Lincoln County News
December 3, 1998

"LifeLines" My journal about living with cancer

by Sandy Labaree

This journal submission describes my third IV infusion of Aredia and visit to Dr. Tom. Good news! Restaurant reviews rising and tumor marker levels dropping! I struggle with continuing lymphedema in my arm, and the frustration of constant fatigue and lack of energy.

November 20, 1998: The rolling restaurant review is headed up to Rockland tonight to Grapes Restaurant, an Italian eatery that has been recommended by friends of ours from Warren. Sue and Paul are joining us. The past few weeks, we have been discussing Italian food. Actually, we have been longing for a meal at Graziano's, but they do not take reservations, and there are long waits on Friday and Saturday nights. We have decided that a Sunday trip to Lisbon will be required at some point to satisfy our Graziano craving.

Grapes proves to be quite satisfactory. The menu is not strictly Italian and includes seafood and other choices. We all ordered the Italian dishes. Paul had a sausage special and the rest of us ordered a Mediterranean fusilli pasta dish with anchovies, olives, and artichokes. It was an unusual combination, but very tasty. We did not give Grapes a rating because there were no packets of raw sugar on the table. So much for our restaurant reviews.

Some folks must think that we are conducting official restaurant reviews. I have already received letters and e mails in my weekly fan mail that allude to the restaurant reviews. One person took issue with our rating of King Eider's Pub, saying that they felt Moody's and Reunion Station were 5 star restaurants. I would not disagree. Food is all in the eye of the beholder, or should I say mouth or stomach of the beholder. I am not much of a restaurant critic because I love simple, home-style cooking. I also like Chinese, Italian, German, French and fancier cuisine. I can be perfectly happy with a trip to Moody's and Canfield's, and an occasional jaunt to Robinhood Free Meetinghouse. It all depends on the mood I'm in, what I feel like eating, and what we plan on spending. You will notice that our reviews never discuss the merits of how a dish is prepared or whether the sauce is missing a seasoning or two. First of all, I probably wouldn't notice. Secondly, I am grateful that I am not the chef in the kitchen doing the cooking.

Sue asks me tonight if I caught anything in my meteor trap. I carefully examined the trap the other evening and could find no sign of meteorites or tracks from an alien creature. I am rather disappointed and will have to wait for at least next summer when the next significant meteor shower will occur.

November 22, 1998: We have spent the weekend getting ready for Thanksgiving. We did our food shopping, and then Ben did all my housecleaning while I watched and supervised. He is getting good at this, and I am getting proficient at watching!

We had planned to drive to our daughter's in Bedford, MA on Thanksgiving, and then go from there to her in-laws in New Hampshire for dinner. We have done this for three years in a row. As the time has gotten closer, I have been dreading the long day and four hour drive. I just do not feel physically able to do this trip. Finally, last week, I got the nerve to e mail Christy and tell her we were staying home on Thanksgiving. I suggested she go to her in-laws, and we could get together on another day over the weekend.

Christy e mailed back to say that she and Nils would come up here for Thanksgiving. She didn't realize that I wasn't feeling that well. She says she can't sense that long-distance. I guess unless you are here to see me dragging around in the morning and not functioning well, you would have no clue. Also, appearances are very deceiving. I would like to have a nickel for every person who has told me how wonderful I look, including some of my doctors and care providers! It has always amazed me how many people think, though they will rarely say this, that I do not look like a cancer patient. Well, I am not exactly sure what a cancer patient is supposed to look like, but I would hazard a guess that pale, thin, peaked, possibly no hair might be a description that comes to mind.

Well, now my hair has started to grow back, and I have rarely looked pale or peaked except for a brief time when I was anemic last winter. Even then, when I felt miserable and half-dead, people still commented on how good I looked. I will certainly never be thin, so I am automatically disqualified from that criteria. So, even though I can barely drag myself out of bed in the morning, easily tire from doing the slightest tasks around the house, and wonder if I can muster the energy to drive to Bath, Brunswick or Damariscotta, I am still looking good. Fatigue, lack of energy and stamina are insidious killers. They eat away at you from the inside, rarely showing tell-tale signs on the outside. It is very frustrating to me. Over the past two months, I have learned to schedule my day around one or two events such as a meeting, a trip to the Dr., an errand, or some other mundane activity. I try to limit myself to one driving trip per day. Before he leaves for work, Ben gets the car out for me, as I don't have the strength to open the garage doors now. Lifting and exertion make me feel weak and out of breath.

Thankfully, I can accomplish much from home by using my fax, phone and e mail. My answering machine is on most of the time and I limit my calls. Ben has left an intimidating message on my machine, so folks will not bother me. I am learning to protect my privacy and give myself some time to rest and heal.

November 23, 1998: Today, is my third IV infusion of Aredia. I will also be meeting with Dr. Tom to discuss the results of my tumor marker tests. I am anguishing how I will get to Brunswick today by myself. It will be one very long day and I have not lined up a driver. I leave the house around 10:15 am. and cross my fingers that I can make it through the day. I have a couple of errands to run on my way. By the time I see Tom, it is nearly 1:30 pm.

I tell Tom about how tired I have been. He doesn't think it is from the medication I am taking. Fortunately, I am no longer having pain though, perhaps, the level of the disease may be draining my energy and stamina. Tom specifically questions me as to how much I am doing work-wise. I suspect that he thinks I am overdoing it. I really don't think I am exceeding my boundaries, but maybe these parameters are getting smaller every day.

Tom reports that my tumor marker levels have dropped from 190 to 150. He seems cautiously optimistic and says that Megace is responsible for this drop. The figures show about a 25% drop in 31-32 days. Tom could not predict whether the level will continue to drop, or at what pace. As usual, I try to pin Tom down to some specific answers like was this a good drop, an average drop, or what? I didn't get specifics, so I guess I will just have to be comfortable that the level has dropped. Tom says he will not test the levels again until the end of January. I am disappointed as I want to know what is happening. I guess I will have to monitor my energy and pain levels. They may be my only clues as to what the tumor levels are doing.

I don't think my diet had anything to do with the drop in the tumor level, but you never know. I have consumed a few boxes of peeps during the past month. The Megace is well on its way to helping me achieve blimp status, as I have gained four pounds since my last visit. Tom blamed it on the Megace.

Tom seemed more concerned about the lymphedema in my arm which is gradually getting worse. My right hand is more swelled and there are times when it is numb and weak. It is often sore to touch between the thumb and index finger. Frequently, it effects my handwriting and gripping utensils. Tom suggests that it may be worth my while to visit the Lymphedema Clinic at one of the Portland Hospitals. I really do not feel up to traveling to Portland daily for what is a regimen of massage, ace bandages, and exercises. I may make one trip or call them. I would much prefer receiving therapy up here in my neighborhood. Better yet, if I found out exactly what needs to be done, I could try doing it myself.

Cindy is off today so Doris from the hospital IV team is filling in. She is as expert as Cindy with the needles, but slower on running the IV. By the time I am finished, it is nearly 4:30 pm. It is 5 pm. by the time I arrive home totally exhausted. I have been out since 10:15 am. This far exceeds my daily boundaries and I know I will pay for this tomorrow.

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