Tuesday, March 31, 2009

Good News

Day + 18 Health Score 81

They told me that once I was out the the hospital going to the ITA for follow up, I would need to be patient and expect to wait. They were right. My labs were drawn at 10:00 AM and because of a computer glitch, we did not have any results until 2:00 PM. But it was worth the wait. My platelets were 99,000 (the goal is to be above 50,000) My white count is 9,000. I am back to normal. They were quite amazed at the rapid rate of my recovery. The Hickman catheter was removed! If my labs remain stable through Thursday, we will leave beautiful downtown Palo Alto and go home to Lincoln. Iwill see Barbie tomorrow and hopefully tonight will be the last night that we are apart. Every day just keeps getting better.


Monday, March 30, 2009

Better every day

Day + 17 Health Score 80

I guess when I am feeling '80' it means that motivation is returning. I now want to get out of bed and just be outside. We did spend time today at Half Moon Bay watching the waves crash on the beach. My appetite has returned, so now I really do feel the limitations of the low microbial diet. The Sizzler salad bar is definitely off the menu. Things are progressing well and I feel stronger every day.


Sunday, March 29, 2009


Day + 16 Health Score 77

I started the day in the ITA. I was very weak this morning, probably from not drinking enough. My appetite is slowly returning, but foods just don't taste right. Although, Lucky Charms still taste pretty good. They gave me a liter IV and we left just in time to attend the Palo Alto 1st Ward sacrament meeting. I always miss the hymns more than anything; although it is hard to sing with that giant filter mask I have to wear. My brother Daren and his wife Rachelle are with me now as Barbie returns home until Wednesday.

Rebecca sent me a photo of the Ginkgo Biloba bonsai that I received as a gift from my colleagues at work. They knew of my affinity for trees and, in addition to the bonsai, gifted me with plantings of trees in my name. For months this decidedly deciduous bonsai was bare and lifeless. Then Rebecca noted that just as my new stem cells were renewing my bone marrow and budding new cells, the bonsai came to life and put buds on its stems. What a wonderful reminder of the renewal of Spring and the renewal of life.


Saturday, March 28, 2009


Day + 15 Health Score 77

I was finally released from the hospital today, and what a glorious day it is. It is beautiful in Palo Alto. A family here, the Brand family, has been gracious in opening their home to us. It is only two miles from the hospital. We are staying in the guest house with a back yard reminiscent of the Garden of Eden with a Koi pond just outside. Barbie has already stayed here off and on for 2 weeks. I continue to be overwhelmed by the kindness of so many good people. I can't imagine a more serene place to recover.
The real work begins for Barbie. I have strict diet restrictions; I can only eat packaged processed junk food. My water has to be boiled daily. I will continue to go into the ITA (Infusion Treatment Area) daily for labs and treatments as needed.
I am still quite fatigued, I am still recovering from the pneumonia, but I feel a little stronger everyday. But every day fro now on is one day closer to complete recovery. The worst is over.


Friday, March 27, 2009

U-2 Flyby

Day + 14 Health Score 76

Every day I move a little more. Today, my friend Neal, the U-2 pilot flew over Stanford and called me from his plane. I went outside and could see him flying his jet low and near the hospital. It was so cool. U-2 planes appear unusual up close. My numbers continue to improve with my WBC count at 3.3 k today. It looks like they may send me out tomorrow. I am ready to go. I will continue to stay local for up to 2-4 weeks. (hopefully two weeks) It was warm and beautiful outside today. I received a number of letters, cards and drawings from many of the children at church. Now my wall is decorated. Everyday brings me closer to better health.


Thursday, March 26, 2009

Lots of sleep

Day + 13 Health Score 75

Today felt like a catch up day. I was up early, walking, showering and exercising. I spent time trying to take care of some work issues and answer patient emails. The physical therapist put me through some muscle toning routines as well. Soon, I was exhausted and proceeded to sleep for hours. I still need the rest to rebuild what I have lost. I feel good and hope to be out of here soon.


Everything's better

When I arrived last night, Kevin looked great. He is still a bit weak, so I guess I shouldn't expect a marathon anytime soon. I was so happy to see him that everything felt right. (Just like you said, Cindy). My test was not a big deal and I was in the car driving by 2:45pm. I usually don't get on the road until 6pm, so it was nice to get here earlier than normal. I slept great last night in the apartment. Kevin has slept for about 6 hrs since I have been here today. When he woke up, he wanted Ben & Jerry's Phish Food. That is a great sign.


Wednesday, March 25, 2009

Making progress

Day + 12 Health Score 73

I can tell my Doctors are happy, as they all come in my room with a big smile on their faces. I remember that feeling of relief as one of my patients would significantly improve after a rocky course. My white count today is 1.5 k. Normal is around 4 k. My absolute neutrophil count is over 1.1 k. They consider you out of the woods when it is over 500 cells (0.5 K) needless to say, I am well on my way to recovery and may leave the hospital this weekend. I can now take walks out side my room and am eating much better now. I feel wonderful. Barbie is here with me now; my brother , Harold, spent the morning with me. Now the process goes in reverse. I will gradually be reverted to all of my previous medications over the next two weeks. With this behind me now, my dreams and goals will soon become realities.
I feel at peace today.


Another day

There are two things wonderful people ask me, "How are you doing with all this?" and "Can I do anything for you?"  The kindness of the "ask" in itself lifts me.  When asked how I'm doing I usually say that I'm fine.  And for the most part that has been true.  When they ask me what they can do for me I say, "No, I'm good."  The truth is I need more sleep and need to be cloned.
This past week took a toll on my ability to think clearly.  I went out of the house with two different colored shoes, missed a hair appointment (and you NEVER miss a hair appointment), and I left the garage door open all night.  But those things aren't so bad, right?  The problem is that it is now affecting my school work.  I have completed the wrong assignment twice, can't concentrate on studying for my test today, and have lost my motivation, and have been waking up at 4am for no apparent reason and can't fall back to sleep.  I'm completely exhausted and just want to lay down.  Today is another long day of classes, my test and then I drive to be with Kevin.  I'll be fine because I was given a blessing by my Bishop that I will find strength that I didn't know I had.  
I am so thrilled that Kevin has pulled through (his white blood cells are GROWING) and so amazed at how quickly he turned from the sickest I've ever seen someone.  I am ever so grateful to the kindness of friends who have adopted our girls when I am away, have brought in meals, cookies, flowers, and messages of support.  We will never forget this experience and will be forever humbled by the love we have felt from so many and the comfort we have felt from our Saviour.  


Tuesday, March 24, 2009

Systems Note

Day + 11 Health Score 72

I am a little tired today as they have stopped the steroids and my body is using all of its energy to rebuild a new bone marrow and heal all of the other damaged tissues. But, despite that I feel wonderful. I had a visit from my Home Teacher from church who drove all the way from Lincoln and while he was here found Coldplay tickets for their concert in Marysville for July 14. What a treat to look forward to.

When doctors write a simple note on an uncomplicated patient, they use the SOAP note format.
S: Subjective
O: Objective
A: Assessment
P: Plan

A patient in an ICU setting has more that one system that may be failing, so they do a systems note; assessing each system individually. these generally include: CNS/mental status, cardiovascular, pulmonary, gastrointestinal (GI and nutrition) Genitourinary (kidney function) Hepatic, Infection, Immunologic and blood.

If more three or more systems fail simultaneously, it may be difficult for the patient to recover.
Last week my systems review was as follows: Infection: on Thursday I went into septic shock with a blood pressure of 60/35. My fever was 101.6 and I stopped making urine. I was resuscitated with 5 liters of fluids and 1 liter of blood. This only brought my blood pressure to 80/60 and still no urine output. (30 cc/hr). Finally, I was put on 5 mcg of Dopamine which raised my pressure to 95/60. Pulmonary: The next day a chest CT revealed bilateral basilar pneumonias. I was started on aggressive antibiotics and my fever decreased and breathing improved within 12 hours. Vascular: The infection caused my peripheral vessels to collapse and become leaky allowing all of the intravenous fluid to leak out and cause massive edema. Kidneys: The combination of dehydration and toxic drug effects caused my kidneys to fail and my creatinine went from a normal of 1.1 to 2.6 in 5 days (it is now down to 1.6) This made it difficult to get rid of the extra fluid. Mental status: I only had some mild delirium which last two days and only when I nodded off and would gesture and speak audibly to people in my dream. Gastrointestinal: The combined toxic effect of melphalan and edema on my gut made for a complete inability to eat. This, in addition to painful mouth sores meant no nutrition for 6 days. Fortunately the mouth sores last only two days and ended before the sepsis began. Imunologic: On vacation for the duration. I had zero white cells to help fight off the infection. That was the whole point of the transplant, and they weren't back yet. nor were my platelets to prevent bleeding, but transfusions of platelets and blood saved me in this category. Two systems were left. Hepatic: my liver remained healthy managing to metabolize all of the new drugs in my system. But my heart was the star. Cardiac; Early on I worried that all of this stress would put my heart into rejection; but an echocardiogram revealed that my heart was working above normal physiologic levels. It alone was keeping me going. It was perfusing my kidneys so that they could heal. It was maintaining my blood pressure even when they turned off the dopamine, but most critically, it was keeping my lungs free of excess fluid allowing me to breath. And possibly preventing the most dreaded of complication Adult respiratory distress syndrome or ARDS. Which by itself can have a 50% mortality rate.
As my cardiologist told me, "Your heart is doing a great job". I had to think, "My heart?" It is actually my 'shared' heart. And this is now the second time that it has saved my life.


Monday, March 23, 2009

The Bald Identity

A bald move

Day + 10 Health Score 66

Today was definitely better than yesterday. Let me explain, "No there is no time, let me sum up"

My kidney function is improving and they are working overtime

I woke up hungry for the 1st time in a week, I attacked the can of Strawberry Ensure that had been sitting on my table for 3 days.

I felt strong enough to get out of bed on my own and proceeded to take the first of two long, hot showers. As I washed my face, I noticed hair on my washcloth and wondered how it got there, immediately realizing that it was coming from my head. Then returning to bed I discovered the telltale 'pelo on the pillow' It was time for action. I was able to schedule an emergency hair appointment with my stylist, Evan. And as we all know, even with a menacing asteroid hurtling toward the earth; you never cancel a hair appointment!

My physical therapist came by and had me walk 12 laps around my room and then 15 minutes on the bicycle.

By then, my sister, Leslie, had returned with a pint of Ben and Jerrys Phish Food; my favorite ice cream. It was heavenly.

How could I go from my lowest point ever to such improvement in one day? Prayers are answered in many ways. My Dr, Dr Arai, was very concerned with some of my complications as atypical. She had read a paper written by My Dr. Dr Lacey at the Mayo Clinic describing these unusual symptoms in amyloidosis patients. She called Dr Lacey and they had found that steroids, specifically Solumedrol (one of my least favorite drugs) had shown improvement in both the lung and gut bleeding complications. One dose was all it took. What value there is in the combined wisdom of so many people.

Since my lungs had shown so much improvement on my CT today, the pulmonologists have cancelled the bronchoscopy scheduled for tomorrow. All that's left to wait for is for my new bone marrow to wake up and start making white cells...........You will never believe what just happened I stopped writing for a moment to speak to my doctors and I spoke with Sam and Michelle, as they called to see how I was doing. The nurse then came in and casually said I just got your labs back and they've improved. I was not prepared for what she said next, "Your white count is 0.4" I was stunned. That means I am engrafted. The stem cell transplant was a success. You can't imagine my relief. I felt like I should add 10 points to my health score and call it '76'. Now all that is left is to continue getting healthy. Why am I so blest? Why am I so loved? This is a gift that I can never repay.

Thank you to you all from the bottom of my strong, shared heart.


Sunday, March 22, 2009

Michelin Man

Day + 9 Health Score 49
I feel great, never felt better in my life. Sorry, I shouldn't use sarcasm here. In "The Princess Bride" they put the Dread Pirate Roberts on a machine that sucked 1 year of life out of his body.
This happened to me two weeks ago, only with this machine, they promise to give the life back to you when you need it most, that is when you are mostly dead. Of course, it takes time for it to work and it is not chocolate coated.
Today I feel very weak. I have a GI bleed (gut), and massive swelling. It takes all the effort and motivation I can muster just to get out of bed. I haven't eaten in days. But you needn't worry about me. I will get better. I am quite tenacious. I may be only half-way up the cliffs of insanity, but I have a clear view of the top.
This I know. I derive extreme comfort in the hundreds of gestures of support given to me and my family. But, above all, I could not survive this without Barbie. For she is the reason that I continue on this path, for Barbie, my Princess Bride.


Spoke too soon

Kevin is still the eternal optimist and yesterday I was as well.  We waited all day for him to "turn the corner", but he never did.  His guts and kidneys aren't working as they should yet and his lungs are still a problem.  He received 2 units of platlets last night and 2 units of blood this morning.  He is weak, short of breath, and still retaining fluid.  His creatinine is high, which is not good and could present problems for his kidneys.  We hope for a better outcome today.  Leslie, Kevin's sister is with him now.  She, being a physicians assistant, will be my eyes and ears while I am home for a few days.  She said her job is to make sure the nurses don't fall behind in his care.  With the exception of yesterday (during the day) he has had great nurses.  
I just arrived home, wrote this blog and am leaving now to attend Caitlin's piano recital.  I'm utterly exhausted, but am holding on.


Saturday, March 21, 2009


Day + 8 Health Score 62

When I was in High School Chemistry, we spent a lot of time discussing the importance of equilibrium, homeostasis or balance. That was just for chemical reactions. Later I learned of the critical nature of balance in all living systems. Essentially, all illness reflects be in a state in which you are out of balance. All efforts in medicine are to restore that balance; at all levels: chemical, cellular, organ and organ systems psychological/emotional and spiritual. It is the goal of caregivers to re-achieve that lost balance. However, sometimes to achieve that goal, you must temporarily cause the patient to be in greater imbalance. It could be surgery to restore normal anatomy, insulin to balance blood sugar or by administering poisons such as radiation or chemotherapy to destroy cancers. All of these maneuvers require the same thing to succeed; the body's ability to heal itself. Without this, I would be out of a job. However, some therapies are so drastic that, for a time, they wipe out this capacity for self healing. Stem Cell Transplant is in that category. For three weeks the doctors try to keep your body in a fragile balance, until you regain the strength to do it on your own. I am slowly progressing to that goal.
The CT scan of my chest, yesterday, showed that I have bilateral pneumonia. They already had me on very powerful antibiotics and anti fungals. So that by last night, I was already improving. Currently, I am not on any supplemental oxygen. My blood pressure stabilized and they stopped the dopamine. I slept great and am now back to eating.There are still many issues left to resolve, but I am hoping to achieve greater balance every day.


Friday, March 20, 2009

Waiting for engraftment

Day + 7 Health Score 59

My breathing is improved today. But I think I have pneumonia. They caught it fast and have me on Zosyn and Amphotercin-B. I have not yet 'turned the corner yet" meaning that I am not diuresing. It takes a lot of energy to get out of bed, but I was up in a chair for an hour today. The doctors and nurses are very vigilant and taking great care of me.


fighting off infection

When I arrived this morning Kevin was asleep and on oxygen. It turns out he does have pneumonia, but they caught it early and started him on high doses of antibiotics that specifically target the lungs so all should be well soon. He is still not eating, just a little ensure now and again.
I had a break down in the car this morning. I guess I should rephrase that. My car didn't break down, I did. Eventually your body just says, enough. I cried it out while driving. This has been a long road and I think I am tired. The car seems to be a safe place for me to cry; some may disagree. I am alert and careful, I promise. Everywhere else I want to be strong and together. Mostly I am. It's just hard to see Kevin suffering so and to be far from home. I miss my girls and I wish I could there to see Ty and his family. Tyler is six and the son of our good friends who was just diagnosed with Wilms tumor, type 4. Tyler had a long day of surgery and will have an even longer road ahead with chemo and radiation. We are praying for the family.

Kevin is optimistic still and fighting this as he knows how. He sits up in a chair to help the lungs open and take deeper breaths. He hasn't said much today except, "People volunteer to do this?" He's right, but in his case, as in many others, there ARE no other options.

Have a good day,



Since arriving here in Stanford on Wednesday, Kevin hasn't felt great.  I read his blog from yesterday and since he is a doctor and his mind is lucid, he wrote in that factual matter.  The events of the day were nothing like a "matter of fact" day.  When you're faced with the unknown of what is happening, the minutes seems like hours and the hours seems like days. 

Kevin loves to talk so I know when he is not talking that he is not well.  He slept most of the day between all the vital checks and doctor visits.  It took great energy to sit up.  His hematocrit was 23, blood pressure low, dizzy, low urine output, numb, and spiked a fever; all of these are major concerns with a person whose white blood cell count is .02.  (correction .2). He received 2 units of blood which gave him his color back and hopefully will help his urine output.  The 4 L of fluid they gave him seemed go somewhere, just not to his urine.  It looked to me like it was mostly in his belly.  He since has been moved back to a telemetry room to receive dopamine, a drug to help his heart keep up with these fluid shifts.  I think today he will be on the mend.


Thursday, March 19, 2009

Harder Day

Day + 6 Health Score 53
The good news first. Amazingly, my mouth sores and pain went away after only two days. I can swallow again. Unfortunately, something happened in the middle of the night. My mouth became extremely dry. Sips of water did not help and the I spiked a fever to 101.6 , Cultures were done and I was started on stronger antibiotics. By morning I felt horrible, I got out of bed to a chair and felt very dizzy, Also I had numbness all over my body. I called the nurse to do my vital signs and they were in report and said they would be there within the hour. I then said, "I think I'm hypotensive". She came right away. My BP was 60/38. She got me back in bed. I knew I was dehydrated and I had already drank 591 cc of Gatorade. They started bolusing with fluids and I eventually got 4 liters which brought my BP to 85/60. The thoughts going through my mind were Acute Tubular Necrosis of my kidneys due to severe dehydration, cardiac rejection and sepsis. My urine output dropped significantly and the fellow suggested placing a Foley catheter to monitor urine output. I respectfully declined, promising to pee on demand. Ultimately the echocardiogram showed a healthy heart and the Creatinine was 1.3, signifying that my kidneys were still working. My hematocrit was 23%, so now they are giving me blood.

I am feeling better now and hopefully in a few days the infection will go away.


Wednesday, March 18, 2009

Hard Day

Day+ 5 Health Score 61

Morning is difficult. My throat swells over night and it is like someone closed the drawbridge; nothing passes. Talking hurts and swallowing really hurts. I was able to drink a can of Ensure. I hope this can keep me off IV nutrition (TPN). Its hard to get out of bed, but the best remedy fro all of the above is a hot shower. That was revitalizing. Since my white cell count is now 0.5 K I am officially 'neutropenic' and confined to my room until further notice.
Steve Hargadon came and visited me last night and brought me Hagaan Daz mango sorbet. It was so good. He had called me while he was travelling here and asked if my hair had started falling out. I told him that it started falling out 15 years ago, but that I would finish the job this week.


Tuesday, March 17, 2009

Day + 4 Health Score 68

Sometimes I may lie in bed for hours, awake, and with my mind racing; Random thought and remembrances. Occasionally some will push to the surface. They are not action plans, but mere reflections.
I guess I would call the following 'a poem in a minor key' because it has no tonic.


To what end do we profit in fear of the inevitable?

Only to paralyze us into inaction to neither submission nor reaction.

To what end do we profit from fear of the avoidable?

Deluding our actions into lives uncontrollable.

To what end do we profit from fear of the unknown?

Our light extinguished in failure to discover,

Whether it be a painful truth or a hidden jewel to uncover.

The only profit in fear is to those than feign sell us complacency.

That all pain is avoidable, that risk is unnecessary and that for a price we can be insulated.

Thus delaying our preparations in hope; that will free us to grow.

(For Tyler)



I am tired today. The throat pain is worse and eating is a struggle. I know it is temporary and will try to focus on other things.

Monday, March 16, 2009

'Guy' Stuff

Day + 3 Health Score 73

The day passed quickly as I had the company of a friend of mine from church, Neal Hinson. He drove the 2 1/2 hours from Lincoln to Stanford just so I wouldn't be alone today while Barbie was in school. Neal is a Captain in the Air Force and flies U-2 spy planes out of Beale Air Force Base. It was fascinating to learn of his experiences as one who flies so high and so alone. We both commented on the similarities between pilots and surgeons. In a moment of crisis, all of your experience, training, intuition and common sense combine with a heightened perception and awareness as you first; control the situation, second make a plan and third, fix the problem. I remember as this would occur to me, while performing surgery, almost being in a 'trance' like state where all external input is turned off. You do not sense time or body aches. You are completely focused until the job is done. And then, all at once, you look at the clock; and what seemed like a 5 minutes was actually an hour and your back starts to hurt.
The personalities that seek these jobs are clearly similar. It is strange that we might both be in awe of what the other guy does, whereas for us, it is just a days work.

The mouth sores began today. But I can still swallow. This was good because Neal brought 'guy' food (Cheetos and Hostess Donettes) and 'guy' movies (The Right Stuff and Master and Commander) to pass the time. It was good.

What a true friend.


Sunday, March 15, 2009


Day +2 Health Score 77

Today has been a quiet day. I sat and looked at Barbie's empty chair after she left. I was sleeping most of the morning while she was here and now I am awake. That's not fair. But it is always nicer when she is around. Nothing much has changed for me yet. My white blood cell count is only now beginning to drop, but it is still in the normal range and my hematocrit went up to 29% after the transfusion.
I sit and think a lot. I did a little writing today. However, I fear that I write like I think; which mostly consists of random associations and patterns that make sense only in the context of my memories, but would likely be incoherent to anyone else. I hope in time I could bring some order to my contextual chaos.
I was pleased to be visited this morning by some elders from my church that came by to give me the Sacrament. They were from a local ward (congregation) near here. The gentlemen was a bit forward, however, as he came in my room and said he saw my name on a list of LDS patients and began to proceed. I felt the need to at least tell him who I was and why I was here. Notwithstanding, I truly felt the Spirit and was so very grateful for their dedication in coming to help me, a stranger.
It brought to my mind the difference between administering and ministering. To administer in one's duty, to fulfill your responsibility, is an important part in serving any group or individual. Certain people are quite adept at administration; efficient, organized and focused. However, to minister is vital as well. There are times when a suffering soul only needs to be heard. Not only the concerns they voice, but also their unuttered fears. This is not uniquely relegated to the ecclesiastical realm, but is necessary in all professions. How often have I administered the diagnosis or treatment to my patient in an efficient and focused approach, ignoring there greater need for clarity and understanding? Ministering cannot be rushed, but always requires intent listening. You cannot minister to someone you don't care about. It occurs between individuals not between groups.
I am so grateful for the lessons that I continue to learn from this experience. I hope, from this, to be a better doctor to my patients. That I will not fall back on old habits and always remember whom I serve.


Back and forth

I've been sitting by Kevin's side since Wednesday night.  May I emphasis sitting.  I rode his exercise bike yesterday for 30min., but mostly I sit.  I can feel the my triglycerides growing.  I say that because that is our next section in Chemistry; all about fat.  I sometimes think it would be better if I didn't have to study while with Kevin.  The good side is that we have other things to talk about than his disease and the outcome of the bone marrow transplant.  He teaches me about Organic and Biological Chemistry and I teach him about Nutrition.  My nutrition exam is tomorrow.  
Yesterday I took a break from studying and we watched, "In America".  The girls in that film are great little actors.  Kevin has a stack of movies to watch thanks to a few friends and our collection from home.  He has felt great with the exception of the 1 1/2 hr. during the transplant.  Today he seems much more fatigued, wiped out.  It is 10:30 am and he is sleeping which is not normal for him.  Those stem cells are taking everything out of him to start growing, much like a baby wipes out the energy from pregnant women in the first trimester.  I hate having to leave him today, but I'll be back Wednesday night.  It's good to go home to be with my girls though.  Another silver lining.  I've also made sure that when I am not here, he is visited by someone.  A friend from our ward, Neil Hinson will come up tomorrow to be with him for a few days. I am grateful.
I have been staying at the home of Palma and Bill.  They are Janna Hargadon's parents and live pretty close.  Janna is also from my home ward.  It has a dream to be there compared to a hotel room.  They are good company and the bed has been so comfortable.  I am continually grateful to the kindness of so many people who keep reaching out to help us.  We will be forever indebted to many of you. 


Saturday, March 14, 2009

The day after Christmas

Day +1 Health Score 79

My nurse, Gayla, kept reminding me that this experience should be like the day after Christmas; anticlimactic. Today could be well described as that. I actually feel much better now that the hiccups have subsided. They also gave me 1 unit (450 cc) of Packed red blood cells because my hematocrit was only 25%. I am still able to walk around the nursing unit and ride the stationary bike, otherwise I am confined to my room. Thankfully, the night nurse found me the access code to the Stanford Internet so I can watch Hulu reruns of The Office and Lie To Me, (and of course, 'Dr Horrible's Sing Along Blog.) I have had the opportunity to help Barbie with her Organic Chemistry which I really enjoy. She is grasping the concepts so fast, but she will never admit that. I've never seen a student so dedicated.
The chaos and uncertainty that we so long feared with her in school and me here has been resolved through the kindness and generosity of so many people. Through our friends, the Hargadon's, Barbie has a place to stay while I am in the hospital. While she is in school from Monday to Wednesday, friends and family will be here to keep me company and keep her updated on my progress. Truly these are answers to prayers.

I remain in great spirits. My bad plasma cell clones are dead and dying; while Captain Stem Cell is coming to save the day. I expect next week to be tough, but that's OK. I am learning so much through all of this.

I guess I smell bad today, it's the DMSO preservative for the cells, Barbie keeps feeding me breath mints. What would I do without her.


Friday, March 13, 2009

Closeout Cell, All things must go in

Day 0 Health Score 75

Today I received my stem cells back. There were five bags to infuse. I was premedicated with 100 mg of hydrocortisol (equivalent to 20 mg of prednisone) and benadryl, This helps to diminish any allergic reaction to the DMSO preservative with the cells. The first and second bags were infused over ten minutes each. I only felt a little heat in the back of my neck. Upon infusing the third bag, the flushing extended through my head and chest and within a minute, I had a nasty ache in my stomach. Within seconds I was returning my lunch to its tray. (No major loss). I immediately felt better. They gave me some Ativan to calm me down and the last two bags went in without further incident.
The hard drive has been formatted and those malicious viruses and Trojan horses should be eradicated. Now the fun begins; rebooting the system. My white count and platelets will drop and I will need blood transfusions. The mouth sores should start next week. They assure me that once the white cell count comes back, I will feel better. I am confident that I will be better.

My gratitude remains insufficient for all the love and support that I feel from all of you. It carries me daily.


Thursday, March 12, 2009

The girls visit

Rebecca, Caitlin and Erin (their cousin)

Pensive Caitlin regards 'The Thinker'

My new doctors

One more day

Day - 1 Health Score 77
I am a little more fatigued today. My Hematocrit is 26 - 27%. But the good news is that my creatinine dropped to 1.4 from 1.6 (normal kidney function); that is reassuring. Still no nausea or pain of any kind. So I am ready for the stem-cell slushy tomorrow. They infuse them rapidly right out of the freezer.
It's been nice to have Barbie, Rebecca and Caitlin here today. They will leave soon for San Francisco to see "Wicked".
If these hiccups don't subside soon, I will claim psychosis and take the Thorazine. (a drug for psychotics also treats hiccups)
I had a visit today from Tony from the Amyloidosis support group. He went through this five years ago and is doing great. He was very encouraging.


Wednesday, March 11, 2009


Day - 2 Health Score 83 (despite the hiccups)

I kept waiting for some side effect from the Melphalan. None came. If anything, I feel a little better today (the upside of steroids) and the only side effects that I have noticed have been insomnia (easily corrected with Ativan) and hiccups. For some reason, I always get hiccups the day after taking high dose steroids. Even my sore throat and cough have gone away. (my nasal swab, yuck, was negative for any viruses.) I rode the exercise bike for 15 minutes and walked the hallways for 15 minutes. I have to get out while I can. In a few days I will be confined to my room. My labs are good today and my hematocrit went up to 29%, hence, no transfusion.

I am kind of a mini-celebrity here (very mini - like famous among 15) in that my unique case has generated discussion among multiple departments here at Stanford. I had the pleasure of a visit from both Dr Witteles, Cardiology and Dr Tang, who did my heart transplant. It was wonderful to see them. Also Dr Desai, whom I met as the fellow at Kaiser Santa Clara, stopped by. (As I was writing this the social worker and psychologist fro the Kaiser Transplant Clinic also stopped by for a visit.)
I also spent a good portion of the morning on the phone with my Assistant Chief, Dr Chabra, trying to hammer out departmental issues. The physical therapist comes by to make sure I am out of bed and exercising and the dietitian comes to reinforce the virtues of the low microbial diet, (salt, yes; pepper, no)

I also started writing my autobiography today. I've struggled for some time on the question of who is the audience and what style and structure I should employ. I am not a huge fan of the linear narrative, recording memories in a purely chronological litany. Rather, I see life and time not as completely linear. The decision I make right now is not often based on the experience I had 10 minutes ago or yesterday, but rather from something I learned 15 years ago, or a value I developed when I was nine. The structure, then, necessarily must reflect how I became who I am. The risk of failure in writing such a tome is high. But I will give it a try.


Tuesday, March 10, 2009

I am not alone

Day - 3 Health Score 80

I was admitted today to start what they call 'conditioning'. Which is a euphemism for 'poisoning'. Melphalan truly is a poison. The goal is to kill my bone marrow without killing me.I received the 1st dose today which is 70 mg/m2. The pre-medication was my favorite drug, Decadron. They also gave me 32mg of Zofran, an anti nausea drug.

As I lay in bed during the chemo infusion, I offered up a silent prayer. I heard the nurse enter the room to check on me. She asked how I was doing and I said that I was lost in thought. As I said this, I was trying to suppress my emotions. She responded, "Are you sure you are OK, because you are making a face?" I responded quietly, "It's the face of gratitude." She immediately understood and gently touched my arm. No other words were spoken.

I am physically alone here today; and yet I feel surrounded by the faith and support of so many people. Friends and family often ask what they can do for Barbie and me and our family. What they don't realize is that in the act alone of asking with sincerity, they have already done so much; to show that they care.


The 'Shades of Hell'
Stanford Rodin Sculpture Garden
(plaque below lists names as Decadron, Mephalan and Nasal Swab)

Monday, March 9, 2009

Back at Stanford

Day -4 Health Score 81

I hitched a ride with a friend down to Stanford today. I didn't want to drive and leave my car own here for a month. Because I was somewhat fatigued last week, I got some labs done on Saturday and my hematocrit is 30%. I am anemic. I am sure that they will probably transfuse me this week. Today I met with Dr Arai to determine if I can get the poison tomorrow. Since I have a mild dry cough, she did a viral swab of my nose again. I guess if that's OK, we will proceed.
The nurse coordinator, Zoe, went over the process in detail and it doesn't sound fun. She said I will be admitted for 2-3 weeks and probably won't be able to leave my room for two weeks. She spoke of nausea (lots of it) pain, fatigue and mouth sores. Bring it on.

It was so nice to go to church yesterday. It's always the hymns that affect me so. The opening hymn was "Count Your Many Blessings". I can't help but be reminded of how I have been so blessed. I don't worry much; I guess that is because I have Barbie by my side. I just soldier on and do what I have to do. Complaining is pointless; asking 'why me?' is an exercise in futility. One can't expect everything in their life to be perfect. My challenge in no more serious than that of anyone else. You can no more compare personal adversity than you can compare personal capability. Those with faith and self confidence will always rise to the occasion. In my case, though, the faith of others has also lifted me to the challenge. How blessed I am to have friends.
Tomorrow should be interesting.


Saturday, March 7, 2009

Doing well

Day -6 Health score 82

This week I have been recovering from the stem cell harvesting. Mostly I have just been fatigued. I guess Tuesday I would have had a health score of 75, but that has gradually improved. It was wonderful to visit with my family yesterday. My brother, David, was visiting from Alaska, so we got together at my other brother's house (Daren). I made funeral potatoes. Now I know where they get the name; they contain quantities of fat incompatible with life. But they taste so good.
Barbie and I have spent a lot of time discussing glycolysis, the Krebs cycle and oxidative phosphorylation (how we get energy out of glucose) it is quite esoteric, but also diverting.
Today is another gorgeous day here so I plan on going for a hike and getting one last restaurant meal with lunch at CPK. (the carne asada pizza is delicious).
Our ward has been incredible this week. People have brought over meals and treats and generally have expressed so much support and caring. It is very humbling to be the recipient of so much love.


Friday, March 6, 2009

Preparing, mentally, to go.

I've noticed Kevin hasn't written since he got home Monday night.  It has been great to have him home.  We have been 'soaking' it up knowing that he will be gone for some time starting next Monday.  I'm not sure what health number he would have given for the past few days, but Tuesday he was a little tired; didn't have a lot of energy.  Wednesday and Thursday were really good days for him.  He seemed to feel stronger and was in good spirits.  Today he felt washed out, tired, weaker, a bit fatigue.  It could be that his chemistry levels are all messed up from the stem cell collection or side affects from his medication.  Don't really know.  He may have some labs taken tomorrow to figure out what may be going on.  We will cherish the next two days at home together.  I love being home. It's my sanctuary from all the commotion of the world.  I will miss sleeping in my own bed with my own pillow every night.  I can't imagine how Kevin is feeling right now knowing he will be away from home for 5 or more weeks.  

Heading to bed now.


Monday, March 2, 2009

Paroled for good behavior

Day - 11 Health Score 78 (physically) 86 (emotionally happy to be home)

Today my blood went out for another spin. When it got back, I noticed that the stems had been trimmed.
Each consecutive day of apheresis, my body provided fewer and fewer cells for harvesting. 1.1 million on day 1, 0.95 million on day 2 and 500,000 on day 3. I wondered, "What can I do to improve this situation?" Then I remembered a young patient I once had. She was a seven year girl with an obstructing kidney stone. I performed ureteroscopy and fragmented the stone with a laser and removed, what I thought, were all of the fragments. I recall being impressed with how stoic she was about the whole experience; complaining much less than most of my adult patients. Two weeks later, however, her pain returned, and a retained fragment was seen in the ureter on x-ray evaluation. I explained to her mother and her that we would need to re-operate if the stone did not pass. It was clear that this upset the girl, but she held back the tears, trying to be strong. A few days later I got a call from the mom requesting that the surgery be cancelled. She related that her daughter informed her that she was going outside to jump on the trampoline to make the stone pass. Her mother felt conflicted; not wanting to crush the indefatigable confidence that only 7 year old logic can assert, but without also promoting false hope.
Twenty minutes later her daughter came in the house and, heading to the bathroom, exclaimed, "I passed the stone." Not knowing what to expect, the mother was completely shocked when, 3 minutes later, her excited daughter came out with this tiny brown stone pinched in her fingers.

I thought, "I have been lying in bed here for three days, my stem cells are just lying asleep in my bone marrow. I need to wake them up." So I designed a very biased, non-randomized, non-controlled study with an 'N' of one. I would ride the stationary bike for 30 minutes and go for a walk through the hospital for 20 minutes. Thereby increasing blood-flow through my long bones and washing out the stem cells.
Results: My count today was 700,000 cells proving that theory was correct. However, the difference in statistically insignificant with a p-value of 1.5 liters.
This was immediately accepted and published in Bogus-Science.blog between the articles, "Show me a food that isn't organic" by Hart E. Appetite and "Bottled water is a bargain and better for you than tap water" by Major U. S. Scam.
I escaped the hospital with the help of my mom and brother, David, and am happily reunited with the beautiful women in my life. It's good to be home.


Sunday, March 1, 2009

I'm still here

Day -12 Health Score 82

Today only 0.5 million cells were collected. So we go again tomorrow. They would like at least 3 million stem cells. Who am I to disagree. I think I may make fewer cells since I am simultaneously on immuno-suppressants and bone marrow stimulants. Hopefully I will return home tomorrow.