Lincoln County News
October 22, 1998

"LifeLines" My journal about living with cancer

by Sandy Labaree

This journal submission describes my recent evaluations and tests conducted by my New Jersey oncologist, Dr. Rothberg. I also confer with Dr. Tom, and now armed with several opinions, I prepare to return to Maine to start my upcoming treatments.

October 13, 1998: Today, I have a return visit with Dr. Harvey Rothberg. Harvey has fully reviewed my x-rays and CAT scans, and has confirmed 12 to 15 spots on my bone scan that are probably bone metastases. He is most concerned about a 1 cm. tumor in the cervical vertebrae and a spot in the hip area. Both can be dangerous should the bones deteriorate further, and he recommends immediate action be taken.

Harvey discussed all of his findings with Dr. Tom last Thursday and phoned me last Friday to discuss plans for treatment. Today's appointment will be a quick review of our discussion and a chance for me to ask questions. Harvey is suggesting two methods of treatment. First, an oral drug, Arimidex, which is a hormonal treatment. Secondly, a six month regimen of chemotherapy using Taxol. Both drug regimens can be done together. Harvey says that Taxol shrinks tumors in about 70% of cases. If it is successful, it could put my cancer in remission for six months to two years.

Taxol is given in a three hour infusion once every three weeks. It is a very toxic drug which can produce a severe allergic reaction. To prevent a reaction, you are given two doses of a steroid, Decadron, one twelve hours before and the second six hours before the Taxol infusion. In addition, Benadryl, Tagamet, and anti-nausea medication are administered with the Taxol.

Both Tom and Harvey agree that my cancer has advanced and spread into the bones, and Arimidex is the drug of choice to treat it. However, Harvey strongly feels that Taxol should be administered as well. He suggests that I could try one round of Taxol to see how I tolerate it. He assures me that whether I receive Taxol in NJ or in Maine, he and Tom will use the exact same method and dosage.

At the beginning of my visit with Harvey today, I find out that the medical group that Harvey is associated with does not accept my health insurance, Blue Cross/Blue Shield! I would have thought that Blue Cross/Blue Shield was one of the most universally accepted insurance providers, but evidently not with Harvey's medical group. Should I choose to receive treatment with Harvey, I will have to pay for it out of my own pocket and submit claims to Blue Cross in Maine for re-imbursement. Due to insurance technicalities, some of my chemotherapy would not be re-imbursed unless I received it at the hospital, and some of my other visits and tests may not be covered in full. I thank Harvey for his kindness and the time he has put into this consultation, but tell him that as much as I would like to remain in Princeton with my sister, Peg, the insurance issue would be a nightmare. Harvey is frustrated and has his nurse double check the insurance situation with his billing office and Maine Blue Cross/ Shield, which assures her that they will pay for my treatment in full. Still Harvey's billing office won't budge on accepting payment or billing Blue Cross directly. Harvey shakes his head and sadly comments that my dad got out of practice at the right time. Since my dad retired about two years ago, Harvey says insurance hassles have grown increasingly worse. Though health insurance is an absolute necessity, rules and regulations make it difficult for doctors to do their jobs and for patients to make choices in their care. The mountains of paperwork that medical offices and patients deal with is staggering, and only adds additional stress to both doctors and patients.

Well, at least one of the decisions facing me has now been decided, unfortunately by the crazy screwed up insurance world. As much as I would appreciate staying with my sister, Peg, and having her support and help throughout my treatment, the insurance aggravation is hardly worth it. I return to Peg's house with my tons of x-rays and medical files, and call Tom's office to make an appointment for next week. Ben will be driving down to NJ this weekend to pick me up. Later in the evening, Tom calls me to discuss the upcoming treatment plan of Arimidex and possibly, Taxol. Every three weeks, I will have tumor marker blood tests done which will show if the tumors are shrinking. Tom says that my baseline tumor marker test shows a level of 135. Normal is around 35. I ask Tom if I receive both Taxol and Arimidex together, how will we know which drug is hopefully reducing the tumor marker level? Tom confides that his approach differs slightly from Harvey's in that he would be willing to put me on Arimidex for one month to see if that drug alone would shrink the bone tumors. He assures me that one month without the Taxol is not a big concern. We also discuss the Taxol treatment that Tom says the folks at Dana Farber refer to as "cueball chemotherapy". With Taxol, you lose every hair on your body, a rather depressing thought now that my hair is growing back in quite nicely and wavy. For the first time in my life, I have naturally curly hair. A winter of baldness is not really appealing, but I can manage if necessary. My biggest concern is the doses of Decadron that must be administered with Taxol. Decadron is the drug that during previous chemos, made me climb walls and pull "all-nighter's" with no sleep. It was like a huge overdose of caffeine, allowing me to work all night on my computer, and worse yet, do long hours of housecleaning! I was half-crazed and Tom remembers that. I joke that if I go crazy on this drug and kill someone, he is responsible. The Decadron dose that is required with Taxol is twice the amount that I took before.

October 15, 1998: Tonight is payback time. My sister, Mary Ann, is taking me to a performance of the NJ Symphony Orchestra. Some well-known violinist will be appearing with the orchestra. Mary Ann loves opera and symphony. She was a fish out of water going to Corvette events with me this summer, and she reminds me that she submitted to that just so she could be with me. So, I will have to return the favor. Fortunately, Mary Ann is taking me to a nice restaurant for dinner beforehand. I figure that if I am lucky, I will sleep through the orchestra and the violin music. I should be thankful that she didn't invite me to some Wagnerian opera to hear the fat lady sing. That would be three hours of sheer torture.

Tomorrow, my brother, Ray, will pick me up and take me to my parent's house at the Jersey Shore. I will get a chance to visit with Ray briefly and meet the latest addition to his family, a miniature dachshund puppy named Pogo. I plan to visit my parents this weekend before heading home to Maine. I will miss seeing Peg and all my family. With my upcoming treatment in Maine and the possible Taxol regimen, I don't know when I will be able to return to New Jersey.

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