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Lincoln County News
April 1, 1999

"LifeLines" My journal about living with cancer

by Sandy Labaree

This journal submission describes a week of bad news ranging from my tumor marker tests, to unexpected changes in my insurance policy. The restaurant review team returns to Maxwell's with a different group of reviewers.

March 21, 1999: This past Friday evening, the restaurant review team headed back to Maxwell's in Bath with a fresh team of reviewers. Tom and Charlene joined us for fun, companionship and prime rib. We spent little time in deciding that we would all order the prime rib. Like Ben, I ordered an end cut this evening. Though I ordered the smaller portion, my end cut chunk was gigantic. After eating my popover and salad, I had a few bites of the prime rib. It was just too much to tackle, so I had it wrapped up to go. It was so huge that Ben, Lurk and I shared it for breakfast yesterday and today. Anyway, we had a fun time with Tom and Charlene. Charlene said they were sorry they didn't order two desserts. We had the Fra Angelico chocolate mousse which was wonderful. I knew enough to order my own while Tom and Charlene shared one.

Tom said that he has been perusing Ebay, the on-line auction site that I told him about. He has already bought several model car collectibles. Ben has been using Ebay to sell his enormous collection of car magazines which have been stored in our attic for years. I have been bugging Ben to clean up the attic and get rid of all the "stuff" that he accumulates. Ben never throws anything out as he says it may be useful sometime down the road. Any car magazine gets saved, plus used car parts, broken tools, you name it, we probably have it.

Ebay has been successful in selling Ben's magazines. Folks who obviously hoard car magazines are buying ours, probably much to the chagrin of their spouses. Other attics and storage areas must be filling up rapidly. The one disturbing aspect to all the boxes disappearing from our attic, is that somehow the boxes seem to be replaced by more boxes. Just like in a cartoon, boxes of magazines magically re-appear to fill the space. Obviously, Ben has more boxes of magazines than I realized. I also had avoided going up to the attic to look at what was up there. I knew it would only upset me to see the entire collection of stuff. Ben spent the better part of this weekend, going through more boxes and cataloguing the magazines so he could list them for sale. I am hoping that the end is in sight.

March 22, 1999: Dr. Tom calls me today with the results of my tumor marker tests. Unfortunately, the tumor levels have gone from 157 to 220. This is not good news. My first test in Oct. was 190, followed by a drop to 150 after I started my Megace and Aredia treatment. The next test showed a level of 157, which was acceptable and only a minor change. I was not terribly surprised by the 220 reading because of the pain I am having. In September, I was having serious pain and this was reflected in the tumor level. However, the 220 is certainly well above the 190, and there is no question that my Megace treatment is no longer working and will have to be terminated. Tom has calls in to doctors at Dana Farber to discuss other drugs and treatment options. Most likely, I will have to travel to Boston to meet with these doctors.

Though I was prepared for an elevated level, I guess I didn't expect that much of a change. I feel like I am back to square one in my treatment plan. In reality, my treatment options are becoming increasingly limited. I can only hope that something new is hot off the press at Dana Farber or one of the other cancer research centers. Last week, I spent considerable time surfing the Internet for the latest clinical trials, many of which I am not eligible for. It is very frustrating and I will be putting much of my faith and hope in what Tom can find at Dana Farber.

March 23, 1999: This is one long day and one I probably should not be doing. I am traveling to Framingham, MA for an all-day American Cancer Society Board Meeting. I had missed the last meeting as we were in Florida on a Tour appearance. I feel very obligated to attend these meetings in person as it is an important job and commitment for me. I could not stand the thought of participating by conference call.

I have hitched a ride with Alan, my fellow Board member who lives in Kennebunkport. After getting up at an ungodly hour, Ben drives me to the Kennebunk entrance of the turnpike where I meet Alan. Alan is a fast driver and with his radar detector engaged, we maneuver through MA rush hour traffic. We arrive only a few minutes late while the meeting is just getting underway. I am glad that I have decided to do this as my presence is important to issues requiring a vote today. I am also happy to see and visit with all my fellow Board members. As a plus, staying focused on the business at hand, I can ignore my back pain. It was a productive meeting that actually ended early. Alan and I were out on the road again by 4:15 pm., just in time to join the Rt. 128 rush hour traffic. We drive back to Alan's office in Saco where Ben will pick me up.

Ben is just coming from a meeting at his office in South Portland. The meeting was called to inform the employees about a change in insurance plans and benefits effective April 1. This was extremely short notice, only nine days, for those of us who are regular users of the insurance system. For those of us with a life-threatening illness, any change in policy spells big problems and worries. I have reason to be concerned about the new policy as it is going from a Blue Cross comprehensive plan to a PPO through another firm. Though I can still choose my doctors, it will come at a cost. For those doctors or hospitals not participating, coverage is much less than participating providers. Also at risk is coverage for special care or treatment outside of Maine. Further complicating my situation is that because of my disability status, I will become eligible for Medicare in December 1999. Changing insurance providers and having 3 different insurance companies in one year will result in the loss of accrued expenses, create paperwork nightmares and almost guarantee billing errors. It may be worth my while to continue with Blue Cross on a private policy until December.

Last year at this time, I had an insurance policy change which was less major, going from one similar Blue Cross plan to another. However, in the switch-over, I lost $1500 of accumulated deductible and out of pocket expenses. Add to this, another $1500 that I had to pay for the new policy's deductible and out of pocket expenses. All this on top of my medical expenses that weren't covered. I expect this change-over will be just as costly, if not more so. I have requested a meeting with the benefits coordinator from Ben's office tomorrow. I have very little time to explore options and make arrangements. In the meantime, I have had to place my Dr. appointments on hold until I know what my insurance coverage will be.

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