The Rollercoaster Continues...

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      It worked. Christmas was a happy time. I still had doctor’s visits and blood tests but as soon as I came home I pushed those out of my mind. We made our traditional Christmas Eve turkey dinner and pulled crackers. We opened presents and drank wine. On New Year’s Eve we went into Auckland and watched the fireworks from the Sky Tower. Abby went back to San Francisco at the end of the first week in January and Charlotte started job hunting. Alex went back to work and 2013 began as if 2012 never happened. I wished it hadn’t.

         I will finish my last cycle of velcade at the end of February 2013. After that I will see the doctor and have blood tests less often, as long as they are good. Dr Comfort assured me that the cancer wouldn’t come back in a day. He will monitor my protein level and if it begins to go up, a sign the cancer is progressing, a team of doctors will discuss the best option for me. It may be more drugs, or a last ditch allogeneic transplant. But whatever course I am put on, I am not confident in a second chance. The best prognosis I have seen is still only a few years. From my experience, every time cancer “returns” it is fatal. I know it is only a grace period. I know Dr Doom won’t be expecting me to live much longer.

       So the rollercoaster continues. I am still at the top of the hill looking down, still inching my way towards the bottom. I dedicate this story to all those who have fallen before me. I’ll see you soon. 

THANK YOU FOR YOUR SUPPORT.

 LOOK FOR MY NEW BLOG. WatchingStrandRiver.blogspot.co.nz. 

Making Christmas the Best Ever

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I thought at least when I re-joined the Christmas shoppers this year I would feel connected again. But I don’t. That is the one thing I didn’t anticipate. I thought when I was physically better I would be mentally better as well. But I’m not. I am changed forever. I still feel like I’m an alien observing earth from my spaceship. There are days when I can’t believe this is happening to me. It’s like I see myself across the room and I am someone I don’t want to meet. I can’t seem to engage in casual conversation or take any interest in trivial affairs. I look around at the objects in my home and wonder why I thought it was important to buy any of them. They are just useless things. I think of the people I have been friends with for years. I should call them, but I never pick up the phone. I don’t know what I would say. More than when I was hiding my disease, perhaps now I am truly defeated by it. I want to skype family but I know I won’t be good company. I am glued to the news. I am emotionally involved with the dead and dying and I don’t think I will ever totally walk the earth like I used to. I’ve never felt as completely alone as I do now.

      The only thing I can do for myself and for my family is to pretend everything is all right and put on a positive attitude. This year I am going to make Christmas the best ever. We put up the Christmas tree on December 1^st and decorated it. Many of our tree ornaments were bought in places we visited or stayed over the years. A little mailbox from the inn we stayed at for our first anniversary sits near the top of the tree. A train from Minnesota where we lived once, a San Francisco cable car, a little Shakespeare doll from London, and a beeswax heart from New Zealand reminded me of the journey I had already taken. I sat in the evening and looked at my life through those ornaments and tried to truly appreciate how many happy moments I have had and how long I have been able to avoid THE BIG GIANT FOOT. I knew I should feel genuinely happy that I, like Arj Barker said, was here now, enjoying this moment. So I started buying little presents, Christmas crackers and stocking stuffers. I wrote out Christmas cards and ordered gifts for the overseas relatives. Abby and Charlotte made plans to come home. This time there would be nothing shocking to tell them. They could relax and enjoy themselves. Alex was going to take two weeks’ off. We would all be together for Christmas and it would be wonderful. Although the threat of my disease would always be over me, I promised myself that this holiday I wouldn’t talk about it, dwell on it or fear it. I would live, laugh and love with those who mean the most to me in the world.

No Promise of a New Beginning

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No one knew what I was going through. Most of it was because that’s how I wanted it to be and I do not regret that. But even my family could have no idea of the daily torture I experienced. The torture has lessened but I will never escape it. I am aware every day that I am sick. It is like what I imagine a person goes through who is facing criminal charges but their court case keeps getting delayed. It is a frustrating process when your fate is in someone else’s hands and you cannot move on. But eventually of course there will be an end for them, either freedom or incarceration. I only hope that one day I will get a real stay of execution and a chance at freedom. I have to hope –what else can I do?

      For the first time in my life the New Year holds no promise of a new beginning. I will spend the rest of my life reliant on blood tests to see whether I am holding my own in my battle against plasma cell leukemia. I hate that I have this disease. I hate that I may have done something to put myself in this position. I hate that this will never really be over until I am dead.

Days Away From Christmas Too

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I am writing this exactly two weeks before Christmas 2012. I remember everything about last Christmas as if it happened yesterday. I remember how happy I was to be alive on Christmas Day but how sad I was that the holiday had been all but destroyed because of my diagnosis. I remember lying on that hospital bed, unable to stop crying until they gave me a general anaesthetic so they could take the bone marrow biopsy. I remember telling Abby the bad news, composing the letter to my sister in a Wellington hotel room, crying all the time and preparing the paperwork for my death.

      The year 2012 never happened for me. It was like I was in a giant bubble floating above the world. In the bubble I was this other person, crazy, sad, bald, detached and disappearing. I was an alter ego, a ghost of myself. The whole year was about this body which had suddenly become foreign to me. It was a medical experiment, worked on by strangers while I could do nothing but watch. I didn’t participate in the world in 2012 I lived parallel to it, attached to the earth by the thinnest of wires. I learned first-hand about the underground life of the chronically sick. Going into this world was like stepping through the looking-glass. The clocks seemingly turned but time stood still. Waiting rooms were filled with women in wigs, no one talking above a whisper. Day stays with ten people in chairs and beds, on a variety of drips and medications, everyone in a battle for their lives. In hospital, children suffered while parents comforted them in their arms. Women spent half their year in the same bed surrounded by reminders of home. Men were so thin their age was indeterminable. Older people greeted each other with genuine surprise and delight as if they didn’t know who would make it to the next week. Patients cowered in their rooms while doctors and nurses patrolled the corridors dispensing medication and advice. It was a world I never saw myself a part of, but like Alice I tumbled into it and I couldn’t climb out.

Floating on a River

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The other prominent side effect was fatigue. I would take the thalidomide at night before going to bed as you couldn’t eat for an hour prior to taking the drug. But the next morning at 9am I was sound asleep still. It would take me hours in the morning to get going. Usually by lunchtime I felt like I could take on what was left of the day. Without getting much done, I would be ready for sleep again by midnight.

      To forget my body problems I needed to get into a better space mentally. I went to a spiritualist church service with my best friend. I am not a new age sort of person and it was the first time I ever really opened myself to this experience. After a song, it was time for healing. They made a circle of chairs in the centre of the room and invited those that wanted to be healed to sit there. My friend encouraged me to go but I was already on my feet. I sat in a chair and shut my eyes while my healer put her hands on my back. I felt her rub my back a couple of times then didn’t know what she was up to. I think she must have been putting her hands over my head but since I had my eyes closed I wasn’t sure. I imagined her pulling the cancer cells from my body through my skin and out into the air. Like bubbles rising into steam in a boiling pot of water. Whether it is possible or not, it was a great image. It was about the most relaxing ten minutes I had had in a very long time. A speaker got up and did some readings. She pointed to a woman in the audience and told her what a great healer she was and how much love was emanating from her. I nudged my friend and said “that’s my healer”. I was very proud.  We closed our eyes and during a ten minute meditation the speaker told us a tale about floating down a river. I was extremely relaxed, almost sedate. I loved the image of floating on the river and the feeling of power the healer bestowed on me.        

      I had to find a way through each day with the shadow of a noose hanging over my head. Because there was no cure for my disease, there was only one way for this story to end really. It was just a matter of how long it would take to kill me.