The best laid plans of mice and men, oft go astray. I'm not sure who originally wrote those words, probably Shakespeare or someone equally famous, but they certainly apply to our situation today. In reviewing all of the many tests and procedures we have had, Dr. Till was concerned about mutated chromosomes in my stem cells in the bone marrow. Consulting specialists in this field, they concluded that in addition to small cell and large cell lymphoma, I seem to have hit the trifecta by developing therapy-related myelodysplastic syndrome or MDS. They tested 22 stem cells and 16 of them showed signs of mutation. This is probably the result of prior chemo and/or radition treatments. One other source is environmental. People living within a 100 mile radius of the Hanford Nuclear Reservation have shown an above average rate of MDS occurence. Whatever its origins, its there, and we will have to adjust our treatment schedule accordingly. The first step is to install a PICC intervenous line tomorrow, Tuesday, Sept.14. Then on Wednesday, Dr. Till will take my case history to the Patient Care Conference of the various medical department heads to come up with the best plan. I will most likely start RCHOP Chemo therapy ASAP, either here or back in Walla Walla. The biggest change in treatment is that I am no longer a candidate for an auto or self originated stem cell transplant. We will have to test all of my living siblings and find if any of them is a genetic match and ask if they would be my stem cell donor. Having 9 living siblings does have some benefit. There is a 25% chance that any one of them is a perfect match, so multiplying that by 9 gives me a 225% chance of having a donor, provided their own health condition doesn't exclude them. I will be sending out information to them and see if they would at least be willing to submit a blood sample to be tested. If none of them matches or they are unable to participate, we will have to go through the national donor database and look for a donor. A family member is the most effective and safest transplant option, but a total stranger is also an option. After the consultation on Wednesday, we will probably meet with Dr. Till on Thursday and make final plans. We may have the first RCHOP dose here in Seattle this week and then come home for up to 6 weeks for the remaining RCHOP treatments. That would give us time to test all of my siblings and arrange for the donor to meet us here in Seattle for the actual transplant later this Fall. In addition to my health adventures, Kriss got sideways with her filly and ended up breaking her pelvis in four places. They are hairline fractures that are inoperable, as far as we know. She will see an orthopedic specialist tomorrow for confirmation. Coming home will give her time to recover from her problems and then she could fulfill the caregiver role I will need during transplant recovery. In spite of all these challenges, it is amazing how God continues to work all things together for good, for those who love Him and are called according to His purposes. The scariest change in perspective is that there is a 10 times more rate of death with a donor stem cell transplant vs. a self originated procedure. However, the upside is that there is also a greater chance that a donor stem cell transplant would potentially cure all three of my medical problems, small and large cell lymphoma and MDS. It's like going "all-in" in Texas Hold'em, big risk for big rewards. The interesting thing is that God is like the TV audience that already knows what cards you are holding and who wins and who loses. I can only play the hand that is dealt to me and seek to serve the God who knows the number of our days on this earth. Robin
September 13, 2010; Seattle, WA Beautiful Indian Summer Afternoon, 75 degrees mostly sunny.
After the Exodus from North Dakota to the State of Washington, we were ready to start a new life and seek "Middle Class Respectability" as Henry Higgins bemoaned in MY FAIR LADY. My mother sat us all down and basically said that our past life choices were over and moving out West gave us all a chance to start afresh. I don't know about all the others, but I took her seriously and decided to stop smoking cigarettes at the age of 11, thankfully, and do my best to become a model citizen of the State of Washington. My first day in fifth grade started out well enough, most of the kids were cordial, but when I left the building to go home, two boys pulled a stunt where one of them called me over to look at something he had in his hand, the other one knelt on hands and knees behind me so the first one could push me over and knock me down. It worked perfectly, so much so that it knocked the breath out of me, and I struggled to my feet gasping for breath, crying and hearing them laugh as they ran home. I walked over to the High School which was next door to the Elementary School and told my Mother what had happened and she just said to walk home and that it probably wouldn't happen again, it didn't. I never understood senseless cruelty. Bullies preyed on others in every school, but they were mostly cowards trying to prove something to themselves or others to compensate for some great pain in their lives. One of the boys was Hispanic and the other was Anglo. I never formed any kind of prejudice against any race or group of people. I was fortunate to meet people from all cultures that were endearing and a credit to their family. I would ultimately become friends with both of those boys later in Jr. High School and High School.
Old habits were hard to break, however, and I still found myself making friends with kids who were headed in a negative direction. One boy, in particular, lived with his brothers and their Grandmother across the street from us and we brought out the worst in each other. By the time I was in Jr. High School we were doing things like disrupting the Friday Night Local Movie Theatre audience to such an extent that we were not only thrown out, but banished from returning. Friday nights at the movies was just about the only thing Jr. Highers did that was hip at the time and it was a serious topic of conversation around school for days. My mother, of course, got word of it and she sat me down with the following absolutist language: "You will never go to E's house ever again, You will never meet him anywhere else. You cannot play with him at school or anywhere else. I absolutely forbid you from having anything to do with him ever again." I thought she was the cruelest, meanest, most horrible parent on the planet, and I grieved the loss of a good friend. The bottom line, was that she probably saved my life. E... and his brothers were some of the first kids in town who began to experiment with real drugs. One of them would die of a drug overdose in his 20s. At the time, I thought she was an embarrassment as a parent. When I had my own children, I thanked God for her living example of "tough love" that I would only have to apply a few times with my own four offspring.
On the positive side of the ledger, I began to drift into constructive activities that would ultimately change the direction of my life. I joined Boy Scouts. I didn't have the stability or discipline it took to succeed as a Scout, but I got to see what it took to accomplish real goals in life. In those days, if you could breathe, walk, stand straight, learn the Scout oath and make a Scout salute, you rose in rank to Tenderfoot. I never made it to Second Class. I was more interested in socializing with my friends, than in earning merit badges or learning morse code. Scoutmaster Munson had the patience of Job with us. He took us on campouts and even to Bumping Lake Scout Camp in the Summer, but I was a washout. A friend of mine helped me cut down a live tree at Scout Camp that fell the wrong way and just about wiped out our circle of tents. We were banned from the live amunition rifle range after that stunt and were assigned the Scouts version of KP for the rest of the week. Upon returning home, I noticed I never got reminders of Scout Meetings and they cancelled my subscription to BOYS LIFE. It was probably due to failure to pay dues, but I concluded that it was the final step in drumming undesirables like myself from the Scouting ranks. However, it was a step in the right direction, but I had a long way to go to MCR (Middle Class Respectability).
The second step towards rehabilitation was our participation in the Wapato Community Presbyterian Church. We only lived two blocks from the church and Mom laid down the law and informed us that we would attend Sunday School, Sunday worship, and youth activities during the week. That was fine with me because most of the popular and successful kids in school attended that church and it was a safe place where people had to be accepting and fairly kind to you, at least one day a week. I had been a veteran of Sunday School, Church, (whenever we couldn't sneak out after Sunday School) and Vacation Bible School all of my life. We were semi-pros at Vacation Bible School participation. My mother would drive unknown miles to drop as many of us as possible on unsuspecting small country church volunteers in North Dakota. It was an all day event in those days. Snacks, lunch, snacks, games, crafts and Bible Stories were a good time for us and a better time for my mother. Up to this time, I was just going to church because it was the thing to do, but that would all change in a couple of years. However, it was another very significant weight on the scale of my life that was tipping it toward MCR.
The final influence I will mention at this time is the love and care of several families in Wapato. Our family Doctor, Dr. Gregg of Gregg's Bicycle Store fame in Seattle, was a living example of God's love and grace to us and everyone else in Wapato. He was a profoundly humble Christian man, husband, father and friend. He lived in one of the nicest houses in town, but it was always open to any of us. His wife, Ruth, had the spiritual gift of hospitality and prayer. I learned so much about living humbly and sacrificially from the Gregg's. Next were the Cummings, Ray and Sydsal. Syd was from Norway, so I liked her from the start. They had met, I believe, when Ray was in the military, mostly playing tennis. They were married on the day I was born, June 30, 1951. They are still as much in love to this day, 59 years later, as they were then. They were tennis addicts and like all addictions, you want others to share in the fun. Syd would drive their station wagon to Larsen Park inYakima 5 days a week so we could have tennis lessons. My mother thought tennis was more of a lifetime sport than baseball or football, so she encouraged me to go. Ray and Syd would give special attention to all of us throughout our tennis careers and they taught me the joy of sportsmanship and integrity. They are still good friends and one of their sons, Ted and his family attend our church in College Place.
Finally, I have to share the life changing influence of Dr. Pete Dietrich and his family in my life. Pete was the Principal of Wapato High School when we moved there and his son John was to be my first real friend in 5th grade. They lived on the other side of town from us, so I couldn't just go over to his house all the time, but Pete made sure that I was included in special times they spent together. By the time I was in 7th grade, my father had got a job in Seattle, working for Boeing Aircraft Company, and Pete knew I needed an adult male influence in my life. From the 5th grade on, he would spend extra time coaching me on our baseball team. When Pete and John would go to out of town Wapato football or basketball games, they invited me to go along and always stopped for a treat on the way home. On Saturdays, in the winter, Pete would round up 10 boys our age and open up the 4000 seat capacity Wapato High School gym and let us play basketball without over coaching us or interfering in our learning to play as a team. Pete is still one of the most valued friends that I have. He and his wife Pat live in Walla Walla and both turned 90 this year. They taught me how important it is to love people to whom you have no obligation. They opened their hearts and home to me and I have tried to make them proud of me to this day. Robin
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