Lincoln County News
June 10, 1999

"LifeLines" My journal about living with cancer

by Sandy Labaree

This journal submission describes a whirlwind Memorial Day weekend with a Tour appearance in NH, and a painting party at Christy's. Relief is on the way for my arm lymphedema, while I face the prospect of more chemotherapy.

May 28, 1999: Today, is my treatment and appointment with Dr. Tom. Cindy takes my vital signs and starts my Aredia IV while we wait for Tom. When Tom arrives, I trudge off to the examining room with my IV pole in tow. I am dreading my blood test reports. Tom says my blood counts look great, but my tumor marker levels have gone up 50% to 368. I am not surprised because of the amount of back pain I've been experiencing. Pain in my bone tumor sites seems to be directly related to my tumor levels.

Tom is concerned that a different course of action is now required, and a chemo regimen of Taxol or Taxotere may be necessary. Because I have some neurological damage, we have avoided Taxol, so Taxotere may be the drug of choice. I also convey to Tom my conversation with Dr. Bunnell earlier this week.

Dr. Bunnell explained that the cancer vaccine trial is on hold for 6-10 weeks while Dana Farber seeks permission from the National Cancer Institute to proceed with the trial without an antidote. If and when the trial starts, I will have to wait an additional month to apply for acceptance as the first six slots are filled. Dr. Bunnell's 5-FU chemo trial received conditional approval and should be going by the end of June. He says I am eligible for this trial which is testing a stronger, longer lasting chemo drug in oral form. I asked about the Endostatin trial. Bunnell says that Farber's phones have been ringing off the hook and a hotline was set up to handle inquiries. The trial will probably start this Fall, but the criteria for acceptance will not be established for another month or two. Bunnell said a lottery system may have to be put in place, though he hoped it would be left to a review board. I told him I would love to get into this trial and he said he would put my name on the list. Bunnell said if I didn't make the cut, I would still be eligible for the vaccine or 5-FU trial.

I tell Tom that I don't want a new course of treatment to affect my acceptance into a clinical trial. Many clinical trials will not accept patients who have received more than two chemotherapy regimens. I have already had two. Tom said he will call Bunnell to review my latest tests and discuss treatment options. In the meantime, I will just have to wait and take my Megace and pain pills.

May 29, 1999: Ben and I drove to our daughter's house in Bedford, MA last night. Today, we are helping Christy and Nils paint their living room, after closing the grandcats, Oops and Spot, in an upstairs bedroom. Christy did not want paint-covered cats or furry walls. Both cats are enormous despite the fact that they eat only 2/3 of a cup of low fat dried cat food daily. Ben says they are metabolic mutants. Their uncle, Lurk, is puny compared to them.

After we put one coat of pink paint on one wall in the living room, Christy determines that Princess Pearl Pink is really not the peachy shade she imagined. It looks like a "pretty in pink" girl's bedroom. This slight painting fiasco takes me back to many years ago when Ben and I did home remodeling. Fortunately, we were young, energetic and ignorant to the trials and tribulations of do-it-yourself home projects. I am glad we have matured and farmed the projects out to the pros. Meanwhile, Christy and I paint trim while Ben and Nils return to Home Depot for a more neutral shade of peach-pink.

A few hours later, the second shade of pink is up and drying and looking much more like a living room color. After a quick Chinese buffet lunch with Christy and Nils, Ben and I leave for Merrimack, NH for the rest of the weekend. Our visit with Christy was brief, but she will meet us for breakfast tomorrow. She and Nils will apply the second coat of paint tonight, and prepare for house guests arriving on Sunday.

We are making a Corvettes Conquer Cancer Tour appearance at Gate City Corvette Club's Spring Fling Corvette Show at the Budweiser Brewery in Merrimack. We will meet and stay with Tom and Charlene at a hotel in Nashua, NH. Tonight, we are joining our Gate City friends for dinner at Ya Mamas restaurant in Merrimack. With a name like Ya Mamas, it has to be Italian!

We meet Tom and Charlene and five of our friends at Ya Mamas which reminds me of Graziano's in terms of menu entrees. Paul and Sue will be jealous, as they are missing this week's restaurant review! I am still full from lunch so I choose a bowl of angel hair pasta with meat sauce. The sauce is superb and the meal is accompanied by a salad of mixed greens and delicious Italian bread. Ben orders the Fruitta Di Mare Fra Diavolo which is a huge platter of pasta with shrimp and calamari in a Fra Diavolo sauce, surrounded by fresh Maine mussels in their shells. Charlene and I share a thin but very rich slice of black forest cheesecake for dessert.

May 30, 1999: What perfect summer weather this Memorial Day weekend has been for traveling and attending a Corvette Show! Christy joined us for a quick breakfast before heading out for a morning of sailing in Boston harbor. She and Nils belong to a sailing club and enjoy the privileges of sailing little 18 ft. sailboats around the harbor.

Ben and I drive to the show site at Budweiser Brewery. I would love to visit the Clydesdales in the stables, but I will be alone at my display booth most of the day. Ben, Tom and Charlene have offered to help judge cars in the show. Having judged in the past, I know they will be scrutinizing every detail inside and out on scores of cars, a job that takes several hours.

My display table is set up in the shade of a row of maple trees that line the sidewalk leading to the stables, brewery and gift shop. A perfect high traffic location. Many of my Corvette friends from clubs throughout New England, stop by to visit. All want an update on my health and tell me that they have been reading about my Tour in the car magazines. Last year at this show, I met a breast cancer survivor from MA who had a bone marrow transplant seven years ago at Dana Farber. She has done remarkably well. She and her husband own a Corvette and when they arrive today, Linda stops by my table to give me a hug and see how I'm doing. She says she has been following my column on the Internet. She looks great and continues to be quite the poster lady for bone marrow transplants. She is pleased to hear that I am seeing Dr. Bunnell as he is her Dr. at Dana Farber. I also have an interesting conversation with a couple we know from a MA Corvette Club. The husband was diagnosed with breast cancer last year. He went through the typical treatment regimen for breast cancer: surgery and chemotherapy. He is doing fine and looking very fit. Breast cancer in men is rare, but it happens. The wife says she is on a personal crusade to alert the media and the medical community to the incidence of breast cancer in men. We lament the fact that most cancer information pamphlets make no mention of breast cancer in men.

I have my memory book out on the table for folks to sign the names of cancer survivors or those lost to cancer. Some people look through the book and sign it, while others sneak a peek from a safe distance. The cancer survivors are jubilant to sign their names and anxious to tell me their stories. But more frequently, people approach my table very tentatively, before mustering the strength to sign names of loved ones lost to cancer. Many say nothing to me as I can see tears welling in their eyes as they struggle to control their emotions. Most slip folded bills into my donation can, whisper a thank you and walk away quickly. This has happened in every place I have set up a booth, but it still touches me deeply to witness this outpouring of grief.

June 3, 1999: I have had significant back pain from overdoing it this past weekend. I am taking more than one pain pill a day now and slowly mending. The weekend heat aggravated my lymphedema in my right arm. Ben wrapped my arm in an ace bandage which alleviated some of the swelling. Today, I am working on a more permanent solution. I am being fitted for a compression sleeve at Central Maine Medical Center.

Ben drives me to Lewiston early this morning. Jennifer, the person who does the custom fitting, explains how it's best to measure my arm in the early morning before it swells too much. I can't imagine taking my Tour trip to an Illinois Corvette Show this month without an elastic sleeve. Last year, it was 100 degrees the entire five days we were in Illinois. The sleeve will make summer heat much more bearable. I will return for a fitting check once the custom sleeve arrives late next week. When I met Jennifer this morning, she told me I looked awfully familiar. She quickly remembered that she had heard my speech at the Living With Cancer Conference. We chatted about lymphedema and all the latest treatments. Tremendous advances have been made in treating lymphedema, and we both agree that a lymphedema workshop should be part of next year's Cancer Conference.

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