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Lincoln County News
April 15, 1999

"LifeLines" My journal about living with cancer

by Sandy Labaree

This journal submission describes a surprise Easter visitor and plans for the upcoming Living With Cancer Conference. Snippets of restaurant reviews this week as I battle fatigue, pain and the insurance industry.

April 1, 1999: Today, I am meeting with Pam, our new Communications Director at the American Cancer Society. One of Pam's first assignments will be the Living With Cancer Conference. It is a beautiful Spring day so Pam, Donna from Patient Services (who is in charge of the Conference) and I walk to Wild Oats Bakery in Brunswick to meet over lunch. Wild Oats has great baked goods, wonderful sandwiches and daily specials. I chose smoked turkey with lettuce, tomato and bacon on a tortilla. It was delicious, and so huge that I wrapped up half to take home.

During lunch, we discussed publicity for the upcoming Living With Cancer Conference at the Augusta Civic Center on May 6th. One of our prime goals is to reach newly diagnosed cancer patients and their family members. In the past, we have had excellent TV coverage on the Conference day itself which unfortunately does not give viewers advance notice in order to attend. We hope to convince TV stations and newspapers to announce and promote the Conference a few weeks before it occurs.

I hope that the media will be interested in interviewing cancer patients/survivors who have attended the Conference. Those who have attended can best describe how it helped them. It is important to reach newly diagnosed patients who are often starved for cancer information. Cancer patients are frequently overwhelmed by everything that is happening to them and don't know where to turn for help. Though most folks recognize that a Conference can be helpful, some are reluctant to walk into a room filled with 350 strangers. We need to reassure them that these people aren't really "strangers". Most of the people who attend the conference have cancer or a family member or friend coping with the disease.

Some people have told me that they are afraid to come to the conference because they'll cry. I haven't been to a Conference yet, where tears weren't shed in buckets! I have even seen keynote speakers in tears. I am sure I will have my moments this year as speaker and attendee. It is nothing to be ashamed of and many patients experience a tremendous sense of relief to cry and laugh with their fellow patients. The cancer experience evokes many feelings that are best shared with those who have walked the journey.

Long time cancer survivors can also gain a lot from the Conference. This year's workshops offer the latest information on cancer research and treatment, nutrition, spiritual and emotional well-being, and a variety of other topics including how to cope with cancer after treatment has ended. Long term survivors also serve an important role in inspiring newly diagnosed patients. I can remember attending the conference years ago, seeing folks who were five and ten years past their diagnosis and thinking, my God, I can survive this disease, too. Often, just seeing and meeting one person who has successfully battled the disease gives you courage to go on.

April 4, 1999: Today is Easter. We are meeting my daughter, Christy and her husband, Nils for dinner, halfway between Wiscasset and Bedford, MA, at the Stage Neck Inn in York. We arrive early to find my sister, Mary Ann, walking through the lobby of the Inn. What a complete surprise! On a whim, she decided to fly from NJ to Boston, to visit with Christy overnight and join us for Easter Dinner.

While waiting to be called to our table, we open our Easter gifts. Christy has given Ben a T-shirt and me a basket from her Jamaica trip. She has filled the basket with scented hand lotion and skin care products. I give Christy an Easter basket filled with an assortment of candies form Tontine Candies including buttercream eggs, chocolate bunnies and jelly beans. Mary Ann has brought me a box of buttercreams from my parents. I will add this to my mounting buttercream collection as Ben gave me a box this morning. Mary Ann has brought me a special gift of handmade peeps, made by Robinson's Candies in NJ. The slightly deformed looking rabbits and chicks are yellow, pink and white with hand-painted chocolate eyes. I hate to admit it, but they taste better than the Just Born peeps. I had a peep craving last night and of course I had given away my 85 peeps a week ago. So, this should solve my need for peeps.

The Easter Buffet at Stage Neck is marvelous with roast beef, baked ham, fish, stuffed chicken breast, and roast lamb with a delicious minted gravy. Fresh asparagus, roasted potatoes, rice pilaf and nice salad greens, plus a yummy selection of apple crisp, blueberry pie and ice cream sundaes for dessert round out the perfect Easter dinner. It is a beautiful Spring day and we have a great 180 degree view seated in the oceanfront dining room.

Dinner ended on an unpleasant note as I developed a bad headache and gradually deteriorated from there. I barely finished half of my meal. I was discouraged that I couldn't fully appreciate the holiday celebration. When we returned home, I was so washed out that I went right to bed. Depressing thoughts crept in. I thought back to April 1985 when my dear grandmother passed away on Easter morning. She had suffered from cancer for only three months, choosing not to undergo treatment at an advanced age. I wonder if this will be my last Easter with my family. I hope not, but I can take solace in knowing I collected and distributed 85 peeps, and now have 2 lbs. of buttercreams waiting to coax me out of my temporary depression.

April 7, 1999: The last few days have been rough ones for me. I attribute some of it to the time change which seems to affect me more in Spring than Fall. The past three days, I have dragged myself out of bed at a shamefully late hour. My bones have been hurting and I have had some dizziness. Today, I am feeling better, despite a very slow start. Poor Lurk doesn't help as he curls up next to me in bed and is content to stay there all day. That's the normal feline routine of sleeping 20 hours a day. I hope it's not contagious.

My on-going insurance woes further add to my misery. We are now on an Aetna NYLCare PPO Plan as of April 1st. We have not received an insurance ID card or any certificate of coverage. I will need this for my Dr. appointments next week, first with Dr. Tom on Monday and Dr. Bunnell at Dana Farber on Tuesday. Ben and I have made repeated phone calls to Aetna and the Portland agency handling the policy. Aetna tells us they have no record of our policy in the system. I wonder what would happen if any of us had an emergency and had to be admitted to the hospital, with no proof of insurance? I was also supposed to be assigned to a case manager. Aetna assigned me to the wrong person and has yet to rectify this.

Ben and I plan to hound the representative at the Portland agency until we get the certification and information we need. On a more discouraging note, one of my support group friends handed me a story from the March 1, 1999 issue of the Wall Street Journal. Carolyn Boyer, a 50 year old lawyer and breast cancer patient with advanced disease describes her endless paper chase of insurance billing errors and denials of coverage with none other than Aetna NYLCare! I was dismayed, but not surprised to read about her constant battle over insurance payment foul-ups and medical billing mistakes, all of this while trying to cope with her very serious illness. It scares me to read that her treatments and advanced stage of disease are almost identical to mine. And so is her insurance policy. God help me!

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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