Lincoln County News
March 19, 1998
"LifeLines" My journal about living with cancer
by Sandy Labaree
This journal submission describes the final tests I am undergoing to determine the status of my cancer. My entries detail my anguishing wait for test results and preparing for both good and bad news.
I invite my readers to join me in the fight against cancer on March 26, 27 and 28, the dates for Daffodil Days, a yearly fundraiser for the American Cancer Society. Usually, I work with Carolyn Soule to plan Daffodil Days in Wiscasset. Because of my illness, I have been unable to do much this year. Carolyn needs volunteers to sell daffodils at Yellow Front Market in Wiscasset or deliver flowers on Thurs. and Fri. March 26 and 27. I plan to volunteer an hour or so of my time. Can you also volunteer an hour to help? Please call her now at 882-9707. Thanks!
Feb. 25th: Today is the last day of my barrage of tests. I am having CAT scans of my head, neck, chest, abdomen and pelvis, plus a chest x-ray and blood tests. The CAT scans are the worst because I have to drink three bottles of barium scan liquid at half-hour intervals before the test. This is really disgusting stuff! The hospital technicians say that it tastes like a vanilla milkshake. When I asked them if they had ever tasted it, they say "no", which is a pretty good clue it does not taste like a Dairy Queen milkshake.
I had CAT scans done before in October and November. I had a difficult time drinking the "milkshakes" then, even though they were cold, so I added chocolate syrup. As much as I love chocolate, it just doesn't cover up the barium flavor. My stomach and gag reflex have not fully recovered from my chemo, so I am worried about whether I can keep these drinks down. I add tons of chocolate syrup and try to focus on anything but drinking milkshakes.
June, my new friend from Damariscotta, is driving me to Brunswick for the tests. Thankfully, June keeps me talking and pre-occupied as I drink the last bottle of scan liquid on the way to the hospital. The Lab is busy today with overflow from the X-ray Dept. waiting room which is being renovated. All of the ladies from the Lab know me as a "regular", since I am in for blood tests once a week. One of the technicians, Claudia, must know that my chemo is finished because I am scheduled for follow-up tests. She gives me a hug and tells me how good I look.
The CAT lady (Linda) soon appears and leads me down to the CAT scan room. She asks if I mind having an audience today. I say "no" because I am already a literary celebrity. Apparently, a visiting radiologist and representatives from a diagnostic equipment company are there and want to view the scan procedure. The tiny CAT room is filled with people in business suits and lab coats. It's funny to see the huge audience observing me through the glass window. Linda does a great job hitting a good elbow vein for the iodine dye injection. To spare me getting stuck with another needle today, she also takes three vials of blood for my blood test.
Linda remembers me from my previous visits. She asks how I am doing and says she doesn't want to pry, but she is particularly interested in the results of an MRI and a neurological evaluation I had in Boston in November. The CAT scans of my head that she did in early November, revealed brain lesions which could have been metastatic cancer. These lesions or plaques have been there since 1988, when I had a neurological episode that was labeled as MS by one neurologist and possible MS by two others. I wasn't concerned about the lesions, but Dr. Richardson wanted to be sure it wasn't cancer and wanted an explanation for their presence. So after years of being mis-diagnosed with possible MS, I visited Dr. Martin Samuels, the head of Neurology at Brigham and Women's Hospital in Boston, and one of the country's experts in MS. He determined that my lesions were not MS, but harmless demyelinations caused by either a reaction to a flu shot or a viral infection. There's a long medical name for this condition, but the important point is I don't have any sign of cancer or MS in the brain.
Linda is pleased to hear this. Technicians must be curious about a patient's outcome and diagnosis when abnormal things are found in an examination and the patient is then referred to a specialist out-of-state. Chances are, the technicians never hear the outcome of their findings.
June and I return to my house for a short visit and lunch. June is an intelligent, witty lady and fun to be with. I think she would make an excellent older sister. Being the oldest in my family, I have been deprived of having the wiser, older sister who has "been there and done that". I look forward to spending more time with her and she says she'll call me after my trip next week to Dana-Farber.
Feb. 27th: Today's is Ben's birthday and Sue, Paul and I have planned to include the celebration in our regular Friday night routine of visiting area restaurants. Tom calls me this afternoon to report good news on my tests. My red cell count has hit 32 which is the highest it's been in a month, so my anemia is definitely improving. In one week, my white cell count has dropped from the Neupagen spike of 9900 to 2000. This week is my "nadir", the normal low point for white cells that occurs three weeks after chemo. Hopefully, next week's blood test will show my white count inching up. When my count gets down in the 2000 range, I tire easily. I have been dragging this week, so it must be the white cells rather than the anemia.
Tom says my CAT scans look good and there is no sign of the two enlarged lymph nodes. This is odd, since both Tom and I can feel at least one node. Tom determines that when the CAT scan was taken, somehow the neck area was not x-rayed at the same angle as the October scan. Tom then calls the radiologist and decides to do another CAT scan of the neck area next Wed., using the same angle as before. We want to be certain the nodes have shrunk. I am feeling optimistic, even though we have not gotten the key information on the nodes. My blood work looks good, the scans of the head, pelvis and abdomen are fine, and my RVG heart test was normal.
It's now almost 5 pm. and I am wrapping Ben's birthday gift when Tom calls to tell me he has just gotten the results of my bone scan. Disturbing news: The scan reveals a suspicious spot on my 10th rib on the right side, the same side as the two lymph nodes. Not surprisingly, it is most likely the tender sore area that I have been pointing out since Dec. 4th to Tom and the physician's assistant. We had been dismissing it as an inflammation in the muscle or tendon. The tenderness began in mid November, less than 3 weeks after the supposedly perfect bone scan the last week of October. Tom and I were confident the bones were clear. The tenderness has gradually subsided since Dec. 4th. Coincidentally, that was the first day of my chemo treatment. If this proves to be a cancerous spot, the chemo could have zapped it, or possibly made it "flare up", according to Tom. Apparently, Adriamycin, the chemo drug I received can often cause "flare ups". I don't know what this means, but believe me, I will find out.
Tom asks me for Dr. Richardson's phone number. He is calling me from home and wants to call Dr. Richardson now. This is obviously not good news. I give him Richardson's phone and pager number. In a few minutes, Tom calls back to say he has reached Richardson. They will order a CAT scan and a flat plate x-ray of the rib area to be done next Wed. with my neck scan. I ask Tom as many questions as I can think of, though I am still reeling from the unexpected news. How can this be after getting good test results less than two hours ago?
Tom says that the bone spot is one of several possibilities: a rib fracture from trauma, arthritis, a pathological fracture caused by cancer weakening the rib, or an actual tumor in the rib. I have no recollection of an injury or fall, so a fracture seems unlikely, and a rib also seems like an odd spot for arthritis. So, I am now gearing up for the "wait". One of the worst ordeals in dealing with cancer is not the treatment, but the agonizing wait for upcoming tests and the delayed results. I am already preparing myself for the worst: the further spread of my cancer.
Ben will arrive home soon. I am determined not to cry. It is his birthday and he does not need this cruel news. I wanted this day to be his and not the usual focus on me and my illness. When Ben comes in the door, I am still on the phone with Tom. There is no way I can spare him the news, because he senses something is wrong. After I hang up the phone, I give Ben the details. Thank God, I manage to be matter-of-fact and remain composed. I quickly direct our attention to opening birthday cards and gifts. Sue and Paul will arrive any minute for our dinner engagement and this will be a pleasant distraction. I take a minute to fire off a quick e mail to my parents. I need to share this disturbing news, and I am hoping for some medical insight from my Dad the doctor.
As a further distraction, I ask Ben which wig to wear tonight. I put on my "Jezebel" and "Julia Roberts" wigs and model them for him. He thinks the Julia Roberts is too much of the "big hair look", though he likes the color. He chooses the Jezebel, which is long, wavy ash brown hair. So, I will go out tonight in the sexy wig that my sister, Peg, named Jezebel.
Sue and Paul arrive and we travel to Damariscotta to Salt Bay Cafe. We have a great dinner and pleasant evening. My illness is always a topic at some point, so I pass along the bone scan news to Sue and Paul, but don't dwell on it. I welcome the distraction of a fun evening out and Ben seems to be enjoying himself. He is fighting off a cold, so it is hard for me to tell how this latest news is affecting him. When we arrive home, I find an e mail from my parents. My Dad thinks there is some possibility it may not be a cancer spot. He said that usually cancer shows up as multiple spots in bones. My parents urge me to keep the faith and think positive thoughts. They are hoping and praying for good news. I am, too, but I have been down this road before and I have to prepare myself for bad news. I have learned to rejoice in the good and accept the bad, but it takes advance mental preparation and faith for me to accept the bad.
Feb. 28th: Tonight Sue, Paul , Ben and I attend a benefit dinner/dance for Claudia, an employee of the newspaper. Claudia is a cancer patient undergoing treatment at Mass. General in Boston. She is a very brave and determined lady with a positive attitude. She tells me that she appreciates my journal articles. Watching her this evening, I could see the full range of emotions that are so familiar to me: sadness, wonder and happiness. The room was filled with family members and many friends who came out to support her. Certainly, the memory of this special evening will see her through the difficult months ahead.
I was pleased to see business friends and acquaintances tonight that I hadn't seen in over a year. I was wearing my Jezebel wig and a few people didn't recognize me since I change my identity daily by wearing either a blonde, red or ash brown wig or a variety of hats. It must be confusing to people who know me, but I enjoy having the choice of hairstyles and colors to suit my moods or the occasion.
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