterday at the local Fred Meyer (everything-cum-grocery store), I picked up a pair of sheepskin fleece lined bedroom slippers at a highly reduced price. The toasty warm slippers make my feet feel so much better, and the left shoe easily accommodates my old lift. The slippers are fully soled in rubber, so I don't slip on the wood floors. My feet are still numb, but I am moving around more easily since they are warm. I am so glad I thought of fleece.

What we did on December 25th

In order to better understand what we did on December 25th, when most of the rest of America celebrates Christmas, see this blog post.

Although I had a lot of discomfort with my feet and didn't have the energy to be on my feet in the morning, we did join our friends at 2 PM at Chiang's Gourmet for a Chinese feast. Here's what we ate, all pre-ordered the savvy host with our terrific waitress friend Mabel:

vegetarian spare ribs 

green onion pancake

fried dough sticks with soy sauce and sugar (just like Beijing street food, says Rik)

baked buns with eggs

vegetarian mu shu

salt and pepper whole fish

honey walnut prawns

rice cakes with edamame, mushrooms, greens

green beans with garlic

basil chicken

tea smoked duck

It didn't come in this order. At Chiang's they bring your food in the order it's freshly cooked, not necessarily in the order you placed it. I don't know why this is the case; no other Chinese restaurant seems to work this way, but we like the food there, so we keep going back despite being served out of order.

The restaurant was crowded when we arrived, with the last of the lunch rush leaving. That gave the staff a short break and the noise level dropped enough that we could talk with one another around our very large round table. Next year maybe we should go just a little later at 3 PM. By 4:00 it was starting to fill up again. Finding the right time to go out on Christmas Day is always challenging. At dinnertime, the place is too crowded to be comfortable, and I gather lunch was the same way. Mid-afternoon appears to be just right.

After a totally yummy late lunch, everyone came back here to hang out, relax, play board games, shmooze and have dessert. It was D's birthday, so we ate chocolate cupcakes, pumpkin pie with fresh whipped cream, ginger cake and the leftover apple torte from Friday night. And coffee, and tea, and sparkling cider. The teens played Milles Bournes with Rik and watched a movie while the adults kept talking. The last friends left around 8:00, Rik and I cleaned up a bit and settled down on the sofa with Bob the dog to watch the re-run of PBS's "Downtown Abbey."

No treatment today

This morning chemo nurse talked to Dr G about the increased neuropathy in my feet He agreed that the Taxol was too toxic too quickly and cancelled my treatment for today. In a brief phone chat we talked about regrouping to try something else. I see him next week, and have my second opinion at Seattle Cancer Care Alliance on January 11. Hopefully two weeks without treatment, and with acupuncture, will bring some resolution to my feet.

Taxol update

Last week's first dose of Taxol was both more and less than what I anticipated. The side effects are more; the dose itself, not so bad. No nausea, fatigue only as it relates to lack of sleep. Hair loss will occur (again! three times since April) in a few weeks.

Taxol is given with steroids twice on the day before treatment, three times the day of and again twice the day after treatment. That meant three nights of limited sleep for me, even with Ambien and lorazepam (Ativan) to help. I think I averaged four or five hours each night on Monday, Tuesday and Wednesday nights.

On Thursday night I figured I'd better try to sleep without medical aids. That didn't last too long. A bit of lorazepam at 2 AM helped me get the same four or so hours of rest. Friday and Saturday nights were repeats, minus the lorazepam because I really am extremely stubborn. I still felt as though I hardly slept and spending an extra hour or two in bed after 7 AM barely helped me function. Today it all starts over again, as I am scheduled for treatment tomorrow and have already taken today's first dose of steroids this morning.

I believe the acupuncture was beginning to help with the neuropathy in my feet. How could I tell? Because by Friday afternoon, my feet felt just like they had after my last Abraxane treatment -- painfully tender, pins-and-needles all the time with no relief. Saturday was better until the evening when the discomfort bothered me greatly. And I awoke this morning with the same feeling as on Friday afternoon, even after being off my feet for 8+ hours in bed. It's acutely uncomfortable for me to stand or walk. Even sitting or lying down brings no relief.

I expect to bring all this to Dr G's attention asap. Perhaps tomorrow, since he is on call and with few other patients in the way I may be able to speak with him directly or at our next appointment in a week.

In the meantime I am worried that if one dose of Taxol caused this much discomfort, the second dose will keep me housebound. Plus, of course, the lack of sleep that I anticipate having to go through this week. That may make for two straight weeks of poor and limited sleep at night, leading me to suspect that Taxol, even if effective, may not be tolerable.

A thought to live by

George Bernard Shaw said:

Life is no "brief candle" for me. It is a sort of splendid torch which I have got hold of for the moment, and I want to make it burn as brightly as possible before handing it on to future generations.

On this Solstice Day, also the first day of Chanukah, Shaw's quote struck me powerfully. After yesterday's first Taxol/Avastin treatment, which seems to be tolerable so far, I hope to continue to burn my torch as brightly as possible for as long as I am given to hold it.

Chemo mantra

I am scheduled to start Taxol this morning. Let's all say the chemo mantra so that it will be:

Highly effective
Very tolerable
With minimal side effects

"In my own little corner"

I hope having chemo on Tuesday, and my third dose of steroids on Wednesday, increases the chances of my feeling well enough to see the local production of Rodgers and Hammerstein's "Cinderella" on Wednesday night. 

I'll attend this much-anticipated treat with a friend who also knows all the words to all the songs from our mutual annual childhood viewings of the televised version with Lesley Ann Warren.












The original 1957 broadcast, written for Julie Andrews, took place before I was born, but I did manage to find an audio recording of it to put on my iPod and have reserved a copy of the DVD from the Seattle Public Library.

Chemo rescheduled for tomorrow

We arrived, as planned, one hour before my chemo appointment for labs, only to learn that Dr G was supposed to order dexamethasone (Decadron), a steroid taken for three days while on Taxol -- the first day being the day before treatment. There was some conversation about whether I should have Abraxane today instead, but eventually common sense won out.

Dr G ordered the Decadron, which we picked up at our pharmacy. I take it twice daily for three days. I will receive the first dose of Taxol tomorrow, the second one next week, and see Dr G the first week in January, all as planned. The Taxol will likely be given once a week for two weeks, and the third week off, so the planned schedule fits this pattern.

Although this mixup basically destroyed plans for two days, I was able to use the time waiting at the Cancer Institute well. I wrote several thank you notes for last week's Dunava concert and Beth Shalom brunch and came home with most of the items on my to-do list checked off. And you know I put things on the list just to be able to check them off!

Rik moved a tall table back into our living room so that I can set up our menorahs for Chanukah, which starts Tuesday night. I don't know if I will feel up to going to dinner at friends tomorrow night. It's too soon to predict how the chemo will hit me or how the steroids will help.

Tumor markers have fallen

I had a very pleasant surprise yesterday. I called Dr G's office to ask for my most recent tumor marker labs, taken on Tuesday, but not ready in time for Tuesday afternoon's appointment. Nurse Jacque told me the CA 27.29 (for breast cancer) had fallen from 90 last time (not even three weeks ago) to 69! And the CEA (for breast and ovarian cancer) was now at 5 -- practically normal!

You can imagine the scene. I'm doing the happy dance, Jacque is congratulating me, and Dr G wanders over to find out what's the noise is all about. Then I hear him saying how wonderful it is -- "but you still start Taxol on Monday."

If it works, I'm willing to start it!

I love flash mobs

If there was ever a singing/dancing event I lusted to participate in, it would be a flash mob. There's something about the (seemingly) random, spontaneous and joyful movement when people sitting at a cafe suddenly erupt into song and dance that gets me almost every time.

Click here for a new favorite: a crowd of Israeli shoppers at the Mamilla Center Mall dance to two of my favorite tunes from the 60s and 70s. Hearing these songs took me immediately back to my days at Camp Tel Yehudah, when we sang after every lunch and dinner during each month's camp session.

Why does it seem to be only in Israel that flash mobs sing about peace?

Pit'om kam adam baboker
umargish shehu am umatchil lalechet,
ulechol hanifgash bedarko kore hu 'Shalom'

(Lyrics Amir Gilboa; music Shlomo Artzi and Gidi Koren)

Suddenly a man wakes up in the morning
He feels he is a nation and begins to walk
And to all he meets on his way he calls out 'Shalom!'

And by lyricist David Barak:

Shalom, shalom
shalom al Israel
Imru, imru shirey hallel
Shalom, shalom al Israel

Peace, peace upon Israel
Let's sing songs of praise
Peace, peace upon Israel

Next up ...Taxol

I saw Dr G yesterday and we had a long discussion on what treatment I should take next. We talked about the results of the recent annual San Antonio Breast Cancer Symposium. The most interesting part to me was the research on Afinitor, a drug which is supposed to increase the effectiveness of aromatase inhibitors. I'd really like to try this combo, partly to get off chemo and partly because my very estrogen-sensitive cancer responded well for seven years to these drugs.

Bloomberg BusinessWeek reports:

In a second study, another drug long used in organ transplants but not tried against breast cancer -- everolimus, sold as Afinitor by Novartis AG -- kept cancer in check for a median of 7 months in women whose disease was worsening despite treatment with hormone-blocking drugs. A comparison group that received only hormonal medicine had just a 3-month delay in disease progression.

Afinitor works in a novel way, seems "unusually effective" and sets a new standard of care, said Dr. Peter Ravdin, breast cancer chief at the UT Health Science Center in San Antonio. He has no role in the work or ties to drugmakers. Most patients have tumors like those in this study -- their growth is fueled by estrogen.

So Dr G will start the wheels turning with my insurance company to see if Premera  will approve Afinitor for me. it's extremely expensive -- up to $10,000 a month -- so who knows?

Another finding indicated longer toime until disease progression with two aromatase inhibitors, anastrozole (Arimidex) and fulvestrant (Faslodex). I've taken both of these, but never together. I did try the high-dose Faslodex reported last year, and it was not effective, so we're not sure if this will help me or not.

MedPage Today reports:

"Over the years, our treatment approach for such women with metastatic breast cancer has been sequential use of as many hormone therapies as possible, keeping metastatic disease under control for as long as possible. These findings may allow us to change our approach. In this group of heavily pre-treated patients, all of whom progressed on prior endocrine therapy, the addition of this mTOR inhibitor resulted in significant prolongation of progression-free survival and an improved response rate, with only a modest addition of toxicity," said Hortobagyi.

In the end, we decided to go ahead with Taxol, a chemotherapy related to the Abraxane I've been on since last April. It's actually the same drug, delivered in a slightly different manner. You can read more about Taxol here.

I ought to tolerate it as well as the Abraxane. It's given weekly, and at least at first with Benadryl (to prevent an allergic reaction) and with steroids (to ease the reaction). Luckily, Rik is off for school vacation these next two weeks, so he will be able to drive me, etc. since the Benadryl will prevent me from driving myself. Then I see Dr G in the first week of January. If I tolerate the Taxol, I'll continue on it. If not, we will see what we will see. He's got a lot of tricks in his pockets.

Finally coming up for air - Dunava concert

Now that ;ast week's craziness is complete, I can finally sit back and relax before leaping into the next thing, whatever it might be.

Friday night's rehearsal for the Dunava concert went well. We rehearsed all our entrances and exits, who was going to move chairs and microphones when needed, etc. The sound checking was fine, except that by singing through every song in the entire program the night before the concert. I may finally have over-sung.

I woke up Saturday morning feeling like a baritone. At synagogue I sang very softly, just to awaken my voice. I didn't stay for the kiddush lunch, but instead got a cup of hot water and greeted people on my way out the door. I tried to nap and fell soundly asleep for about an hour. Then I ate dinner at 4 PM (!) by carb-loading on leftover manicotti, dressed and did my makeup, and we walked out the door at 5:00. As we arrived at the store to pick up the flower bouquet for Dina and extra roses for each member of the choir, I realized I had left my skirt hanging at home. Rik drove back to get it, I bought the flowers, and we still arrived more or less on time at the theatre.

I think the concert was a smash success. The stage was dressed beautifully, like a living room in some Old World country, with colored rugs on the floor, lanterns, Bulgarian survachki, and tables and chairs. This was the brainchild of S, one of our biggest supporters and an extremely creative person, who was also the house manager and volunteer coordinator. My dear friend D, our stage manager, managed to set things up and keep us running smoothly.



There were about 225 people in  the audience, around 125 more than we had pre-sold tickets. As we ran off the stage after the first half, we jointly exclaimed, "That felt like it lasted ten minutes! Are you sure it was the whole thing?" Indeed, we had sung for 40 minutes straight. The second half featured duets, trios, and small ensembles as well as the whole choir. We ended with a bang (literally -- from the tupan), ran offstage and were immediately called back on to sing an encore. Dina loved her bouquet and the choir members were surprised to each receive a rose as well.

After the show I was greeted by each aspect of my personal world. Dr G and his wife attended. He has a longtime love affair with Bulgarian music and he seemed very pleased with the concert. He even gave me a hug. To members of my cancer support group came with their spouses. Some of my closest friends were there, and several friends from my synagogue. Plus all those former Radosties and other folks from the folk dance world. And Rik and his "other mother" S who came in especially to hear us sing. All in all I loved having my own personal fan club!

Maybe I will be able to post photos and a recording sometime soon... no promises.

Still doing too much

I am still doing too much but don't seem to be able to stop.

Yesterday I cooked that lunch for the synagogue office employees, to thank them for all their hard work. I made zucchini minestrone, mushroom spread, stuffed manicotti, green salad, and that chocolate-dried cranberry cake with freshly whipped cream. We had a lovely time together, and of course they were all helpful guests in terms of serving the soup and clearing the table. Even loading the dishwasher!

That left me ready to go to a quick Hadassah meeting on the west side of Seattle. I talked over tea with a long-time Hadassah member and an event planner about an activity to honor Hadassah's 100th anniversary in 2012. We came away with lots of good information to share with the rest of the local centennial committee.

Then rushed back over to my side of town to try on  a friend's top to wear at Saturday night's Dunava concert. Hers didn't work, but one of mine ddid. Sometimes you just have to have a friend's eyes be the judge!

I came home and before I crashed on the sofa, put some turkey thighs into the oven to roast with a couple of sweet potatoes. When I awoke from my nap, dinner was done. We ate and then I ran out the door (again!) to rehearsal.

Dunava sang for almost three hours. Both our guest artists were there to rehearse: Jen Morris of the Georgian group "onefourfive" and musician David Bilides. It was a fun but long rehearsal.

Today is not as full -- I have my support group this afternoon and a synagogue meeting tonight. Tomorrow a morning meeting, followed (I hope) by yoga, and an evening tech rehearsal at MOHAI. And then Saturday's big concert!

I hope some of my local friends can be there on Saturday night at 7 PM to hear Dunava sing. (you can buy a ticket online here.) We will record the concert but we will likely use the recording to help us improve, not release it for the public.

Doing too much

As usual, when I feel good I do too much. Today I was off to the acupuncturist (and arrived too early). Next was a meeting at the synagogue. After a quick lunch at home, yay leftovers, I picked up Rik and took him to the dentist. From there I drove to the grocery store for a few things. I bought a pound of coffee at Tully's and they offered me a free tall drink -- that was clearly the highlight of my day! 

I picked up Rik again after his dental appointment and came home. I baked a cake for tomorrow's lunch for the synagogue staff, then made manicotti for dinner. I spent a few minutes on Facebook while the cake was in the oven. 

In between I am listening to the music for the upcoming Dunava concert over and over again, doing some additional promotion for the concert, helping with the set design, recruiting volunteers. On top of that I need to spend some time on the phone about synagogue matters. And Tuesday is our date night to watch NCIS.

I felt stressed all afternoon until the free mocha at Tully's. Chocolate always helps. Now I feel on top of stuff again.

I expect to crash hard tonight -- at least there was no Dunava rehearsal today!

Musing on mortality

I've blown through five chemos in the past year (Abraxane, Doxil, Adriamycin, Gemzar and Navelbine) and there are about six still available, including one I received in 1999 at my original diagnosis. This scares me. I don't want to face that I might be in constant chemo until all options are gone Yet no chemo has put me far enough into low tumor markers that I've been able to take a break for more than a week. 

Dr G, however, appears to still be optimistic. Maybe I just have to learn to live with yet another "new normal" of being in constant chemo. On the other hand, he wants to see me in two weeks. That's much shorter than the usual month between visits. He said he doesn't want me to go without some kind of treatment for more than two weeks.

On the other hand, (I know, that makes three hands, but who's counting?) life has been relatively as usual and as long as I can continue to get around, drive, volunteer, sing in my choir, cook etc. I am fine with being on treatment. My ability to bounce back is still there.

But I am afraid of what may be coming, what I've seen in so many others with metastatic cancer: loss of mobility and independence, my world getting progressively smaller, more and more toxic side effects. 

We just lost a young member of my local support group, and a member of my online group recently lost his wife. This makes me more conscious of impending mortality. 

What Jews do on Christmas

It's a little early for this, but I couldn't resist sharing it.... thanks to P!