My Sweetheart

Barbie has been a real sweetheart this week. The heart part being that Valentines Day is Saturday and sweet because she is up to her ears in organic chemistry studying sugars. Ask her about glucose, she can tell you everything you want to know. However, she was disappointed to learn that the consumption of a 'reducing' sugar does not promote weight loss. For homework we have been sampling different compounds containing sucrose and theobromine. Her favorites are Ghiradelli semi-sweet chocolate and See's Candy dark chocolate walnuts. Hmm, I wonder what I should get her for Valentines Day?
Today we will drive down to LA to go to Disneyland. We need to get away while we can. I am ready for The Tower of Terror and Space Mountain. It was clear that we need to do this now as next week we begin the marathon. Soon I will be the tower of nausea and space mountain will indicate the vacant lot on my scalp ready for hair to move back in.
Generally, I feel great. On a scale from 1-100, where 100 is completely healthy and 1 is dead, I am running between 73 and 84 this week. (This is good, as the 2nd day after velcade and decadron I am usually a 52.)
I have had numerous labs and studies in preparation for the BMT. Overall, things look good. Even though my circulating kappa light chain levels are still high. The light chain level and protein in the urine has dropped significantly. In addition, the degree of plasma cells and specifically amyloid deposits in my bone marrow has improved. The velcade and decadron must have done some good.
My heart continues beat regularly reminding me every moment how grateful I am for more moments.

Happy Valentines Day; may your heart be full of love and joy.

Kevin

Where Have I Been?

I know it has been forever since I have written and for my own personal reasons I kept most of my feelings to myself.  My sister-in law, Darlene told me once that when things get really hard to write a letter to myself and then destroy it.  I wrote privately for awhile, but I have not destroyed them yet.  I feel that my private writings will help me later somehow.  I wrote privately for myself mainly because i was embarrassed and tired of complaining openly to the blogging world. 

I am going to be open now of what has been happening here and in my perspective.   

I'll start with Rebecca first.  Just after Christmas Rebecca's new husband, Corey decided that mormon life and married life was not for him.  It was only a few weeks later that we moved Rebecca home and realized the marriage was over.  We will never know exactly what happened in his heart, but we do know that Rebecca did all she could to try and save the marriage.  Corey has made a decision and in his heart I believe he feels he is doing right for Rebecca.  For the few weeks of early January we watched Rebecca torn; she was still in love with him and hoped he would change his mind, while other moments she was angry at what he did to her.   As time went by her heart healed and she wished as we did that he would find happiness in his life.  Some days I miss him, but mostly I wonder why. She is strong now and happy and will be heading back to BYU for Spring term to continue her degree in Advertising.  We have loved having her back home with us.  She brings laughter and playfulness to our home.  Caitlin is also enjoying having her sister around.  

Now, about Kevin.  He is my love and will always be.  Does this mean I am good at being a sensitive and loving caregiver?  No.  I am good some of the time and other times my selfishness comes through and I am tired of him being sick.  I miss the easier life we seemed to have, but am grateful for the outcome of every trial that has come our way this year.  Without the love and knowledge of God, I would not be so calm.  I look forward to him going back to work.  Not because I want him out of the house, but because it will be good for him and will give us both the sense of normalcy again.  I am truly scared of what is ahead with the SCT, more so than the heart transplant.  My fears have little to do with it being successful, but my ability to care for him in all that is required.  I must sterilize his water.  Make everything from scratch.  Keep him away from public places.  Drive him everywhere.  He will be on a Microbial diet because of his immunosuppressive drugs.  This means he also can't have fresh fruits, vegetables, deli meats, open breads, yogurt and many other specifics.  He is not allowed in the kitchen or allowed to clean in any way.  And all this will be in a hotel again in Stanford.  I know, it sounds like I am complaining again.  Sorry.  I'm just stating facts.  With Rebecca home until March, she will be able to help out at home with Caitlin.  Once she heads back, we'll figure things out again.  

Now about me. I have started taking prerequisites for Dental Hygiene school.  I am taking Organic Chemistry and Nutrition.  It has been a good distraction, but also extremely time consuming.  I have classes all day M&W.  I know that when the SCT process starts in a couple of weeks it will be hard to keep up with classes and if I fail, I fail and can repeat them.  If I need to drop, I will drop them.  We are grateful and will call upon family and friends who have offered to help when he needs 24hr. care in the hotel and I am in class.  Some may wonder why I would even think to start these classes now and not wait until things were easier.  As Kevin puts it, "things may never get that much easier" and honestly we both felt it was the right thing to do.  He knows me and I know me better than anyone.  

My way of coping now in my life is to work through today and plan for tomorrow, not the "future" tomorrow, but just the next day tomorrow.   

I am happy, healthy, love learning about carbons, (REALLY...)and I might add, tired.  But because of my faith in God, I know that only he can carry my burden and make it light.

Barbie

Marrow to my bones

Hematopoiesis (click to enlarge)
Idea: Kill bad plasma cells downstream and replace with good stem cells (new plasma cells will be good ones)

I received the schedule for the stem cell transplant. I begin stem cell stimulation on February 23 and the apheresis or harvesting will take place on February 28th. I will then have a week off, (fortunately when Caitlin is off from school as well) and receive the conditioning with Melphalan on March 10 and 11th. March 12th is when Barbie, Caitlin and Rebecca will go to San Francisco to see Wicked. March 13th is the day that my new bone marrow will be born. Which is fitting as that is Samuel and Jeremy's birthday. The pattern must continue since the anniversary of my new heart is the day Samuel and Michelle got married.

Today was my last dose of Velcade and Decadron ( and I hope last means last.) I also had a bone marrow biopsy by Dr Sardar, with Laura, his MA, assisting. This one was even less painful than the last two because 'Phil's good'. Tomorrow I will do a skeletal survey, which does not refer to the mapping of a cemetery. All of this is in preparation for the transplant.

Preparation for all of this began a very long time ago. When Joseph Smith received the revelation from God in 1833 called "The Word of Wisdom", the saints were instructed on issues of health, both spiritual and physical. I have followed this guidance all of my life. I have never smoked, I have never tasted alcohol or drank coffee. I have tried to eat healthy. At the end of this revelation, the following promise is given:

Doctrine and Covenants: Section 89
18 And all saints who remember to keep and do these sayings, walking in obedience to the commandments, ^ashall receive ^bhealth in their navel and marrow to their bones;

19 And shall ^afind ^bwisdom and great ^ctreasures of ^dknowledge, even hidden treasures;

20 And shall ^arun and not be ^bweary, and shall walk and not faint.

21 And I, the Lord, give unto them a promise, that the ^adestroying angel shall ^bpass by them, as the children of Israel, and not slay them. Amen

With my new heart I can walk and not faint, now all I'm waiting for is the healthy marrow in my bones.

Kevin

Groundhog Day

Today I saw my shadow which means, like Bill Murray, I will need to stick around until I get it right. I am always struck how different every day can be. I get the chemotherapy (Velcade and Deexamethasone) every Wednesday. By Friday I feel like 'Death and all his friends' are visiting. It consists of that very uncomfortable feeling where, on the one hand you are hoping for reverse peristalsis (euphemism for vomiting) and simultaneously holding on to avoid the mess. At least it is predictable. I know that no matter how bad I feel on Friday, I will survive and Saturday will see my appetite return. By Monday I'm ready for anything. I know that in life we must have opposition in all things, but I am often struck by its immediacy.

I would have liked to stay home on Friday, but we had our intial appoinments with the Bone Marrow Transplant (BMT) Team at Stanford. Dr Arai, the BMT specialist, oulined what we would be facing in the coming months. I was very pleased that she had been in communication with Dr Lacy and the Mayo Clinic team. They discussed the nuances of my case with regard to the heart transplant and immunosupressive drugs. Then the nurse coordinator, Zoe, listed all of the studies that I would need in preparation for the transplant: Bone marrow biopsy, pulmonary function tests, labs, heart biopsy and an echocadiogram. This was then communicated with Dr Sardar, my oncologist in Roseville and the cardiovascular transplant team at Kaiser in Santa Clara.
When I was in Junior High School, I dreaded P.E. This was because whenever teams were chosen, I was always the last one standing on the sidelines (the irony of being 6' 2" and unable to dribble.) What a difference now, with all of this new-found coordination among all of these teams, this now elevates me as a first round draft pick. I guess I'll be playing for Stanford.

The gameplan will begin, after the preliminary workup, with 4-5 days of stem cell stimulation with a hormone called G-CSF (granulocyte colony stimulating factor). A Hickman catheter (semi-permanant IV) will be placed into my right subclavian vein and and after 5 days the stem cells will be harvested in a process called apheresis. My blood is run through a machine which magically pulls out the stem-cells and puts everything else back, (just like my daughters picking their favorites from a box of See's Candy.) These cells are then frozen. A few days later, I will get a drug called Melphalan which will kill my bone marrow, including the plasma cells responsible for my amyloidosis. Two days later, the stem cells will be reinfused to 'reboot the hard-drive' to a clean, unaffected state. It will take some time, however, for my red blood cells (RBCs), white blood cells (WBCs) and platelets to return to normal. During this 2-4 week period I will be anemic, prone to infections and bleeding. This will also be componded by the fact that I am on immunosuppressive drugs for my heart. Bring it on!

But that is all tomorrow. Today was beautiful; California, in the dead of Winter. It is 70 degrees outside and I went for a bike ride. I rode 5 miles on highway 193 into downtown Lincoln. I felt great. But my atrophied chicken-bone legs were yelling up to my brain, "What the heck is going on here?" Meanwhile my heart was querying, "Are we exercising? No one tells me anything, always out of the loop." My adrenals just rolled over and went back to sleep.

I remember the day after my heart transplant, I realized that I would be able to ride my bike again. I decided to set a goal to ride in the Foxy's Fall bike ride out of Davis, CA in October. I would do the metric century (100 km) instead of the century (1oo miles). I feel compelled to do this to raise awareness for the metric system (and amyloidosis as well) both of which are equally obscure in America. I figure, if I survive the BMT, I will then begin to train for this. I really think I can do it. It is important to have something to look forward to.

Kevin

The Most Noble Profession

Medicine, I consider, a very noble profession. At its core is the commitment to both extend and improve the lives of others. But, it is the endeavour to fill those lives with meaning that I reserve the designation of the most noble profession, to be a teacher. I have always seen myself as a teacher first. I absolutely love to teach. When I was in sixth grade I went to the third grade classes to assist with reading. I continued with 'peer' teaching through junior high and high school. At church, I began teaching the Priests at age sixteen (the age that we become Priests), and have continued as a teacher at church since that time.
I had the privilege of dedicating two years of my life teaching the Gospel of Jesus Christ in Argentina, and the lessons that I learned there still serve me today. Argentina es lo mejor lugar para ser misionero.
When I returned to college, I had a professor named Dr. Bradshaw. He taught Cellular and Developmental Biology. He had a unique style of teaching. Rather than present to us a laundry list of facts that we would regurgitate onto the test and then summarily forget, he taught us how to analyze data. The test would consist of an experiment that we had not previously seen. He had given us the tools to understand the process and would then ask, "These are the data, what do they mean?" What a concept, asking a student to think.
In his first lecture, he likened all of us to a sponge. He even had a slide showing a sponge with head, feet and arms. "All of us are students and teachers throughout our lives", he said. "As we learn we are filling the sponge, and when we teach, we are wringing it out". How that rang true. I will always be both a student and a teacher.
When it came time to choose my path in medicine, I was influenced by an observation of one my professors during my residency at UC Davis. I was a little disillusioned about academic medicine as it seemed so focused on publishing and getting grants. Dr Stone reminded me, "Kevin, academics is about teaching." I had the great privilege of being on the faculty at Yale University, School of Medicine for 11 years and had specific lectures in all four years in the medical school curriculum. The greatest 'rush' that I would get as a teacher was when, half way through a lecture, such as male infertility, the hands would start to go up and the questions would begin. Then I knew that I had made a connection and they were thinking. I can't tell you how much I miss that.
Teaching did not stop when I came to Kaiser. I still get to work with residents, and of course, I teach my patients; but that also in now temporarily gone. However, I can still teach.

Becoming a patient has taught me some truly valuable lessons. I will be able to share these experiences with others. Today, while getting my chemotherapy, I was sitting next to an elderly woman. As she heard me banter with the nurse, she commented, "How do you stay so positive?" She is fighting a tough battle with brain cancer. I asked her, "What are your goals?" She responded that she recently became a grandmother and wanted to have time with her grandchild. I reminded her that her goal can keep her focused on winning those extra days.

Friday I will meet with the Bone Marrow team at Stanford. Stem cell transplant for amyloidosis in heart transplant patients is rare. So rare that Dr Lacy at the Mayo Clinic suggested that I return there to Minnesota for the treatment. It is trickier after a heart transplant because the anti-rejection drugs can make the infection risk even higher. Stanford, however, has begun a new multidisciplinary Amylodosis treatment center and they need to build a program that will also give them the expertise to treat patients like me. I will be their first BMT after heart transplant. I figured that as they treat me I can be their teacher. They will learn from their communications with the Mayo Clinic; they will learn from my bad days, they will learn from my complications; and hopefully they will learn from my successful completion of the treatment.
And thus, I can still be a teacher.

I have been given so much in my life. I can never fully recompense, no matter how much I serve in return, but I am always happy to try.

Kevin

Cakes - not of our choosing.

It has been a while since I last wrote. I guess that even I, the eternal optimist, can feel discouraged sometimes. It has been a difficult two weeks; for many reasons. As I mentioned, I was hoping to go back to work part time in February. Because of the impending stem-cell transplant, this probably won't happen. In fact, it might be quite a while before I get back. People have somewhat incredulously asked me, "Why are you in such a hurry to get back to the 'stress' of work". Who I am has always been defined by my responsibilities to others, my partners, my patients, my friends and my family. Part of feeling 'whole' again has it's foundation in how I might serve others. I was really looking forward to that, as it will be both emotionally and psychologically healing. Even now, when I do a little administrative work in my role as Chief of the department, I feel immensely normal. I hope for this as much as I hope to be successfully treated of my disease.

Second, I have finally admitted to myself that a stem-cell transplant will not be a 'piece of cake' unless that cake has liver pate for frosting and sardines for candles. I know this will make me sick beyond what I have previously experienced. I know I will get through it; I don't worry about it, but it will be hard.

Third is the fact that I feel weaker than I did after my heart transplant. The drugs have taken their toll, (or the amyloidosis has). I feel fatigued all of the time and fight past it to function. I am dizzy all of the time, especially when I get up from sitting for more that 15 minutes. I feel bad for Barbie, because I am not always fun to be around, even though I try as hard as I can. I remember before my Dad died of multiple myeloma, he was on the same drugs that I take and he was often 'grouchy', which annoyed us. But now I understand; it wasn't his fault.

Every patient who is chronically ill just wants to feel normal again. Often we must accept a new normal and come to terms with who we are, not who we were. Then again, I would rather feel a little bit ill half of the time than be a little bit dead all of the time. Ah yes, perspective.

How I feel does not diminish my gratitude by one iota. Nor has my hope waned. It is just that, on some days, the effort to self-motivation is the heaviest weight that I lift. I see six months from now a retrospective view that does not daily remember these difficult days, because they remain in the past. The more I can focus on others, the sooner that will come to pass. Until then, I have my fork ready to dig into liverwurst cake.

Kevin

Phase II

Recently, I finished my first course of chemotherapy with Dexamethasone (Decadron) and Velcade. Overall it went well, as I have mentioned, but as expected, 3 days of the week fatigue prevented me from accomplishing much. I kept wondering if this would need to go on in perpetuity. Should one trade occasional days of discomfort for a month of really feeling sick with the stem-cell transplant. And yet, I have always felt that the stem-cell transplant was inevitable, so why delay it. One reason for delay would be to give Velcade chance to lower my kappa light chain levels; yet none could tell me for how long I would need to be on these drugs. Forever?? Much of the treatment is not based on strong data from the literature, but rather, results based, such as is it working or how bad are the side-effects. Therefore, it is difficult to know when to abandon one therapy and change to another.

Tuesday I had my routine heart biopsy (it is sad when a heart biopsy is seen as routine). Which showed a good result with minimal rejection present. I also saw Dr Schrier and Witteles at Stanford and he was concerned that my kappa light chains significantly increased, despite the Velcade. Since my six month anniversary from my heart transplant will be next month, he suggested that I go ahead and schedule the stem-cell transplant. That was actually what I wanted to hear. I would like to move forward with this. However, I had asked Dr Weisshaar, my cardiologist if I could return to work in February thinking that the stem-cell transplant would be far in the future. She reluctantly agreed, but wanted me to take a gradual approach, with Barbie as the judge that I wouldn't overexert myself. But now I realize that I may have to delay my return until after the stem-cell transplant. I am a little sad about this, not just because I still feel a sense of responsibility to my patients and my colleagues, but in addition, psychologically I need to work to add some normality back to my life. However, my priorities are well placed and I will follow the counsel of my doctors. It is better to sacrifice now for something better in the future.

Barbie is going to start classes next week at Sierra College. She is taking organic chemistry and nutrition as prerequisites of dental hygiene school. So we will have a busy Winter and Spring this year. We remain constant in our hope.

Kevin

New Year in Tahoe

We had a fantastic time as a family on New Years Day in Lake Tahoe. Our annual tradition is to go snowmobiling. This began when we lived in a rental in Rocklin 4 years ago, and it was our first Christmas away from Connecticut, so we were sad and had to get out of the house. Being in the snow covered mountains with a beautiful view of Lake Tahoe will lift any one's spirit. Doing it at 40 mph is even better.

The weather was perfect; crisp, clear but not too cold. We were all together with the exception of Jeremy and Alexandria. The one glitch was that we thought Caitlin could drive her own snowmobile at age 15. She had been anticipating this all year only to be told when we got there that the minimum age was 16. She was devastated. However, the tour guide had her ride on the back of his vehicle and then let her drive quite a bit. She was then all smiles. We spent two hours racing through snow covered pine trees with blue skies above and a blue lake below. This has become a great family tradition.

Kevin

Caitlin after being told that she couldn't drive the snowmobile

Caitlin after driving with the tour guide in back, holding on for dear life.

Corey and Rebecca

Samuel and Michelle