Monday, September 8, 2008
Sunday, September 7, 2008
Wonderful Weekend
What a great weekend it has been. Caitlin, Rebecca and Corey came and stayed with us here in Sunnyvale. We have been away from each other for too long. They arrived on Friday and we went out to In and Out Burger, our favorite hamburger place. Saturday we spent the day at Great America (an amusement park). They had a great time on the rides. (Of course, I did not go on any rides, as much as I wanted to, I do know better) We then all went to California Pizza Kitchen. (I was craving the smashed pea soup) Life is better now that my taste buds are willing to cooperate.
I have been feeling much better and getting my strength back. Today we went for a two-mile walk. I do need to build up my endurance.
I had mentioned that Caitlin wrote me a song for my birthday. Her piano teacher helped her to record it, and another piano piece, so that I could hear them any time. With Barbie's new-found blog-editing skills, I believe she will likely post it on the site.
We are so proud of Caitlin. She has become so independent in our absence. She is very responsible and remains strong. We are also so grateful to Rebecca for being there for her and helping her while we are gone.
We can't wait to go home.
Kevin
I have been feeling much better and getting my strength back. Today we went for a two-mile walk. I do need to build up my endurance.
I had mentioned that Caitlin wrote me a song for my birthday. Her piano teacher helped her to record it, and another piano piece, so that I could hear them any time. With Barbie's new-found blog-editing skills, I believe she will likely post it on the site.
We are so proud of Caitlin. She has become so independent in our absence. She is very responsible and remains strong. We are also so grateful to Rebecca for being there for her and helping her while we are gone.
We can't wait to go home.
Kevin
Thursday, September 4, 2008
My Dad
I've been thinking a lot about my Dad lately. My Mom came to stay with me last weekend while Barbie was in Utah and we had an opportunity to reminisce about him. My Dad died almost four years ago. When we moved back to California he was ill, but I thought we would have more time with him. It was only three months later when he passed away. My Dad died of Multiple Myeloma, which is interesting in that it is a cancer of the same cell-type that causes Amyloidosis. However, they are not related or of a heritable type.
California state law requires that all physicians take 12 hours of CME in end-of-life studies and palliative care. When I did my training, the course director asked all of us how we would like to die. Most people wanted a quick and painless death after a long and useful life. Unfortunately, only 10% die that way. When she asked, "Who would like to die of cancer?" I was the only person who raised his hand. She was puzzled and asked why. I was remembering my Dad and thought to myself, 'He died well' He was lucid and in control until the end. I explained this and she agreed. The rest of the class was consigned to die like most people do, after a long chronic illness takes it's toll over many years. This may seem like a strange discussion, but it is the reality that we will all come to.
When I began work at Kaiser, I looked at my Dad's x-rays and was shocked to see how much the cancer had invaded his entire skeleton. I thought, "He must be in terrible pain." And yet, he never complained. Even then, his focus was not on himself. The center of his life was always on his family. He never spent one night in the hospital. He died quietly at home surrounded by his family. Two days prior, I spoke to him and promised him that we would take care of Mom. The last words he ever said to me were "Thank You".
My parents gave me two great gifts in my lifetime. First was a strong work ethic coupled with the value of personal responsibility. The second was that they trusted me to make my own decisions, which included the risk of failing. For a parent, this is a hard balance to reach.
In my years counseling with and observing parents, I have found that many fall into the two extremes of being too rigid or too lenient. They either micromanage their children's everyday activities, allowing them controlled successes, but without real risk, or they aim to be just their friend who would never impose on their personal freedom. Both approaches are fraught with problems and based in fear. The middle ground is harder to maintain. Give them guidelines to live by, supported by example, and then let them decide, without subtle threat or coercion.
This gift from my parents was so valuable to me, that even when I left home, I would not do anything to break their trust. No child feels freer than when they are trusted by their parents.
As I spoke to my Mom about this, I realized something I had not noticed before. My parents have nine children and all of us have chosen to be productive and honorable in our lives. What I find even more interesting is that this has carried on into the next generation. All of my parent's 34 grandchildren continue to follow this pattern. I think of Barbie's and mine own children and how they have always chosen well. They have always brought us only joy.
It is no accident that I was born of noble parents. But with every true gift comes responsibility.
I have been given a 'second lease' on life. The memory of my father reminds me that I must continue in this life, as before, and never do anything that would lose the trust of my parents; the most valuable gift I ever got from them.
Kevin
California state law requires that all physicians take 12 hours of CME in end-of-life studies and palliative care. When I did my training, the course director asked all of us how we would like to die. Most people wanted a quick and painless death after a long and useful life. Unfortunately, only 10% die that way. When she asked, "Who would like to die of cancer?" I was the only person who raised his hand. She was puzzled and asked why. I was remembering my Dad and thought to myself, 'He died well' He was lucid and in control until the end. I explained this and she agreed. The rest of the class was consigned to die like most people do, after a long chronic illness takes it's toll over many years. This may seem like a strange discussion, but it is the reality that we will all come to.
When I began work at Kaiser, I looked at my Dad's x-rays and was shocked to see how much the cancer had invaded his entire skeleton. I thought, "He must be in terrible pain." And yet, he never complained. Even then, his focus was not on himself. The center of his life was always on his family. He never spent one night in the hospital. He died quietly at home surrounded by his family. Two days prior, I spoke to him and promised him that we would take care of Mom. The last words he ever said to me were "Thank You".
My parents gave me two great gifts in my lifetime. First was a strong work ethic coupled with the value of personal responsibility. The second was that they trusted me to make my own decisions, which included the risk of failing. For a parent, this is a hard balance to reach.
In my years counseling with and observing parents, I have found that many fall into the two extremes of being too rigid or too lenient. They either micromanage their children's everyday activities, allowing them controlled successes, but without real risk, or they aim to be just their friend who would never impose on their personal freedom. Both approaches are fraught with problems and based in fear. The middle ground is harder to maintain. Give them guidelines to live by, supported by example, and then let them decide, without subtle threat or coercion.
This gift from my parents was so valuable to me, that even when I left home, I would not do anything to break their trust. No child feels freer than when they are trusted by their parents.
As I spoke to my Mom about this, I realized something I had not noticed before. My parents have nine children and all of us have chosen to be productive and honorable in our lives. What I find even more interesting is that this has carried on into the next generation. All of my parent's 34 grandchildren continue to follow this pattern. I think of Barbie's and mine own children and how they have always chosen well. They have always brought us only joy.
It is no accident that I was born of noble parents. But with every true gift comes responsibility.
I have been given a 'second lease' on life. The memory of my father reminds me that I must continue in this life, as before, and never do anything that would lose the trust of my parents; the most valuable gift I ever got from them.
Kevin
Slide show added
I've been needing something new to do in our humble hotel room and with the help of my sister-in-law, Amy, I added a slide show to our blog. I've been wanting to spruce it up a little but hadn't really had time to think about it - my focus has been on Kevin.
Today he has felt much better than the past few days. The nurses warned us today that as he comes down on lower doses of Prednisone, he will feel even worse. The next two weeks could be his toughest. It's funny to think that the actual surgery itself was the easy part.
The girls are coming up this weekend (and Corey). We are excited to see them all. I think we are sending them to Great America for the day. It's about a mile from us. We also had a wonderful visit yesterday from MaryJane Smith, Gloriana and her husband, Josh. She is in California to attend Murphy's wedding (MaryJane's son). These are great friends from Connecticut. We've enjoyed every visit we have had. Last Monday we were to receive a visit from Kevin's sister, Lisa and from a Kaiser partner, Depak Chabra. Kevin had to call them both and ask them to come another time, since he felt so awful. Sorry - he didn't like doing that.
Thank you to all for your support in this experience. We have grown from your thoughts as well.
Barbie
goofed experiment
oops - trying to add an element to our blog and I goofed. Hey, it gives me something to do while sitting in our hotel room. :)
Barbie
Wednesday, September 3, 2008
Feeling Better
I had my second heart biopsy yesterday and everything looks fine. I am feeling better but still feel weak. My main goal is nutrition. Anyone that has had major surgery goes through a negative protein balance as your body heals itself. I was in protein deficit even prior to surgery so I have a long way to go. My steroid dose is now dropping daily and this will help to allow me to feel more normal.
Every day is a little better.
The need for patience continues.
Kevin
Every day is a little better.
The need for patience continues.
Kevin
Monday, September 1, 2008
From Lincoln, to Rochester, to Santa Clara, to San Diego, to Stanford, to Sunnyvale, to Utah and back to Sunnyvale
I had been thinking about my weekend in San Diego and realized Sam & Michelle's wedding, at least on my part, had been overshadowed by Kevin: missing him and the news of the heart. Everything in the past, even as close as yesterday, seems like long ago. Our entire summer has been full of trips, but not vacations. It all started June 30th in Santa Clara when tests began to see if Kevin was a candidate for a transplant and two weeks later we were on a plane for the Mayo Clinic. We were there almost two weeks, home for two days, and then off to Santa Clara Kaiser on August 1st to await a heart. I left for San Diego on August 12th to attend Michelle and Sam's wedding and Friday evening on the 15th, a heart was a match. I flew to Stanford right after the reception and had Rebecca drive the car home. Now living in Stanford for a week, while Kevin recovered in the hospital, August was almost over. We moved into a Marriott in Sunnyvale, close to Santa Clara Kaiser and then I got on a plane again to attend the Utah open house. I loved visiting my boys and their wives in their respective apartments, as well as family & friends. Uncle Harold and Aunt Gloria I had not seen in a long time and the Ormsbys who have made their residence in Utah since moving from Connecticut. From there I returned to the Marriott to live for another month or so. All in all, we will have been living out of a suitcase for at least 10 weeks.
The moment the call came about Kevin's heart, I was in the car with Sam and Caitlin. I was taking Sam to meet Michelle for their pre-wedding photo shoot on the beach and had left my phone at the beach house. Sam's phone was in the back of my car, unreachable, and Caitlin fortunately had her phone. Kevin had called my phone, Rebecca answered, when he asked where I was. Rebecca explained and then he told her. She ran down the hall of the beach house and announced to my family and Kevin's family that a heart was available. As tears of joy entered the room, they joined together for a prayer to bless Kevin through the surgery and to bless the donors family. Harold, Kevin's oldest brother offered the prayer. In the mean time, Kevin tried Sam's phone (unreachable) and then Caitlin's. She handed the phone to me. I heard him say something about a heart, but I couldn't really hear him and then in my sometimes inattentive way, I apologized for not having my phone and began to explain why. He stopped me mid-sentence and said, "They have a heart." I froze. A million things went through my head. I am not there, I am here. When will it start? How will I know he is well? What should I do? Can I do this? We hung up and I grabbed Caitlin's hand and we cried driving back to the beach house. We drove in silence. While I was happy about the heart for Kevin, I wasn't ready for it yet. In retrospect, everything happened as it should. While we were in the temple observing the marriage of Sam & Michelle, Kevin was in recovery, not thinking about being absent. While in the temple before the ceremony, I looked up and saw the chair empty that Kevin would have sat in, I started to cry, not so much that he wasn't there but with gratitude as to why he wasn't there. I was full of joy where tears just kept flowing. Jeremy, who would stand in for Kevin, came up to me and said, "Be strong for Sam." I pulled myself together and my mom came to sit next to me and held my hand. The rest of the day was beautiful. Sam and Michelle are so happy together. Our families and friends had a nice sit-down afternoon lunch hosted by the Morans. I was at ease because I handed off things I needed to do before I could leave to Leslie and my mom and sister, grateful for their willingness to help. Mostly at ease because I would be with Kevin soon.
We both are looking forward to going back to Lincoln to see our home, our girls, and our dog.
Barbie
A sick doctor
I probably feel sicker today than I have ever felt in my life. I know that it is the medication and that my body is trying to find a new balance. The side-effects continue to mount. The tingling in my feet has now spread to my legs and I just feel, overall, unwell. Wellness is something we take for granted and don't really notice until it flees us.
I have this constant gnawing in the pit of my stomach that I can't really differentiate between hunger or abhorrence for food. The constant foul taste in my mouth makes all food unpalatable, and I find I have to force myself to eat. This concerns me as I really need the nutrition.
As I go through the twice daily ritual of of taking my medication, I find myself staring at the sorted drugs on the table and my throat reflexively closes. I have to 'trick' my esophagus to accept the pills with some other food, like cookies or applesauce.
I really only feel good when I am lying down, which I have done a lot in the past few days. I catch naps during the day, but remain wide awake at night.
The drugs are now affecting my concentration, making even dialing a phone number a challenge. As I lay in bed awake my mind wanders to strange places. I was contemplating the myriad of forwarded emails that people seem to circulate listing pithy phrases and 'feel good' scroll-downs and thinking how most of them are like a bite of a Butterfinger, momentary sweetness, but without substance. I began to compose my own banal list, but prudence stopped me; my mind, currently warped as it is would include such phrases as, "Sitting in a dark room is like a day without sunshine", or "Pictures of kittens are cute, until they become feral cats and attack you in your sleep".
When I finally do fall asleep, however, the effect causes vivid dreams. I dreamt that I was finally back to work in clinic and I was so far behind seeing patients that I was working late into the evening and the middle of the night. It was 4:00 A.M. and the hallway was pitch black so that I had to physically escort the patients to the front door. In the darkness I ran into Dr Chiu, (he is my partner and tends to work late). I thought that was funny.
I share these only as examples of how being ill can effect us. There is this underlying anxiety that I will never feel better. Intellectually, I know that this is not true. I will get better. But in the moment, you cannot deny what you feel.
Above all, I know that I am not alone. Every person that has been ill knows what I am going through. The important thing is that this teaches me to be more patient with my patients. Most of the time, what sick patients really need a listening ear, a caring heart and understanding.
Boy, do I understand now.
I hope that the memory of this will serve to make me a better doctor.
Kevin
I have this constant gnawing in the pit of my stomach that I can't really differentiate between hunger or abhorrence for food. The constant foul taste in my mouth makes all food unpalatable, and I find I have to force myself to eat. This concerns me as I really need the nutrition.
As I go through the twice daily ritual of of taking my medication, I find myself staring at the sorted drugs on the table and my throat reflexively closes. I have to 'trick' my esophagus to accept the pills with some other food, like cookies or applesauce.
I really only feel good when I am lying down, which I have done a lot in the past few days. I catch naps during the day, but remain wide awake at night.
The drugs are now affecting my concentration, making even dialing a phone number a challenge. As I lay in bed awake my mind wanders to strange places. I was contemplating the myriad of forwarded emails that people seem to circulate listing pithy phrases and 'feel good' scroll-downs and thinking how most of them are like a bite of a Butterfinger, momentary sweetness, but without substance. I began to compose my own banal list, but prudence stopped me; my mind, currently warped as it is would include such phrases as, "Sitting in a dark room is like a day without sunshine", or "Pictures of kittens are cute, until they become feral cats and attack you in your sleep".
When I finally do fall asleep, however, the effect causes vivid dreams. I dreamt that I was finally back to work in clinic and I was so far behind seeing patients that I was working late into the evening and the middle of the night. It was 4:00 A.M. and the hallway was pitch black so that I had to physically escort the patients to the front door. In the darkness I ran into Dr Chiu, (he is my partner and tends to work late). I thought that was funny.
I share these only as examples of how being ill can effect us. There is this underlying anxiety that I will never feel better. Intellectually, I know that this is not true. I will get better. But in the moment, you cannot deny what you feel.
Above all, I know that I am not alone. Every person that has been ill knows what I am going through. The important thing is that this teaches me to be more patient with my patients. Most of the time, what sick patients really need a listening ear, a caring heart and understanding.
Boy, do I understand now.
I hope that the memory of this will serve to make me a better doctor.
Kevin
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