06 – Tender Mercies

Perhaps it is a good idea to balance that last difficult chapter with one of brightness and endearment. For it is about this time that I began to feel like the James Stewart character in “It’s a Wonderful Life”, when he discovers that he had made a meaningful difference in people’s lives and that he is loved not only by his family but also by a underappreciated circle of friends.

I have left out from this narrative that over the past few weeks I have daily gotten emails from family and friends. I have started to send my journal out. For some reason I feel the need to make public this experience, to open myself up. This is strange as I view myself as a rather private, guarded person. I think that I want to make something positive of this experience, to make it something that touches people and causes them perhaps to reexamine how fragile are our lives, how deep and perhaps underestimated our relationships.

For the past few weeks people from St. Thomas Acquinas, our parish church, have brought over dinners. One evening a family showed up with a fresh Christmas tree, put it in our stand and helped Tish and Aaron put the lights on (traditionally my job). Tish, who is a school social work program director, disclosed my illness at her weekly staff meeting. Her staff of social workers and an assortment of school principals and teachers also responded with dinners and desserts.

After I knew my diagnosis, I sent out a general message to various lists of people who I deal with regularly: Pearl Moore and staff at the Oncology Nursing Society (ONS) headquarters in Pittsburgh; staff at the International Union Against Cancer (UICC) in Geneva, Switzerland; my Nursing Project Committee with members in Panama, Poland, France, India, and Singapore; colleagues from the International Council of Nurses (ICN) and the International Society of Nurses in Cancer Care (ISNCC); as well as other colleagues in the U.S. and abroad.

Pretty soon I began to receive e-mails from across the globe, people from all faiths and backgrounds who said that they were praying for me. I had also established “ears” in some of the world’s most renowned cancer institutions – the Royal Marsden in London (where much of the work on CamPath and T-PLL had been carried on), M.D. Anderson Cancer Center in Houston, Duke University, and others – all ready (I imagined) to report any new developments related to my rare disease.

But I was amazed and continue to be amazed that I am the focus of so many prayers and prayer chains. The people at work were to begin a daily prayer group for me with a customized “Dennis prayer”. The people from my church, of course, but also the people from the churches of my immediately family, the churches of friends and colleagues who called, the churches of people that I don’t even know.

One of my wife’s sisters drove 180 miles on the day before I was to enter the hospital in order to deliver to me a “prayer cloth” from her church. These prayer cloths had apparently helped in the cures of several other people with cancer. She stayed a couple of hours to visit, than drove 180 miles back.

A friend brought me a rosary that her stepfather had given her to deliver to me. This rosary is from Rome, and carries an ampule of Holy Water. This rosary must have been special to the man that gave it to me, a man who I do not even know. Another colleague sent a bottle of water from the shrine at Lourdes. Another sends me a scapula and yet more holy water.

I cannot begin to count or even estimate the number of people praying for me. Months in the future I will receive e-mails from people that I do not know, saying that they heard about me and have started a prayer chain. My oncologist told me that the literature shows that people who are prayed for live longer. It is on the crest of all of these people’s optimism, prayers, support, and messages of hope that I am able to sustain some semblance of a positive attitude. Left alone with what I know and what I have experienced, I do not think that I could muster anything but a bleak view of my future.

Monday, December 17, perhaps my last independent day for months. I go to my dentist’s appointment in the morning, driving myself in my ¾ ton pickup truck. I have brought for him a copy of an information sheet that I wrote called Everything You Wish You Didn’t Need To Know About T-cell Prolymphocytic Leukemia. He read it while waiting for the analgesic gel to take effect on my gums. Then he said, “What happens if I cry?” I replied that I would probably start crying too (crying comes easily now). He did my fillings and than he did the cleaning himself, the whole thing. Normally the dental hygienists do the cleaning and he inspects. He makes some casts for me to be used for floride treatments at home during my illness, especially my immunosuppressed periods. He says that he will bring them by my house. My dentist gives me a hug before I leave.

I drive across town to Community Hospital, my hospital. I wanted to see people before I start treatment. After my immune system is suppressed even more by the biotherapy, a hospital, which is the repository of resistant super-germs, is a potentially dangerous place for me to be. I will probably not return until I am in remission. I also wanted for people to see me looking relatively healthy.

It is a long walk from the parking garage, through the professional building, to the hospital proper and up to the fourth floor. Our department secretary (and my faithful secretary when I was manager of the department), has printed and stapled copies of my teaching sheet. She has passed them out to the people present and will put the rest in people’s mailboxes. It is a busy day on the unit with a crisis on west wing. But the room is full.

I begin by telling them that one of the ways that I am dealing with this is clinically. This is what I am familiar and comfortable with. This is a rare disease with a little used treatment (we have only used CamPath on one patient). I begin with marker in hand, reviewing on the white board basic facts regarding leukemia, then more specific facts about CLL, and then about T-PLL which is my disease. I review how chemotherapy works in contrast to CamPath, which is a monoclonal antibody, a recombinant DNA material produced in a laboratory. It is manufactured in Germany and was only approved by the FDA in May of 2001. This is a synthetic, antigen-specific antibody that has been developed to recognize and attach to an antigen or protein which is expressed on the surface of leukocytes. In this case it is designed to attach to something called a CD-52 antigen which is present in large numbers on the surface of both B- and T-cells. My killer cells are alerted to this antibody-antigen complex and proceed to attack the cell, leukocytes both good and bad.

I am aware of people coming and going from the classroom. Some had to check on patients, others later told me that they just could not sit there while I talked about my illness. At one point one of the staff gets up and offers me his chair. I assume that he has to return to work but he stays in the room standing. Apparently I looked as if I needed to sit down. I was aware that my hands seemed to be shaking a bit. As I sit down I notice that people are tearful.

I did not want to be emotional myself until I was through with the lecture part. Now I told them how I was feeling subjectively – the nuisance abdominal and chest pain, the insomnia, the loss of appetite and weight. This was the emotional part of the meeting. As I sat and talked a tech who was sitting to the left of me started crying and rested her head on my shoulder. I told them about feeling like Jimmy Stewart and I became a bit tearful. There was really a down feeling in the room. Snacks and cookies had been provided though no one seemed to be in the mood to eat. So I tried to pick the mood up and encouraged people to eat. Other people came in and out of the room. I got and gave more hugs that day than any day previously in my entire life.

The walk back to the garage was even longer. It was dark out now. My day of independence was drawing to a close. But I had accomplished something that I had considered important for me to do. I had always imagined myself as being a person whom people regarded as pleasant to work with, easy-going, willing to pitch in, eager to pass along anything I knew about nursing and cancer. It has always been important to me that colleagues like and respect me. But I was not and am not prepared for the affection in which people seem to hold me, nor for those tender mercies which have been showered upon me.


Comment from Mark
Time September 7, 2011 at 1:35 pm

I have just been diagnosed with T-PLL. I see another oncologist next week. I assume he will want to start CamPath ASAP. Just now starting to tell co-workers, just a few now, but more when I will be out on ‘sick leave’. I am both encouraged and hopeful of my own outcome. Please pray for me…I tell everyone to do that more than anything. I will also pray for you and keep your story in my heart as I go through my treatment and recovery. Yes, recovery because I know that I can do this. I have to be around to spoil my nearly 1 year old grandson and see him have kids!

Comment from admin
Time December 1, 2011 at 2:50 pm

Sorry for the late reply. I have not been checking this site lately. Please feel free to contact me if you have any questions or concerns. beingcancer@att.net or 317-283-1989
Take care, Dennis

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