Lincoln County News
March 26, 1998

"LifeLines" My journal about living with cancer

by Sandy Labaree

This week's journal details the frustrations of dealing with insurance companies and the hassle of a second round of x-rays and CAT scans. On a more positive note, I have the pleasure of meeting my "twin", who is also a devoted fan of my column!

March 1, 1998: Today is cloudy and drizzling, but Spring is in the air. I saw four redwing blackbirds and caught a quick fleeting glance of a robin flying off into the woods near our front yard. I have never seen blackbirds and robins in our yard before March 15th. Perhaps, this bodes well for an early Spring. Ben says it means we will have a big snowstorm soon!

I am hoping that the change of seasons will boost my spirits and my white cell count. I suspect that my white cell count may be dipping below 2000 as I am tired and dragging today. My joints have also been painful the past week. Following my 1994-1995 chemo, my joints and muscles were inflamed for months. I fear that the same autoimmune reaction may be setting in again.

To keep my mind off of my aches and pains, I tackle my pile of fan mail this afternoon. One of my notes is from Carol, a breast cancer survivor and Reach to Recovery volunteer for the American Cancer Society. Reach volunteers are women who have undergone a mastectomy or treatment for breast cancer. After a successful recovery time has elapsed, the volunteers are specially trained to visit women who are newly diagnosed with breast cancer. The visits usually occur in the hospital either right before or after the patient has surgery. Since hospital stays are now so short, the visits can occur in the patient's home. It is very comforting and a positive reinforcement for a patient to meet and talk with a woman who has gone through the same treatment and procedures. The American Cancer Society conducts the Reach To Recovery program nation-wide free of charge. Bless you, Carol, for being one of these special volunteers.

I also receive a note from the 93 year old cancer patient from Nobleboro who recently sent me a letter and photo of his bald bandaged head and smiling face. Last week, I wrapped my own bald head in a fake bandage, put on Ben's glasses and sat in a chair and smiled while Ben took my photo. An annoyed Lurk was sitting on my lap with his back turned to the camera. I then mailed my photo to George with a note that read, "Twins separated at Birth?" and hoped that he shared my perverted sense of humor. Apparently, he does because he wrote to acknowledge that we do look alike.

George also sent me his phone number so I could call him and stop by his house sometime on my way to Moody's Diner. Ben and I are planning to go to Moody's tonight so I call George. He is delighted by my phone call and agrees to meet us there with his sister, Ruth. We meet at 6 pm. and have a wonderful dinner and visit. George is incredibly young and healthy looking for his age and his mind is sharp. In addition to looking like me, he is also a literary celebrity and writes historical articles for the same newspaper. What a tremendous coincidence! Before we leave, George gives me a copy of a book he wrote on the Bicentennial History of the First Baptist Church of Nobleboro. Ben asks George to personally autograph the book and I promise to give him an autographed copy of mine when it hits print. I am sure that George and I will meet again, possibly at a joint book-signing party at Bookland or at Stephen and Tabitha King's house in Bangor.

March 2, 1998: I have a busy schedule today with a Business Association meeting that lasts until noon. Since I am feeling alert and peppy this morning, I drive the short distance to my meeting. Afterwards, I return home to do battle with my health insurance company. Beginning March 1, I went on Ben's Blue Cross plan at work. My former insurance policy (also with Blue Cross) expired on Feb. 28th and I made all the necessary arrangements months in advance to insure a smooth transfer on to Ben's policy. The switch should have been simple because Ben and I had similar plans with the same insurance company. I am calling Blue Cross today to make sure the policy change has been made. After the typical 10 minute wait on hold, I speak to a customer service representative who informs me my coverage ended Feb. 28th. She has no record in her computer of me being on a new policy or the transition of coverage. Blue Cross has also failed to generate a new insurance card for me. After I explain all the arrangements that had been made and supposedly re-confirmed by Blue Cross over the past month, the representative makes the necessary changes in the computer. I still will not have an insurance card for a week or so, which complicates registration for my x-ray and lab tests on Wed. and my trip to Dana-Farber on Friday. Obviously, the representative doesn't care about that inconvenience and says the hospital can call Provider Services if they have any questions. I'm sure the hospital registration people will enjoy being on hold for 10 minutes while my policy information is being confirmed.

Fortunately, I am feeling mentally and physically able to do battle with the insurance company. In talking with other patients, it amazes me how few are aware of their rights as a policy holder. Many are physically unable to question billing problems, policies and other insurance procedures. The last thing a cancer patient (or anyone who is seriously ill) needs is to worry or argue about medical bills or insurance claims. It is extremely stressful. Unfortunately, some insurance companies and their customer service representatives have no understanding and compassion for those who are seriously ill. Well, that is just one skirmish with my insurance company. I know there will be many more battles to come during my policy transition.

This afternoon, Ben and I reverse roles as patient and care giver. Ben has had an on-going problem with a pinched nerve in his upper thigh. After various other treatments failed, his neurologist is trying injections of Prednisone at six or eight week intervals to block the nerve pain. Three injections are planned and Ben had the first one back in early December. Because of my treatments, Ben has not had time to schedule his second injection until today. It seems strange to sit in the waiting room at Parkview Hospital while Ben is the patient. An anesthesiologist administers the injection, which is given between vertebrae in the spine. Thankfully, the area is numbed first with Novocain and Ben says the injection itself is not painful.

The whole procedure sounds disgustingly similar to the bone marrow sample I had taken in November. I have had many surgeries, tests and treatments over the years, but the bone marrow sampling was by far the most painful. Dr. Richardson went easy on the Novocain and the sample area was not adequately numbed. It felt like a giant needle was being stuck into my pelvic bone and coincidentally, that was exactly what was happening.

Enough disgusting medical stories and graphic details! Ben and I go over to Applebee's for dinner before our Cancer Support Group meeting in Brunswick. It is great to see all of my friends and fellow patients. I have missed quite a few meetings because of being wiped out from chemo. Tonight, there is a huge turn-out and two new members join the group. Newly diagnosed patients enter the group every month, but I am still touched by their concerns as they begin the long uncertain journey with cancer.

March 4, 1998: Today is the critical test day. I am having a CAT scan of my neck to check the status of the two enlarged lymph nodes. Secondly, they will do a CAT scan and flat plate x-rays of my ribs to determine what the "hot spot" is that showed up on my bone scan last week. Sue has offered to drive me. We stop at Bath Hospital to pick up my bone scan and RVG x-rays for my appointment with Dr. Richardson at Dana-Farber on Friday. We arrive at Midcoast Hospital in Brunswick in time for me to check in at registration and update my insurance information. By a stroke of luck, my new Blue Cross insurance card arrived in the mail, just minutes before Sue and I left.

Linda, the CAT lady meets me and takes me down to the scan room. She says they forgot to tell me to bring my bone scans with me today. Fortunately, the scans and reports are out in Sue's car because we had just picked them up! The radiologist wants to line up the bone scan with last week's CAT scan of my chest. He may be able to locate the rib spot on that scan and not have to re-scan my chest area. The radiologist finds the rib with the spot clearly showing in one of the scan's cross sections. He says it looks like a fracture. The radiologist and the technicians confer with Dr. Tom by phone. They decide to do a series of flat plate x-rays to view the spot in more detail.

Meanwhile, Linda lines me up on the CAT scan table for the neck scan. She examines both of my elbow veins for putting in the IV for the iodine injection. Both veins look good, so we choose the left since the right side was used last week. Just after she hits the vein, I hear an "Uh, oh" and some muttering about the "device" not working. Blood is coming out and the vein is either blocked or collapsed. I can feel blood trickling down my arm and of course, I have the good sense not to look at what's happening. I tell Linda to take the device out and try the other arm. She apologizes profusely for having to stick me twice and gets another device. Fortunately, the right vein is in better condition and the device works fine. To save me being stuck a third time, Linda takes a vial of blood for my weekly blood test. Tomorrow, I know I will have two sore arms.

The CAT scans are taken and Linda comes back to say they can't find the nodes on the scan. This may be good news. Dr. Creighton, the radiologist, comes in and asks if I can find the nodes by touch. I locate the one small hard node and both he and Linda palpate it. Dr. Creighton seems very surprised that I found a node this small. He says it is 3 mm. or less in size. He is amazed that my surgeon was able to hit it with a biopsy needle. I tell him that I have one of the best surgeons in the state, Wes English from Bangor.

Linda will try one more scan using a marker on my neck. Since the node seems to move, it is not in the same position lying down as it is standing up. The second scan still does not reveal the nodes. Apparently, the nodes are not showing up, either due to their small size or density. The reports will be sent on to Tom and Dr. Richardson to draw their own conclusions. I am thinking this may be good news. Maybe the nodes have shrunk and my cancer is in remission. But why can I still feel the same hard little node?

Dr. Creighton and Linda talk to me in the hallway following the scans. Both are very interested in my case and Dr. Creighton seems to agree with me that the only way to know about the nodes is to have them removed and biopsied. He discusses the findings on my current and previous October and November CAT scans and mentions the seven tiny questionable spots on my liver and spleen. In November, they decided that the spots were most likely tiny benign cysts and not metastases. I ask if they have changed since November and he says they look the same. I tell Dr. Creighton that "no change" is proof enough for me that the spots are benign. I am not going to worry myself about the little unidentified objects that appear on my x-rays.

Dr. Creighton is aware that I am a Stage 4 cancer patient. He is curious about the bone marrow transplant program and we discuss it. He acknowledges that I have certainly done my homework and understands why I have chosen not to do the transplant. He asks if I have looked into monoclonal antibody treatment. I tell him I was rejected for the HER2 antibody research program because my tumor did not test positive for the antibody.

Before I head into the flat plate x-ray room, Linda hugs me and says she is impressed by my knowledge and positive attitude. She asks me to stop back and keep them up to date. The technician doing the flat plate x-rays arrives and has me put on a gown. She lines me up very carefully and precisely in front of the x-ray machine. She asks me where the tender spot is on my ribs, so she can mark it with a tiny lead pellet. I point to the area and she says, "That's anterior, they told me posterior!" She disappears and returns to tell me that the spot on the bone scan is on the back of the rib, not the front. This is very odd since the tenderness is on the front and side of my rib, not the back! A discussion then ensues with the technician and another radiologist since Dr. Creighton has left for the day. They decide to get several views of the rib, from the front, side and back. I suspect that the radiologists, Tom and Dr. Richardson will have to sort through quite a few x-rays and scans before making any decisions on the lymph nodes and rib situations.

Poor Sue has been sitting in the waiting room for over two hours. Fortunately, she had brought a book with her and said she enjoyed the opportunity to read without interruptions. I feel sorry for taking so much of her time. We head right home because Sue has a meeting tonight. What a long day and frustrating ordeal and worst of all, the scans and x-rays may be inconclusive.

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