January 29, 2010

Pre-op talk with anesthesiologist

After talking with the nurse for the pre-op conversation, I asked her about the likelihood of the anesthesiologist using my brand-new power port for the surgery. She gave me the number to the anesthesiologists' staff room, where I was connected to Dr. Jonathan Maron.

Dr. Maron was great. He listened carefully to my question, gave me a complete answer, and all on the fly. I have no idea what he was doing at the moment I called, but he had no way to expect a call from a patient he hadn't met.

He told me that they absolutely could use my port for anesthesia. But if they found during the procedure that I needed fluids more quickly than the port could provide, they would then start a line. Of course, I hope that won't be necessary. I am a hard stick on the best of days and when fully hydrated. Given that I can't drink or eat after 7 AM, my veins will no doubt have shriveled up. And given that there was trouble starting an IV line for the insertion of my power port in late December, who knows what kind of condition my veins will be in?

At least I learned that there are limits to the speed with which a port can bring in fluid.

Dr. M also answered my questions about how best to prep my lymphedemic arm for surgery. We agreed that I should bandage instead of wearing my sleeve and glove. I like this not only because I can leave my arm wrapped for longer periods of time (and can sleep all night this way if needed). It would completely freak me out to find, for instance, that they had to cut the very expensive sleeve for any reason. In a situation like that, who cares about the cheaper fleece and padding?

Pre-op phone call

I really don't remember going through all this pre-op stuff in advance of scheduled surgery the last time I had a procedure. yesterday I had booked 30 minutes to take a phone call from a nurse. She wanted to review my entire medical history as known at Swedish, which goes back to 1988, before I moved to Seattle. (I imported medical records from my time in Washington DC.)

The nurse also reviewed my current meds, did a screening for domestic violence ("Are you safe where you are now?"), asked if I take any recreational drugs, and generally kept me talking for almost an hour.

The funny part was that even with all the information this nurse had available, much of it was wrong. Wrong date for a procedure. Wrong procedure, right date. Same procedure entered three separate times but listed differently each time. I realize some of this was due to the merger between Swedish and Providence hospitals, but really! Why wasn't the confusion cleared up the last time I had surgery, in 2005?

January 27, 2010

Pre-op appointment

I met with the GYN for a pre-op conversation today. There's been some hoohah. It was tough to get an appointment within Rik's travel plans but they were able to fit me in. I learned yesterday that they needed to draw blood for labs and had just had my port accessed for zometa on Monday. If they had told me when scheduling, it could all have been done in advance. Yesterday's mail contained the hospital's pre-op instruction sheet. Thankfully it arrived in advance of today's visit with the doc so I could review and ask the appropriate questions.

Dr. F has a good bedside manner and lots of experience, so I plan to trust her with my life. I like how she looked at my tummy and said, "Oh, you have a tiny belly button. It'll be a bit bigger after this." And "I didn't hear a heart murmur. Let me listen again." She listens well. When I told her I was prone to infection, she was able to change her usual practice regarding antibiotics and bump up the dose for me.

I think I am as ready as can be. I bought the special pre-surgical scrub, Hibiclens. I have to take a shower the night before and the morning of the procedure (so I will be very clean). Because the surgery is scheduled for 3 PM, I can get up early that morning and eat some breakfast. Otherwise it would be a long fast from midnight until late afternoon. I am allowed to take pain and anti-anxiety meds with a sip of water if I am uncomfortable or stressed that day. I will be cleared to drive as soon as I feel well enough to do so.

It's hard to prepare for surgery but I think I have done my part. And my doc told me she appreciates a patient who takes charge!

January 22, 2010

Surgery scheduled

I just got the call from the surgery scheduler with a date for the hysterectomy - luckily, well before Rik is supposed to lead that student tour to northern Ireland. I'll stay overnight in the hospital and have been told to expect a quick recovery since this will be a laparoscopic procedure.

I am relieved to have a date and glad to have this settled sooner rather than later!

January 21, 2010

Hadassah medical personnel on the front lines of Haitian relief efforts

This press release from Hadassah came to my email in box today. I am so proud to be a life member of Hadassah!

(January 20) Israel was among the first responders to the crisis in Haiti last week, sending IDF rescue troops and medical personnel from Hadassah and other hospitals within days of the devastating earthquake. Because of Israel’s long experience with bombs and terror attacks, the army and medical community are expert at handling emergency rescue and medical crises.

Hadassah is proud that doctors and an OR nurse from Hadassah Medical Organization are among the personnel that, in short order, set up a tent hospital that includes surgical and medical departments, two operating rooms, an intensive care unit, an emergency room and a maternity ward. Translators accompanied the Israeli contingent to aid doctors. The hospital is set on a soccer field in Port-au-Prince.

After setting up the hospital equipment, the doctors worked the first 36 hours straight, operating on more than 70 patients and treating countless others for infection, first aid, broken bones and more.

Doctor Shir Dar, an OBGYN from Hadassah Ein Kerem, delivered the first baby born at the Israeli field hospital--a joyful sign of life amid so much death and destruction. The grateful mother said she will name her son Israel.

Also working at the field hospital from Hadassah are orthopedic surgeon and anesthesiologist Dr. Taras Shirov; Dr. Revital Hivert of the Department of Prosthodontics; and OR nurse Reuven Gelfond from Mt. Scopus.

When the hospital ran out of bone screws needed to treat fractured limbs, the resourceful Nurse Gelfond located a nearby factory and guided them to create the screws from simple nails.

At Hadassah, healthcare is our heritage, and it is rewarding to know that every day we deliver the most advanced medical care in the Middle East. We have reached out often to relieve suffering around the world—from humanitarian rescue in Southeast Asia to the earthquake in Turkey, from AIDS care for children in Ethiopia and Kazakhstan to lifesaving pediatric heart surgery in China.

In Haiti we continue our work, building bridges to peace through medicine.

Hadassah, The Women's Zionist Organization of America, Inc.
50 West 58th Street, New York, NY 10019

May her memory be a blessing

Baruch dayan emet, blessed is the true Judge.

We heard today that Rik's grandmother passed away early this morning. Marcelle Gignac Ingelrelst Smith was 97, a French Canadian from Montreal, and the last of 23 siblings.

Marcelle always had the most fabulous smile. Rik took this photo when she met her great-grandson Marcus for the first time.

I asked my mother-in-law to tell me more about the feisty, independent woman Rik called "Nanny."

Marcelle was born into a large French-Canadian family. From the ages of 5 - 14, she lived in a boarding home run by Catholic nuns and only made one visit to the family home when her mother died. She had a golden voice but her father would not permit her to perform. Consequently, she developed a strong spirit of independence and married at 22 to a man who would let her be herself.

Her beautiful voice led her to take singing lessons. She later performed in a radio soap opera. Marcelle picked up the string bass and performed in three symphonies in Montreal. She was one of the first women musicians to play Carnegie Hall with the Montreal Women's Symphony in 1947.

Nanny had a wonderful marriage to Richard Ingelrelst. They were active curlers, tennis players and bowlers. Their daughter, Carmen Josee, later named her own first born (Rik) after her father. Marcelle was widowed at the age of 49. She later moved to Florida where she worked for the Jordan Marsh department store as an epicure and sommeliere. In Florida she met and was married to Ray Smith for 20 years until his death in 1992.

Nanny started yoga in her 30s and continued her practice for 60 years. She took up china painting at age 73. She truly lived her life in the arts.

When I met Nanny she was 82 and Rik told me she was frail. She travelled alone by airplane from Florida to Seattle for our wedding, and got off the plane wearing a chic suit in pink (her favorite color) and high heels. Feisty would be a better word to describe Nanny!

Zichrona l'vracha, may her memory be a blessing.

January 17, 2010

Yes, a hysterectomy is in my future

The good Dr G communicated with my new GYN, Eleanor Friele, and they agree I ought to have a hysterectomy. Dr. F's office told me their surgical coordinator will contact me, hopefully by the end of the coming week. I did ask that if possible we try to schedule the procedure so that I can be mostly recovered before Rik leaves to escort that student trip to northern Ireland in February. "We'll see what we can do."

The plan is for me to have the hysterectomy, recover, and then Dr G will decide on a treatment plan: Continue with the Fareston (toremifene)? Explore estradiol? Look into another chemo? The possibilities loom large.

January 14, 2010

More grey Seattle days

I know I shouldn't complain about winter when we live in one of the most moderate climates in the nation, but these grey, wet days are making me crazy! The sun hardly seems to come up until 9 AM. The heavy rain makes it too wet to take the dogs for a big walk, so Bobka doesn't get enough exercise, then wakes up during the night. I come home from a walk and only want to curl up on the sofa, which leads to more naps than I need. (My recent bout of vertigo only aggravates this tendency.) Rik came down with a cold and I made a pot of chicken soup, but that's been the limit for my creativity.

Pumpkin is content to snooze all day and evening. He's the only one who is happy.

January 13, 2010


Last summer I had vertigo for about a week. I would lie down on the bed and the room would spin. Actually, just my head, but it felt like the room was spinning. It resolved naturally and hasn't troubled me again until this past weekend.

On Friday and Saturday nights I had the same feeling of the room spinning. Then nothing Sunday or Monday but on Tuesday the vertigo reappeared to a lesser degree. I mentioned it to Dr G when I saw him on Monday.

I am trying not to move my head too rapidly or look up and down or from side to side too quickly. So no more typing today!

Hopefully this will resolve soon on its own as well.

January 12, 2010

Test results

Good news -- the GYN's office called yesterday to say that my Pap smear and endometrial biopsy were both normal. But when I saw Dr. G later the same day, he told me that he thought I should consider having a hysterectomy. Evidently the vaginal bleeding was cause for concern on his part. And of course having one cancer makes you more likely to get a second cancer. We took care of the risk for ovarian cancer, which is most closely related to breast cancer, when my ovaries were removed. But uterine cancer is quite dangerous and no one wants me to be at risk for that.

Dr. G was going to talk with the GYN doc and get back to me today. I expect that they will both agree that I need the hysterectomy. At least it could be done via laparoscopy (where they enter through the belly button), and so would have a much faster recovery than the traditional entry through the lower belly. I had a similar procedure about 25 years ago and they told me to expect a six week recovery. (Of course, I led a tour to Israel in the seventh week, but still...) That was half my lifetime ago, and I don't think my bounce back from a traditional surgery would be the same now. So if a hysterectomy is in my future, I hope it will be via laparoscopy.

January 10, 2010

Comfort food

When I was a kid my favorite food after chocolate pudding was Rice-A-Roni, "the San Francisco treat!" Something about it completely appealed to my taste buds. Was it the toasted pasta? The chicken flavor? I've never been sure. Risotto comes close but can be more hassle to make.

As a kosher-keeping Jew, I can't cook Rice-A-Roni in my kitchen because it's made with non-kosher chicken flavoring. But a friend recently served me something she called "rice with stuff" which tasted just like my childhood fave. She shared the recipe with me and I am sharing my brown rice adaptation with you.

Jill's Homemade Rice-a-Roni
(serves four)

3/4 cup brown rice
1/2 cup tiny broken pieces of vermicelli (or orzo pasta)
1 small onion, chopped
2 1/4 cups chicken or vegetable broth
2 tablespoons olive oil
1 teaspoon salt (optional)

Preheat oven to 350 degrees.

In an oven- and stove-proof pot that has a lid, saute chopped onion in olive oil. Add pasta and continue to cook until it begins to brown. Add rice, pour broth over rice/pasta mixture and add salt if desired. Cover with a tight fitting lid and place in hot oven. Bake 1 hour until rice is tender and all liquid has been absorbed.

I also saute mushrooms and other vegetables with the onion to boost the flavor and add even more fiber. Last night's version included artichoke hearts in olive oil and was very tasty!

January 08, 2010

Need a nap

Bobka, the number two dog, has been getting up several times a night every night this week. He wanders around the house. Sometimes he needs to go outside and then he stands by the back door and barks. Since both dogs sleep on the bed with us you can see how this is a problem. Pumpkin, of course, sleeps through everything. I swear that dog has a cast-iron bladder, despite his advanced age.

Rik has mostly gotten up with Bobka this week. That's on top of working one night at Antioch University and waking up at 6 AM every day to teach. I offer to get up. If I am having a night sweat it's no hardship to get out of bed and cool off, but sometimes Bobka wakes me up from a sound sleep and then I can't move.

So I have been taking a morning nap every day and today I missed my yoga class. There has got to be a better way to deal with this. Dog training tips, anyone?

January 07, 2010

Managing lymphedema

My hand has continued to swell from lymphedema, a continuation of the troubles that started Labor Day weekend in September. I've been so tired of wearing my glove and having a sweaty hand all day long. Rik got sick of hearing me complain and came up with a suggestion -- why not stop wearing the sleeve and glove for a day and see what happens? At most it would be the same or a little worse. At best maybe there would be some improvement.

On Monday morning (three days ago) I did not put on the sleeve and glove. By evening my hand had actually reduced in swelling. So on Tuesday morning I took out the measuring tape and a pad of paper and noted my arm measurements in four places: hand, wrist, 12 cm up the forearm and elbow.

I have not worn the sleeve or glove all week. My measurements have been about the same: a little reduced in the hand, wrist and elbow, a little increased at the forearm. We're talking millimeters of decrease or increase, but as long as the cold weather continues, and my measurements don't change dramatically, I think I will continue the experiment.

I developed lymphedema just a month or so after my lumpectomy in 1999. I had a life-threatening infection of toxic shock syndrome from the drain left in the axilla (underarm) incision. This infection, coupled with the removal of lymph nodes at the axilla, most likely caused the lymphedema.

I haven't not worn a sleeve in almost 11 years. Let me tell you, it's downright weird to feel the fabric of my clothing against the skin of my left arm.

I don't think my lymphedema is gone forever, but this is sure a great break from wearing the compression garments and not having full use of my left hand.

January 05, 2010

Side effects and what they lead to

Last week I began to experience vaginal bleeding. It was listed as a side effect of the toremifene, so I called my oncologist, who ordered a uterine ultrasound and asked me to see a gynecologist. He also stopped the toremifene. I had only been taking it for about 2 1/2 weeks.

My primary care physician referred me to a very nice GYN with a great sense of humor. She performed an endometrial biopsy, which was just on the edge of painful even with some topical anesthetic. I expect the lab results in 7-10 days. (The results may arrive in time for my appointment with Dr. G next week.)

You may ask, why the rush to deal with this side effect? Well, vaginal bleeding is listed as a serious side effect of the toremifene. As with any cancer, the patient has a chance of developing a second cancer. In this case, they would be concerned about uterine cancer, since I no longer have any ovaries.

The GYN assured me that in most cases the result of the endometrial biopsy is benign, but because of my complicated medical history, we should wait and see. I suppose there is a chance I would need a hysterectomy, but it's too soon to speculate.

So we wait and see. Again.

January 03, 2010

Ice cream for breakfast!

Today we went to Molly Moon's Ice Cream Shop to have ice cream and oatmeal for breakfast. This festive tradition started last winter and we like to go at least once during the season. On fall and winter weekend mornings, Molly Moon's serves freshly made steel-cut oatmeal with the ice cream of your choice and toppings such as frozen berries, chopped nuts and chocolate, maple syrup, brown sugar, spices, etc. Coffee and orange juice were included.

Being kosher-keeping Jews, we didn't choose the maple bacon flavored ice cream. Instead I had salted caramel ice cream and Rik selected half maple walnut and half cardamom.

This is such a delicious way to start the day! It reminded me of International Ice Cream for Breakfast Day, which friends introduced to us last winter. Family created, the tradition is to:
1) eat ice cream
2) for breakfast
3) on the first Saturday in February.

We hope to be among the many people worldwide celebrating this tradition in 2010.

January 01, 2010

Happy new year to all

I woke up a little grouchy this morning, still a bit sore at the new port site, but thrilled to take a shower for the first time since Wednesday. After eating breakfast, I was alert enough to realize that IT'S A NEW YEAR!

I wasn't sure I would live to see 2010 after having been diagnosed with metastatic breast cancer. But I am pleased to be here to celebrate the turning of a new year and a new decade. And to remember those we love who are no longer with us. (Emily, I am thinking of you today.)