March 29, 2011

The day after

Yesterday's Gemzar chemo resulted in some serious fatigue today and a couple of mouth sores. Luckily the pain in my mouth is kept at bay by vicodin and gargling with salt water helps the sores heal. The fatigue is harder to deal with.

I went back to the Swedish Cancer Institute for a shot of Neulasta today to bring up my white blood cell count. Then I had a meeting at the synagogue. By the time I got home around 2 PM I was hungry and pooped. After a quick bowl of soup, I headed straight to the couch and crashed hard.

I've taken to bringing my cell phone, the home phone, a book and a cup of water with me to the sofa before I crash. This time the book slid off my lap almost before I drew the quilt over my legs. I slept hard for almost three hours. I did wake up a couple of times as I bit down on my tongue and hit a sore spot, but went right back to snoozing.

What this seems to mean is that I have about two - three good hours every day in which to see doctors, attend meetings, deal with email etc. and run whatever household errands need to be done. That's limiting, but I will find a way to make it work.

Now it's back to the sofa....

Rainbow

Taken with my iPhone

March 28, 2011

Gemzar dose 4

I had a busy medical day. First a blood draw; then a visit with my oncologist; last my fourth dose of Gemzar. 

My red blood cell counts were good after the transfusion a few weeks ago, so no need for another at this time. I will get Neulasta tomorrow to bring up my white counts. 

Dr G is cautiously optimistic: "There are at least some peripheral signs that the gemcitabine and Xgeva are working." That is, the pain in my right knee appears to have gone bye-bye, and the largest of three scalp mets is no longer rounded but flat. I will get my CA 27.29 results tomorrow and if the tumor marker has decreased, that will tell us if the Gemzar is indeed working.

I think I should expect a couple of mouth sores this week, based on my experience with dose two, but hope they will be manageable.

March 27, 2011

Yet another death from cancer

A friend from my support group died this weekend. D, a very spiritual person, was a regular at this group for far longer than I. His cancer progressed quickly and his doctor recently told me there were no more treatment options that were likely to be effective. D decided to stop treatment and enjoy his life for as long as he could; the doctors hoped through the end of the year

Sadly, the cancer seemed to progress faster than anyone expected. D began to fail a little more than a week ago and started hospice at that time. He came to group on the 17th looking pale but still giving us suggestions on where to take a walk to enjoy the spring weather. D was looking forward to giving a talk on spirituality last week when we heard that he was failing and slipping in and out of consciousness. I heard this morning that he had died. I imagine that his grown children were able to make it back to Seattle in time for the funeral today, but don't know if they each had a chance to say goodbye. Rik and I will try to make it to a shiva minyan this week (if my health permits after tomorrow's planned fourth dose of Gemzar).

Zichrono l'vracha, may his memory be for a blessing to all who knew him.

Cancer sucks.

March 22, 2011

Wedding anniversary

Last week Rik and I celebrated our 16th wedding anniversary at Teatro Zinzanni, a wild cabaret Cirque du Soleil-type performance with a delicious dinner and a very expensive price tag.

We subscribe to a ticket discount service called Goldstar. Every week we get an e-letter with the latest performances that need to sell a few more tickets right away. Last week Zinzanni was on the list for about 40% less than the usual cover price. We decided to grab that opportunity right away, and fortunately our friends G & W were able to join us.

The four of us were seated in our own booth, which would have been large enough for six or even eight people. Guests are urged to dress wildly, and there is a lovely gift shop filled with feather boas and the like to encourage people to get a little zany. Rik and I wore the LED light-up heart pins which we received as a wedding present so many years ago, and I pulled out my mother's mink stole and a fancy rhinestone necklace.

Zinzanni takes place in a European spiegeltent decorated with mirrors, a "big top" for aerial acts, a stage, and many booths lining the heavily decorated wooden walls. It was extremely comfortable to sit back and enjoy the three-hour extravaganza.

G, W and Rik each wanted a cocktail, but I opted for "nothing but champagne from now until the finale!" (That's a quote from a favorite Broadway show, La Cage Aux Folles.) The menu, designed by local chef Tom Douglas, was delicious:

Appetizer

Smoked Salt Spring Island Mussels, Brie, marinated artichoke hearts, shaved red onion, and cucumber spears. Drizzled with light Balsamic vinegar.
Soup
Carmelized Sweet Onion Soup, seasoned with thyme, sage and Italian parsley in a beef-based stock. Festooned with Beecher’s Pike Street Gruyere toasted crouton.
Salad
Crisp arugula and red butter lettuce, lightly dressed in classic red-wine vinaigrette, sprinkled with Laura Chenel chèvre and toasted green pistachios and topped with roasted red baby beets.
Main Course
Prime Beef Tenderloin
Northwest prime cut beef from the Double R Ranch in Okanagan, slowly roasted to medium rare perfection and dressed with a savory merlot demi sauce, served over olive-oil and herb oven-roasted celeriac and seasonal vegetables.
~or~
Steelhead
Broiled Steelhead topped with sautéed capers, cherry tomatoes and lemons, set atop a chive-potato croquette and finished with nutty brown butter sauce. Served with seasonal vegetables.
~or~
Mushroom Strata
Medley of Mushrooms, Cauliflower, Chard, and Beecher’s Flagship Cheese in a savory Custard, with a side of Garlic-fried Chick Peas and crisp Green Beans, garnished with Tomato Confit.
Dessert
High Frequency Molten Chocolate Cake
With a dollop of crème Anglaise.

The entertainment was even better! "Radio Free Starlight" takes place at a 1930'-ish radio station and features sophisticated clowns, wonderful singing, and acrobatics and aerobatics like we could hardly believe. Each course of the meal is paced with care so that the hijinks and music complement the dining. The entire cast was terrific! And because we sat so close to the entertainment, we were even more wowed by everything.

There were only two down sides to the evening: 1) They don't allow any personal photography, so we couldn't take a picture of ourselves without paying for it, or unless we stepped outside in the rain; and 2) EVERYTHING except the dinner and show has an extra charge: a photo; the bar (understandable); extra side dishes, even bread and butter. It took further inquiry to determine that the $10/person service charge represents a tip mostly to the kitchen and bus staff, with a very small portion going to the wait staff. One is expected to tip on the balance.

But we had a fabulous evening, that ended with a lively chat with a cast member from Montreal who did not already know about the bagels at Eltana. All in all, a wonderful way
to celebrate our anniversary!

March 21, 2011

Gemzar #3

Today was my third dose of Gemzar. Everything went smoothly but took longer than anticipated. I had a friend with me the whole time, and we enjoyed a great lunch at Cafe Presse afterwards. We shared the butter lettuce salad with vinaigrette and toasted hazelnuts; I had the white bean soup pureed with cream and drizzled with lemon-basil oil; and we shared the chocolat chaud for dessert. C'etait tout delicieux!

I came home and napped for a couple of hours, and hope to sleep well tonight.

March 17, 2011

Spring?

Spring must be here. Although I've never been diagnosed with allergies (and cleared up the blueberry mystery recently), my nose has been running more than usual these days. I should have bought stock in Kleenex.

On other fronts, I am still fatigued and taking a nap every afternoon. This, sadly, keeps me from sleeping well at night. If I don't sleep at night, I need a nap during the day -- and I mean a NAP, maybe two hours long. If I nap, I don't sleep at night. If I take a sleeping pill at night, for several nights in a row, when I stop taking them I get rebound insomnia. It's a vicious circle.

But the sun is shining, it's warmer today than yesterday,

March 14, 2011

The latest Gemzar side effects

I have been steadily feeling better and better since last week's blood transfusion. However, I did notice some additional side effects from the Gemzar which lead me to think this chemo is not quite as tolerable as I hoped.

RASH: Dr G told me to expect a rash on my shins, which showed up briefly as a few large, red spots which were tender to the touch. I had three on my left shin, two on my right. They looked just like spider bites and went away of their own accord over a couple of days.

MOUTH SORES: I developed one sore on the side of my tongue which went away within 24 hours. Now I have two; one on the side of my tongue, but in the back where I can't see it although I can feel it, and the other on the tip of the underside of my tongue. That one is tiny, white, and also tender. I've been gargling with salt water to prevent any infection. So far these are no worse than annoying, and I haven't needed my Magic Mouthwash (xylocaine viscous solution, Zovirax®(alcohol-free), and Maalox®, or Mylanta®).

FATIGUE: This is the kicker. Even after the blood transfusion, I tire easily. Most afternoons I hit the wall around 1 PM and literally collapse on the sofa. Even if I don't sleep, I can't move for an hour or so. If I do nap in the afternoon, then I have trouble sleeping at night. I am trying to do my errands etc. each day in the morning so that I can be home by lunchtime and crash.

This morning I went to Costco, barely made it through the front door with the groceries, shoveled some food into my mouth while standing in front of the refrigerator, and staggered to the couch. I didn't sleep but zoned out quietly with Bobka the dog for an hour or so, then felt refreshed enough to bake an apple pie for Pi Day -- 3.14. (Get it?)

This is my week off chemo and I hope to recover enough to have treatment again next Monday.

March 11, 2011

Martenitsa

As I wrote in Chestita Baba Marta, when you see a stork (or in our case in the Pacific Northwest, a flowering tree), you stop wearing your martenitsa. Today I was at the local grocery store and noticed so many blooming trees that I had to take off my martenitsa bracelet and hang it from the branch of (I think) a flowering plum tree.

Doesn't it look beautiful? Now we know spring is really on the way.

March 10, 2011

Transfusion marathon

Yesterday was so LONG.....

I left the house at 10:45 AM for my 11:00 appointment at the Swedish Cancer Institute for a blood transfusion. Just a few blocks from home I realized that something didn't sound right with the car. Sure enough, the front left tire was completely flat. Thank God for cell phones. I called the Cancer Institute to explain I'd be late; called AAA for emergency road service; called my friend G, who was going to hang out with me during the transfusion.

The emergency road service truck arrived in only 20 minutes, barely enough time for me to decide what music to listen to while waiting (I chose Hedwig and The Angry Inch, which is completely fantastic). The technician changed the tire for me and put on the small spare. I drove off to the nearby Les Schwab Tire Center, where they were able to patch my flat tire right away. So I was only an hour late to my transfusion appointment.

By the time I arrived at noon, the Cancer Institute the waiting room was completely full. G met me around 1 PM. Just before she arrived, the charge nurse told me there was a delay in getting the blood and that it wouldn't arrive until 2 PM. G had brought lunch, so we sat in the waiting room enjoying lamb sandwiches from Mediterranean Kitchen. Just as we started a Scrabble game, the nurse called us back to the treatment area.

By 2:30 I was hooked up and getting the first unit of blood. G and I played Scrabble until she had to leave at 3 PM. I finished my book, Sue Fishkoff's Kosher Nation. I leafed through magazines. I played on my iPhone, listened to music, talked on the phone. (Thank God for that toy!) Man, was I bored out of my gourd.

Around 5 PM they switched to the second unit of blood. It turns out that blood units are not standardized by weight or volume, but reflect the amount each donor gives. There is a minimum amount required, but each unit can vary widely from others. So my first unit was about 220 ml, which went in over about two hours, but the second unit was more than 450 ml, and it took almost three hours to transfuse. Plus waiting for it to arrive.

Of course I hadn't planned this would take so long. The hospital cafeteria would have brought me a meal, but they only take cash and I didn't have any on hand. Instead the nurses offered me a sack lunch which had been delivered to the Cancer Institute in the morning. One dry turkey sandwich later, my transfusion ended. I finally left the Cancer Institute at 8:20 PM and was soon walking in our front door.

My back ached from sitting in the chemo chair for eight hours; I had a headache; I was cranky from being so bored for the entire day. But I got a good night's sleep, felt perky enough this morning to walk the dog for 30 minutes, and hope to continue to reap the benefits of the marathon transfusion.

No chemo next Monday!

March 09, 2011

Seattle's best bagels!

In today's Seattle Times, food critic Nancy Leson wrote a great review of our new favorite bagel place, Eltana.

And here is a photo of me learning to make a Montreal-style bagel at Eltana during a recent bon voyage party for Rabbi Borodin, who is taking a short sabbatical. Don't I look like quite the expert!

March 08, 2011

Transfusion tomorrow

I just got the word that I need to have a blood transfusion tomorrow. My red blood cell count was even lower today than yesterday, so a transfusion is in order.

I did make some delicious chopped liver this morning, and hope that it, plus some spinach soup, will also bring up my red count.

Gemzar dose 2

I did indeed have the second dose of Gemzar yesterday as planned. I've been anemic for at least three weeks and my red blood cell counts were low enough that there was some concern I might need a blood transfusion. Bu Dr G decided I should have treatment anyway.

After the Gemzar finished, the nurse took another blood sample to type and cross in case I need a transfusion today. She left my portacath accessed for the same reason.

I am supposed to go back later this afternoon to get a shot of Neulasta to build more white blood cells. At that point they can all decide if I need the transfusion, and if not, can de-access my port.

I took a nap yesterday afternoon and we went out for a quick dinner. By 9 PM I was in my jammies and starting to feel a slight fever. It continued until about 2 AM but never got above 99.5 degrees F. Of course, I remembered I wasn't supposed to take anything to reduce the fever, to see if it would spike higher, so I couldn't fall asleep. Around 1:45 AM I felt the fever break, but still couldn't sleep. I guess I dozed off around 5 AM and slept off and on until 10 AM, when I finally got up, took a shower, had breakfast and walked the dog.

I'm waiting for a call back from Nurse Jacque so I can report all these symptoms and find out what Dr G wants to do. Meanwhile I will make some chopped liver (gotta get some extra iron!) and maybe take a nap.

March 04, 2011

Fever

I've run a low-grade, one degree fever three times this week. This morning I called Dr G's office and spoke to Nurse Jacque, who told me to stop taking Tylenol and keep track of my temperature throughout the day. If my temp goes above 100.5, I am to call Dr G's office, even if over the weekend, because someone will need to see me.

My last Tylenol was at 9:30 this morning, and it's now just after 3 PM. My temp is 99.3 degrees F, and I will continue to monitor it into this evening and throughout the weekend.

I don't feel bad, not even a headache. My nose has been a bit runnier than usual these past few days, which may or may not have anything to do with my slightly elevated temperature. (Of course, I was out in the worst weather yesterday, and not really dressed warmly enough: sleet, rain, heavy winds and cold).

I think Dr G worries that the Gemzar may leave me prone to infection. This  potentially serious side effect is what put me in the hospital two years ago after four doses of 5FU. So I will keep track of things and be sure to call his office if needed.

March 02, 2011

Slowing down on Gemzar?

Last night I ran 0.3 degrees of fever. It was enough for me to notice that I felt weird, take my temperature, down some Tylenol, and hide under the blanket while watching TV. After only a few minutes I began to feel better.

I made it to both meetings today, but came home and CRASHED on the sofa. I didn't think I was that tired, but after quickly eating some lunch, the sofa started calling my name. I slept hard for a couple of hours. I think this is what they mean when they say fatigue is a side effect. I just "hit the wall" and literally could not move any further until I had slept.

Maybe this Gemzar is hitting me harder than I thought. It's possible that I didn't rebound quite as far back to normal after the last dose of Navelbine as I'd hoped. And I'm sure that today's combo of driving rain, high winds, sunshine and cold didn't help either.

March 01, 2011

Chestita Baba Marta

March 1st is a significant day in the Bulgarian calendar. Each year Bulgarians present to relatives and friends martenitsa - a double red and white tassel signifying health and happiness.
On the first day of March, people in Bulgaria put the martenitsa on their clothes or wrists and wish each other health and happiness with “Chestita Baba Marta” - (”Happy Grandma Marta”). “Marta” comes from the word for March (Mart) in Bulgarian.
Martenitsa are supposed to be worn until the person sees the first stork returning from the South. Then martenitsa are then tied onto a tree branch. The act of giving the martenitsa is in expectation of the near spring season. The “arrival” of the stork indicates that this has happened.
Although we have to go to the zoo in Seattle to see a stork, we can still wish each other "Chestita Baba Marta!"

Gemzar day 2

So far, so good: although I was tired when I woke up, I was able to get out of bed, walk the dog and get to my physical therapy appointment on time. Being with people clearly energizes me; I had a great catch-up with the therapist. On the way home from PT, I stopped at Gran Central Bakery for a loaf of sourdough rye bread and also got Rik a piping hot cinnamon roll, then dropped it off to him on my way home.

I have another meeting this afternoon, but plan to take it easy otherwise. I foresee a nap later today....

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I dance with cancer. Oy!