becoming a patient

Well, this week has not gone as planned. The mysterious fevers that have recurred on and off recurred again on Tuesday night. The medical team responsible for the stem cell transplant wisely decided not to move forward with chemotherapy on Wednesday. Instead, it has been postponed for one week and is now scheduled for next Wednesday, August 31 with the stem cell transplant set for Thursday, September 1. In the meantime, we have gone on a search to see if it is possible to determine the source of the fever. The good news is that the fever hasn't returned again since Tuesday. The important work is to be absolutely sure that it is not being caused by a bacterial infection as this would leave me open to a serious infection after the chemotherapy destroys my immune system. It may be the lingering effects of a viral infection, which would be much less problematic. So, I have spent three long days at the hospital on Tuesday, Wednesday and Thursday. Most of the time has been spent waiting for tests. On Tuesday I had a Hickman line inserted into my chest. It is a nifty three way portal which means that I don't need to have an IV inserted into my arm whenever I need to have a blood test or receive an infusion of blood or antibiotic or fluid. The line is to remain in place for the next month or so. On Thursday I had a fascinating test in which some of my blood was removed, the white cells were spun out and and irradiated before being returned to me. Later in the day a gamma camera took pictures of my body to see if there may be an infection somewhere in my body that the white cells move to. I find out the results later today. In the meantime one of my multiple blood cultures came back as positive for infection. While this may be a false positive the medical team is treating me with antibiotics to be doubly sure. This means daily trips to the hospital right through to Wednesday's scheduled chemotherapy. Fortunately I am feeling quite well right now and so am able to drive myself to and from the city.

I am also becoming acquainted with the Bone Marrow Transplant (BMT) daycare unit on Centennial Pavilion 6th floor. I felt like a raw rookie at first but now know how to check myself in, get my chart, find a room and get to the kitchen for snacks, etc. The nurses and doctors are friendly and upbeat, interested in each patient and very caring. Over the next few weeks I expect to become very familiar with the staff and patients on CP6.

At first it was very frustrating to not be able to move ahead with the chemotherapy on Wednesday. After preparing myself for the treatment regimen it was disappointing to postpone things. The long days of mostly waiting were also a bit of a trial. Hanging around the hospital with three or four hour breaks between tests or procedures on beautiful August days is not my first choice of activity. After awhile, however, I reminded myself that getting well is my full-time work this fall. Not to mention that I received a number of tests in very short order when others surely have to wait weeks and months to have the same tests that I was given within a day. My identity these days is "patient". I remind myself that it is from the Latin word meaning "to suffer". It has come to mean (according to the Merriam-Websters Dictionary) one who "bears complaints or trials calmly or without complaint". I don't feel that I have suffered much so far. Some fevers, a summer living with the side effects of steroids and now waiting for my body to be ready to handle the effects of a large dose of chemotherapy. My patience hasn't really been tried. I hope that I am able to bear the complaints and trials of the coming days calmly and without complaint. We'll see.

I wonder what it would be like to imagine a congregation as a patient, as a sufferer - a people who bear complaints and trials calmly or without complaint. There has been much talk of seeking "healthy congregations". I get this. Nobody is in favour of dysfunctional congregations which have many symptoms of dis-ease. Yet we do gather under a cross, sign of the suffering one who bore suffering without complaint (at least in Luke's and John's versions of the gospel). I wonder about the powerful witness that is made when a people is patient in the face of ache - patient not because the people have given up in despair but patient because the people have placed their ultimate trust in the God who heals and redeems all suffering. I wonder about the balance between holy patience and holy impatience. I expect that we live in a culture that tends to favour the quick fix and fast service, in which customers, drivers and voters are less inclined to develop the virtue of patience. I suspect that this cultural impatience makes its way into the church, where congregations are tempted to imagine that a new program, a new building and/or a new minister will make things better quickly. In a world of much suffering learning to be a patient people may be a central calling of the church in the days ahead.

It has been interesting to watch the reaction to Jack Layton's death from cancer this week. I resonated with an article in the Globe and Mail that wonders about the language we typically use to speak about living with cancer - Did Jack Layton lose a fight or die of cancer? I want to think some more about this. I certainly don't feel like I am in a battle with cancer or that it is "invading" my body. It is my own body that has a broken DNA sequence and so is producing broken cells. It doesn't feel like I am being courageous in dealing with this new reality. It feels more like I am focusing energy and time to this new challenge in the same way that I focused energy and time into raising our young children in the eighties and nineties. You just deal with the matter at hand. In this case, it is the reality that a part of my complex body is not working properly and won't for the rest of my life.

By the way, the Globe article led me to an interesting writer at the Guardian who has multiple myeloma - Mike Marqusee

We had some family fun last week, preparing ourselves for the the loss of body hair that will be one of the side effects of the upcoming chemotherapy. We sat outside on a lovely summer evening and sheared my head. I haven't had a buzz cut since elementary school. Once everyone got over the shock they agreed that it looks pretty good. Perhaps they were just being kind. I am getting used to it. One more step in the journey. One more reminder that my identity now includes "cancer patient". The loss of hair, the signs of chemotherapy - these are all powerful symbols in our society because cancer, itself, is so powerfully symbolic. Finding oneself among those who have moved across the cancer border means making sense of life in a society that lives in fear of the very diagnosis that one has received. I am just beginning to relocate myself in this new place and am surprised that it is less terrifying and more life giving than I would have guessed.

Thanks again to all who continue to email notes of care and concern not to mention those who stop by this site to catch up on my journey and to offer prayers for me and others who strive for patience in the face of all manner of suffering.