Lincoln County News
March 12, 1998
"LifeLines" My journal about living with cancer
by Sandy Labaree
This journal submission is about friends, fan mail and support as I continue to recover from chemotherapy. My entries also describe the series of tests I am undergoing to determine if my cancer is in remission.
Feb. 18th: Another stormy winter day with snow, sleet and rain! Today, is my blood test and Dr's appointment. Jean, a wonderful lady I know through business connections, e mailed me offering her help. She also sent me two fancy animated greeting cards on the computer. So, Jean is my driver today and she is not intimidated by the horrible weather. She even takes me around town for a few errands.
After my blood test, Jean and I wait in the hospital coffee shop until my appointment time with Dr. Tom. Tom's office is quiet, probably due to the storm. Cindy checks my vital signs and reports that my lab numbers are looking better. My white cell count is 9900, which is spiked due to the Neupagen. The better news is that the red cells are up to 28.9, from 27.3. My bone marrow must be waking up again and producing red blood cells. I'm still anemic and Tom is concerned about the continued shortness of breath. He wants to be sure that these symptoms are not being caused by other possible conditions. I will have an RVG tomorrow, which tests heart function. The results will be compared to the RVG I had before starting chemo. Tom and I are not expecting any surprises. Dr. Richardson, my Dr. in Boston, has ordered the RVG, a bone scan and CAT scans to thoroughly assess my status.
Tom and I discuss my fatigue and weakness caused by the chemo. We also review my sleeping pills. They are losing their effect and rather than increase the dosage or switch medications, Tom says I can take Benadryl with them.
Tom also examines my lymph nodes. I can still feel one in the base of my neck. It is hard and small like a lead shot pellet. Tom is still amazed that I found this one tiny node back in early October. I know that the upcoming CAT scans will only show whether the suspicious nodes have changed in size. Hopefully, they have shrunk, that's the purpose of the chemo! The scans cannot detect cancer cells inside the nodes. Only surgical removal or a biopsy can reveal the presence of cancer in the nodes. Tom and I then discuss surgical removal of my affected nodes. Tom reassures me that surgery will not spread the cancer, if any cancerous cells are still inside the nodes. I am definitely in favor of surgery. I need to know the status of my cancer, and I will have more peace of mind having the nodes removed and biopsied.
I also ask Tom about radiation treatment. He says if the nodes have shrunk, we can assume that the chemo has done it's job and there would be no need to radiate the nodes. Tom explains that the nodes sometimes take a while to shrink or return to normal, because they have been inflamed by the presence of cancer cells. Tom emphasizes that Dr. Richardson at Dana-Farber in Boston has the final opinion. He suggests that I make an appointment with Dr. Richardson for the first week in March. By then, all my tests will be completed and Richardson can review the results. I tell Tom that I am almost 99% sure that I don't want to do the bone marrow transplant, even if the tests determine that I am eligible. Tom has no comment when I mention this, but I sense he fully respects my judgment. Ultimately, I am in control of what happens to my body and I want to make my own decisions.
Feb. 19th: Today, Lurk has his 15 minutes of fame! He is featured in the pet column of the Feb. 19th issue of The Lincoln County News. I provided the newspaper with background information on my friendly feline companion, and a flattering photo of a much younger and thinner Lurk. Like most of us, he has added a few pounds over the years. Lurk asks that members of his fan club should send catnip or mice, instead of mail. He is "retired", and in his relaxed winter mode, response to e mail and notes could be quite slow.
This morning, new drivers and new friends (June and Frank from Damariscotta) take me to my RVG heart test at Bath Hospital. June called me last week to ask if I was Dr. Alfred Cook's daughter from Princeton, New Jersey. She has been reading my column every week and said she put two and two together, with my references to Princeton and a father who is a recently retired doctor. June and Frank moved to Maine last year from Princeton. She said my Dad was a wonderful doctor and she missed having him as her physician.
My Dad was a very caring doctor and personally interested in each of his patients. He made house calls long after they were no longer in fashion and he answered his own telephone after hours. Medicine has changed, but hopefully the bedside manner and personal touch will be carried on by our new generation of doctors. I have chosen my physicians based on not only their expertise, but how they personally relate and are willing to answer my questions. If a doctor can't or won't communicate with me, I find a new one. I am a demanding patient because of the standard of care that my father set, and the good doctors I have known over the years.
My RVG test went well and was over in an hour. I was dreading the two injections, one in each elbow vein, because my veins are so tender. The technician was very good and the needles were not painful. The actual test is easy and painless. You lie on a narrow comfortable table, electrodes are attached to your chest area and a special machine takes x-ray pictures of your heart function.
After running an errand for me, June and Frank drive me home and ask to see Lurk. Usually, he comes out to greet anyone who comes to the door. Instead, His Laziness is sound asleep on my bed. June and Frank make a big fuss over him, but Lurk is too lazy today for company. He lifts his head, purrs and rubs his face against his visitors, without disturbing his sleeping position. Lurk is obviously already bored with his new-found fame.
Sue stops over in the afternoon to drop off (more fan mail) several notes and cards. One in particular is unusual and amusing. A 93 year old gentleman and cancer patient from Nobleboro has sent me a photo of himself. He is smiling and happy, though his bald head has a bandage wrapped around it from recent surgery. I think I will get Ben to take a photo of me with a bandage on my head. I will send it to him with a note attached: Twins separated at birth? I am sure this man will appreciate a little cancer patient humor.
Feb. 20th: I am feeling peppier today and the shortness of breath is less noticeable. I spend the day answering my fan mail. I am considering hiring a secretary because Lurk, my office assistant, is only useful as a paper weight. My latest pile of mail has a note from Lyn, whose father died of cancer when she was only 10. She appreciates my open communication about this disease because her mother was not able to discuss cancer and how it affected her until quite recently. Many years ago, cancer was known as the "C" word. Even today, some folks find it difficult to say the word "cancer". It is a feared and dreaded disease, yet so many people are at risk or will develop cancer during their lifetime. That is why I must speak out freely.
I also received a lovely note from Debra, an artist who produces Christmas cards for the Jimmy Fund for Dana-Farber Cancer Institute, my alma mater in Boston. Her uncle overcame non-Hodgkins lymphoma and is living a very full, active life in Minnesota. She describes visiting him recently to watch him perform in a local talent show. Her family involvement with cancer led her to lending her artistic expertise to the fight against cancer. Though she has a two year old in tow, she kindly offers me assistance with rides.
Other kind gestures in the form of casseroles and other goodies have arrived on my doorstep this week. I haven't been able to do much cooking and chores the past two months. Occasionally, if I feel up to it, we go out to eat. Otherwise, Ben plays chef. He knows his way around the kitchen, but the results are pretty quick and not very imaginative, mostly because he arrives home late from work. Ben is at his culinary best doing breakfast on weekends.
This past Wednesday was stormy with ice and snow. After I came home from the blood test and Dr's visit I was so tired, I laid down to rest until Ben got home. It was blowing and miserable outside and I was thinking how nice it would be if my mother or sister was there fixing me a nice hot meal, something that would fill the whole house with the aroma of home cooking. I was worn out from the tests and the anemia, feeling wretchedly sorry for myself, to the point of tears. Ben walked in with a soggy cold pizza. Because of the storm, it had taken him a couple of hours to drive back from his last stop in Augusta. I guess my selfish prayers were answered when Carolyn, a long time friend of mine from Wiscasset, showed up the next morning with a hamburger casserole, a few brownies and pieces of banana cake! Thank God for my dear friends.
Speaking of food, Sue, Paul, Ben and I had to uphold our Friday night ritual of visiting a different restaurant. Tonight, we went to First Wok, a Chinese restaurant in Brunswick. Sue and I indulged in delicious vegetarian delights and the men predictably chose meat entrees. My fortune cookie said that I would be rewarded for a newly discovered talent. Perhaps, this means my new writing career will pay off. Or maybe it means Sue and I will be doing a restaurant review for the newspaper, since we are so talented at eating and traveling to different restaurants.
Feb. 21st and 22nd: This weekend is a busy one. Former Corvette Club members and friends, Charlene and Tom, come to visit. Tom is doing some work on my car and Ben is assisting. When two men get together in a garage, more talk goes on instead of work. Men complain about women getting together and just gabbing, but women can talk and work at the same time. Men seem to lack the gene which enables you to talk and work at the same time.
Speaking of genes, Charlene and I decide to make use of our genetic predisposition for shopping and drive to WalMart and the Maine Mall, while the men are busy in the garage. Ben gives me his pager, in case they finish their work before we return. He is assuming I will overdo it and be gone all day. Instead, I relax while Charlene drives. We were at the Mall less than 1 1/2 hours and sat in the Food Court for at least 1/2 hour. I only walked to a few stores to purchase gifts for Ben's and Christy's birthdays which are coming up in the next two weeks. Charlene and I arrive home before 2:30 pm., and the boys are just sitting down to lunch. I am surprised how good I feel today as long as I sit frequently and walk slowly. Though the adrenaline rush of shopping probably helps, my red cell count must be improving.
Sunday morning, I awake refreshed and ready to go. I decide to make a casserole for Bobbye. She has just come back from Atlanta and her mother's funeral. I haven't done any real cooking in almost two months, so I hope I haven't forgotten how to cook! I make a chicken and broccoli casserole and put it in the same dish she gave me a few weeks ago, filled with black-eyed peas. Bobbye says it is Southern etiquette to always return a dish filled.
Ben and I drive over to Bobbye's house to deliver the casserole. She looks tired and sad, but it is good to see her. I wish I had the energy and stamina to give her more help and support during this difficult time. She has done so much for me. She has fallen behind in her work and I tell her to call me when she gets a free minute. Bobbye lost her mother the same week Marian lost her father. Two of my closest friends have suffered a great loss and I can only offer words and thoughts by card and phone. It is very frustrating to be ill and unable to do certain things that you take for granted like driving, cooking, cleaning (not that I miss doing that!), or being able to help or run errands for a friend in need.
Feb. 23rd: Today, I am paying for the two good energy days I had this past weekend. I feel absolutely drained and finally drag myself out of bed around 9:15 am. I am groggy and ache all over. My friend, Carolyn, the one who saved my life last week with her hamburger casserole, shows up at my door with lasagna. She had promised to make lasagna because she had made one for me two years ago during my first chemotherapy and she remembered how much I loved it. While she is visiting with me, Sue calls. I tell Sue I'll call her right back.
About three hours later, I remember that Sue called. My memory has taken such a huge hit, from either the chemo or the drugs I'm taking. When Sue and I finally connect, I admit that I had completely forgotten to return her call. I cannot keep things straight in my mind. Sometimes, I forget in mid-sentence what I'm talking about and that is scary. I used to pride myself on doing twenty different things at once, juggling so many work and volunteer projects. My friends and business associates marveled how I did it all. I would also get very annoyed with myself if I didn't accomplish a certain number of tasks in one day and would often work late into the night. Those days are gone, but because my brain must be fried from the chemo, I am not placing as many demands on myself. I can even laugh about my memory loss and the standards I now set for myself have been drastically lowered.
My friend and fellow cancer patient, Polly, used to say she woke up every morning with a stash of "energy pills" in her pocket. However, the catch was she never knew how many were in the pocket and when they would run out. How true! I guess I over-estimated my supply of energy pills this weekend.
Feb. 24th: Today is another stormy day. Fortunately, it is mostly rain with a little sleet. Jean will drive me to my bone scan test at Bath Hospital. Poor Jean drove me last week in the snow, ice and rain storm. The bone scan takes several hours. First, you are injected with a dye and then you come back 2-3 hours later, after it has a chance to work into the bones. Luckily, you are allowed to leave the hospital during the 2-3 hour wait.
Jean and I visit the hospital coffee shop for an hour before going to CVS Pharmacy and the bank. We finish our errands and are soon back at the hospital for the actual x-ray part of the test. You have to remain still, and lie on a comfortable table with a pillow, for the x-ray which takes about 45 minutes. The technician was very talkative today which surprised me. He has done several of my other tests and seemed abrupt and formal, and definitely a man of few words. Today, we spent the entire 45 minutes talking about personal issues and situations and I was touched by his honesty and sincerity. It's strange how we often judge people by first impressions.
Yesterday afternoon, I got a call from a member of the Cancer Support Group, asking my advice on how to assist a friend whose husband has cancer. The patient is having some difficulties and his family is not sure what to do or how to help. I gave my friend some suggestions and referrals.
I am surprised that people frequently seek me out to discuss personal issues or ask advice, even people I do not know well. Sometimes, I feel like Dear Abby, Dr. Laura or Dr. Joy Brown. I certainly don't consider myself an expert on giving advice. Maybe people think I am a good listener, though I think I am a better talker. One of my business associates says I have the "gift of gab", which I probably inherited from my Irish great-grandmother. I think it is more likely what Dan Aykroyd referred to in that video classic, "The Couch Trip", when he said his ancestors were Toro Fecundians.
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