Lincoln County News
July 22, 1999
"LifeLines" My journal about living with cancer
by Sandy Labaree
This journal submission describes appointments with Dr. Tom and my surgeon. We enjoy a quick visit with Christy, and a Tour appearance in MA gives new impetus to my mission.
July 6, 1999: Today, I met with my surgeon, Dr. Lisa Minton. I always look forward to seeing her as she is easy to talk to, and so down to earth. Dr. Lisa is also very thorough in conducting my physical exams. Her expert hands can find every node and lump of scar tissue in my chest and neck area. Lisa says nothing has changed since my April visit. I will return in three months for another check-up.
Dr. Lisa asks what comes next in my treatment plan. I tell her I am still researching my options, and I describe the hormonal injection that Dr. Dy mentioned. She is familiar with the drug and said it is worth investigating. The more I consider my treatment options, the more I am straying from chemo options. Dr. Lisa reminds me that having a third round of chemotherapy often disqualifies you from many clinical trials. I have decided to explore other treatments that won't disqualify me from participating in future clinical trials.
June 10, 1999: Today, we are in Woburn, MA for a one day Tour appearance at the NCRS Regional Corvette Meet. We drove down last night to stay with our daughter, Christy, and her husband, Nils, in Bedford. This visit will be more enjoyable and longer than most, as we always seem to be just passing through. The two grandcats, who Ben claims are biological mutants, have gotten even larger and fatter since our last visit.
Christy tells me that Nils' grandmother, who is in her mid 80's, had a breast biopsy last week. Christy took her to the doctor and waited for her while she had a stereotactic biopsy. Gran is already fearing the worst, and preparing herself for a cancer diagnosis. She tells Christy that she admires me for facing my battle with cancer so valiantly. My heart goes out to Gran as she waits the interminable wait for biopsy results. I worry also for poor Christy, who certainly must anguish as she deals with yet another cancer ordeal in the family.
We will set up our Tour booth and display at the NCRS Show for six hours. We arrive at 9 am. to find Kevin, probably the most famous Corvette restorer in the country, flagging me down and asking for help. He explains that his sister-in-law was recently diagnosed with a glioma, a rare and often deadly brain tumor. I am taken back by this man's spontaneous outpouring of emotion. He describes how this healthy 32 year old mother of a two and four year old is facing the battle of her life. Recently, she suffered seizures and leg spasms, which sent her immediately to her doctor. Scans revealed a brain tumor, a Stage IV glioma. Gliomas are primarily treated with surgery, removing as much of the growth as possible, since they tend to grow back. Within days of her scans, the tumor doubled in size. She has had surgery to remove the tumor, and is being released from the hospital today.
Kevin says that his whole family has rallied together. His sister flew in from California to help care for the children, and to take charge of researching treatment options. Kevin asks if I would talk to his sister by phone. In minutes, I am on Kevin's cell phone talking to her and giving her phone numbers and websites for cancer information and research. I also remembered reading a wonderful story in Reader's Digest about three months ago. It was written by a young woman who lost her husband to glioma. He was also in his thirties. She wrote in detail about his surgeries and how they researched all avenues of treatment. I tell Kevin and his sister to look up this article and read it. I also urge her to keep the faith. Though a glioma diagnosis is almost always fatal, there have been survivors. Kevin's sister-in-law is a healthy woman who can probably withstand rigorous treatment. As long as she is willing to fight the fight, and it's her choice, she should go for it. I suggest that she also discuss quality of life issues with her family and doctors.
I mention to Kevin that the family should also prepare for what comes next if she loses her battle. No one wants to think about death, but there are young children to take into consideration. His sister-in-law will probably want to live her life to the fullest. There may be dreams she would like to fulfill and special things she would like to leave behind as a legacy to her children. We should all plan our lives as if we know when our time will be up. Many of us tend to work better when we have deadlines. We ought to think in terms of deadlines in how we live our lives.
Setting up my booth was delayed, but helping Kevin made me ponder how the Tour and my mission have changed in the past year. Now, when we arrive at shows, cancer patients, survivors, or those who have a family member or friend dealing with cancer, stop by our booth, eager to share their experiences. Many are looking for information, assistance and emotional support. One woman referred to me as the "Cancer Angel of Mercy". I am still learning about the human experience every day on this Tour. I do not profess to have all or any of the answers. I would like to think my mission is guided by angels and those who have gone before us, but I am no different from any person who has faced this challenging disease.
In the afternoon, a fellow Mainer, Bill, stops by our booth. He said his wife, Martha, had just finished treatment for breast cancer and will come by later to talk to me. He said Martha heard me speak at the Living With Cancer Conference. Martha is in their hotel room hooking a rug. Bill jokes that she is the head Hooker for NCRS. When Martha comes by, I tell her that Bill said she was the official hooker. She laughs and shows me the now completed rug which is absolutely spectacular. Woven in vivid shades of red, yellow, orange and green against a royal blue background, it features a three dimensional pattern of lilies that remind me of Hawaiian flowers. She is pleased that I, and Corvette Mike who is standing next to me, recognize the Hawaiian motif. Mike and I agree that the rug belongs on the floor of a beach house.
Martha has the beginnings of squirrel head. I had this last summer when my hair first started to grow in, looking much like very short fur. She has a cap on, but she is an attractive woman who looks beautiful even with the shortest of hair. She tells me she just finished her radiation and chemotherapy and is working on getting her energy back. She exercises and rides her bicycle regularly. She is very fit and muscular, not like me the Megace poster child, who bears a resemblance to the Goodyear blimp.
Martha tells me that her rug hooking is very therapeutic. The Hawaiian rug which she designed was her cancer treatment project, as it began with her diagnosis and finished with her treatment. She says this rug will always have special meaning. Martha teaches rug hooking to other teachers, and she will soon share the techniques of this special rug in a one day class in MA.
July 12, 1999: Today, is my appointment with Dr. Tom. It is a busy day at Tom's office and I have a long wait. When I finally get in to see Tom, I tell him the information I have learned about the hormonal injection, LHRH, which is now being tested in breast cancer. Tom has heard of it, but says that I will have to ask Dr. Bunnell about it. I remind Tom that Dr. Bunnell is slow in returning my phone calls and Tom says he has the same problem reaching Bunnell. Tom suggests I could try making an appointment to talk to Bunnell. In the meantime, Tom says he will check out information on the hormonal treatment.
I tell Tom that I have been feeling quite well, despite the aches and pains which seem to migrate to different areas in my bones. I have managed with one to two pain pills a day, and sometimes less. Not bad for being on the road for 3100 miles and sleeping on hard mattresses the past two weeks. Tom seems pleased with how I am doing. I ask if I am due for a bone scan. He admits I am overdue, but says he's hesitant to order any tests as I may end up having them all redone for clinical trials at Farber. Tom says I should have tumor marker tests and a CBC. Cindy will take my blood for these tests while setting up my IV today, which will save me a trip to the hospital lab.
Cindy takes my blood and hooks up my IV. A lady in the chair next to me, asks if I am Sandy. She recognizes me as the speaker from the Living With Cancer Conference. She says she tried to catch up with me at the Conference, but I was mobbed by people. Mary introduces me to her husband, Neil. She is from Woolwich and is getting chemo for colon cancer that has spread to her lungs. She explains that the tumors in her lungs have shrunk from the treatment. If I hadn't seen her getting chemo, I never would have guessed she was in treatment. She looks wonderful, and to paraphrase what everyone tells me, "She doesn't look like a cancer patient."
Ben surprises me by dropping by the chemo room. He is passing through Brunswick on his way to Augusta. Being behind schedule and missing lunch, I send Ben to get sandwiches from the hospital coffee shop next door. We enjoy a private little picnic in the chemo room. By the time I arrive home, I have been gone 5 1/2 hours. I'm tired and suffering from bone pain, a side effect of Aredia. Usually the day of treatment, I only have minor aches and pains in my legs. Today, I am aching all over, especially in the middle of my spine. I feel like I fell down a flight of steps. I am not in a good mood. I was hoping for an answer on my next course of treatment, but instead I must wait. With Tom referring me to Dr. Bunnell, it is obvious that decisions on my care have been shifted to Dr. Bunnell and Dana Farber. I feel like my options are shrinking and I am losing the comfort of having Tom in control.
- - -