Lincoln County News
April 22, 1999

"LifeLines" My journal about living with cancer

by Sandy Labaree

This journal submission describes my appointment with Dr. Tom, and a weekend home alone filled with restaurant reviews and tons of peep mail. I return from Dana Farber with encouraging news and two treatment options.

April 10, 1999: In news on the insurance front, Ben arrived home yesterday with two temporary insurance ID cards he procured from the agency handling our new Aetna NYLCare policy. Hopefully, the cards will get me in the door to Dana Farber next week. Despite these cards, Aetna says we are not in their system yet. This does not bode well for my upcoming Dr. visits and billing. I have now taken to calling Aetna NYLCare, "DenialCare", stealing a phrase from Carolyn Boyer's article in the Wall Street Journal that described her insurance nightmares.

I am on my own for the weekend. Ben left yesterday for Philadelphia and his father's 90th birthday party, a big celebration with friends and family that I did not feel up to attending. My back and energy levels can't withstand a 900 mile weekend car trip. Thankfully, Christy is joining Ben and representing our side of the family. Meanwhile, Lurk and my friends are in charge of taking care of me and keeping me busy.

Tonight, Paul, Sue and I stick to our Friday restaurant review with a trip to Kristina's in Bath. We are seated in a small cozy dining room and our waitress presents us with a wide-range of menu selections. After vacillating between several choices, Paul orders the pork in ginger sauce, and Sue and I choose the sliced roasted duck in fig sauce with portabello mushrooms. Our entrees are superb and the rolls from Kristina's own bakery are fantastic. For dessert, we order two incredibly delicious cinnamon apple bread puddings, and cannot finish them. One would have been large enough for the three of us. The dessert selections from the bakery are mind-boggling. Tempting samples of all of Kristina's baked goods are displayed in a large bakery case in the entryway to the dining room.

Tonight, Sue brings me more fan mail from my readers. Recently, I have been struggling to keep up with my mail. Most are notes with newspaper clippings about peeps. My editor was remarking on the huge volume of mail I have been receiving lately. Sue told her it was peep-related. I have received notes and articles from all over the country: NJ, PA, CT, MA, IN, AZ, OH, many from our "snowbirds in FL, and of course, ME. I am overwhelmed, or should I say peeped out! Last year when I wrote about my peep addiction, I mistakenly thought I was one of maybe ten adults who admitted to liking or eating peeps. I am now humbled by the world-wide peep phenomena.

April 11, 1999: Tonight, is another restaurant review by demand. One of my friends and associates from the American Cancer Society regularly follows my column and restaurant reviews, and asked if he could be part of a review sometime. I suggest we meet tonight for dinner as Ben is away and it will keep me busy. Bob is very excited to be included in a review and having his name mentioned in my column.

After discussing a few possibilities, we decide on Cook's Lobster House. Traveling to Bailey Island and dining overlooking the ocean while it is still light at 7 pm., is a true rite of Spring. It is breezy and nippy tonight, but Cook's is warm and inviting. We are seated at a table overlooking the harbor. Seafood is the selection of choice at Cook's, though they do have steaks, prime rib and chicken. I choose the smaller size portion of fried clams in crumbs and Bob has the sautéed scallops almondine. Both are excellent and the homemade lemon Dijon salad dressing on my salad deserves special mention. For dessert, Bob and I both select the evening's special, an orange bread pudding. A light and a perfect ending to a great meal. Though I tried not to spend the whole evening discussing shop talk, we couldn't avoid it. Bob heads Patient Services which supervises the Living With Cancer Conference, so we had much to discuss.

I am using my weekend alone to write an outline for my Conference speech. Usually, I talk off the top of my head with no notes, but this will be a 45 min. to an hour speech so I better be organized. I am also sorting through my slides. Thankfully, Ben will be running the slide show and projector because I am not mechanically proficient and can't talk and show slides at the same time.

April 12, 1999: Today, is my appointment and treatment with Dr. Tom. I show Tom a list of new hormonal research drugs that I found on the Internet. He looks through the list with interest, admitting he is not familiar with all of them. Most are clinical trial drugs just being released for public consumption. Tom exams me and reviews my latest aches and pains. We then talk about my upcoming visit tomorrow with Dr. Bunnell at Dana Farber. Like me, he is eagerly awaiting Dr. Bunnell's recommendation for my future course of treatment.

After Janice gives me my Aredia infusion, I gather up copies of Tom's records and office notes and head to MidCoast Hospital to pick up my x-ray files. The person at the desk in x-ray asks if I need help carrying out the two huge packets. I politely refuse, but they were so heavy, I could have used a cart to wheel them out to my car. Who needs an insurance card when I carry around this much documentation.

April 13, 1999: Ben and I drive to Boston for a 3:30 pm. appointment at Dana Farber. Traffic is awful. Today, is opening day at Fenway Park and we have to drive by Fenway to reach Dana Farber. We arrive with about three minutes to spare. Checking in with my fake-looking temporary insurance ID card goes smoothly, and shortly an assistant comes by to get my weight and vital signs. Within 45 minutes, I am in the examining room and being greeted by Dr. Bunnell. I was dreading a two hour wait like I had in the bone marrow transplant department last year. Mercifully, Women's Oncology runs much more on schedule.

Dr. Bunnell is very friendly and talkative. He has already read my Dana Farber file from last year. He asks me to describe my cancer in my own words from date of diagnosis to today. I am pleasantly taken back by this request as no doctor has ever asked me for my own version of events. Usually, they rely on the piles of records. I try to be brief, yet touch on the major points beginning with findings on my mammograms in 1988, up to today. Bunnell listens intently and asks a few questions for clarification.

Dr. Bunnell says that he has many options to offer me, especially regarding experimental treatments. He says that I am in "the perfect window" now for experimental treatment and I am healthy enough to undergo a chemotherapy clinical trial. "Chemotherapy" in this setting means any drug given orally or by injection. Dr. Bunnell thinks that standard IV chemotherapy using Taxol or Taxotere, though an option, is probably not best for me. He also feels that I have pretty much exhausted hormonal drugs, having tried four in the past. Bunnell offers me two options: entering the cancer vaccine trial or taking Femara, a new version of the hormonal drug, Arimidex. Back in September, I had a nasty reaction to Arimidex and ended up vomiting in my Dad's rose garden.

Dr. Bunnell suggests trying Femara (also known as Letrozole) for four weeks. If I have a reaction, I will stop it immediately. If not, I will continue on the drug and have a tumor marker test at the end of four weeks. If the tumor level has dropped and I am feeling better, I can continue on the drug. If test results are not good, I will stop the drug and enter the cancer vaccine trial, which sounds very exciting and is definitely on the cutting-edge of research. He gives me all the information on the vaccine trial, including the consent form.

Dr. Bunnell describes with much enthusiasm his own research using oral doses of newly engineered chemo drugs. He hopes to have a new trial approved next month using the old familiar 5-FU chemo drug, which has been chemically altered to work against cancer cells on an on-going, time-released basis. Preliminary research has shown these drugs to be much more potent in fighting the cancer cells than their predecessors. And oral chemotherapy is easier and doesn't require frequent visits to the Dr's office for IV infusions.

After meeting Christy in-town for dinner, Ben and I arrive home at 11 pm. We are tired and exhausted, but feel very encouraged and optimistic that many treatment options are open to me at Dana Farber.

Note: Sandy urges her readers to join her at the upcoming Living With Cancer Conference on May 6th at the Augusta Civic Center. For information and to register, please call 1-800-464-3102.

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