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Lincoln County News
October 1, 1998

"LifeLines" My journal about living with cancer

by Sandy Labaree

This journal submission describes my trip home for three days of check-ups and medical tests. Disturbing results send me off on a different journey, this time in search of a new course of treatment.

September 20, 1998: Today, we are in Chelmsford, MA for the Spindle City Corvette Club Show. It is a beautiful day and many cars have turned out for the show. We spent  last night at Christy's house. It was fun visiting with her, Nils and the two naughty grandcats. I hadn't seen Christy since she joined me in July for the Nevada, Utah and Colorado section of my Tour, and the Vettes on the Rockies Show. Meanwhile, the grandcats have grown tremendously and are now almost a year old. Their behavior has improved some, though Oops, and occasionally, Spot, continue to destroy plants, overturn trash cans and get into cabinets. The other day, the cats broke into the bathroom and made off with a box of Q-tips. Christy arrived home to find hundreds of soggy, chewed Q-tips strewn throughout the house.

Christy has chosen to avoid the car show routine today, but we are greeted by many of our New England Corvette buddies. Everyone is anxious to hear about our trip and to see if my car and I have held up well after over 20,00 miles! Tom, Charlene and Gary are also waiting to meet us. They have driven down from Maine for the day. Ann, from the host Corvette club, has arranged for us to set up our car and our display under a roofed pavilion where the DJ is located. One of our Corvette friends, Carol from New Hampshire, has given me several boxes of Halloween "peeps", which are orange cats and pumpkins manufactured by the company that produces the Easter marshmallow peeps! Soon, Gary, Peeping Tom and I are pigging our on the sugary delights.

Shortly after our arrival, Janet and Bill, friends from Mendon, MA whom I met through my column, stop by to visit and welcome me home. Angela, a fellow breast cancer survivor from the Boston area, also comes over with her family. She has been corresponding with me by e mail. It is the first time we have met in person. She gives me a cute gift of a little pink stone with a gold angel embedded in it. She and her daughter found this at an angel shop, she said. I have looked forward to meeting Angela. She is still in treatment, but looked absolutely wonderful and radiant.

The day flew by quickly and we collected donations, in addition to the benefit raffle held for the Tour. After the awards ceremony, we drove home to Maine. I rode with Gary for awhile in his car so we could chat. I have not been in Maine or in my own home since June 12th. It seems so strange to not be riding in my car and traveling to a hotel this evening.

Tomorrow morning, I start my day with a bone scan at Bath Hospital. I dread these tests. I have some persistent back pain and the lymph nodes in my neck are very tender and swollen. I know that something is wrong and I am preparing for the worst.

September 21, 1998: My bone scan is scheduled for 8:45 am. It is a two part procedure. First, you get an injection of a radioactive dye. Then, you come back about 2 1/2 hours later for the x-rays which take about 45 minutes. It is really a painless procedure. The technician monitors the procedure on a tiny TV type screen that shows your skeleton in miniature. Dr. Tom will have the results of this test when I see him on Wednesday afternoon.

After the bone scan is over, Ben and I run errands before we head to Augusta for the Cancer Vigil on the Statehouse steps. The American Cancer Society is holding the Vigil to launch the Cancer Awareness March on Washington this coming weekend. It is a solemn ceremony attended by some of my friends from my Cancer Support Group. I have missed seeing my fellow support group members over the past few months and we chat briefly about my life on the road. The upcoming March is particularly important to those of us who are cancer survivors and patients. We know firsthand the impact of this disease and how Congress must look at ways to increase funding for cancer research. Attention must also be directed to speeding up the process for experimental drug treatments, while issues involving insurance and patient rights need also be addressed.

After the Vigil, Ben and I drive to Bangor to spend the night. Tomorrow, I will be spending the day at Eastern Maine Medical Center for my mammogram and appointment with Wes.

September 22, 1998: Today, when I arrive for my mammogram at the Women's Health Center in Bangor, I am informed that I will be seeing a Dr. Huang, following my test. I explain to the receptionist that my doctor is Dr. Wes English. She apologizes and tells me that Wes retired last month and I have been assigned to a different doctor! I am stunned to hear that Wes will no longer be part of my team of doctors. He has "retired" before, but this time it looks like it may be permanent. I am disappointed as I was anxious to discuss the node swelling situation with Wes. I value and trust his opinion. Now, I will be starting from scratch with a new doctor.

After some delay, the mammogram results are sent up to the doctor's office. Dr. Huang is young and polite. He is holding a thick folder which contains my history and past visits with Wes. He explains that two areas on my mammogram show microcalcifications. In the past two years, I have had stereotactic biopsies done on microcalcifications found on my annual mammogram. Both proved to be benign calcifications, probably formed by scar tissue from my reconstructive surgery. Huang thinks this may be the case and suggests that this time instead of a biopsy, I should have a follow-up mammogram in six months.

I have many questions I had planned on asking Wes, and reluctantly, I ask Dr. Huang about my swelled nodes and arm. He comments that the arm shows mild lymphedema, which I had suspected. He said that there is not much to be done about it other than wearing a support stocking type sleeve and elevating the arm. He says that the radiation treatment I received could cause the nodes to swell and can occur even years later, due to the build up of scar tissue inside the nodes. I apologize for asking him 100 questions. He looks at me, smiles and says it was only 14. I get the distinct impression that he would rather not discuss my case in detail. The thickness of my chart and the "many doctors in the mix" make it easy for him to stick to just my mammogram and his follow-up recommendations. I leave the office rather dejected, resolving to call Wes at home once I complete my full round of tests this week.

September 23, 1998: Today, Ben and I drive to Brunswick for my blood test and visit with Dr. Tom. The lab department and Tom's staff are glad to see me and are anxious to hear about my trip. During my absence, Tom's office has been completely renovated and enlarged. He now has another doctor assisting him and the office hours have been expanded to accommodate patient needs.

Tom asks Ben to come in with me. Tom checks my weight and reviews my blood test results which are within normal ranges. He checks my nodes and says that the swelling may be a result of the radiation. He explains that he would be more concerned about the swelling of one node rather than the uniform swelling of nodes on both sides of my neck. He says he may consult with Jeff regarding the radiation and node situation. Tom is more concerned about my back pain. I point out an area in my shoulder blade that has been bothering me the past month. I ask about the results of my bone scan. Tom says the hospital hasn't sent him the written report yet, but he will get a voice read-out by phone. He disappears to check on the report by phone.

A few minutes later, Tom comes back into the room and looks concerned. My bone scan is apparently not good. There are multiple areas of "increased activity" which indicate metastasis to the bones. Small areas or hot spots are showing in about seven sites including the ribs, cervical vertebrae, both femurs, the right knee and hip, and skull. Tom says that I will need flat plate x-rays done now to determine whether the "mets" are blastic or lytic. Blastic is characterized by bony spurs or growth, lytic is a hollowing or deterioration of the bone. Both can be treated with radiation, not to cure, but to ease pain. Blastic tumors can be treated with Strontium 89, a radioactive element that slows the bone spur growth process. Lytic tumors can be targeted with drugs that promote bone mass such as those used for treating osteoporosis.

Tom explains that several treatment options are available including hormonal therapy and chemotherapy. Taxol, Xeloda or other investigational drugs are possibilities for chemo. Megace or Arimidex are choices for hormonal treatment. Though Tom does not elaborate, these treatment options are meant to slow the cancer growth. Pain pills and radiation will manage the pain. Tom says he will call Dr. Richardson at Dana Farber to consult on a plan of action. In the meantime, I can continue to take my Raloxifene pill daily. Next week, I will come in for a two hour IV infusion of Aredia, the drug that Dr. Dy out in Illinois recommended to me. Aredia is a drug that is approved for treatment of osteoporosis. It promotes bone mass, and though it will not cure the bone tumors, it may repair or limit some of the damage.

I have known since October, that being a Stage 4 patient means that a cure is probably not within my grasp. My best hope is that my cancer can be controlled and managed until new technology comes along. It is a question of hanging on, putting out the little brush fires with pills and chemo, waiting for the big break-through "cure", which may or may not be within my lifetime. It is ironic. I am sitting in Tom's office, looking tan and healthy. Meanwhile, I am falling apart from the inside out, kind of like a 50 year old house being eaten away by microscopic termites.

Tom and I discuss pain and sleeping pills. We decide to forego sleeping pills and select a stronger pain pill which should improve my sleep. I am determined to avoid the strong pain pills until I absolutely need them. Percocet and morphine are not in my vocabulary, at least not yet.

Tonight, we meet some of our friends for dinner at Canfield's: Tom, Charlene, Dot, Bill, Cheryl, Gary and Taylor, Paul and Sue. It is so good to see them and also visit with Mary Ann and the staff at Canfield's. Dot has brought me a scrapbook filled with wonderful photos of our time together in South Dakota and Montana this summer. It is a muted, bittersweet celebration tonight because I have told them about my sad news.

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