Lincoln County News
April 29, 1999

"LifeLines" My journal about living with cancer

by Sandy Labaree

This journal submission describes how a nasty reaction to a new drug, leads me to my next treatment option: the Cancer Vaccine Trial. Rave restaurant reviews, and lamenting the temporary loss of Karen's Restaurant where locals start their day.

April 15, 1999: Yesterday, Ben stopped at WalMart to fill my prescription for the new hormonal drug, Femara. Being so new, there was none available and the pharmacist kindly made several calls to check other pharmacies. Finding none, the drug was ordered and should arrive next Monday.

Today, Sue and I are meeting Mamie at Canfield's for lunch and an interview about the Living With Cancer Conference. Mamie is the former Area Director of the American Cancer Society and one of the Conference founders. Even though she's retired, she still actively volunteers for the Society. Mamie describes how she and two other women attended a Human Values Conference sponsored by the ACS in Chicago in 1977. On the way home on the plane, they thought why not do a Conference like this for cancer patients in Maine. Their idea became a reality two years later, when the first Conference was held in 1979.

April 16, 1999: The official restaurant review is postponed until tomorrow night as Ben and I are attending a Corvette Club meeting and Mexican Theme Night at the home of members, Jim and Tracey, in Dresden. We're all bringing Mexican food. I'm taking a guacamole dip with tortilla chips and pitchers of my sister Peg's homemade Sangria.

Tom and Charlene meet us at our house. Tom has fixed a huge pot of chili and Charlene had planned to bring salsa, but forgot it. Salsa is a staple in Ben's diet, so I give Charlene a spare jar from my cupboard. Tom and Charlene have their Corvette out tonight so we take a very windy back road that late model Corvettes such as ours just love in terms of ride and handling. Tom comments that we must come back in broad daylight, close the road off and really have some fun.

It's a very pleasant evening and the food is authentic, right down to Tracey serving burritos on broiling hot plates straight from the oven. Add to that salad, quesadillas and Spanish rice, and except for strolling guitar players, you'd think we are in a Mexican restaurant. Art and Bobbie join us as well. Art has a beautiful 1963 Corvette, same vintage as my old one that I sold last April. He bought it used in CA, when it was only 6 months old. It's a real collector's item. Our club meetings are strictly social and completely food-oriented. Corvettes are secondary.

April 17, 1999: Tonight, the restaurant review team travels to Portland to the Village Cafe. Village is one of the team's all-time favorite restaurants. Village only accepts reservations for parties of 10 or more, so we are prepared for a long wait, but we know the food is well worth it. We find a few seats in the bar and wait for only an hour.

Once we're seated, it doesn't take us long to decide on dinner choices. Village's Italian food is renown and Sue, Paul and I choose Italian specialties such as eggplant and chicken parmigiana, and angel hair pasta with meatballs, and Ben orders his favorite, the Cajun combo with super spicy haddock and steak. We all order Caesar salads which are excellent, and stuff ourselves with homemade Italian bread. Dessert is out of the question and doggie bags are needed for all of us. You can have a very inexpensive meal at Village. Ben's and my tab came to around $25.

April 18, 1999: Ben and I have breakfast at Karen's Kitchen this morning. We usually have breakfast there on a Sat. or Sun. I love the Belgian waffles and French Toast and sometimes I splurge with an Eggs Benedict. Karen is waiting on tables today, rather than working in the kitchen. I am planning on holding a breakfast meeting there later this month for a group of 8-10. I spoke to Karen about it a week or two ago, and I forgot to remind her. I plan to stop back and tell her later today.

Ben and I then drive to Augusta to see a little quarry and fish pond he's been telling me about. I have taken the left-over Italian bread from our dinner at Village Cafe to feed the goldfish and catfish. The pond is teeming with bright orange goldfish in assorted sizes and some good-sized catfish who ignore the bread while the goldfish nibble away. Finally, after most of the goldfish have finished eating, the catfish take over. They are all obviously well-fed as there are no food fights.

I have had two very good days this week in terms of energy and manageable pain. Today, however, I am very tired and in some pain. I tell Ben that even though it's a nice day for a ride, I am ready to go home. We arrive home to find that Karen's Restaurant is on fire! I feel so bad for poor Karen. She runs a comfortable, sparkling clean establishment with good home-cooked meals. I don't envy the clean up and repair that must lie ahead of her. If I felt better, I would go over and offer to wash curtains and clean windows for her. We have lost a part of the morning ritual of our community, as many local folks start their day at Karen's. I hope that Karen's re-opens soon as locals depend on it for camaraderie and the latest town news.

April 19, 1999: My new drug finally arrived today. At dinnertime, I take my first pill and hope it works with no side effects. Femara is very similar in composition to Arimidex, the drug which made me very ill last October.

Tonight, Ben and I are attending the cancer support group meeting in Bath. We have two new faces at the table, two young sisters whose mother is dealing with ovarian cancer. We all do our best to reassure them. Cancer is frequently much harder on family members than the patient. Family members feel helpless and often don't know what to do or say. Yet, a family can be very supportive by just listening and lending a hand where needed. I know that a few kind words and small gestures work wonders for me.

About six hours after taking my pill, I awake around midnight with a vicious headache, similar to a migraine. This is not good news as this is how my reaction to Arimidex started back in October. I take a pain pill and try to go back to sleep.

April 20, 1999: I awake this morning after a night of little sleep, with a nagging headache, nausea, and feeling like I can't focus my eyes. By mid-day the nausea improves, but I am weak from pain and lack of sleep. I debate whether to take pill #2 or call Dr. Bunnell. Do I want to risk getting sicker by taking another pill or do I wimp out now? I decide that wimping out sounds better, so I leave a phone message for Dr. Bunnell.

Dr. Bunnell calls me around 7 pm. I explain the side effects and he seems disappointed that the drug will not be usable. He reluctantly agrees that it is obvious that I can't tolerate this type of drug. We discuss Plan B, the Cancer Vaccine Trial, which we had decided would be the second option if this drug failed. He says that Chris from the Vaccine Trial Department will call me tomorrow.

April 21, 1999: Chris from the Cancer Vaccine Trial calls to give me instructions on the Trial. They are enrolling for slot #6, the last person needed to start the Trial. This will be the first group to receive the vaccine. Eventually, three more groups of six people will be chosen. The Trial will probably start in late May. Several patients have already failed to meet the qualifications. First, I will have 3-4 blood tests to check liver and kidney function, as soon as possible. If I pass them, I will then have a skin test and a physical exam at Dana Farber, plus a round of allergy tests. If I pass all those tests, I should be accepted. If they fill slot #6 before I am qualified, I will be bumped to the next group of six which will start later.

I am afraid to call my insurance company to see if they'll pay for any of these upcoming tests. Aetna has already told me they do not cover clinical trials. I am hoping that some of these Dr. appointments and tests may be covered. If accepted in the Trial, I would have weekly Dr. visits and tests at Farber. The only thing free is the vaccine itself. I will have to get an estimate from Farber on the cost of these exams and tests, plus I have to figure in my weekly travel to Boston. I am sure the tests and exams could easily run into many thousands of dollars over the nine months I would be enrolled in the Trial. I plan to call the Research Department and inquire about financial assistance. I would hate to be disqualified from the Trial for failure to meet the medical costs.

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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