America has a contract with its citizens. The constitution, in an attempt to establish a ‘more perfect union’, attempts to establish justice, promote  domestic tranquility, provide for our common defense and promote the general welfare. These steps are a proposed framework to provide for ourselves and our progeny these goals. The bill of rights addresses the specific goals to be pursued including freedoms of religion, speech, assembly and redress of grievances.

The mechanism for executing/adjudicating these contracted values are government with its judicial, legislative and executives branches

Community standards/values are a moving target: who is a citizen, slavery, the function/nature of physical law/relationships and even of the nature of society. Science/knowledge constantly alters our understanding of people, the universe, and the origins of behaviors. Examples include evolution/our relationship to other creatures, our ideas about a sun versus an earth centric universe, the chemical determination of behaviors like mental illness/homosexuality/addiction, the nature of stem cells, invitro fertilization and the general role of neurochemicals on human behavior. The view of these ‘community values havc changed over time.

If one attempts to find rational compromises with one who bases his arguments on ‘moral values’, you quickly reach an impass. They base arguments on books such as the Bible.  the Koran or other sacred texts,  implying a  legitimacy they do not totally possess ( they contain conflicting narratives, are scientifically inacurate and historically flawed.).Likewise, ‘teachers/scholars’ who possess the unique ability to interpret these or the moral code , have unopposable  positions which cannot be rationally argued. Since their fallback position does not necessarily rest on rational exchange of ideas/exchange. These tombs and guides may transmit truths, and useful guidence for behavior, but they suffer from the inability of these tenets to be discussed or rationally challenged in the public forum as a basis for social behavior. That is the problem with absolute truths as proclaimed by individuals who hold special insight into values, especially of ones not drawn from the individual’s intellectual examination of the unique situations. You can believe whatever you wish. But if you wish to make that view part of public policy, be prepared to defend it rationally, instead of responding ‘just because’ it has been revealed to special religious  seers , contained in religious texts or are part of the community narrative.

Our society must make decisions on social justice an rational discourse which is based on a constitution which declares our intentions. We  must protect the unique community values of individual groups. On the other hand, unique beliefs based on should not become the ruling morality of our society with a rational discourse which provides for the rights and freedoms of all individual citizens.

In addition I feel our society must guard the national resource of intelligence and creativity. Key to these are educational opportunity , and the capacity of individuals to create/succeed. Although capitalism tends to promote materialism, it is the best system to insure the growth of national economy. We must provide for mediocre brains, not for the obvious geniuses who get into ivy  league schools because of SAT scores and grades. They often are the leaders and creators in our society: more CEO’s of Fortune 500 Companies are high school athletes than are members of The National Honor Society.

One of the good (because I have time to reflect) and the bad (I cannot do many thinks I used to do) , produces musing about many topics. Amongst these is the origin of morality, and how an individual approaches correct behavior, defines it and lives it.

There are many prescriptions righteous living. The bible is the definite coda for fundamentalist christians. The Koran for Muslims. The words of Buddha for Buddhists. The tablets of Maroni for the Mormans. In addition there are no shortage of leaders who have either “unique insight” or hear the “word  of God” that the rest of us are not privy to. These formed cadres of followers. These leaders were often the only educated individuals in their societies, and were important for the maintenance of the society/preservation of its culture. Now many are literate and find themselves at odds with the interpretations of these spiritual leaders.

In addition they demand rigid adherence to the dogma, they have promulgated. In many ways I believe that atheists are the most moral of us mortals. They must confront each moral dilemma,  individual and situation anew. They rely on no one to tell them what do do. No holy writ dictates their behavior. They must weigh, think and decide what is the moral behavior. This is the price of freedom, and the reward of being able to think/decide. At this stage I prefer to trust my judgement. I will certainly listen to wise men/advise, but I will/must decide what is correct behavior. I will consider the rights of others, the circumstances and our current state of understanding/knowledge of the world.

Certainly my journey has changed the meaning of thanksgiving. The weather is cold and damp, my GVH is still acting up, I am still on prednisone, my appetite is hit and miss, my hip is healing but still hurts and I am still a puny 152 pound weakling.

Nonetheless, the view from where I sit is stunning.The lake is an angry grey, the clouds black and the Cascades are covered in an early blanket of snow (thank you El Nino).My friends continue to buoy up my spirits/encourage me. Their letters and conversations carry me over rough spots. My family is my source of humor, love and pride. I want to share in their successes and growth. Colleen is always there, whatever my need and despite my unreasonable fears. I am thankful for who sits at my immediate and extended table.

May all your desires and wishes be fulfilled. Thank you for being part of my life. And be thankful for all the gifts we have been blessed with.

The photophoresis procedures are going well. It takes three hours and is not too tiring. I begin two treatments every two weeks for the next six months next week. The real question is if I can wean my steroid dose.

I am thankful for my new endocrinologist. He started me on metformin (for diabetes), and gave me an daily injectible drug for my bone loss. I hope these changes will help my strength.

I did not realize how sick I was during my last hospitalization. I knew the low blood pressure, the large amount of fluids I required and the problems they had starting IV’s. A visiting doctor from Belgium came to visit me. He has been very kind and brought be articles etc. He told me the other day that they discussed intubating me on that day (putting a breathing tube down my throat). He also said my PH was 7.12 (normal 7.4 and with 7.05 being the point of no return). I do not recall much of the first few days.

I have almost been there….death is much more real to me.I must be like a street rat- hard to kill.

I did my Physical Therapy and within 4 weeks was walking without support. Unfortunately, the operation left me with a right leg shorter than the left (the left was operated on). As a result my gait was characterized by swinging my left foot out as I strode so my toe would not drag. A heel lift was prescribed and helped , except my left knee began to ache due to the unnatural stress of the gait. I got stronger and  was able to ride the stationary bike 50 minutes and walk on the treadmill for 15 minutes and without pain !!! The psychological lift of exercising cannot be underestimated. The Magnusson  Health Club is  a half a mile away, located in an old hanger building at the closed Naval Air Station. They have done a beautiful job outfitting the club, and the staff is friendly/supportive. Exercising while looking out on the lake had become my favorite part of the day.

I thought I was on my way to recovery, again. One evening five and a half weeks after the operation, I began vomiting uncontrollably. I then developed the lower GI’s. Over the next two hours I controlled my symptoms enough to keep myself clean. Colleen tried to help, but there was no interrupting this train. I tried to hold out. Finally, I felt as if I had been an interrogated prisoner  who had been tortured for a year. I broke. My spirit left me, as did my ability/desire to control my bodily functions. I laid in my bed for four hours as Colleen tried to help. In the early am the Medics were called. I tried to get out of bed and fell, nearly sending both Colleen and I to the ortho ward. The medics found me with a BP of 50, and quite ill. They tried 8 IV’s, including 3 tried in my neck. Finally, they got one in and transported me, sirens a blazing, to UW. In the ER they tried more IV’s and failed, ultimately placing a line in my right groin. They also supported my blood pressure  with dopamine and levophed. Ultimately, they gave me 12 liters of fluid within the next twelve hours. I was pretty sick.

Bottom line of 15 days in the hospital with no definitive diagnosis. The biopsy of my colon showed mild graft versus host disease, but no infection was documented. I did respond to higher doses of steroids, stopping the diarrhea, improving my appetite and stabilizing my symptoms. I also had to learn to walk again. I could not stand for 4 days, and needed rehab to reteach me to walk. I left the hospital at 50% of where I had been pre set back. My muscles are very weak, and I needed a cane to get around.

While in the hospital, they placed another Hickman Catheter. It has two nozzles outside the body, a tube dives into a tunnel under the chest skin, and the tube ends in a large vein inside the chest. This facilitates  drawing blood and giving meds. I also agreed to participate in a study using photo-pheresis. During this procedure blood is drawn out of one port, the blood centrifuged, the cells separated, a drug given and the Tcells thus isolated exposed to Ultra Violet light. This process kills/disables the Tcells which are responsible for graft versus host disease (GVH). This may allow me to lower my prednisone dose, control the GVH,  and minimize the many side effects steroids have/continue to produce. I had the treatment at SCCA the past two days, and its relatively simple, not painful and takes 3 hours (it is a lot like dialysis).

I have a better appetite, am gaining weight, am walking but need a cane for stairs, riding stationary for 35 minutes and using a treadmill for 10 minutes. Am also working with PT and getting stronger. I still have troubles with getting up into the car or climbing any hills. But I am renewed.

I do not think I can come back again from this level of illness should another similar event occur. I might have given up this time except for my family who lifted my spirits by my bookstraps, and this process is amplified by my friends,  their prayers, good karma and good wishes. Thank you all for the help. Life is good…but health is better.

Medically, I have been doing fairly well. The lungs are stable, but the bronchiectasis still causes me to cough up a moderate amount of disgusting phlegm daily. I have been on two courses of inhaled antibiotics since January (a drug delivery developed for kids with Cystic Fibrosis who have chronic lung infections because they cannot mobilize the mucus from their lungs). My graft versus host disease has been fairly quiet with the skin showing no signs of redness/thickening. The gut is pretty stable but appetite, weight and diarrhea remain problems. Termination of sirolimus (an experimental medication started in Jan) has  been stopped: it caused diabetes, swelling of my feet and hands which presists and loss of appetite. The appetite is much better off it, and I have gained 13 pounds to 154 over the past month.

My main problem has been my hip. Whereas previously I was able to walk slowly/unassisted and ride a stationary bike, for the past 8 weeks I have needed crutches, had lots of resting pain and have done no rehab/exercise. An x-ray showed further deterioration of the femur, and total hip replacement is scheduled for August first. They have concerns that I am still on immunosupressives/steroids which impair healing and increase risk of infection. They also worry about my prior history of clots/pulmonary emboli, lung compromise, diabetes and having no ability to produce stress hormones ( caused by two years of steroids).

I have seen a whole host of doctors in the past two weeks: my oncologist, the lung specialists, the orthopedists, the antiocoagulation pharmacologist,  the oncologist, the GVH team, an endocrinologist, a dentist, anesthesia and the general medicine team. I worry that no one person has the whole picture….I guess that is up to me. I will be happy to have the pain diminished. Will spend 2-3 days at UW, and should  be back to almost normal in 6-8 weeks. Looking forward to riding a bike and skiing (no moguls or double diamonds),

Am also anxious to begin a new life and redefine who I have become. I hope the GVH quiets down, as it often does two years after transplant. I need to work on muscle strength, weight gain, diabetes adjustment (start on oral meds after surg) and adjust my meds to better treat my osteoporosis (another gift from diabetes, along with muscle weakness and diabetes).

Thank you all for the birthday wishes and support. Looking forward to visiting and taking a walk with each of you. Love, N

I understand why you did it e.g.. took steroids. You were the product of a very modest upbringing, and found a release in athletics. In addition to being genetically gifted, you worked assiduously  to hone your skills. This lead you to recognition, and ultimately to Europe where you became an elite cyclist. Rising to the top of the podium, you proved to be the best cyclist in the world. This was who you became, and it defined you. Champion, able to push through pain/challenges, indestructible and an American Hero !!!! A dream come true.

All of this changed with your development of testicular cancer. It was so unbelievably unfair. You and your doctors were able to utilize your determination, intelligence and planning to achieve a cure. There were times when I am sure you were fearful, even times when you wished for the peace of termination. The hours spent vomiting, so weak that you could not get out of bed and the fear of death. Trying those first few rides must have been mentally some of the highest and lowest points of your life. Just to be on a wonderous mechanical device, and out of your room, recalled the joy of cycling. But there also existed the fear of losing who you were, a champion and member of an elite fraternity of world class cyclists.

Fortunately, you beat cancer. And you developed a plan, Chemo taught you about pain, determination and ownership of your future. Through planning, incredible hard work and talent you were able to ascend again to the top of the cycling world. It is more than an incredible story, and like the cancer itself inexplicable.

I was a practicing cardiologist when my diagnosis of CLL was made. Many people called me ‘the iron man’ for  being able to work 80 hour weeks, and being able to get up in the middle of the nite, work 48 hours straight and then run 45 miles a week. I got into biking after 18 years of running, and never looked back. After my first chemo, during which I did not miss any work, I felt good: skiing, biking 100 plus miles a week , and enjoying the family, the collegiality of my partners, my fellow doctors and my patients. I felt valuable. After my second chemo round 3 years later, I had to cut back on work. I still was able to be active but at 75% of my old energy. I was reluctantly forced to retire 5 years ago at 58. ? At the top of my game ?

Three months after my last chemo, I underwent a bone marrow transplant. Short synopsis of the past 22 months include 6 hospitalizations,45 pound weight loss, myopathy, pneumonia, fractured hip, ischemic necrosis of the hip, GVH, kidney stones, neuropathy and fatigue. I had to redefine who I am, because I could no longer be who I wanted to be, strived to be for so long. I cannot walk well because of the hip, but when I feel well I use the stationary bicycle. I have spent days unable to bet off the couch, and have hoped, at times, to have this all ended. I told my doctors I would do anything (almost), take any medications or do any routine that would bring my old quality of life back. I understand why you may have used EPO, HGH or anabilic steroids. Many other ( ?most cycling teams did). You just wanted to be who you are. You were lucky, and became who you are now. I do not begrudge you your path.

You are an incredible inspiration, an I have a signed picture of you on tour on my wall. It is not coming down.

I reflected on this after attending a funeral mass for a patient who died at 93. He was a retired pediatrician, my patient since 1982 and a wonderful guy. He specified that the mass should be in latin, with Gregorian Chants, no eulogy, incense and instructions that we must be practicing/attending weekly Catholics free from mortal sins in order to receive communion. The sermon contained no reference to this remarkable man’s life: he was a pioneer physician, a tireless worker for the Boy’s Club, a master carver, former college boxer and patriarch of a large wonderful family.

I felt as if I were observing a Renaissance musical piece performed on the period instruments or viewing beautiful but dimensionally challenged Sienese paintings from the 15th century. The world, its ideas/insights, our needs and how we communicate verbally, visually and evolutionarily have changed. I imagine that the service was even more foreign to me than it was to the non-catholics who expected no different based on prior experience with Catholic services.

I cannot imagine the mentally which prefers this distant experience, which seems to put barriers between individuals. Perhaps this explains the exodus from the church, its defensiveness, its resistance to change, its reluctance to accept responsibility for abuse, their intolerance of women/gays/family planning etc. Please do not bury me in sadness, with black vestments, but laugh and celebrate the completion of a wonderful journey.

My days start early. Since the new drug causes diabetes, I stick my fingers four times a day to check the sugar content of the blood. I then take my morning back exercises and arm training for my bone loss. Next I inhale my antibiotic for 20 minutes through an aerosol pump, and seal off the bathroom so no one gets exposed to the antisbiotic which hangs in the bathroom for an hour. Pills come next, at least the first set which are to be taken with food. Claritin for sinus, tylenol for the hip, tacrolimus, sirollimus, azithromycin for lungs, sulfa for fungal protection, acyclovir for viral protection, Vitamin D, calcium, multivitamins with iron, prednisone, testosterone patch, beclamethasone steroid for the gut, Entocort for the gut, omeprazole for acid and albuterol and fluconisone inhalers. I get the pills down with apple sause or yogurt.

I then prepare breakfast of coffee, OJ, white toast, toast and eggs. I have to avoid fatty foods, raw veggies and spices because of the gut. Red meat which is lean seems ok, but fish is too oily. Since my blood sugar is high, I should use fresh veggies and unrefined rice bread, but they go right through me. I still get full easily and vomit 1-2 a week till I get the offending food out. Food tastes moderately unpleasant, but despite getting full fast I need the calories. I eat totally unlike I have eaten for my prior 57 years of life.

The new combo of meds seem to be working, and I end up taking then four times a day. My sugar is high but I am lessening my steroid dose. The sirolimus has caused swelling or edema of the top of my hands and my left m0re than my right hand and arm. It has also raised my cholesterol so I am on Lipitor. My sense of well being has returned, and mentally I am able to compute better.

I am off the crutches, although have moderate pain in the left hip which has the ischemic necrosis. Stairs are taken one at a time and walking up the driveway goes very slowly. I have been able to ride the stationary bike at Magnussen Health Clusb which opened 9 houses away from us. If I push too much it will be sore, but have been riding 65-75 minutes for three days on, with one day of recovery. On short days I do some leg weights, and I always do a 10 minute sauna and shower. The Seattle Times awaits me when I get home, and I do the crossword puzzle. On Fri, Sat and Sunday I also enjoy the NY TImes. Have been keeping busy with 3 appointments this Monday and five on Tues. Charlie Rose, the news and a nap take up the afternoon. Then repeat inhilation therapy, blood stick, meds and make dinner for me, Lee and Puck. Things seem to be straightening out. The swelling is  an inconvenience and a puzzle we need to work on. I am still enjoying learning from the Khan Acadamy and the TED Lectures.I am reading Infinite Jest, and consider it on par with Ulysses as a classic.  ld’e like to have my hip fixed, but ortho wants to wait so I can improve the chances of healing and not getting an infection. He would be willing to do it earlier if I had unacceptable pain. Guess we are not there yet. I will be seeing a PT on Saturday to set up a program to strengthen the hip abductors/adductors.All in all life continues to teach, suprise and make me laugh. I am blessed by having the world’s most incredible wide, amazing children and the world’s best friends/family

Thank you all for your support and ongoing interest. I miss/love you all. Neale

Since my last blog, I have been hospitalized twice. That is a total of 4 times since November. Am on an additional experimental protocol, and I seem to be stabilizing. I can walk without crutches, albeit slowly and with some pain. I have been riding the bicycle up to an hour at the new club which opened in north Magnussen Park, and enjoying a sauna/shower post. My friends, family and Kindle have kept me in reading material, and I watch too much TV.

Once our bodies functioned without our giving them a second thought It was effortless to get up in the morning, work too many hours, exercise and then finish it off with a large burger/fries/couple beers. This would be repeated day after day. I suppose we take the same approach that we do with a new car- take its functioning for granted. Even if we do due diligence, eventually the car begins to break down. So too our bodies. Stiffness in the morning, a gradual sense of fatigue, heartburn, heading for the couch in the evening and accepting these limits. I never thought of these problems, but they have been telescoped into the past couple of years. It is what Gabriel Marquez referred to in “Love and the Time of Cholera”.

I never envied the young in the past. But now I appreciate their vitality and freedom. The ease with which they move in the world. It is a gift, and I am glad to have had it at one time. Enjoy the day, Spring is here.