Folklife!

Every year over Memorial Day weekend, I celebrate the start of summer at the Northwest Folklife Festival. I usually go to the big Balkan participatory dance on Sunday night and of course sing with my choir, Dunava.

This year, being on chemotherapy made going to Folkife complicated. On Friday I was supposed to meet a friend from California for dinner, but I had a crappy day and it was too cold and wet to go out again. On Saturday I felt fine in the morning but crashed hard in the evening. On Sunday evening I felt better, and asked Rik to take me to the Balkan dance. Although I limited my participation to the slow and easy dances, it was still great to be there, to hear the music, see my friends, and get to dance a little bit.

Today started with morning minyan for my dad's yahrzeit. Afterwards I needed a break and tried to nap, in the hope that I'd feel well enough to hear Dunava sing. Although I couldn't sleep, that rest helped me to get out again at noon. We went to Folklife, bought some lunch, and the food also helped give me energy.

I sat in the main court at the Center House, eating my lunch and watching the dancers. There was Cajun music playing, and I felt out of breath, tired, and hungry. I had my own small "pity party." I thought I would never get to dance again and was so jealous of all the people having a good time without a care in the world (or so they seemed to me).

But we went down to the theatre where Dunava was to perform, met up with friends, found a seat, and I began to feel better. Maybe it was the food kicking in, Maybe it was getting to listen to friends sing beautiful Balkan songs. Either way, my funk lifted and by the time Dunava came on stage, I was back to feeling my glass is half-full.

In the end, despite my hitting a wall after only 2-3 hours of activity, I still was able to do everything I normally do at Folklife. The sun came out after a long, cold, wet weekend. And that felt good.

Remembering Dad

Today is the second yahrzeit for my father, Sheldon Charles Cohen, zichrono l'vracha, may his name be a blessing.

In his memory, last night I lit a 24-hour yahrzeit candle and this morning we went to morning minyan. Since it was a Monday, in addition to the regular short service, we read from the Torah. And as the daughter of a Kohen, I was honored with the first aliyah. (Miracle of miracles, there were four Kohanim AND a Levi present!) At the end of the Torah service, mourners have an opportunity to remember their loved ones in the prayer El Maleh Rachamim (God full of compassion). Although my still-weakened left arm prevented me from holding the Torah, I was able to chant the prayer.

Our shul also gives mourners the chance to say a few words. Here's what I said about my dad:

My father enlisted in the US Army in 1945, at the tail end of World War II, just before he turned 18. Given that his yahrzeit fell on Memorial Day this year, I think he'd want me to tell you a little bit about his service to our country.

For my dad, the war was an opportunity for a very young man to see the world. Serving in the Army Corps of Engineers as a truck driver, he once ran out of gas somewhere in France. Having learned a little bit of French, he hiked back to the closest village, where he made a telephone call. He said to the operator, in his Bronx-accented French, “Le militaire American.” The operator didn’t understand his accent, so he repeated “Le militaire American.” Eventually they connected him and the Army came by with more gas.

Because my dad loved to feed people, after the brief service, Rik and I offered everyone a nosh of bagels and cream cheese, orange juice, and a special treat my father loved -- key lime tarts.

Praise for Swedish Medical Center

I finally wrote to Dr. Rodney Hochman, chief medical officer at Swedish Medical Center to praise the truly excellent care I received on the night of March 29, when I fell and dislocated my elbow. He responded the same day and he liked my blog!

Dear Jill,
Your email this morning was a great way to start the day. I will make sure that the group in the emergency department hears about your experience. I usually try to spend a least a half day a week at one of our clinical sites to see our people in action. I continue to be impressed with the quality and compassion exhibited by our people. Your blog and Rik's photos were also very insightful. Regards, Rod

And here's my original email (sent at 6 AM when I had insomnia yesterday):

After the Passover seder, around 10 PM on March 29, I slipped and fell on wet pavement, injured my arm and was taken by ambulance to Swedish First Hill, where I received truly excellent care. The ED doctor (who had just left his Passover seder) and nurses all treated me as though I was a family member. They listened to and honored my requests, addressed my significant pain, diagnosed a dislocated elbow and attempted to put the bones back into the joint. When that proved unsuccessful, at around 3 AM they called an orthopedic specialist. I was fortunate to go under
the care of Dr. Bill Wagner, who successfully reset my arm and has been a caring, compassionate physician ever since.

I passed a long night at the ED and I only wish I remembered the names of the staff who helped me so this letter could go into their personnel files. Swedish is fortunate to have such employees!

Swedish is always my hospital of choice.

A rough day

Yesterday was the first time in seven+ years that I felt disabled.

Between more blood pressure issues that caused stress and anxiety while I was driving (in the rain); frustration with my slow-to-recover left arm and how little I could do at yoga; insomnia, and general fatigue from the cold and wet weather, I actually felt handicapped.

It was mostly the dislocated elbow. But the cancer and treatment side effects added so much more to my whole day that I was full up to my eyes and fed up with everything. Even taking Ativan and only doing yoga breathing didn't help enough.

By the times yoga class was done, and I had eaten something, I realized that I should have turned around as soon as I felt poorly and gone home. But no, I'm too stubborn for that. I had to go to yoga, get some lunch, go to the market AND pick up RIk after school as planned. At least I had the presence of mind to cancel our dinner plans at Folklife.

I was such a poor judge of my own stamina and wellbeing that I took a second 0.5 mg Ativan in the car while waiting for Rik and let him drive. He was great. He carried in all the groceries, put them away, made up the bed with fresh sheets and let me take a nap there while he also fed and walked the dogs.

I slept more than two hours and awoke feeling more like myself, was able to prepare dinner and eat it, wrap my arm with the lymphedema bandaging, and even a read a little. Sleep really is an excellent healer for me and I am sure my middle of the night insomnia had a lot to do with my feeling lousy all day long.

Now the goal is not only to recognize when I feel poorly but to stop and listen to my body, then to go home if that's what's needed. Wish me luck on this. I get my stubbornness from both parents.

Insomnia

There are times when I just can't sleep. Even after taking a sleeping pill, I occasionally awake in the middle of the night. I woke up at 3 AM and after tossing and turning, taking an ativan for pain, and practicing my yoga breathing, I was still alert an hour later.

I don't feel particularly stressed. If anything, the reverse: my hblood pressure feels normal; there's a long holiday weekend coming up which I get to celebrate at the NW Folklife Festival; I have no chemo on Monday to interfere with that enjoyment; and I was able to get tickets to a local production of one of my favorite pieces of musical theatre, Leonard Bernstein's Candide.

This is when the internet helps. I can post to my blog, commiserate with my online list serv, check email, and even shop (if so inclined). What I can't do is sleep.

I hope that when I lay down again in a few minutes, my mind will stop spinning its wheels and I will relax and fall asleep.

Onc update

I saw the oncologist today and he says the following:

Heart issues might have been caused by IV Zofran. We looked at alternatives and they all carry the same 5% or less risk for cardiac side effects. Since I've had so little nausea with the Abraxane, my next chemo will be Abraxane only and no anti-nausea pre-meds. I did not notice any heart irregularities when taking oral Zofran for a queasy tummy after the first two rounds.

At my request I get next Monday off from chemo so I can celebrate the Memorial Day holiday by attending the NW Folklife Festival and hearing my choir Dunava sing. There was no way to do both, so I am glad Dr. G listened to me! He is very supportive of my need for a high quality of life.

My blood pressure was again slightly elevated but he was not worried. My heart rate was steady. I am having some shortness of breath when walking a couple of blocks but hopefully that will disappear in the coming days.

He ordered a chest/abdominal/pelvic CT. I haven't had a scan in just over one year.

And finally the big question: How long will I be on the Abraxane? When I have a good response plus two months. What's a good response? Reduced lesions as seen on a scan. (Hence next week's scans to have some sort of a baseline.)

Jill sings at CBS annual meeting

New shul prez

On Sunday our synagogue, Congregation Beth Shalom, held its annual meeting and I was elected president of the board for the next two years. There were an unusually high number of members present. The business included a report from the outgoing president, a salute to volunteers and recognition of the volunteer of the year, by-laws revision, approval of the slate of directors and of the annual budget.

I know all the above would be kind of tiring for people to listen to for more than two hours, so I decided that instead of being another "talking head," I would sing my comments. I rewrote the words to the same Serbian drinking song that I performed at the Dunava concert. Here's the full text. I tried to post a video of my performance but was unsuccessful. However, it sure got people revved up about the synagogue!

I must begin by ‘fessing up. Many of you know that I recently started another chemotherapy to treat my metastatic breast cancer. Today I appear before you in very traditional Jewish garb: the tichel. Usually worn by married Orthodox women as a sign of modesty, it also suits women who have lost their hair to chemo!

Now on to the CBS presidency. When Steve Perlmutter and Ron Schneeweiss asked me to consider becoming the president of Beth Shalom, I thought long and hard and spoke to many people about what I should do. Rabbi Borodin gave me truly excellent advice. She said, “Do it because it brings you joy.”

In the Cohen family, we have a tradition of celebrating happy occasions by writing song parodies. We take a familiar melody, maybe from a Broadway musical, and write new lyrics to reflect our simchah.

Some of you know I have spent more than half my life dancing and singing the music of the Balkans. I’ve always wanted to find crossover between my love of Balkan tunes and Jewish life.

So in the spirit of my family tradition of re-writing songs, and taking the rabbi’s advice about finding joy in being your president, with some help from a friend on the accordion, I have rewritten a Serbian drinking song called Evo Banke Cigane Moj. I think you will want to sing along with these new words!

// Beth Shalom, it is our home
A Jewish home for you and me //

// Rabbi leads us on our way
Members donate money, time and say,
“Beth Shalom, it is our home
A Jewish home for you and me.” //

// Lift your glass to communal success
In ‘68 we started to progress //

// Eating, learning, praying in a group
People thrive in our communal soup.
Beth Shalom, it is our home
A Jewish home for you and me //

La la la
Beth Shalom, it is our home
A Jewish home for you and me!

Chemo today

I had another relatively easy chemo day, although it started out with a little frustration. I was supposed to be on a three-week on, one-week off chemo cycle, but missed a treatment on May 10 due to low counts. By the original plan, today was supposed to be the week off, and therefore, although Dr. G's office had set up today's appointment, he had not entered orders into the electronic system. Fortunately, the chemo nurse was able to reach him by pager while he was rounding in the hospital, and he entered the orders quickly.

From there the routine went a bit more smoothly. Down to the lab to have blood drawn. Back up to the treatment center; get settled in a chair. Find out that the lab hadn't drawn a creatinine sample to test liver function, and because this was a Zometa day, it was an important test which Dr. G had not placed in his original lab orders. (He wrote it later, after I had already been to the lab.) The chemo nurse confirms that he wants the creatinine test, takes another tube of blood and hand carries it down to the lab. She makes another call to Dr. G to get his okay for me to have both Abraxane and Zometa.

At my request, the chemo nurse took my blood pressure three times (before, during and after chemo) and used a stethoscope to listen to my heart for a full minute. My BP was at my usual low normal each time and my heart was beating 72 times/minute. She recommended that if I experience more high blood pressure or other heart issues to call Dr. G and be seen right away or go to the emergency room for an EKG.

The day began at the cancer institute at 8:15 AM. At 10:15, we started the Zofran pre-medication. At 10:30, Abraxane. And at 11:30, Zometa. I was done by 12:40 and felt good enough that we went to lunch with a friend who came for a visit. It's only five hours, and I have all the time in the world, right?

Increased blood pressure from zofran?

A friend from a support group forwarded this link to me.

Zofran Side Effects - for the Professional

Cardiovascular
Rarely and predominantly with intravenous ondansetron, transient ECG changes including QT interval prolongation have been reported.

General
Flushing. Rare cases of hypersensitivity reactions, sometimes severe (e.g., anaphylaxis/anaphylactoid reactions, angioedema, bronchospasm, shortness of breath, hypotension, laryngeal edema, stridor) have also been reported. Laryngospasm, shock, and cardiopulmonary arrest have occurred during allergic reactions in patients receiving injectable ondansetron.

It could be that my recent increased blood pressure etc. is due to side effects from the intravenous zofran I received last Monday before getting Abraxane. You can be sure I will tell the chemo nurses about this and get them to ask Dr. G to not give me IV zofran next time.

Given that I've had so little nausea, and that not for several days after each chemo, perhaps I don't need any anti-emetic pre-medications before chemo at all. I will ask about this as well.

The good news is that my blood pressure seems lower today. Although I haven't measured my BP, my heart is beating more normally.

Last blood test normal

Yesterday I spent a marathon afternoon dealing with high blood pressure issues. This morning the nurse practitioner called to say the last blood test (whose name I can't recall) also came back normal. I am okay and can enjoy my usual activities. The high blood pressure is likely a side effect from the Abraxane. Dr. G will be happy to see me next week as planned.

Whew!

On condolences

I read this wonderful article, From Kind Words, Lessons on Condolences, in the New York Times -- how to express yourself, what to say, what not to say. It's eloquently written by a woman who recently lost her husband. The author, Jane Brody, has real insight into how to express oneself to a grieving friend and offers examples of what others wrote to her after her loss.

A long day

Yesterday at the naturopathic doc my blood pressure was much higher than normal. Although he didn't comment or take action on it, I was worried. This morning I asked my physical therapist to check my BP and it had come down some but very much. Then I felt my heart racing. My support group recommended I call the onc, so I did.

Dr. G was out of the office for the Shavu'ot holiday but his staff squeezed me in to see the nurse practitioner. I had my port accessed and blood drawn to check my counts. An EKG. A chest xray. More blood drawn (second accessing of the port) for a special test. After 2.5 hours, and getting dressed and undressed four times (no easy trick in a pullover sweater when you are wearing a scarf to cover your baldness), NP Heather released me to go home, saying my EKG was normal, my counts are just where they were on Monday after chemo, and the chest xray looks fine. The other lab will take a few hours and they will get back to me with the results tomorrow.

Then I sat in rush hour traffic, hurrying to get home so that Rik could take the car to teach his evening class to graduation students in education. By the time I came home I'd been on the go for eight hours, had eaten lunch and an energy bar but was really hungry, and too stressed to do anything about it. Thankfully Rik had ordered a pizza and it was waiting when I walked in the door.

The upshot is that Abraxane is known to cause heart issues. Did anyone tell me? I can't remember. At least I reported all the symptoms, my medical team took action, and I'm in no immediate danger. More news no doubt next week after I see Dr. Goldberg.

I think I will take an ativan to de-stress.

The musical theatre holiday

I heard this great report on NPR's All Things Considered about the musical theatre holiday, Eliza Doolittle Day, while stuck in traffic this afternoon:

Speak Up And Celebrate 'Eliza Doolittle Day'
by Marc Acito

In Act 1 of My Fair Lady, Eliza Doolittle, the Cockney flower girl learning to speak like a lady, fantasizes about meeting the king. Of course, because it's a musical, she sings:

One evening the king will say, 'Oh, Liza, old thing — I want all of England your praises to sing. Next week on the twentieth of May, I proclaim Liza Doolittle Day.


Since I'm not Julie Andrews or Audrey Hepburn — or Marni Nixon, who sang for Audrey Hepburn in the movie, I'll spare you the rest. But suffice it to say, Eliza envisions all of England celebrating her glory. The only ones who recognize Eliza Doolittle Day, however, are music theater geeks like me. And while an evening of cocktails and show tunes sounds like fun, it's insufficient to mark the occasion because Eliza's message is all too relevant today.

You see, My Fair Lady is based on George Bernard Shaw's Pygmalion, and both pieces explore the ramifications of learning how to speak properly at a time when elocution was valued as a symbol of education and upward mobility.

Emphasis on the was.

Listen to Franklin Delano Roosevelt say, "The only thing we have to feah is feah itself," and it's almost inconceivable that ordinary Americans trusted someone who sounded like Thurston Howell III of Gilligan's Island. We are now in an age when Sarah Palin speaks to a quarter of the electorate, even though she talks like she's translating into Korean and back again. Even the rhetorically gifted President Obama has felt compelled to drop his g's while tryin' to sell health care reform.

Nowadays, soundin' folksy has become more important than sounding educated. As Eliza's teacher Henry Higgins says, "Use proper English, you're regarded as a freak." But our country's biggest competitors are learning proper English and, judging from all the Indian call centers, learning it quite well. Our country was built by people striving to move up, not dumbing down. So on this Eliza Doolittle Day, perhaps we should all take a moment to think before we speak.

Marc Acito is the author of How I Paid for College and Attack of the Theater People.

Remembering Charisse

I always think of my dear friend, Rabbi Charisse Kranes z"l, on the eve of Shavu'ot. I remember that evening in 1989 too clearly. My roommate and I had just finished a delicious dinner when the phone rang. It was a friend of Charisse's from California, calling to say that she had died that afternoon. (Of course, it was three hours later back east due to the time zone difference.)

Charisse had been diagnosed with cancer four years earlier. Despite her advanced cancer, she continued to live life to the fullest. She started her first job as a congregational rabbi and was the first female rabbi on a pulpit here in Seattle. She married her grad school sweetie and they moved to California. When she could no longer work full time, she led services for the high holidays at various locations and later took on a part-time position.

We grew up together in the Zionist youth movement Young Judaea. In high school Charisse flirted off and on with increased religious observance. She used to bring a plastic toy Jeep to regional YJ conventions. During one particular weekend, she took the wheels off the Jeep so that we couldn't "drive" it and thus violate Shabbat while we played with it on Saturday afternoon.

Zichrona livracha: may her memory be a blessing.

Losing the rest of my hair

I was just getting used to the way I look with a shaved head a la Demi Moore in G.I. Jane and deciding it wasn't so bad when this morning in the shower I noticed little shreds of 1/4" long hair on my hand. It appears even the stubble is falling out and soon I will be smoothly bald , more like Persis Khambatta in Star Trek: The Motion Picture. (Although they both had eyebrows.) A friend recommended using duct tape to remove the tiny hairs and prevent scalp itch. We'll see.

For now I have decided not to post any photos online of me in the wig or a scarf or bald. I am comfortable wearing a scarf in public although I get many double-takes from strangers, even in medical buildings. You'd think people had never since a female cancer patient before.

Most people at synagogue who know me have avoided commenting that I've lost my hair and focus on how cute the scarf looks. That's a bit strange, kind of like stepping on the step that isn't there. You think it is, so your foot comes down extra hard on the ground. Only two people have actually said anything to me about losing my hair.

I'm not complaining: I think it's easier to focus on the positive of the terrific scarf rather than the negative of losing hair to chemo. And I don't want to have the "pity party" conversation repeatedly every time I see someone for the first time.

Still, it's strange to not have the hair loss acknowledged.

Chemo Monday

Everything went more smoothly this time, although still with delays. My counts were back up. The charge nurse didn't tell my nurse that the orders were in the electronic system. Dr. G was getting a haircut out of the office so couldn't sign the order electronically to give the chemo until he returned. Then the pharmacy was backed up.

I did not have either compazine or reglan, the yucky pre-meds that caused my anxiety attacks on the previous two visits. The zofran I received went like a breeze. Rik and I played most of a round of Scrabble to pass the time.

We even stopped at the grocery store on the way home to get some fresh Alaskan king salmon for dinner. Yummy!

My celebrity bald "twin"

I think that now (with my shaved head) I look like Demi Moore as G. I. Jane.

Out of the brace

Yesterday Dr. Wagner the orthopedist cleared me to take off the Borg brace! I fell and dislocated my elbow on March 29 and have been in a splint or brace ever since.

I learned that he was called out of town for personal reasons and so needed to change my appointment. The first available was in June and I didn't really want to wait an extra three weeks in the brace if it was avoidable. I left a message with his nurse and while at the physical therapist got the idea to have her call the doc, give an update on my improving condition, and ask if he would recommend taking the brace off now.

By the time I came home from my appointment and support group, there were two messages on the answering machine. One was from Dr. Wagner's nurse, saying that he might be in town next Friday and if so, she'd try to squeeze me in. Right after it was a message from their therapy staff. Their therapist had called Dr. Wagner, gave him my therapist's update, and Dr. W said it would be fine to take off the brace.

That's the way the medical system is supposed to work, smoothly and with excellent communication among all parties. NOw I have to practice stretching my left arm to regain full extension. Slow but surely it will happen. I remember it took six months to recover from the compound fracture of my left femur. But after six months, I was out-walking Rik all over Paris.

Hair loss

I stood in the shower this morning and suddenly noticed hairs on my hand. Every time I touched my hand to my head I found more hairs. After a few scrubs of shampoo it suddenly dawned on me: this is hair loss from chemo. I swear, I didn't realize what was happening right away. This from a woman who has had hair loss from radiation and knew what to expect from chemo.

I said, "Oh, shit." No tears, no moaning, just an expletive. I carefully toweled off, patted my hair dry, and tried to go on with my morning. Naturally I found hairs all over my pillowcase. In my sleep I kept brushing off the pillowcase and wondering when Bobka the dog had been on my pillow.

After dressing, breakfast, and a telephone interview with a writer from Living Beyond Breast Cancer (for a brochure on metastatic cancer and stress -- think I was having a stressful day so far?), I decided I would take action. Better to have the wig in hand and a shaved head than to find more hair on the pillowcase and in the shower every day for a week. I am such a control freak.

I also posted this news on Facebook and within minutes had wonderful feedback from friends who were online. Thank God for social networking!

Diana at Hair Options knew exactly where to find the wig that I chose a few weeks ago. She offered to buzz my head, but I wasn't sure how emotional that would be and I didn't want to take chances while driving for only the fourth time in six weeks. So she pulled out a wig cap to keep my hair in place, put the wig on, and trimmed it to suit me. It's exactly my shade of dark brown and in a style I have worn before, kind of a short pixie with a fluffy back. And for me, it was affordable.

After stopping for lunch (Hawaiian style BBQ chicken over green salad) and treating myself to an ice cream at Molly Moon's (salted caramel and "scout" mint in a cup), I went to Trader Joe's for some groceries. I managed to get in more driving, especially a short hop on the highway, and cope with everything. I never got to yoga, but thought it was better to get the wig thing over with before Monday's chemo.

In the afternoon I picked up Rik and we went to the hairdresser to have my hair buzzed off. (I wanted him to drive home in case I got upset.) It was more than weird to see myself bald. I cried a bit but was not as overwhelmed as I feared. A little ativan also helped immensely. And it turns out that without hair, you can see that I inherited my father's receding hairline as well as his build and his stubbornness.

If I feel up for the comments it will generate, my newly bald head and I, in the wig or in a hat, plus Rik, will head over to the synagogue for a community dinner and lecture by our scholar-in-residence. And if not, friends have offered to bring dinner over.

Maybe I will get a henna tattoo on my head and look extra cool this month. And in the spirit of new beginnings, now I will plant the basil I bought earlier today.

Chemo update

On Monday at 7:30 AM we were waiting at the Swedish Cancer Institute for the lab to open. So much for communication. On the phone the nurse told me my appointment was at 8:00; I had also been told to arrive one hour early for lab work. The lab doesn't open until 8 AM; my chemo appointment was actually for 8:30. We bounced around looking for the right place to go before most of the employees had arrived. And then the nurse couldn't find my doc's orders in the computer system. Good thing I had hand-carried a signed print out when I saw him last week.

I would really like for this to go more smoothly in the future. It seems that the staff assume the patients, even new ones, know what to do. My doc's personal assistant even told me today it would be complicated to go there instead of at his office, but even with the complications, I think Swedish is the place to go.

That said, the lab tech accessed my port and drew my blood. After a short wait, the nurse called me back to the infusion suite and told me my red blood cell, white blood cell and neutrophil counts were low and that Dr. G decided I should not have chemo that day. I appreciate his conservative caution. No one wants a repeat of last year's two week stay in the hospital. Even though I feel well, low counts mean I should avoid crowds and people with the sniffles. I don't want to catch anything and with low counts, my immune system is more likely to pick up a stray bug.

So Rik and I left at 9 AM and decided to run some errands while it was so early. After we got home I called Dr. G's office as requested and heard back today that he wants me to "try again next week."

This may keep me on a short tether to the chemo chair. Even if we can't know from week to week if I will be healthy enough to receive treatment, I still have to go in every Monday to have blood drawn and checked.

I am still putting it out to the universe that Abraxane is very effective, well-tolerated, with minimal side effects, and that I will be among the 10% who keep their hair.

Key Mechanism Identified in Metastatic Breast Cancer

I receive a weekly Google Alert for metastatic breast cancer and every so often something really intriguing comes my way. In this article, Key Mechanism Identified in Metastatic Breast Cancer, "scientists at the University of Kentucky Markey Cancer Center have identified a key molecular mechanism in breast cancer that enables tumor cells to spread to adjacent or distant parts of the body in a process called metastasis. This finding opens the way to new lines of research aimed at developing treatments for metastatic breast cancer."

We all know that there is a lot of research on early stage breast cancer, not so much on stage IV or metastatic disease. The fact that something entirely new has come up only serves to reinforce what Dr. Goldberg is always telling me: that I just have to live long enough for the next new thing to come down the "highway."

To read the whole article, click here.

A sunny Seattle day

This weekend has been glorious in Seattle -- about 70 degrees, bright and sunny. After the recent cool, wet weather that felt more like November than May, it feels like nothing short of a miracle.

My independence has increased exponentially since a week ago when I had just received clearance from the orthopod to drive and be in the house without the Borg brace. (Resistance is futile: I just hate wearing the damn thing.) After spending several days without the brace, even when alone in the house, I feel more confident of my ability to putter around. You know, do things like empty the dishwasher, start a load of laundry, prepare a meal, read a book, pet the dogs.

Yesterday I drove for only the second time since seder. I felt much more confident and decided that I had to extend my driving range beyond the two miles to synagogue. So today I headed off to the grocery store (on my own), did the shopping (on my own) and put gas in the car (again, on my own). It felt terrific! I might even be willing to drive to a medical appointment and face parallel parking this week.

I also picked up a few plants to set out in pots today. I bought Sweet Million and Green Grape organic tomato starts two varieties that do well in the Pacific Northwest), marigolds to cross-plant with them, some basil and an upright fuschia and begonia for the deck railing pot. There are still happy pansies blooming in that pot and the whole thing should be quite colorful. Plus our neighbors across the street who have the fabulous garden have offered me some other tomato plants as well.

Now to give Bobka the dog a trim. Clearly I am feeling well this weekend!

A little nausea

Yesterday afternoon at about 5 PM I quite suddenly sensed that I might vomit. Ran to my purse, grabbed the zofran and swallowed one within moments of that sensation. All turned out well. I did develop a queasy tummy that lasted most of the evening but the urge to throw up passed quickly.

This was my first experience with sudden nausea since starting the abraxane. I don't know if it's typical or not, but I was sure glad that I had meds right on hand and that they worked immediately. This why I carry the zofran with me. If something could hit me that quickly, I want to be able to treat it.

I learned the trick of carrying what you need from a support group I used to attend. My dad was very sick at the time and since I live on the opposite side of the country, I was worried and never had enough information to satisfy my curiosity. The group members suggested that I always carry some ativan with me, just in case. I already was in the habit of carrying pain meds. Adding a couple of tiny ativan pills was an easy fix. And I remembered this trick when I started the current chemo.

Feel free to pass the tip along!

Lymphedema legislation

I just learned about House of Representatives legislation in the works to provide Medicare coverage of lymphedema diagnosis and treatment. Here's what I wrote to my Congressman, Jim McDermott. I hope you will consider taking action also.

To find and contact your Congressional representative, click here.

As an 11 year breast cancer survivor living with lymphedema, I sincerely hope that Rep. McDermott will support H.R. 4662: Lymphedema Diagnosis and Treatment Cost Saving Act of 2010.

Medicare and Medicaid do not currently pay for treatment of lymphedema, a life-long condition related to surgery for removal of lymph nodes. It is also congenital. HR 4662 would cover diagnosis, compression garments, and special physical therapy that people living with lymphedema require to maintain good health.

I've had metastatic breast cancer for 7 years, am now age 50 and hope to live long enough for my lymphedema treatment and garments to be covered by Medicare.

Given the large numbers of women diagnosed with breast cancer every year in our country, who will have a lifelong risk of developing lymphedema, this is an enormous hole in our health system. I hope Rep. McDermott will help rectify this lack.

To read more about the mom whose son was born with primary lymphedema, and who started this bill, read this article.

Health insurance blues

Yesterday we received a denial of coverage for a wig from Pacificare, our health insurance company. Even when phrased as a "cranial prosthesis for chemotherapy hair loss," Pacificare wrote that a wig is not a covered benefit under our policy.

The interesting thing to me is whether this is something negotiated by the Seattle Public Schools
as part of their health insurance contract, or if Pacificare routinely does not cover wigs for hair loss due to chemo. Either way, it's clear to me that the people who do the contract negotiations have never been through chemo and experienced hair loss, or they would clamor to include wigs as a covered benefit. Does the Seattle School District really want their teachers, especially the female ones, going to school bald from chemotherapy? It seems to me looking at a bald female teacher would distract students from learning.

I decided not to sing with Dunava at the NW Folklife Festival later this month because 1) I wasn't sure how I would feel after a few rounds of chemo, but even more 2) if I go on stage bald, or wearing a scarf over a clearly bald head, it would distract the audience from our performance.

I can still purchase the $240 wig instead of the $1600 one for days when I want to look like I have hair.

So I have added to my chemo mantra that I will be part of the 10% of those taking abraxane who keep their hair. And that abraxane will be well-tolerated, with minimal side effects, and very effective.

An update from the oncologist

I saw Dr. G, Seattle's best oncologist, yesterday and we agreed on the following --

Chemo will be three weeks on, one week off (yay! a plan!)

Although they test my blood before every chemo to see if I am healthy enough to be treated (i.e. not anemic), I will also have a test of my tumor marker CA 27.29 in a few weeks to see how effective the abraxane is.

I told him about the burping and he prescribed an OTC chewable medicine called Gas-X which gave me immediate relief last night after dinner. I am to take one after every meal and before bed (maximum four times a day) if I find myself burping. I could call the naturopath also and get his advice, but I'm pretty sure he'll tell me to take more of the digestive enzymes which I can't stand and don't think work very well.

We think we have resolved the confusion over orders placed in the electronic system. The Swedish Cancer Institute is still getting used to this way of doing things, and they were not expecting electronic orders from Dr. G. Hopefully all will go smoothly next Monday.

In the meantime I am feeling well this morning and have plans to see yet a third wig provider and have lunch with a friend later today.

There is a 90% chance I will lose my hair to the abraxane. But that means 10% of people don't, and I know someone who falls into that category. So I thought of another addition to my chemo mantra: I hope to keep my hair, but if I do lose it to the chemo, I am prepared. Because (say it with me) this chemo is well-tolerated, very effective, with minimal side effects.

Day after second round of chemo

I had my second abraxane yesterday and was out of it for most of the afternoon. The pre-med compazine again made me sleepy and then a little anxious, and the oral ativan did not help as much as the IV version did last week. I told the nurse I did not want either the decadron or reglan after last week's reglan freakout. It may be that I have the same reaction to compazine as both those other drugs, and if so, I will ask Dr. G if I can skip all three of these pre-meds and just get the abraxane.

We had another very long wait. Something in the electronic system isn't working properly. The cancer institute says they have orders but no labs. As I spoke with his assistant, I could hear Dr. G in the background saying "I put the labs in the system twice this morning! Finally someone somewhere found all the paperwork and they could access my port, after we'd been in the waiting room for almost two hours. I plan to address this among many other items when I see Dr. G later today.

After chemo I slept for an hour or so at home and rebounded to enjoy dinner cooked by Rik - Moroccan Meatball Tagine, from scratch no less, with me reading the recipe to him while he did the work. Rik ate this dish at a recent potluck and loved it so much we had to get the recipe and buy ground beef. We both think it would be even better with ground lamb too. Since I had eaten pad Thai (rice noodles) for lunch and felt over my carb limit for the day, we ate the meatballs with fresh corn instead of over couscous. Same carbs but I am not limiting produce from my diet. It was delicious!

I feel pretty good this morning so far and continue to recite my chemo mantra. Say it with me: very effective, well tolerated, minimal side effects.

Cleared to drive!

On Thursday I called Dr. W the orthopod with the question I forgot to ask when I saw him earlier in the week: when can I start driving again? On Friday his assistant called back with the good word that as long as I could grip the steering wheel safely, he thinks it is okay to drive while wearing the brace.

As it happens, a few months ago my physical therapist gave me a sheet of blue sticky stuff to wrap around items in order to make them easier to grip. I was concerned that I didn't have a good handle on the steering wheel while bandaged, and this stuff was supposed to do the trick. Rik and I attached a strip around the 10 AM and 2 PM points on the steering wheel this morning and off I went!

I sat behind the wheel and heaved a great sigh of relief to feel more independent after 5+ weeks of having to be driven everywhere. The drive to shul is short and familiar. I got the last parking spot in the lot. If one hadn't been available, I would have turned around to go home and Rik could have taken me back and dropped me off. I didn't feel quite ready to parallel park on my first outing.

I plan to continue to ask for rides to medical appointments this week, since I really don't want to parallel park, or park far away and have to walk unescorted for a distance. I am still nervous about falling, even though I have not begun to develop the peripheral neuropathy that can be associated with the abraxane. And of course I am holding my chemo mantra in mind: well tolerated, minimal side effects, very effective.

Is burping a chemo side effect?

For the first time in my life, I have been burping. All week long I have urped my way through conversations, meals, even synagogue. I am guessing this is a chemo side effect although it's not specifically mentioned in the drug pamphlet.

On Friday the burps turned into a queasy tummy -- not precisely nausea. A zofran tablet at 11 AM took care of the daytime queasiness, and another at 6 PM helped me get through Shabbat dinner with friends. A little ativan along the way didn't hurt either.

Today was better, although after coming home from shul I took another zofran and some more ativan a few minutes ago. Now I will drink some ginger ale.

I think this falls under my chemo mantra of minimal side effects, the other parts of course being very effective and well tolerated.

(burp!)