January 30, 2009

Stimulating the economy

I don't think I quite realized how much economic impact we would make by bringing a second dog into our home. Just in the past two weeks, we have purchased:

Bob himself (the breeder charged a very reasonable fee)
Gas to and from Selah, plus lunch on the road
Collar and leash (in red, natch!)
Name tag
First trip to the vet to check his weight (22.5 pounds) and get a health baseline
The larger, 15 pound bag of dog food
Chew toy (small Kong)
Dental treats
Dog bed
Pet registration with the city of Seattle

I know that by now we've spent more than $500. But Bob is worth every penny! And after all, we are stimulating the economy....

January 28, 2009

25 random things about me

I read about this on Facebook and thought it would be fun to share. It was tough but fun to write!

1. I can sing in 10 languages (English, Hebrew, Serbian, Croatian, Bulgarian, Hungarian, Russian, Greek, Albanian, French).

2. I don’t necessarily know what I’m saying in all these languages.

3. My left hand and foot are both larger than the right.

4. Although we left New York when I was eight, and even after a lifetime of adaptation, when I go east my accent comes back. Cup of “cawfee,” throw the “bawl”…

5. I prefer savory to sweet, except chocolate. Got to have my daily dose of vitamin CH, the darker the better.

6. By August 2003 I had outlived my life expectancy with metastatic breast cancer. Every day is an unexpected opportunity. Some days I feel this more strongly than others.

7. My husband has the biggest heart of anyone I know.

8. In high school we had to take three years of Latin. I was able to translate my cousin’s medical school diploma.

9. My favorite author is Robert Heinlein. When I heard on the radio that he had died, I pulled the car to the side of the road to weep.

10. There are more than 20 sites of bones metastases in my body.

11. I love to shop, not necessarily to buy.

12. But I do love a bargain!

13. Pulling weeds can be therapeutic.

14. I have a life-long fear of vampires. And Mr. Clean.

15. In November 1963 I had just turned four years old, and remember watching JFK’s funeral on TV.

16. My personal philosophy is Dum vivimus, vivamus – while we live, let us LIVE! I learned this from reading science fiction, specifically Robert Heinlein’s “Glory Road.”

17. I am a life-long Zionist and have been to Israel six times (1977, 1982, 1984, 1987, 2001 and 2003).

18. My favorite household tasks are polishing the silver and ironing.

19. Pumpkin is the shmoo and Bob is the shmoo two.

20. I ate a fresh, ripe tomato every day this summer and never got tired of the taste.

21. I can bake challah and get Shabbat dinner on the table in about two hours.

22. The only time I curse seems to be when I am backstage trying to change costumes in a hurry, and then I give myself full rein.

23. I read too much.

24. I recently lost seven pounds and have kept successfully them off. If you think this is easy while on weight-gain-inducing drugs….

25. I feel happiest when dancing.

January 27, 2009

UN International Day of Commemoration to honor the victims of the Holocaust

In 2005, the United Nations established an International Day of Commemoration to honor the victims of the Holocaust, to fall on the anniversary of the liberation of Auschwitz. That is today, January 27, 2009.

Click here to learn about The Holocaust and the United Nations Outreach Programme.

As British statesman and philosopher Edmund Burke said,
"All that is necessary for the triumph of evil is for good men to do nothing."

Let us learn from history.

Day 42 of lymphedema flare up

I am now on the 42nd consecutive day of dealing with this lymphedema flare up. That's six weeks exactly.

I saw the PT today and she said I'd had a 50% reduction in that arm and hand, but she also noted that in the past, I've had 100% reduction after treatment. So we are asking my health insurance provider to approve six more treatment sessions. Hopefully this will do the trick. (I don't know why they dole out the treatments in groups of six, but that's managed care for you.)

In the meantime, I will continue to post more infrequently than usual. My ability to use my left hand is extremely impaired when it's bandaged, and that makes it tough to type. And drive. And cook. And eat. I am so very left-handed, you see, that it's very challenging for me to use my right hand for everything.

The PT also told me that stress does not allow the lymphatic system to run at its best. We had a somewhat stressful weekend. The bandaging also contributes to my stress levels. Even taking a "chill pill" (i.e. lorazepam) doesn't help as much as it has in the past.

So my plan is to wrap my arm, pick up a good book, take some lorazepam, and cuddle on the sofa with the dogs. If that doesn't sound relaxing, I don't know what is!

January 21, 2009

Dancing with cancer

My friend Wynne, a young American-born Chinese woman living with metastatic breast cancer, wrote this terrific post on dancing with cancer.

When dealing with uncertainty, you search alot. You search for answers even though there aren’t any. It’s frustrating.

I just saw a posting on a bulletin board for people dealing with metastatic breast cancer, and I found a link to an article that led me to a quote:
She said no one defeats cancer; cancer is a dance partner you don’t want and don’t like, but you have to dance, and either you die or the cancer fades back into the darkness at the other end of the ballroom. I never forgot what she said, and think she is right, and the words we use about cancers and wars matter more than we know.

Cancer is a dance partner that no one wants! Often people speak of “battling” cancer. No one I know has ever wielded an axe to cancer. (If only it was so easy!) No it’s a complicated dance that keeps changing pace, and I never seem to get the steps!

Usually just as I learn the steps of one treatment, it’s time to learn switch to another! Let’s just say that I finally learned how to waltz, and now they expect me to rhumba?!?!?!

No wonder, I’m confused and frustrated!

And the other part of the quote which has some key points for me:
Maybe if we celebrate grace under duress rather than the illusion of total victory we will be less surprised and more prepared when illness and evil lurch into our lives, as they always will; and maybe we will be a braver and better people if we know we cannot obliterate such things, but only wield oceans of humor and patience and creativity against them.

I couldn’t have phrased it better. So here’s to learning how to rhumba, samba, foxtrot, mambo, hustle, do the macarena, electric slide, lambada, forro, tango, cha-cha, salsa, and jitter bug!

Wynne, I'm dancing as fast as I can!

REMINDER: Encore presentation of "my left hand"

Jewish Family Service will host another presentation of my friend Joshua Isaac's film, my left hand, on Thursday, January 29th. They are partnering with our synagogue, Congregation Beth Shalom.

Tickets are now available through Brown Paper Tickets.

my left hand: A film by Joshua Isaac
Thursday, January 29, 7:00 pm
Congregation Beth Shalom
6800 35th Ave NE, Seattle
1-800-838-3006 or www.brownpapertickets.com

Josh's parents were long-time members of Beth Shalom and he was raised in this community. Now as an adult he's an active member, raising his kids in turn. You can catch up on Josh's journey with advanced epithelioid sarcoma on his blog.

January 20, 2009

Yet another death

When I got the message about Rosalie, I knew I had to call Dolly Horowitz-Fried, my first Sharsheret link. We were matched up in 2002, only a few months after my mets diagnosis. I was in the habit of calling Dolly for Pesach and Rosh Hashanah, and had neglected calling recently.

Dolly's husband Kenny told me she died in April, after living with metastatic disease for many years. She leaves behind Kenny and their 9 year old daughter Odeliah.

In 2004, Dolly was featured in this article from the Jewish Daily Forward.

May her memory be a blessing.

Another death

I just learned that my friend Rosalie Becker passed away in November from metastatic breast cancer. Rosalie and I never met but spoke with each other over the past few years as links in Sharsheret , the organization for young Jewish women with breast cancer. She leaves behind a grieving husband and many family and friends.

You can read more about Rosalie here.

May Rosalie's memory be a blessing to all who knew her.

35 days bandaged

I just wrapped my arm again. It's been 35 days since the beginning of this lymphedema flare up and I still don't feel any closer to normal. I can manage for about 6 hours in my sleeve and glove, just enough time to accomplish some basic daily chores. Then my hand and elbow begin to really bother me and I tear the sleeve off and subject myself to the bandaging.

The PT is only available once a week for the next couple of weeks. I sure hope that's going to be enough to bring my hand and arm back to normal.

January 18, 2009

Welcome to "Bob"

We left this morning at 8:50 to drive to eastern Washington and were home by 3:50 with Truwain's Bobwhite, AKA "Bob" the (blenheim=brown and white) Cavalier King Charles spaniel. Both Bob and Pumpkin traveled well together, sleeping and relaxing in the back seat, each in their own dog bed.

While at the breeder's, we met Bob's mother, sisters, uncle, son and various other spaniel relatives. Here are 2 quick pics -- Bob in our yard and with his family. (Bob is the big dog on the far left. He easily outweighs his sibs at about 20 pounds. But this is apparently a healthy weight for him. For comparison, Pumpkin weighs 27 pounds.) It was so much fun playing with all those Cavaliers!

We hope Bob and Pumpkin will soon become the best of friends.

PS Eighteen is our lucky number. I proposed to Rik 18 days after we met, we got married on March 18th, and all our addresses have added up to 18. In Hebrew, every letter has a corresponding numeric value, and the word chai (life) equals 18. So the 18th of January is an excellent day to welcome Bob to our family!

January 16, 2009

More details on next steps

Here is the plan for the coming months --

We will follow the tumor marker CA 27.29, which tracks breast cancer activity, through monthly blood tests when I get my Zometa.

If the CA 27.29 rises, I'll have a PET scan immediately. Depending on the results of the PET scan, we may change my treatment to Xeloda (an oral chemotherapy), Megace (similar to progesterone) or something else.

If the CA 27.29 stays the same or improves, I will have another breast MRI and a PET scan in 2-3 months.

That the CA 27.29 dropped so dramatically in the past three weeks, from 69.7 to 17.3 (normal range is 0-38.6), is a good sign. Evidently stopping Tamoxifen was the right thing to do. If the CA 27.29 continues to stay low, it will be a good indicator that starting Arimidex was a smart choice.

Dr. G pointed out that he has a patient who had a five year run on Arimidex. That sounds good to me!

January 15, 2009

Good news for now

I saw both the breast surgeon and oncologist today. Although the biopsy pathology confirmed that the two spots in my right breast breast are malignant, the docs recommend staying with the same course of treatment for the time being -- no surgery, keep with the Arimidex. Both spots are just as estrogen receptor positive as all my other cancers have been.

In addition, Dr. Goldberg, Seattle's best oncologist, checked my CA 27.29 tumor marker from last week's blood draw and it had dropped from 67 to 17 (normal is about 30). So either stopping the Tamoxifen had an impact, or the Arimidex is working, or both.

I will post more tomorrow. In the meantime, this is good news.

Getting the biopsy results later today

I've been cranky, down, aggravated, low, frustrated and depressed for several days. Between my arm (still puffy but a tiny bit improved) and waiting for biopsy results, I've not been pleasant to be around.

Plus I haven't been able to focus the way I usually can, possibly because I'm so tired from not sleeping well while my arm is bandaged. Even with sleep meds, I'm not getting really good sleep until 6 AM or so when I tear the bandaging off.

I get the biopsy results later this afternoon, which I expect to indicate malignancy (i.e. cancer). I hope the surgeon and oncologist will have a recommendation for next steps today.

Thanks to all of you for letting me vent.

January 14, 2009

No more meltdowns for now

I seem to feel a little more under control. My arm appears to be improving, although I am still VERY tired of wearing the bandaging at night. The biopsy sites are healing nicely. Since I get the news about more cancer on Thursday afternoon, I hope to be able to accomplish some creative work today.

But that was some tantrum I threw on Sunday night! For those of you who think that living with cancer doesn't appear to impact my well-being, let me just say that I have my moments of howling with frustration, and last Sunday's was a champion meltdown.

January 12, 2009

After the biopsy

I had a different radiologist do the biopsy today and although I believed him when he said he does many, many breast biopsies every week, my experience was not so great. They give you lidocaine as a local anesthetic. In December, whether because a different radiologist treated me (who has cared for me before), the tumor being in a different location, or some other factor, I had no pain and everything went smoothly.

During today's procedure, with the first tumor located in the 10:00 position and almost to my armpit, the radiologist didn't give me enough lidocaine. When he punched out the tumor sample, it REALLY hurt! (Not as much as if I hadn't had any lidocaine, but still much more than I was expecting.) The radiologist listened to my complaint and added more lidocaine before taking the second sample, but same thing -- way too much pain. It was a good thing I had taken 1.0 mg of Ativan before the procedure, because although I yelped, I didn't actually move. He apologized profusely for hurting me.

When the radiologist did the second biopsy, he was sure to place some lidocaine just under the skin as well as all the way inside. That biopsy went smoothly, just like the one in December.

I left wearing a small bandage over each site and pressing an ice bag to my chest to reduce swelling and bruising. Rik and I were both hungry, so we went to the B&O Espresso for a yummy lunch of egg florentine (half-portion) for me -- I love that hollandaise sauce, must learn how to make it -- and a gyro sandwich for Rik. And since the pastry case was filled with gorgeous baked goos, we splurged on dessert. I had a divine eclair that tasted just the way I remember from childhood. Rik had apple-current pie and Turkish coffee. Then we went home and I crashed for hours. A whole milligram of Ativan will do that to you....

January 11, 2009

"I can't stand it anymore!"

At 3:30 this afternoon I had just finished wrapping my arm and was struggling to put on one of Rik's shirts when my frustration level suddenly zipped sky-high. I can't stand it anymore! The discomfort from lymphedema while wearing the sleeve and glove, my inability to do anything that requires the use of my hand while bandaged, the fact that I've already been bandaging for a month and that I likely have another month to go.

I stomped my feet, yelled out loud, and ran into the bedroom to deal with my frustration in the way that works best for me -- I took some Ativan and went to sleep. That was almost 7 hours ago and although I'm not Miss Sweetness-and-Light, I am feeling somewhat less stressed.

I ate some carrots dipped in hummous, drank a glass of water, and am heading back to dreamland. Maybe when I wake up I will be better able to deal with things.

January 09, 2009

Still dealing with lymphedema

My lymphedema flare up started 23 days ago. I am still bandaging from around 4 PM and throughout the night, wearing my sleeve and glove during the day so I have some flexibility to do things, such as wield a knife to cook, drive a car, put in my contact lenses. You know, the basics. Once bandaged I have limited fine and gross motor control -- that is, I can hardly hold a pen or a fork, have trouble lifting a glass. You get the picture.

Physical therapy will help, but the therapist is so booked that I can only get one appointment a week. So I imagine it will be another month before this flare up calms down. I have heard one should avoid stress, especially when facing more cancer, but dealing with lymphedema remains one of the most stress-inducing things to ever happen to me.

Pumpkin update

Today the Pumpster seems a bit improved. He is walking more steadily (no more drunken lurching). I have been encouraging him to go down steps one at a time for the past few days, and Rik just picks him up and puts him down. This afternoon he managed to get up and down the stairs from the deck to the back yard on his own. He ate with gusto this morning. But his head is still tilted to one side, giving him a rather inquisitive appearance. Still, this is a definite improvement!

January 08, 2009

Sick dog

In the past three weeks, Pumpkin has slipped on the ice, fallen off the bed, walked like a drunken sailor, and generally wobbled his way around the house. It turns out he might have idiopathic (sudden onset for no apparent reason) vestibular syndrome AND partial facial paralysis.

The vet also said it might be a brain tumor instead of the above, but I am not sure I want to do a neurological consult yet. So we are going to watch and hope the symptoms resolve themselves, as the linked articles seem to suggest.

Poor puppy!

January 06, 2009

Biopsy date

Looks like I will have the ultrasound and biopsy on Monday, January 12 and see the surgeon and oncologist for the results on Thursday, January 15. I don't expect to have more news to post on this topic until then.

MRI results

Yesterday's breast MRI was supposed to help track the spot in my left breast which was biopsied in December. This morning I got a call from my surgeon that the MRI revealed a surprise: two new spots in my right breast. Thank heavens that the breast MRI takes images of both sides at the same time!

I have scheduled an ultrasound and biopsy of these new sites and will meet with my breast surgeon and oncologist after they get the biopsy results to determine what change in treatment I might need, if any. (I've only been on the Arimidex for three weeks.)

After I said, "Well, I guess this means I need a mastectomy," the breast surgeon specifically told me not to project scenarios until we had more information. So I am trying to hold tight while I wrap my head around more cancer. Again.

Breast MRI

Yesterday's breast MRI experience was, well, an experience. After checking in, I was asked to put on a robe opening in the front. I decided to take off my sleeve and glove to be more comfortable. The technician escorted me to the MRI room, started an IV in my right elbow, while teasing me about bringing my own eye mask and ear plugs. (I may never have had a breast MRI before, but I'm a master at how to prepare for scans.)

I lay face down on the scanner bed, gown open in front, with my breasts hanging down into an open cradle, with my arms stretched out straight in front of me. There was a pillow under my shins but it's still not very comfortable to recline in this position. Try it sometime and you'll see what I mean.

This MRI tube was open at both ends, like a very wide donut, so claustrophobia was limited, but I had taken a smidge of Ativan anyway to relax.

The tech attached the IV to the machine that gives the dye via rubber tubing, and in my right hand I held some of the tubing. It was okay for my left hand to curve a little over my head. I adjusted the pillow under my face so that my nose got some fresh air and kept the eye mask over my eyes.

MRIs are really noisy. The clanging is kind of rhythmic but the beats are often out of sync with each other. It's a little bit of extra torture for anyone who's the least bit musical. The earplugs keep out some of the noise but not all of it. I was glad I'd taken the Ativan. The scan lasted 17 minutes.

My verdict? It had a beat but you couldn't really dance to it.

January 05, 2009

Great quote on death and loss

This lovely paragraph from Dean Koontz's book Odd Hours sneaked up on me:
Grief can destroy you -- or focus you. You can decide a relationship was all for nothing if it had to end on death, and you alone. Or you can realize that every moment of it had more meaning than you dared to recognize at the time, so much meaning it scared you, so you just lived, just took for granted the love and laughter of each day, and didn't allow yourself to consider the sacredness of it. But when it's over and you're alone, you begin to see it wasn't just a movie and dinner together, not just watching sunsets together, not just scrubbing a floor or washing dishes together or worrying over a high electric bill. It was everything, it was the why of life, every event and precious moment of it. The answer to the mystery of existence is the love you shared sometimes so imperfectly, and when the loss wakes you to the deeper beauty of it, to the sanctity of it, you can't get off your knees for a long time, you're driven to your knees not by the weight of the loss but by gratitude for what preceeded the loss. And the ache is always there, but one day not the emptiness, because to nurture the emptiness, to take solace in it, is to disrespect the gift of life.
The story was great too.

PS My favorite Dean Koontz book is Watchers. If you love dogs, you'll love this story.

MRI today

Today is the day I rescheduled the breast MRI which Iwas supposed to have in December, except we had snow. Well, three inches of snow fell again last night, but the weather warmed up overnight and the snow is melting into slush, so I will go for the MRI today. It does seem to snow on the days I have scheduled scans...

I've never had a breast MRI. It's done with an injection of a contrast dye, and they can't use my port since I have to lie face down and that would put too much pressure on the port. So I will also have an IV started in my elbow, but I'll tell them to use the small butterfly needle and it should be pretty painless.

I don't care for the narrow confines of an MRI tube, so I plan to take some Valium or Ativan and not care. Rik will drive me home.

The point of this test is to measure a baseline for the new tumor in my left breast. Then, after I've been on the Arimidex for a few months, I'll have another MRI and we'll be able to tell by the tumor's size (smaller or larger) whether or not the Arimidex is working.

January 04, 2009

Still lymphedema

My hand is still puffy with fluid and we never did figure out why. I see the physical therapist on Wednesday and hopefully some manual lymphatic drainage will help.

Rik had an idea -- could my lymphedema flare up be a side effect from the new treatment, Arimidex (anastrazole)? Some research revealed that about 11% of people taking Arimidex experience increased edema, but in about the same numbers as people taking Tamoxifen.

According to a recent blog post, I noticed increased lymphedema in my hand on the evening of December 17. I started the Arimidex the next day, so it's unclear if taking this new drug is related to the increased swelling or not.

Tomorrow I will call my oncologist to report this as a possible side effect. In the meantime I am still bandaging and cranky about it.

For some background, read my post What is lymphedema?

January 02, 2009

Florida part 2

The main part of our Florida trip was with Rik's parents at their winter home in a small town in central Florida. It's a tiny, sleepy kind of place. The biggest recent news locally seems to be the opening of the town's second motel. When we visit, we kick back, play games, read books and generally relax.

We celebrated 'tiB's 77th birthday at a party with some of their friends. Rik, Mum and I played a couple of rounds of Scrabble together. We picked oranges from the trees in their yard and drank freshly squeezed juice. The weather was sunny and hot the whole time we were there, and sitting on the lanai with a book was perfectly delightful.

When we arrived, and again just before we left, we were surprised by the presence of two red-crested herons from the nearby lake.

They travel freely through the town, always in pairs. One watches and guards while the other one grazes. They were a marvelous beginning and conclusion to our trip.

A (belated) New Year's greeting

(I either overindulged in champagne on New Year's Eve, or came down with a 24-hour stomach bug. Either way, I felt queasy all day yesterday, so am just now getting to the computer.)

I'm hopeful that in 2009 my new treatment option, Arimidex, will kick some serious cancer butt (as my mets-sisters say).

I'm thankful that in 2009 I don't appear to be facing a mastectomy.

I'm cautiously optimistic that as 2009 begins, my lymphedema appears to be getting back under control again.

Most of all I am still riding the cancer merry-go-round: sometimes sitting on the bench, sometimes riding the ponies up and down, but never getting off. That's my dance with cancer.