The Kreitler Compact
By Peter Gwillim Kreitler
Wednesday, September 27, 2006

What is the Kreitler Compact all about?

This is simply one person’s story about being told he has lymphoma cancer. As a priest of the Episcopal Church since 1970 I have listened to and counseled with many people who have faced the challenge of cancer. Perhaps my story being told may be of value to others as were those stories for me through the years.

The table of contents may be scrolled through to access my experience.  Each day may be clicked on and the thoughts of that specific day shared.  I am hoping that as we progress other stories may be shared so that we all gain a better understanding of this all pervasive illness called cancer.

Peter's writings are in the navigation column to your right.  This week's writing is the last addition to the Kreitler Compact: Week 25.

Items 1 - 7 below are an Overview of a few hectic days in April of 2006.

The Beginning of the Story About Lymphoma Cancer

Table of Contents

1. Over-view of a Few Hectic Days

2. Recent Personal History

3. Personal Story Continued

4. Technology

5. Review

6. Treatment

7. Procedure

1. Over-view of A Few Hectic Days

In residency a young doctor begins to discern the difference between and among people’s perceptions of their own illnesses. Positive attitude, a sense of humor, a great supportive team, and the expertise of the doctor work synergistically to heal the patient. Add to this mix a sense of the transcendent and the power of prayer and a doctor quickly recognizes that healing is more complex than the mere application of a prescribed set of antidotes, medicines or procedures. This collection of wisdom has now become personal.

As a priest of the Episcopal Church I have often relied on the medical community to build confidence in individuals faced with life threatening medical conditions. None is more debilitating psychologically to whole families than hearing the word cancer. I can remember back to 1966 when my dad told his family that he had lung cancer. He had a lung removed at Columbia Presbyterian Hospital in NYC by Dr. Sam Wylie. We laid dad to rest just shy of his 89th birthday last August. He was a remarkable example of one who combined a trust in the medical profession, a deep faith in God, while allowing his family to be present for him during the ups and downs of living with his illness. In 1995 we said goodbye to my mother who died of lymphoma cancer. As she was in the final stages of her life her humor never left her, her love of life never disappeared, and she taught us all how attitude is crucial in confronting the challenges of life. When asked what type of cancer she was dealing with she would remark, Jackie O and I have the same type of lymphoma.

Cancer visited the Kreitler before and now is here once again.

This week I have been diagnosed with mantle cell lymphoma cancer. What I have learned from family, the medical profession, and alternative practitioners will stand me in good stead as I address my own battles.

My compact with my family, friends, acquaintances, and wider audience is that I will do my best to focus on the positive aspects of my experience so that all can benefit. If we can demystify the process just a little, perhaps the collective wisdom will be able to infuse hope in others.

Frankly, it is obvious that everyone has been touched by this disease. Almost to a person a success story has been shared with Katy and me about a family member or friend. This collective story telling emboldens families and can move entire groups of people. Your story is important in building a culture of hope.

2. Recent Personal History

On March 1, 2006 Ash Wednesday I had an umbilical hernia repaired at St. John’s Hospital. This is a routine outpatient procedure with few side effects. Prior to insurance authorization a routine physical is required and my all purpose terrific internist, Dr. Ernie Prudente inquired as to how I was feeling. I spoke of my occasional shortness of breath, a sinus infection, or so I had self diagnosed, and a bit of fatigue.

He noticed and examined the enlarged lymph in my neck, requested that I get a heart stress test, and demanded that I come in after the hernia operation so he could evaluate all of the above.

I complied because he was direct and caring. When the lymph activity had not abated he drew blood and discovered a bit of anemia and a white cell count abnormality. Being prudent by nature and by name he initiated contact with a specialist; yes he began mentioning the word cancer almost immediately, but wanted an oncologist to re-affirm his suspicions. On March 24 the Big C was now a real possibility growing within me.

Like any form of business today one’s rolodex often defines who we are and Dr. Ernie requested I call Dr. Larry Piro of the Angeles Clinic in Santa Monica, an oncologist high on Dr. Prudente's list of referrals. He said he was the best for lymphoma cancer and this is what was emerging as the type with which I was dealing. At 10:00 am the following Monday March 27 Dr. Piro confirmed he suspected lymphoma but wanted a couple of biopsies to be sure.

He said he wanted Dr. Orloff at St. Johns to do a bone marrow biopsy and whomever for a lymph biopsy. I said that Dr. Prudente had suggested Dr. Robert Andrews. I have learned through the years that water seeks its own level and indeed many of us are known by the company we keep. I deeply respect the judgment and expertise of Dr. Ernie so it was a logical step to trust his recommendation.

I call this the triangle theory of relationships. If I like Ernie and Ernie likes me it is logical that I will like the 3rd person he brings into the triangle; i.e. Dr’s Piro and Andrews. He was right on both counts. How we build a strong team is the triangle theory going into motion and as Buckminster Fuller taught us, the strongest unit is the circle made out of triangles; i.e. His geodesic dome. Wholeness derives from putting strong and good teams together. I was developing confidence in others simultaneous to feeling sadness about what might lie ahead.

At this point it began to be clear that cancer was now to be a real part of my life for the foreseeable future ant that The Kreitler Team was going to be built and would be the only way I was going to deal with the challenge effectively. A team working cooperatively will be required to solve our increasingly difficult personal and global challenges, and perhaps what I was now to experience could become a metaphor for life in the macrocosm.

Here I was moving into my 64 year with relative confidence that I could manage the type II diabetes and continue to contribute to making a better world for my children and grandchildren. Teamwork has been essential in building Earth Talk Today and having a strong positive co-host like Alexandra Paul has been invaluable. Our environmental television talk show requires about 15 people to produce, but I had also come to rely primarily on my own initiative and strength to move forward in life. Now a team was going to be required and the doctors, family and friends form the triangle of support that will allow me to address cancer with confidence. I can’t do it alone, I won’t do it alone, and I will allow the positive messages to inform my being on a daily basis.

Frankly, this is the theme of these writings and the beginnings of my building a framework for success. Facing cancer with confidence is the backbone of The Kreitler Compact.


3. The Personal Story Continued

At 10:00 am on March 27th, Dr. Piro believed it was necessary for a bone marrow biopsy and yet Dr. Orloff had no openings until three days later. Dr. Piro contacted the Dr. directly and at 11:15 on the same day Katy and I walked into outpatient surgery at St. John’s Hospital. The first person we saw was long time friend Toni Gundershaug RN. That was comforting to say the least. Blood was quickly taken and I was positioned left side down on an operating table with Dr. Orloff administering a local anesthesia. Toni held the cold compresses to my head as 3 inches of my bone marrow was extracted. Not a walk in the park and frankly many folks are knocked out for this simple, but painful procedure. I was praised for my stoic demeanor and ability to withstand pain. Heck this was easy compared to another little procedure a few years ago.

On the wall of the operating room is the pain chart illustrating smiling faces from pain level 1-2, grimacing faces at 3-5, really sad at levels 6-8 and crying at 9-10. I assured the three person operating team that I knew what 9-10 were like from a prostate biopsy, so anything below that was acceptable. Frankly, I passed level ten on that day and simply passed out so I may have hit 15. After the biopsy and a bit of recovery we ambled on over to the head of head and neck surgery for a consultation with Dr. Robert Andrews. A lymph removal was scheduled which was accomplished without incident on March 30th. Once again this procedure can be accomplished with a local anesthesia. I have learned it is less expensive and easier on one’s system to accept the doctor recommendations; and both times a simple few shots in the hip and neck did the trick.

Quarter-size lymph was removed from my neck. The biopsy was to be the determining procedure that would ‘seal the deal.’ Yes, the bone marrow biopsy and the lymph biopsy both indicated that mantle cell lymphoma was in my marrow and throughout my lymph system.

4. Technology Time

In between and concurrent with these invasive procedures I had a chance to lie down and be sent back a forth in a big fancy camera that took pictures of my inner landscape from my neck to my groin. These C T and PET scans provide a benchmark for involvement. Establishing a baseline of lymph activity enables Dr. Piro to assess whether my chemo therapy is working or not. Comfortable and definitive this high tech equipment is recognized as an ingredient in the process of getting me well. Katy watched the procedure and sure enough it is clear that my lymph node system is being compromised by cancer from my neck, throat, chest, abdomen and down into the groin.

I now have a baseline to work from. In two months the same scans will determine if all is working, if all is well, or if we need to go to plan B.

5. Review

Primary question everyone wants to know: What were the signs Peter? I have tried to ask myself; what indicator lights came on when and where in my body?

Shortness of breath was noticed a year ago and of all places at an ecological reserve in Mexico where Katy and I were celebrating our 20th anniversary. I had been trying to windsurf and became so exhausted that I had to be rescued. I attributed this to elevated blood sugar and thought nothing more of the incident until 10 months later when I began to feel shortness of breath going up stairs which I attributed to being out of shape. Another indicator was the swelling of the lymph’s in the neck which I attributed, wrongly of course, to a sinus infection drain. Granted these self diagnostic attempts were not that far removed from reality, but most likely the cancer had begun a foothold and I was not being debilitated to the point of dysfunction.

However, there was a warning light that was flashing and yet I made no connection to cancer at all. I was not sleeping and for the past 2 months I was sleeping in blocks of 1, 1 ½ or 2 hours. Anything longer was a rarity. Therefore, bedtime at 10 was followed by a visit to the bathroom at 12, 2, 4 and 6, at a minimum.

Not only is this a sure indication that the days were long, especially when attempting to accomplish what I have learned to expect of myself, but what ever I did to remedy the situation proved futile.
Once again I based my dilemma on the logical explanation readily available; that is, I had an enlarged prostate and frequent trips to the john in the middle of the night was to be expected. My guess now is that there were and are other factors contributing to this; such as lymph activity near the bladder and prostrate.
My hope is that the treatments will reduce the activity and that once again I will be treated to the blessings of sound sleep.

In retrospect, my own sensitivity to my body, brought on 15 years ago with the onset of type II diabetes, may have masked the real story of what was happening. Hindsight is never of great value, so let’s move on with the process ahead, and a bit of reflection on what others experience when a friend or family member is suffering.

6.  Treatment

Initially, chemo-therapy is the preferred treatment for mantle cell lymphoma. I begin April 5th, 2006 with a 5 hour intravenous interlude. This is followed by two days of treatments less intense and less timely. I guess a few hours of forced reading and relaxation never hurt anyone.
I have found that the needle works better for me through the veins in my hands rather than in the fold of my arm, and this quiet time can be used to good advantage. The downside at this point is the unknown. The specifics will be shared as experienced.
My body is different than yours or anyone else’s so generalizations about effect is a pointless exercise. The range of projected reaction is complex, but the doctor is optimistic that I will not lose all of my hair. Actually, I have more to lose on my face than my head.

I will repeat the process 28 days later. This 3 day interlude followed by 4 weeks of recuperation is scheduled to last 8 months. As I mentioned, at the end of two rounds another set of scans will be taken to determine efficacy of the particular drug cocktail I am taking. If it works it continues. If it is not shrinking the cancer then plan B is put into action and I am not telling what Plan B is at this time.

7. Procedure

I will write about what transpires over the next 8 months.