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Lincoln County News
February 11, 1999

"LifeLines" My journal about living with cancer

by Sandy Labaree

This journal submission describes the results of my tumor marker tests, and the ups and downs of fellow cancer patients. The restaurant review is back on the road after a month's break.

January 29, 1999: What a surprise! Dr. Tom called me today to say that he just received the results of my tumor marker tests. Last Fall, it took three weeks to get the results. This time, the test results came back in four days! My tumor level is about the same as my test in November, 157 compared to 150. Tom says that the slight elevation is probably just a variation in the testing. I suspect that the elevation may be because my treatment was a few days late this month, and I was extremely tired out from our trip. In any case, Tom was pleased and said we will continue on the current treatment plan.

I probably have placed unrealistic expectations on my current treatment regimen. I had hoped that the drop in my tumor level from 185 to 150, might mean that the level would continue to go down. Now, I am beginning to realize that it may never go lower. To complicate matters, I never had a test reading done in 1997 when my cancer first spread. Many of these tumor marker tests are brand new and were not available to me at that time. Since I do not have a "reading" from 1997, my first test in November 1998 has to serve as the baseline for comparison.

So, after mulling over the news today, I guess I should be happy that the level is not up by some scary amount. Tom is doing his best to coordinate a treatment plan that is effective. I am being faithful about taking my medications, keeping my IV infusions on schedule, getting plenty of rest, taking my flax seed, and trying to limit my activities. I am also pleased with the progress I have made on limiting my schedule. Winter has made it easier for me to cut back and say "no", especially when there is snow and ice and it's below zero. I have gone into a hibernation mode, partly due to winter, and partly due to making a serious effort to say "no" to meetings, projects, committee assignments, and the like. Ben will tell you that I really haven't reformed from my Type A affliction and that I still do entirely too much. However, to prove that I really am on the road to reform, I have left Ben's message on the answering machine. For a good part of every morning the machine is on, and Ben, in an ominous voice, reminds callers that I am in treatment and not feeling well. This message has alarmed many callers, but I don't fret because most of my friends know the message is only a screening device. It works. I never get call-backs from telemarketers.

Tonight, was our first restaurant review with Sue and Paul since early January. Our destination was Richard's in Brunswick. We had an excellent dinner, though service was a little slow tonight. About 20 people were just finishing a huge birthday dinner celebration when we arrived, so it probably affected the service. Our dinners made up for it, though, and we used the time to catch up on all the news we missed over the past three weeks. For entrees, Sue had the combination bratwurst plate, Ben chose a German Hunter style chicken breast, I had my usual wienerschnitzel, and Paul selected the Holstein schnitzel which sounds like a cow, but is really wienerschnitzel topped with fried eggs, capers, and little salmon appetizers. Ben and I also ordered the Farmer's soup, a delicious thick lentil and bean mixture, perfect for a cold winter's evening. The restaurant review team's favorite was the warm pretzels that come out with the rolls. Actually, it's Richard's hot spicy mustard that makes the pretzels so good. Paul was lamenting that Richard's does not sell bottles of their mustard. He would love to add that to his collection of hot sauces. I think Paul rides around with bottles of hot sauce in his car, for emergency use.

February 1, 1999: Tonight is my cancer support group meeting. Unfortunately, I have to attend another meeting in Wiscasset, so Ben goes alone to the support group in Brunswick. He fills everyone in on how I'm doing and the results of my tumor marker tests. Another member announced to the group that I had been chosen as keynote speaker at the Living With Cancer Conference. Ben said the member went through a long mysterious description of me without naming names so everyone could guess who the speaker was going to be. Most of our support group members have attended at least one conference, some have attended five or more. I can count on having a large cheering section of my fellow support group members.

Tonight, the group heard the latest news about one of our fellow members who has a rare form of cancer known as carcenoid cancer. It is slow growing and the disease is generally managed through surgery and drug treatment. She has had a couple of surgeries to remove parts of her duodenum, pancreas, gall bladder, liver and spleen. Over the past few years, she has had problems off and on that have been managed to some degree with medication. During the past several months, she has been experiencing more symptoms, and a biopsy last week confirmed that the carcenoid had spread to her liver. She may be starting chemotherapy in the near future. My friend has had a frustrating history dealing with this disease. First, it took over two years for doctors to diagnose this rare form of cancer. Secondly, not much is known about carcenoid. And lastly, the recurrence of her disease into her liver went largely undetected by her doctors until the recent biopsy. She had suspected for quite some time that things weren't right. She saw all of her doctors regularly. This is a very frustrating scenario that happens all too often. Savvy folks who are in tune with their own bodies, and especially long-term cancer patients, are keenly aware of a new symptom or problem, long before the doctor or a test confirms their suspicions. Nevertheless, we must remain alert and in tune with our bodies. It is still our best defense against cancer or any disease.

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