Lincoln County News
April 2, 1998
"LifeLines" My journal about living with cancer
by Sandy Labaree
This journal submission details my visit with Dr. Richardson at Dana-Farber Cancer Institute. The results of this visit send me searching for second and third opinions. I now face a new course of treatment, radiation, in the coming weeks ahead.
March 6th, 1998: Ben and I leave early this morning for my appointment at Dana-Farber in Boston. We stop at Midcoast Hospital in Brunswick to pick up my scans, x-rays and reports. The X-ray Dept. does not have them ready and we wait half an hour while they gather the materials and put them into two large envelopes that weigh about 10 lbs. each. My whole life is in these envelopes.
While my records are being assembled, I page Dr. Tom. He returns my call and we discuss the latest scans and x-ray reports. Tom says the neck scans are inconclusive. Though we can still feel at least one node, they can't be seen on the scans. The rib area is being characterized as a healing fracture, possibly a pathological fracture caused by a metastasis to the rib. I question Tom about how this could develop so quickly after getting a negative bone scan on October 29th. The tenderness in the rib area began three weeks after the supposedly negative scan. Tom says it is possible for cancer to pop up in one spot that quickly. He adds that unless the fracture was from trauma, it is probably evidence of a cancerous spot that was zapped by the chemo. He is looking to Dr. Richardson for the final opinion on the rib and the node situations.
On the way to Boston, I mull over the unsettling news about the rib fracture and the timing of the rib tenderness. I certainly did not fall or injure myself. The tenderness began in mid-November. I search through my pocket calendar and note that I had a sonogram on November 14th. This ultra-sound test was ordered to locate seven tiny suspicious spots on my liver, spleen and kidney that had shown up on my CAT scans a few days earlier. The radiologists needed to determine whether the spots were cancer, benign cysts or hemangiomas. In order to locate these minute spots, I was stretched out on my left side, holding my breath, while the technician pushed the sonogram paddle hard up into my right rib area and upper abdomen. It was a very uncomfortable procedure and the technician apologized for having to push so hard with the paddle. Perhaps, this caused enough trauma to fracture a rib and I will mention it to Dr. Richardson.
Dr. Richardson is running only 15 minutes late today. I have waited up to two hours during previous visits. He is pleased to see me looking so well after all my chemo treatments. I tell him that the lymph nodes cannot be found on the latest scans. He examines me and measures the one small hard node, estimating it at less than 1/2 centimeter. He says my nodes have shrunk, but not completely. Technically, this means my cancer is not in remission. I tell him that I am planning to have the nodes removed surgically. He looks alarmed and says he would advise against that. He explains that the neck area is vascular, the nodes would be difficult to locate, and the surgery could spread microscopic cancer cells. I have heard other DR's express the opinion that surgery can spread cancer and that is why I had asked Tom if that would be true in my case. Tom had said "no". After these conflicting opinions, I now plan to call my surgeon, Wes, for his opinion.
The next order of business is the spot on my ribs. I describe when the tenderness started and the clear bone scan three weeks prior. Dr. Richardson seems surprised by this finding. He tells me that bone mets usually occur in multiples (exactly what my Dad said!) and usually in the spine, hips, and pelvic area, not the ribs.
Richardson reviews my rib x-rays and says the spot looks like a typical trauma fracture. It has a diagonal line to it, suggesting a stress fracture. He asks when I went into menopause and if I have any family history of osteoporosis. My menopause was drug induced by chemotherapy in 1995 and I have a significant family history of osteoporosis. I also describe the sonogram incident. Richardson thinks the spot is a stress fracture from the sonogram. He believes that my ribs may be weakened from bone thinning due to my previous chemotherapy, compromised estrogen levels and possibly osteoporosis. He will ask Tom to order a bone density test to check for bone thinning and osteoporosis. This is wonderful news! Not that osteoporosis is good, but it is certainly better than cancer!
Dr. Richardson says that my status in terms of a bone marrow transplant has now been downgraded. I cannot be accepted as a candidate until I undergo radiation to the nodes and take Tamoxifen, a hormone drug that suppresses estrogen which can activate breast cancer cells. Even after this treatment, Richardson has lowered my odds from 35% to 20% of surviving five years after a transplant. I tell him that I have decided against having the transplant at this time, but may consider it down the road. He does not seem disappointed and says that he would recommend radiation and Tamoxifen as my next order of treatment, regardless of the transplant. When I ask how effective this treatment would be compared to the transplant, he admits that probably the survival statistics are about the same. I am now feeling quite confident and comfortable with my decision not to do the transplant. I thank Richardson for his help and tell him I expect to "hang on" for awhile. Perhaps, in a few years he will have a new drug or research project that could cure me.
After leaving Dr. Richardson's office, we pick up Christy at her office in downtown Boston and head to the Burlington Mall to do birthday shopping for her and Ben. Ben is shopping for shoes and he finally finds a pair of sneakers after trying on about 50 pairs.
We return to Christy's house in Bedford to visit with the grandcats. They have grown immensely since our last visit. Oops, aided and abetted by Spot, pillages the house daily while Christy and Nils are at work. Oops is a "carrier" and a paper fanatic according to Christy. He unrolls toilet paper, dragging it through the house and empties wastebaskets to retrieve napkins or tissues. Collectively, the Orange Menace indulge in frequent wrestling matches, overturn their water dish regularly and drag it out into the middle of the kitchen floor. I think they have separation anxiety and need cat counseling, because they behave much better when their "parents" are home. Christy says they just need more beatings.
Tonight, we celebrate with a birthday dinner at the Iguana Cantina in Waltham. It is a small funky Mexican Hard Rock Cafe type of place with a giant plaster of Paris green lizard hanging from the ceiling. The food is great and the fajitas are supposedly the best in the Boston area. We can attest to that. A group at a neighboring table is also celebrating a birthday. The waiters come out with a giant sombrero and place it on the head of the birthday person and sing "Happy Birthday", accompanied by many off-key patrons. Christy looks over at me and warns, "Don't even think about it!" She says it will take at least another Margarita before she can submit to that humiliation.
We have given Christy a bird clock for her birthday. It is almost identical to the one that Peg gave me for Christmas and each hour a different bird sings. To preserve your sanity, the clock is light sensitive and shuts the bird songs down at night or when the room is dark. I purchased the clock at a nature store in the Maine Mall. It was the last one on the shelf and the manager told me the clocks are so popular, they can barely keep them in stock. Ben hangs the clock in Christy's kitchen and tests the hourly settings. Oops and Spot come running. After a few minutes of frantic searching for the birds who have invaded their house, the cats determine that the birds are inside the clock. Later, we notice Oops staring at the wall, probably contemplating how he can scale it.
March 12, 1998: For the first time in months, I am driving my car this week on short trips, mostly to meetings. I am probably overdoing it, but I am using this week as a break between tests and treatment, to get some Business Assn. work accomplished.
Tom called on Monday to discuss Dr. Richardson's suggested course of action. Tom seemed somewhat surprised by Richardson's assessment of the rib situation and said he will continue to monitor my bones. Since Richardson recommended radiation rather than surgery, Tom has arranged for me to meet next Wednesday with Dr. Jeff Young, a radiation oncologist at the Coastal Cancer Treatment Center in Bath.
Meanwhile, I have been researching and gathering medical opinions. On Monday, I had lunch with Paul, a retired radiation specialist. He has generously provided information to me in the past and agreed to discuss my case in more detail. Paul thinks radiation is a good way to proceed and he was very helpful in answering my questions.
On Tuesday, I had a long phone conversation with my friend and surgeon, Wes English. He wanted to know the latest details and developments regarding my cancer. He said he had been thinking of me over the winter and was wondering how I was doing. Wes closes his practice in November and goes to Florida until early March.
I told Wes that Dr. Richardson recommended radiation treatment because surgery could spread my disease. I was surprised when Wes completely agreed that radiation was the best way to treat my cancer now. I commented that I thought surgeons always recommended surgery and radiation specialists always recommended radiation! Wes laughed and admitted that happens quite often. He also agreed with my decision to not choose the bone marrow transplant. He says knowing me, he's confident that I have researched everything fully.
I have known Wes for nearly 20 years through the American Cancer Society. He is a highly skilled and recognized surgeon and the only one I would trust with my body. He is also one of the most caring and devoted doctors I have ever met. Wes has a different perspective on cancer than most Drs., because he had a personal bout with the disease nine years ago. He understands how cancer effects your body, mind and your relationships in life. Wes not only wants to hear about my illness, he asks about my work, hobbies, my family, and how "everything" is going. He is such a caring man who has been moved to tears during one of my office visits and at the Living With Cancer Conference. Wes says I am "one courageous lady" and asks that I have Dr. Young send him copies of all my reports.
(Note: the following entry of March 13 was not submitted to newspaper)
March 13, 1998: Armed with several opinions supporting radiation, I am now gearing up for treatment. I have never had radiation, so this will be a new experience. I am still very tired from the chemo. My joints and bones seem to be increasingly inflamed and painful, particularly, my wrists, hands, elbows and legs. The pain is more like nerve pain rather than the swelling or stiffness of arthritis. Joint pain was an after-effect of my chemo in 1994-95, so this too may be a legacy from the latest regimen. Last night, my legs ached so much I could barely sleep. I will call Tom about this and get some medication. I have put off calling him because painkillers make me groggy and then I can't drive. The pain is now to the point I can't ignore it.
I suspect my white cell count is still trashed and I plan to get a blood test tomorrow. Tom wants me to continue on weekly blood counts for awhile. I have been too busy on my little vacation this week to go over to the hospital. When I am no longer a "regular" in the Lab and X-ray Dept., they will see a huge drop in business at Midcoast Hospital.
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