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.
Kevin
Thursday, March 12, 2009
Wednesday, March 11, 2009
Visitors
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.
Kevin
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.
Kevin
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.
Kevin
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.
Kevin
The 'Shades of Hell'
by
Rodin
Stanford Rodin Sculpture Garden
(plaque below lists names as Decadron, Mephalan and Nasal Swab)
by
Rodin
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.
Kevin
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.
Kevin
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.
Kevin
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.
Kevin
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.
Barbie
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.
Kevin
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.
Kevin
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.
Kevin
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.
Kevin
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