Lincoln County News
November 19, 1998

"LifeLines" My journal about living with cancer

by Sandy Labaree

In this journal submission, the mystery of the disappearing Tour photos is solved. I put my cancer patient expertise to use in helping the American Cancer Society draft guidelines for quality of life for patients. I anxiously await the results of my tumor marker blood tests, to see if my cancer is responding to treatment.

November 4, 1998: Today, a real treat arrived in the mail. My sister, Peg, sent me some long-lost photos of our August southwest adventure. We had noticed upon our return that at least several days worth of photos were missing. It was odd and Peg thought that perhaps her camera had malfunctioned. We had also briefly considered that all of the photos we had taken of the two Ricardos and Rosemary in Gallup, New Mexico had not come out on film because they were aliens. New Mexico is well-known for its UFO's and alien sightings.

Recorded in full living color were some great photos of Peg and me on a buckboard in Ricardo's backyard, sitting in his T Bucket roadster, and riding horses in Williams, AZ. There was an excellent photo of a slightly nervous looking me on Custer, alias Fatboy, the one-eyed retired show horse that used to rob the train in Williams. Peg also got snapshots of me at the Continental Divide Indian Trading Post. I am standing alongside a covered wagon and also next to a replica Navajo hogan, the obligatory tacky tourist shots. I laughed so hard when I looked through these photos. It brought back such fond memories of our trip.

The mystery of Peg's missing photos was solved when she used her camera to photograph, Spanky, Count Dogula, on Halloween. Peg went to photograph Spanky and her camera started to rewind. Inside, was the roll of missing film from our trip! Peg ended up having to use her Polaroid to photograph Spanky in his vampire costume. The pictures came out quite well considering that Spanky would not look directly at the camera. He deliberately looked slightly off to the side. Apparently, he will only submit to a certain level of humiliation when it comes to dressing up for Halloween.

November 5, 1998: This week, I have had two conference calls regarding American Cancer Society business. Thank goodness for the telephone technology that allows 10 or 15 of us to be "in the same room" though we are many miles and states apart. My first conference call was with fellow Board members of the New England Division to discuss issues related to our representation on the National Board. Our Division is made up of the states of Maine, New Hampshire, Vermont, Rhode Island, Massachusetts and Connecticut. Despite my illness or actually because of my illness, I have elected to remain on the Board of Directors. I initially considered resigning because of physically missing meetings, though through conference calls, I have been able to attend and participate. Furthermore, I determined that my presence on the Board was even more valuable now as a patient and cancer survivor. I believe that I am bringing a certain perspective and awareness to the Board as a patient undergoing treatment.

Perhaps, because the Board recognizes my circumstances, I was assigned to the Quality of Life Committee. This group is studying vital issues that concern cancer patients and family members. Some of these issues are adequate pain control, management of side effects of treatment, emotional and psychological well-being of patients, protection against discrimination in the workplace, unbiased access to health insurance, plus a host of other concerns that affect patients, their families and their professional care providers. Our charge during the past two conference call meetings was to design a list of standards that will guide our New England Division in addressing the needs of cancer patients. I was very pleased with the outcome of our two calls. Our recommendations will now be passed on to the entire Board for review.

November 6, 1998: Tonight, Ben and I are driving up to Bar Harbor for the weekend. It is closing weekend at our friend Marian's Victorian B & B. Marian always invites her friends up for an opening party in the Spring and a closing party in the Fall. Part of the weekend is work, but the rest of the time is spent having fun and relaxing. Ben will do the work this weekend, and I will do the relaxing. The work crew brings in all the patio furniture and plants, touches up paint and wallpaper and makes minor repairs. On Saturday night, we have a huge lobsterbake and party.

We get a late start and finally pull into Bar Harbor around 8:45 pm. As we round the corner to Marian's, we notice red lights and a lot of commotion in the street. There are two fire trucks at Marian's and lots of people standing outside. We drive around the block and park in back. The fireman have an aerial ladder going up to Marian's living room chimney. We soon find out that a chimney fire is the cause of all the commotion. Apparently, we arrived about five minutes after the call went in to the Fire Department. Marian and her friends were relaxing and enjoying a late dinner when a knock came at the door around 8:30 pm. Marian thought it was us arriving. Instead, it was a passerby who reported flames coming from the chimney. This, of course, led to a call to the Fire Department, the end of the party and a mass evacuation. It seems that one of Marian's guests, who was slightly inebriated, had thrown a Duralog and extra kindling on top of an already roaring fire in her fireplace.

Ben videotaped the entire proceedings as we stood outside in a freezing rain. In the first hint of snow for the season, ice pellets were mixed in with the rain. I told Marian that we could use Ben's videotape as a promotional video of the inn. Marian wasn't too amused by the publicity and seemed chagrined when I told her she would probably make the cover of the Bar Harbor Times next week. Fortunately, Marian's chimney was lined and the blaze was quickly extinguished with no damage, smoke or otherwise. Of all of her closing parties, this will certainly be one of the most memorable.

November 10, 1998: Just like last week, I can barely get out of bed and function on Monday and Tuesday morning. Yesterday, Monday, was the worst. Today, I am still tired, but determined to drive myself to Brunswick for my blood tests. I think I am beginning to see a correlation here: I am doing too much on weekends.

I drive down to MidCoast Hospital in Brunswick. The lab is not busy at all, and there is no wait to process the requisition forms because the computers are down. Claudia, one of the regular technicians, is on duty. She asks how I am doing and is sorry to hear that I am back in treatment. I don't really need to explain because she can tell from the tests that have been ordered that things must not be going too well. I am having a CBC and the CA 27 and 29 tumor marker tests. Claudia is not familiar with the 27 and 29 tests. These are relatively new and she looks them up on her master test sheet. She finds them listed and comments that this is the first time she has done these on a patient. The old CEA tumor marker test is the one that is usually used. Down in New Jersey and elsewhere, the 27 and 29 tests have replaced the old CEA. In any case, the blood samples will probably be sent to a diagnostic lab out of state. I would not be surprised if it takes a week or two for Dr. Tom to get the results.

I will be anxiously awaiting the news. A noticeable drop in the tumor marker levels will mean that my tumors are responding to my drug treatments. I am hoping to see a significant change. Aside from being tired and not having my former energy levels, I do think that the pain situation is markedly improved. I am trying to stay very focused on healing. I am sleeping quite well, occasionally resting during the day, reading books and taking my medication religiously. I also have my other forms of therapy which include 25 grams of flax seed daily and lots of tea. To provide balance to this health regimen, I continue to conduct weekly restaurant reviews, never skip dessert and have a good daily dose of chocolate or sugar in the form of left-over Halloween candy and pumpkin peeps. If my tumor levels have come down, it may very well be due to the peeps.

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