April 29 is a new date on my calendar of anniversaries. Last year it fell on a Friday, this year it leaps ahead to Sunday. I had returned home from work on April 27 to find a phone message asking me to call my doctor's office. When I called on Thursday morning the receptionist said that she needed to make me an appointment to see Charles, my doctor, about the results that had come back from my tests. She said he was busy and it would have to be sometime next week. Then she sounded a bit surprised and said, "Oh, he has already booked you in for tomorrow morning at 9:00 am. Can you make it?" At that moment I realized that the results must not be good.
The next morning my longtime neighbour, friend and general practitioner had the hard task of telling me that I had multiple myeloma. He did not know much more than that. There would have to be more tests. He was referring me on to the best hematologists in the region. He said that treatments had been changing so fast that he did not know what I might expect.
Those were days lived in a state of shock, disbelief and numbness. Since I did not have any symptoms of the disease it all seemed unreal. We looked online to learn about multiple myeloma but it quickly became obvious that, with the range of symptoms and stages, we needed guidance from specialists. So we waited for a phone call with word of an appointment. There was no point in telling family, friends and others about the diagnosis until we knew more. For two weeks we waited until we met with the doctors at the Providence Hematology department at St. Paul's Hospital. It was a long wait, with a mix of sadness and shock all lived in the glow of two new grandchildren who were then just a few days old.
Now my rookie year with multiple myeloma and amyloidosis is over. It is no longer a shock. I don't wake everyday with anxiety. Cancer is part of who I am. I am more at ease as a patient and am learning to be a full partner in my care. I try to keep educated about my diseases and their treatments without becoming compulsive about it. This year the treatments for the diseases have been the big hurdles. Five months away from work for a stem cell transplant made the diagnosis seem very real for all of us. Then came the disappointment of having an allergic reaction to Revlimid and missing Holy Week. The first year has not been good in terms of finding a treatment that will work to slow down the progression of the diseases. Still, between the steroids, the transplant and the month on Revlimid we have managed to keep the free light chain count below the number that it was at when I was first diagnosed. Now we hope to find a treatment that will level that number off at a low level for awhile (perhaps even for a good long while).
So I am entering the second year of my new life on the other side of a cancer diagnosis feeling some reasonable hope that the year ahead will be less dramatic. There is nothing like the stem cell transplant on the horizon. I still am diagnosed with early stage multiple myeloma and amyloidosis. This means that, so far, no symptoms of the diseases have shown up - no anemia with attendant illnesses and infections, no bone pain or bone tumours or bone breaks, no sign of organs under stress or in danger of failure. These are symptoms that would move my diagnosis from early stage to second stage. At the moment my symptoms have all come as side effects of treatments for the diseases. On May 10 I begin receiving weekly injections of Bortezomib (Velcade). We will see if my body tolerates this chemotherapy well and if it is effective in lowering my free light chain count. Perhaps it will be third time, third treatment lucky and I will be able to live a fairly normal life for the next year and more. That is what I am hoping for - a year at a time to enjoy being alive and relatively healthy and to receive the gift of days with family, friends, colleagues and congregation.
In the meantime, I am enjoying one surprising gift of the past year. My hair has grown back with waves - not quite curls - but it is definitely wavy. I was told that it is not uncommon for people who lose their hair because of chemotherapy to find that it grows back differently. I am not sure that I would advise that those with straight hair go to the extremes of having a stem cell transplant in order to gain some waves. But it is one small gift out of a year that had its fill of ache. Last Saturday I went for my first hair cut in a year. It was a good way to mark this anniversary on the other side of the diagnosis. My hair is telling me that things are back to normal - the new normal.
Thanks to all of you who visit this blog and send your love and care my way. It means a lot to me. I hope to see you and hear from you in the year and years ahead. And I hope that these postings about multiple myeloma and amyloidosis become somewhat mundane for awhile. Less drama is my plan. Let's hope that my body and the Bortezomib concur.