Chest xray OK

I got the results of yesterday's chest xray and it was negative -- meaning there was nothing to see via xray. So I am good to go for chemo on Monday, as planned.

My shortness of breath continues to be resolving on its own. I went to yoga today for the first time in several weeks and was able to breath very deeply during the relaxation (my favorite part). Still a little short of breath while walking, but I am walking further every day.

Meanwhile I am cooking up a storm for tonight's guests, an English meal in honor of the royal wedding (and because I've always wanted to have trifle).

Challah (we are Jews, after all)
Cream of cauliflower soup with stilton
"Fish and chips": slow-cooked halibut in olive oil with my dad's recipe for roasted potatoes
Minted green peas
Sour cherry trifle

I had to go to three (!) grocery stores to find a pound cake. Silly me; I should have just baked one last night.

And a very little joke....

Ben & Jerry's Ice Cream is now available In the following flavors (if only!) --

Wailing Walnut
Moishmellow
Mazel Toffee
Chazalnut
Oy Ge-malt
Mi Ka-mocha
Soda & Gamorra
Bernard Malamint
Berry Pr'i Hagafen
Choc-Eilat Chip


and finally ....


(drum roll, please)

Simchas T'oreo

It should also be noted that all these flavors come in a Cohen.


(Thanks to my friend B for sending this one along!)

SOB update

I almost forgot to mention: Although my shortness of breath seemed to ease today (I walked the dog down and up a hill!), I reported it to Dr G. Upon physical exam, I had no pain in my right side, even with him poking me in the side and my taking deep breaths. Dr G asked me to have a chest xray, which I took this afternoon. I also had the oxygen level in my blood checked with a pulse oximeter (the thing that goes on your finger) and it was at 96%, practically normal.

Maybe it was anxiety about the ultrasound report?

Scan results and treatment update

Last week's ultrasound results were neither positive nor negative. I continue to have stable disease in my liver, meaning the Gemzar didn't really work all that well for me.

Dr G has decided to put me back on Abraxane. This is where I started chemo exactly a year ago. He did not order scans before I started the Abraxane. After nine or so treatments, I had a CT scan which found the liver mets. We don't really know when they appeared.

He switched me immediately to Doxil, which I did not tolerate. In the past year I have also taken Adriamycin, high dose Faslodex, Navelbine and Gemzar, all resulting in stable disease but no reduction in liver mets and continually increasing CA 27.29.

So, since I tolerated Abraxane well last year, I will start on it again next Monday. At least I know what to expect -- low blood counts, hair loss, nausea, fatigue and maybe peripheral neuropathy (although I don't remember this from last year).

Last year I had all my hair buzzed off just as it started to fall out, but I still had stubble all during the spring, summer and fall chemos. I was never baby-butt-bald. So I think I will try to live with hair loss this time instead of buzzing it all off again, and see if it does really all fall out, or if it only thins.

It does mean I will likely be hairless when we go out of town for a family celebration in June. I still have the wig I bought last year and many, many scarves. If I am bald, everyone can just deal with it. 

Dr G knows about our planned trip and hopes to see some results before we leave. I think that means I can look forward to another scan mid-June. As he told me today, "You're in good shape. We just have to find the right thing for you." We had a moment of emotional connection together and decided we are exactly the right doctor-patient team together.

(If you search through my blog for posts on Abraxane from 2010, you'll read that at the time I was dealing with a severely dislocated elbow, lymphedema, fear at starting chemo for the first time in eight years, and incipient depression. After having been on chemo for most of the last year, I can safely say that my fear is reduced, I know what to expect from Abraxane this time, my elbow has healed and I am no longer clinically depressed. But I think I will stay on the low dose of sertraline for the time being, just in case.)

SOB

No, it doesn't mean son of a bitch. SOB is medical alphabet soup for shortness of breath, which I've had the past two days, along with some pain upon a deep inhale. Nothing hurts when I press against the area, so I may be anemic (required a blood transfusion a few weeks ago). Or there may be a tumor pressing against a rib, or my liver, or a lung. I don't want to self-diagnose, so I will report these symptoms to Dr G tomorrow and find out what he thinks.

Meanwhile last night it was challenging to walk from the restaurant to the car (although I did eat a big dinner -- yay post-Passover pizza!). In order to breathe easily, I fell asleep on my back last night. Back pain woke me after an hour and a half. I couldn't get comfortable and started to grow anxious about not being able to breathe deeply. Some Ativan helped me relax and fall sound asleep until 9 AM.

I see Dr G in the morning and will report all these symptoms to him, as well as get his take on next steps in treatment.

Ultrasound

Last week I had another abdominal ultrasound. Dr G likes to go back and forth on imaging scans. Sometimes I have a CT, sometimes an ultrasound, even occasionally an MRI. But he doesn't like me to have too much radioactive contrast, so last week's scan was an ultrasound.

My last ultrasound was in November, and my most recent CT was in February. I asked for, and have received, the radiologist's written report, since I won't see the oncologist until Thursday. However, I don't want to comment on it until I have Dr G's take on the scan and his projections on what to do next: continue on Gemzar, start a new chemo, or maybe try estrogen priming, something he's mentioned recently.

I'll know more on Thursday....

Chronic insomnia

This not-sleeping business is for the birds. I get into bed around 11:30 PM and invariably fall asleep around 2:30 AM. How do I know this? It's the last time I look at the clock until 5:30 or 6 when Rik and Bobka the dog get up. Then I wake up again once an hour, every hour, until I give up and get out of bed around 9 AM.

Is it due to chemo? I have no answer for this one, but I haven't had treatment since April 11.

Is it due to tapering off the sertaline (anti-depressant)? I've only got a week more until I am off it completely, so we'll see what happens next week.

Is it due to not enough exercise? Even when I take the dog on a really long walk for 20 blocks, I still have trouble falling asleep at night.

Is it due to napping in the afternoon? Well, this is a no-brainer. But if I don't sleep at night, and I'm tired during the day plus fatigued from chemo, a nap seems inevitable.

Just grousing here -- I don't really want advice. But I am tired of being tired.

Passover baking

We're having a great visit with my mom. Between the seders, walking the dog in the rare Seattle sunshine, and doing a little shopping today, it's been a fun week.

I also did some more Passover baking today. Following the instructions for pate a choux in Julia Child's "Mastering The Art of French Cooking," I made matza meal rolls, which are basically the same thing made with matza meal and oil instead of flour and butter. They're a nice change from matza all the time!

Here is my family's recipe:

1/2 cup vegetable oil
1 cup water
1/2 teaspoon salt
1 tablespoon sugar
1 cup matza meal (or combine half matza cake meal)
4 eggs

Preheat oven to 425 degrees.

In a saucepan, bring to a boil oil, water, salt and sugar. Add the matza meal all at once and stir vigorously with a long-handled spoon until the mixture pulls away form the sides of the pan. Cook and stir one more minute. Transfer to bowl of stand mixer.

Make a well in the center of the dough and beat in eggs one at a time. Make sure the paste is smooth before adding the next egg. Beat mixture until shiny and smooth.

With wet hands, shape into rolls about two inches wide and one inch tall (dough is very sticky). Place on an oiled or lined baking sheet about two inches apart. Bake at 425 degrees for 20 minutes. Reduce oven heat to 350 degrees and bake for 10-15 minutes longer. The rolls will double in height, puff up and be golden brown.

Remove pan from oven and make a one-inch slit in the side of each roll. Turn off the oven. Return the pan to the hot oven , and leave it in with the door open for 10 minutes.

Rolls this size will have damp centers, which Julia Child recommends removing through the slit with the handle of a teaspoon OR cutting the rolls into halves horizontally and removing the damp centers with a fork. Or you can just do what we do in my family, and ignore any damp spots and eat them hot from the oven with a little butter or cream cheese. Delicious!

* You can also make smaller rolls one inch in diameter and 1/2 inch high. Bake at 425 degrees for 20 minutes, slit the side with a knife, and return to the hot, turned-off oven for 10 minutes with the door open.

* To make cheese puff appetizers, beat one cup grated cheese into the warm dough.

* To turn into cream puffs, fill with ice cream or custard and top with chocolate glaze.

Passover update

I've been frogged!

We had a great seder with ten family and friends. Between the Passover charades, the loud singing, throwing the frog plagues and giggling hysterically while N gargled the "water" part of Chad Gadya, we had a rocking good time.

Our menu:

Bubbe Sara's seder plate

Ashkenazi charoset (apples and nuts with wine and cinnamon
Sephardi charoset (dried fruits with Yemenite spices)

Fresh-grated horseradish root

Crudites with guacamole and onion confit
Gefilte fish with both white and red horseradish and hard-boiled eggs
Chicken soup with knaydlach (floaters, not sinkers)
Green salad
Roast turkey and chicken in white wine with artichokes, leeks and mushrooms
Quinoa with mixed vegetables

Francois Payard's chocolate-nut cookies  Coconut macaroons

And matzah, and LOTS of wine, including a Canadian Okanogan Valley ice wine for the final two cups.

If you celebrated Pesach, I hope your holiday was as much fun as ours!

Happy Passover!

The house is clean, the cooking is done, the table is set, and I've got a short break before we begin celebrating Passover with family (my mom) and friends (family of the heart).

My favorite line from the haggadah goes like this: In every generation, every individual should feel as though he or she had actiually been redeemed from Egypt.

The Hebrew word for Egypt is mitsrayim, meaning "from the narrow places." So going forth from Egypt refers to going from slavery to freedom, as well as it can mean leaving our troubles behind us. Many of us carry our narrow places with us all the time. For me, living with advanced cancer is that narrow place. I try not to carry it around with me, but life in CancerLand is an ever-present constant in my life.

This Pesach I celebrate that I have the strength to clean the house, make the seder, and enjoy being with family of all kinds. Again I will try to leave my personal mitsrayim behind and enter into the freedom of enjoying life.

To cut or not to cut?

My post-chemo, newly curly hair had grown in clumps, making me feel a little bit like Bozo the Clown. I was faced with one of the most challenging post-chemo questions a woman can ask: Should I have my hair cut or not?

You see, women don't usually expect to go bald at any point in their lives. Okay, maybe some changes in texture due to biochemistry associated with pregnancy or menopause, but bald? That's for men.

So when I lost my hair to chemo, it was a shock in more ways than one. Not only did I not look like myself to myself, I actually looked like my father even more than in the past. (He started balding young, and I've always had his high forehead.)

Watching my hair grow back from practically nothing over the past few months has been a good reminder that even chemotherapy leaves the body eventually. I began to look more like myself to myself, albeit myself with the kind of 'do I used to pay money for. I still didn't have bangs, so my high forehead was clearly visible. My new curls gave hope to other women in my support group who lost their hair to chemo.

But lately even these new curls felt out of control, so today I took the leap and decided to have my hair cut. The new cut is a tad shorter than I wanted, but more even all the way around, and closer to the shape of my head. And since hair does grow back eventually, when it does, it will grow evenly and not in clumps.

Gemzar dose #5

Yesterday I had my fifth dose of Gemzar (the first one of the third round). Although everything was slow to get started, I had a hot mocha in my thermos, cold seltzer in a can, a good book (American Rose, the new biography of Gypsy Rose Lee), the daily crossword puzzle and a couple of new apps to play with on my iPhone. My hematocrit was a little bit down, but it's been lower and Dr G has still decided I should get treatment.

I ran an errand and picked up ground sumac at the new Penzey's Spices store downtown, then came home, spoke to my Mom and my Mum and took a three hour nap on the sofa. Made some chicken soup for dinner, enriched with leftover meatballs and vegetables, a beaten egg and lemon juice (sort of a poor man's avgolemono soup, not nearly as good as at the Continental). You can find a recipe here.

In the evening I ran a small fever of 99.7 degrees, but a Vicodin  brought my temperature down. At 4 AM I awoke with another fever. Luckily I keep meds bedside as well as a glass of water. I sleepily reached out and took another Vicodin, which soon addressed the headache, achy back, night sweat and other fever symptoms. Of course, at that point I realized I had to use the bathroom, so I took my temperature and saw that the fever was only 99.3 degrees. (I am supposed to call the oncologist if a fever hits 100.5 degrees but decided it was the better part of valor to take the Vicodin and not wake anyone else at 4 AM.)

Eventually I fell back asleep around 6 and stayed in bed until just after nine o'clock. I plan to take things easy today. If the runny nose continues and the fever climbs to that magic number, I promise I will call the doctor's office.

Accidental remembering

As I walked out of the treatment center today after getting my Xgeva, I saw, out of the corner of my eye, an older man in a chemo chair. He looked so much like my dad z"l at around age 65 that I actually did a double take. Sure enough, same style eyeglasses, same shape face, same receding hairline. This man was covered up to his chin with a blanket, so I can't guess on other resemblances.

I felt I could hardly stop and interrupt him to say, "Wow, you remind me of my father." But I mentioned the incident at my support group later that afternoon  and was surprised that I teared up.

My dad's been gone for a few years and most of my grief has come and gone. Still, unexpectedly seeing what might have been his face triggered more sorrow than I expected.

May your memory be for a blessing to all who knew you, Daddy.

Next steps

I saw Dr G briefly today while getting my monthly shot of Xgeva, the bone strengthener that replaces Zometa. (The nurse wanted him to oversee her giving the shot, and indeed he caught her recapping the needle, evidently a no-no.)

Dr G wants me to have Gemzar next Monday (dose #5). He also wants me to have another MRI of my liver. My recent tumor markers indicated a slight increase from the previous lab, but tumor markers alone have not been conclusive for me in indicating disease progression. The MRI should indicate if the liver mets are larger or more numerous than the last time, and whether or not the Gemzar is effective. I have asked for no chemo on Monday April 18 because of Passover beginning that night (we will have a houseful of people) and I won't have chemo on April 25, since my appointment with Dr G is later that week. Then we will review the MRI results and make a plan.

Meanwhile I'm waiting for a call to schedule both Monday's chemo and the MRI. I guess I'll need a ride to and from that test, since going headfirst into the MRI tube exacerbates any claustrophobia I might have. I do wear an eye mask to prevent me from seeing just how close the top of the tube is to my face. Fresh air blows at all times, plus they give you a panic button to hold in case it gets too intense. Still, I think I will take some lorazepam just in case and let someone else do the driving, whenever the test will take place.

Spam

I know that some of you read this blog more quickly than I post to it. Occasionally I get spam comments, and some of you have told me about them. Be advised, I use comment moderation, which allows me to see potential spam before it gets posted to my blog. That catches most of the problems but not all of them.

The spam comments may appear to be from a medical provider of some kind, or a bogus sender, and are often written in very poor English. The content tends to focus on how I'm doing a great job but need to stay on my chemo (duh) or start their special "cure."

A recent quote: "Yes, in due time to answer, it is important" (note no punctuation)
Recent senders: Atlanta cosmetic surgery; top canadian online gambling echeck bonus

I firmly believe that if there was a cure for breast cancer, my oncologist would be rushing it in my direction. He gets about 100 RSS feeds on cancer every day. I get a weekly update from Google Alerts. Together we keep up with the latest developments.

So if you would-be spammers read this message, please stop sending me ideas for a so-called "cure." Don't bug me or anyone else with cancer. We have enough on our plates as it is.

Getting back to normal

I seem to have a little more energy today.

I kind of overdid things on the weekend: helped at synagogue and led the musaf service in the morning, then ushered at the Paramount Theatre in the evening. Billy Elliott was very enjoyable, even though I didn't walk out humming any of the songs. Still, the number of kids dancing onstage was satisfying to this former dancer, and the kid who played Billy was wonderful.

At my request, the Seattle Theatre Group staff placed me behind the desk handing out electronic hearing devices. This kept me from having to touch hundreds of tickets held by other people. Then at the end of the evening, several cast members came out to the lobby to collect donations for Equity Cares/Broadway Fights AIDS. That reminded of when I worked for the NW AIDS Foundation. I reminisced with the cast and house staff about collecting donations for Audiences Fight AIDS, then counting all the dirty dollar bills afterwards. They don't call it filthy lucre for nothing!

All this meant I had no reserves for Sunday, could hardly walk the dog with Rik much less get started on the ironing. I did nothing all day long.

Monday was somewhat better. It felt like I spent the entire day in the car. Well, an entire day for me, which is only about four hours. I took the dog to the groomer; went to the bank, library and Costco; picked up the dog with his new REALLY short haircut; and took Rik home from school. Then I crashed.

Today was also productive. I had an afternoon meeting, then did the rest of the grocery shopping at the local Whole Foods so we could support Seattle Public Theatre, which today received 5% of the store's sales. I did find almost everything on my list except the sumac. I anticipate a trip to Market Spice soon, the only place in Seattle where I can find it in bulk.

Still waiting to hear back from Dr G's office about whether or not I will have chemo next week.

No April Fools - I feel better

After Wednesday's marathon outing with a friend, followed by an evening meeting, I was pretty pooped all day Thursday. I even took a morning nap after walking the dog, and had practically no energy during the day. In the evening I ran one degree of fever, which no doubt contributed to feeling general icky.

Today, however, I woke up feeling alert and refreshed after a good night's sleep (despite the dog barking at 5 AM to be let outside to chase a critter). I had a morning meeting over late breakfast at The Greek, more commonly known as The Continental (reviewed here in today's Seattle Times). After munching on coffee, a lamb patty, scrambled egg and Greek fries, I was ready to face some errands. I LOVE those Greek fries, especially the extra-crispy ones, heavy on the salt and oregano! I came home around 1 PM and needed to lie down but not sleep, so I just closed my eyes and cuddled with Bobka the dogka.

An hour later, I got a second wind and so far have done three loads of laundry, put clean sheets on the bed, baked a pan of Olive Oil and Coconut Brownies, washed all the dishes and updated this blog. Next should be another quick shluf (nap) so that I have the energy to go to dinner at a friend's house.

I think I will save all the ironing for Sunday.....