.......................Marcia Reid Marsted........................... . . . . . . About My Hair : A Journey to Recovery

Second Primary

Pat called at 4:30 Sunday afternoon from a conference in Florida about the chemotherapy. Of course, we weren't there. We were out walking on the Nature Conservancy trail. It was a summer-like day in December. Melissa ran a marathon in Sacramento and it was 37 degrees there. Climates were in reverse. My life was in reverse. Pat message said to call back after nine when she would be back from her evening meetings.

"Since it was extra-mural, we'd better get to it quickly. I think we should start on the 14th" (of December - my surgery was Novemeber 15) she said briskly! "This is for real" Jeff told me when he heard her half of the conversation. That conversation was on the sixth. Not much time to get used to this new idea.

We were heading for New York to get me a hairdo which had been held off by my month of in-and-out of the hospital. I called Marilyn. I told her not to bother to schedule time for a color and to get out the sharp scissors. Let's cut it off, if it's going to fall out anyway. Who wants to see huge hunks of long hair on their pillow. 

The short hair didn't look bad, except that my face was pretty skinny and looked more so with nothing to fluff out the edges. Next stop, wig (called a medical prosthesis when bought by a cancer patient) store. Very elegant place, with pictures of movie stars and Styrofoam heads with varying hair colors and styles lining the walls. White marble floors, mirrored walls, Christmas decorations, including a mannequin draped in white lights, and the private consultation booths, discretely mirrored, too. Did we have an appointment? My face fell. What made me think you just walked in and out? [Hadn't I listened when the "Look Good, Feel Better" presentation was going on? Not too closely. I was a volunteer for the Cancer Society. I'd already been through my treatments and after a year I was helping other cancer patients. My first surgery, radiation and chemo were distant history (1988). Finished and not too bad.] 

The attractive, pleasant man at the desk told us in a well-modulated foreign-lilted voice that he thought he could find us a stylist to speak with. Jeff called the insurance company to see if they would help pay for it, at least I remembered that part of the Look Good, Feel Better talk, and I went in and started trying on - wigs - with Edward, very similar to the first man. Very gentle. He asked me questions I didn't know the answers to. He told me when my hair would probably fall out and that it would tingle just before it did! I tried on a wig that was only a little longer than my spikey butch. A little more finished looking and just about my own color. Two more tries; longer, more real hair (and twice as expensive, and not for me). The first one was fine. He showed me where the toupee tape would go to hold it in place when there was no hair. I began to tremble a little. I didn't want Jeff to see. I'd actually need two wigs to alternate so they would last the year of hairlessness I'd be dealing with.

We walked slowly back up Broadway, doing errands and Christmas shopping, like normal people. Be normal. That's my motto. I don't want to give into it. I believe in not bowing. Be strong, tough, and healthy, except for the cancer. I'm always trying to pack too much into a given time period. Susan came for lunch. The most solid food I'd had since the operation, a chicken roll-up and a lemon turkey sandwich. I munched hungrily, but with some trepidation. Not much very big has hit my intestines since the surgery. I've lost six or eight pounds, I guess. Food doesn't appeal particularly, so I don't push it. Protein powder smoothies and Boost interspersed with scrambled eggs and maybe some pasta. I'm afraid of it. I don't want another obstruction to add to my problems. 

We raced home to Connecticut in pouring rain and horrible traffic to take my mother to the "Festival of Trees" at the Atheneum. Jeff realized it was full of Fleet ex-cohorts and hurried off to his office to read the paper. Mom and I wandered around and almost bought a tree, but we were too late, they'd closed the buying booth. Typical! Poor mom.

Monday. Today, Pat would be back in her office, harassed with patients who wanted to see her after an unknown number of days away. I'd call after I went for my first work-out since November 12th. It was a one-on-one meeting with Jill, doing the muscle toning exercises she'd worked up for me. I'd seen people working with her, but I preferred aerobics, spinning or step. The quick in, quick out workouts, sweating to music. Kind of like meditation for me. I didn't really know most of the other exercisers, except to say hello. The fat, or the sick or the un-able did the machines. Now it was me. I managed the fifteen repeats at each stop and felt pretty proud of myself when I finished. Jill told me I'd withstand the chemo better with a toned musculature.

I called the doctor's office when I got home, at around 10. Paula, the nurse, said she'd leave a message. The phone rang. It was Melissa, telling me she didn't want me fly to Florida with my mother after Christmas. A trip planned at this point for January fifth to eighth. Then it rang again, it was Amanda checking to see if Pat had called yet. Next, Tracy or maybe Nicky, from Providian wanted to sell me whatever it was they were selling. Nope. The worst thing about being sick is waiting for the phone to ring. Finally, at two I called the office again to see if I'd missed her during one of my incoming calls. No, just too busy. She'll get to you eventually. Finally, she did. It was about 3:30. She asked me if I wanted to come in to the office. It didn't seem worth it. I could do it over the phone later, when she was less hassled. So we decided to reconnect in the evening. Pat gave me her home number in case she "forgot" to call me. It wasn't that satisfying a call, except that it meant I could go mail the photos and letter to Bernie Toale and do a couple of other errands, and begin to pack. I didn't really know much more than I had on Sunday.

All day I couldn't concentrate. I watched the phone. I looked for dogs on the Internet. Amanda and José want one for Christmas. A rat terrier? A khormforlander? (a cute little dog with an unbearably long name). I waited for the phone to ring. I also looked at camera/handbags for Africa. Amanda and I are signed up to go on January 15th. I bought the trip cancellation insurance for us both. Finally, I couldn't keep away from it any longer, I had to do some net surfing on Uterine/Endometrial cancer. Adenosquamous, the cell-type description of my tumor, is mixed and unusual and can't be treated by the conventional methods. I can't have any more radiation anyway. I had it all in 1988, any more and I'd have radiation sickness to deal with. Hormones don't work on mixed tumors. But there was no real discussion of what to do with the mixed ones, only that they were bad. Mine, at least according to Jeff Cohen, although it was "extra-mural", had gone through the wall of my uterus, there were no visible cells in my abdomen (good), and no spread to other organs (better), - no best. I had sent away for a uterine cancer description from a cancer center in Miami last week, but it still hadn't arrived.

There were no easily discovered descriptions of the chemotherapies or their side effects. In one place it said people usually could go to work. That sounded OK. Pat and I talked again on the phone at 10:30 in New York, where we were spending the night before heading for a two-night mini-fling in Bermuda. I planned the trip when I heard there wasn't going to be the six weeks of play time I thought I'd have before I started the chemo. We discussed the treatment options and the actual treatment. Now, it's for real. Carboplatin is new and has fewer side effects, but isn't proven to be as effective, especially on the more unusual cases, like mine. Cisplatin can damage your heart, liver, and who remembers what else. I think it or the Adriomycin makes you tingle and have mouth sores and maybe that's the one that goes for your heart. One of them also does things to your blood counts (white ones). Does it matter which? Just get some special white-blood-cell growth enhancer. 

Pat will be at another meeting on Monday. So, I'll have to do it with only her protocol to hold me up. Her assistant, Judy, will be acceptable, I guess. I know her. I'll go into the hospital on the 14th in the morning and have the cisplatin and adriomycin between one and four in the afternoon and the anti-nausea drugs at the same time, along with an IV to hydrate me. 

How will I respond? I actually shuddered as I wrote this. There is no reason why I shouldn't be as tough as I always have been. I'm actually healthier, because of all my exercising, than I was when I had the other cancer. Positive attitude. Fighting attidude. Don't let it get you. I can do it. It does seem as though it is smart to do it the first time in the hospital. I'm not a total dope. I am ten years older. I find the hospital relaxing (if I get a private room - maybe even without if it's only for a night - but would Jeff be able to sleep over then?) Am I asking too much of him. He doesn't deal with these things as easily as I do. I guess that's why I get sick.

Bermuda was the perfect antidote to worry and fear. It's a pretty quick trip from New York. (Not quite as quick in winter as in summer. We flew down by way of Baltimore and home by way of Philadelphia, but it was a pleasant flight). We had two pretty tasty breakfasts, both of which I happily ate, a tasty soufflée and an omlette on the second flight. The drive to the hotel was beautiful as usual. The sea is incredibly blue when the sun shines on it and the coral shows up with a purple tint. The island is one of the few places I can think of that hasn't changed in the forty years since we've known it. Amazing when you think about it. The houses are still small and pastel with the stepped white roofs to catch the rainwater into cisterns. The taxis still toot to one another as they ply their clients from airport to hotel. Even the airport, though up-to-date, is calm, with local matrons greeting you and telling you which way to go to find your way out.

We'd been to Horizon's before and knew the room we wanted, in the main house, third floor, lots of windows and no one passing by to look in, a view of rooftops and the sea in the distance. We arrived in time to unpack and have lunch. Even when it is full, it is a very peaceful place. There's no frenetic activity at the desk. It almost seems as though there's nobody there. Festive Christmas decorations with a Teddy Bear theme are everywhere. The dining room is set for a special party with Christmas crackers (a British tradition) and more Teddies. The windows and doors are open to the breezes. A perfect combination, Christmas and warming sun. 

The pool is deserted. The water is freezing, no wonder (it turns out the heater is broken). I wouldn't dare put on a bathing suit anyway, I don't think. Jeff says I look too skinny. That doesn't make it a bad place to sit comfortably and read. Jeff's actually reading a book I suggested: M. Scott Peck's In Search of Stones. Scott Peck lets the human side of himself show, almost to a fault, according to Jeff. I'm reading Close to the Bone: Dealing with Life-Threatening Illness. It's a bit too close to my bones. I need something lighter, I think.

At lunch two or three groups are sitting at the white tables on a terrace overlooking the ocean and the silhouettes of Norfolk (I think) pines. Each table has two bright red hibiscus flowers tucked into the mesh top, and its resident sparrows waiting for a handout. The food is delicious. I sip happily at parsnip, curry soup and fish cakes, and a rum punch, which had a lot of punch. I think I wanted a rum swizzle. The birds tried to steal Jeff's bread when we weren't looking.

We decided to get some exercise by walking down to the beach. The weather and my stomach cooperated pretty well. 

Back to reality Saturday. Another nice flight, or actually, two of them. Bermuda to Philly gave us time to have a pleasant, tasty lunch. Then we had time to do some shopping in the airport before flying out for La Guardia and a half hour hop. Drove to the apartment, saw Amanda and headed home to see the cat and be ready for church Sunday with mom. 

Not to be, with mom, anyway. She didn't feel well so we went by ourselves. I found myself crying almost from the minute of walking in the door of the church.

Back to reality tomorrow morning.

Back to About My Hair: A Journey to Recovery

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