After 55 days of being away I am finally home. Dad drove me to Coloma from Stanford on Tuesday afternoon after the docs gave me the OK. It is so good to be here I have trouble finding words to express it. It is fall and the valley is beautiful. I get to see my girls every day and be a part of their lives again. I am feeling much better than I did when I left; I am pretty much independent around the house. I am just glad to be alive.
Now I work on recovering. That means rest, exercises, walking and rest. The other challenge is re-integrating into the family unit. Lots has changed in the way we do things in the last 10 months and now it is changing again. That is going to take some work. I'll write more about it soon. For now, I am home and I feel like the luckiest man in the world.
That is all I've got for now. I'll be back with more ramblings soon.
Thursday, October 30, 2008
Saturday, October 25, 2008
Home Soon!
It is day 46 since I had the transplant. I have been in Stanford since September 5th. Think back on what you have done since then. Me, I spent about 40 of those days in a hospital bed. I had tubes sticking out of more places on my body than I can remember. I have had more than my fair share of chest X-rays and CT scans. Suffered through mountains of pain and a sea of discomfort. I have been on death's door and recovered to the point where I can walk for 15 minutes with a cane and no oxygen. It has been a long hard road. I have had moments of pure happiness and clear gratitude. I feel so overwhelmingly lucky to have been supported so well by so many wonderful friends and family.
Today I walked the one block to the ITA using a very little 02 (2.5L). When I got there I went off of 02 and they checked my saturation. It is at 96% which means that my lungs are recovering. The doctors told me when I got to that level I would be ready to go home. So the plan is that after my appointment at 7:00AM on Tuesday, if everything is still going good, I will be discharged home!
I am, needless to say very happy about this. But there are other feelings as well. I am nervous, I have felt this way every time I have graduated to a new level; when I left the ICU and when I moved to the apartments. I wonder how I will perform. I am still really weak. I am walking, and in many ways better than when I went in to the hospital. I still have lots of fatigue. I am still dependent on help from others. I can hardly wait until I am completely self sufficient to the point where I can drive, or go out by myself. I know, I know, it will come in time.
There is more. I am going home after a long absence. Things have changed, my home is different. My family has been through a real trial. The Chickenhawk has been through every bit of hell that I have and then some more. She has managed a household, the schedule of 5 and 7 year old girls, and the volunteer schedule of 120 people. She did all this while being my primary caretaker for the last 8 months which means that she has not only been caring for me in every way thinkable. Not only that but she has been my advocate, she has learned as much as any non-medical professional could possibly learn about multiple myeloma, fanconi syndrome, diabetes insipidis, pneumonia, sepsis, BCNU induced pnumenitis, hematapoetics, the side effects of countless drugs, the inner workings of nursing staffs, the hierarchy of doctors in a teaching hospital, and the best food to order from hospital cafeterias, made countless trips up and down highway 80, returned many, many phone calls, and written countless beautiful email updates. All while watching her husband go from healthy athlete, partner, breadwinner and engaged loving father to a sickly walker and wheel chair bound invalid who cant muster the energy to play with his kids. It is more than anyone deserves to go through.
My daughters have started school and grown. I have seen them only once in 50 days. They no longer have the childhood comfort of knowing that mommy and daddy will always be there. They have had to learn the harsh lesson that sometimes mommy and daddy have to put other priorities in front of tucking them into bed every night. They know that I am mortal. This is more than a child that age deserves to go through.
Don't get me wrong, I do not feel guilty about this. It is not my fault. It is Cancer. That word, Cancer, has just become more and more evil to me.
I've got two more days here. Dad and I are having a great time. We went out for a meal today, This was first for me in months. Frankly, it was bit too much. Tomorrow Aunt Judy and Uncle Peter are coming to visit and I am really looking forward to seeing them both. I don't have to go anywhere and am looking forward to that.
The battle is not over, It is great news that I get to go home, Once I am discharged, I will have to return to Stanford weekly to visit the doctor. I don't think I'll be able to make that trip on my own any time soon, so I will be looking for volunteers to do the trip with me. Let me know if you might be interested.
Today I walked the one block to the ITA using a very little 02 (2.5L). When I got there I went off of 02 and they checked my saturation. It is at 96% which means that my lungs are recovering. The doctors told me when I got to that level I would be ready to go home. So the plan is that after my appointment at 7:00AM on Tuesday, if everything is still going good, I will be discharged home!
I am, needless to say very happy about this. But there are other feelings as well. I am nervous, I have felt this way every time I have graduated to a new level; when I left the ICU and when I moved to the apartments. I wonder how I will perform. I am still really weak. I am walking, and in many ways better than when I went in to the hospital. I still have lots of fatigue. I am still dependent on help from others. I can hardly wait until I am completely self sufficient to the point where I can drive, or go out by myself. I know, I know, it will come in time.
There is more. I am going home after a long absence. Things have changed, my home is different. My family has been through a real trial. The Chickenhawk has been through every bit of hell that I have and then some more. She has managed a household, the schedule of 5 and 7 year old girls, and the volunteer schedule of 120 people. She did all this while being my primary caretaker for the last 8 months which means that she has not only been caring for me in every way thinkable. Not only that but she has been my advocate, she has learned as much as any non-medical professional could possibly learn about multiple myeloma, fanconi syndrome, diabetes insipidis, pneumonia, sepsis, BCNU induced pnumenitis, hematapoetics, the side effects of countless drugs, the inner workings of nursing staffs, the hierarchy of doctors in a teaching hospital, and the best food to order from hospital cafeterias, made countless trips up and down highway 80, returned many, many phone calls, and written countless beautiful email updates. All while watching her husband go from healthy athlete, partner, breadwinner and engaged loving father to a sickly walker and wheel chair bound invalid who cant muster the energy to play with his kids. It is more than anyone deserves to go through.
My daughters have started school and grown. I have seen them only once in 50 days. They no longer have the childhood comfort of knowing that mommy and daddy will always be there. They have had to learn the harsh lesson that sometimes mommy and daddy have to put other priorities in front of tucking them into bed every night. They know that I am mortal. This is more than a child that age deserves to go through.
Don't get me wrong, I do not feel guilty about this. It is not my fault. It is Cancer. That word, Cancer, has just become more and more evil to me.
I've got two more days here. Dad and I are having a great time. We went out for a meal today, This was first for me in months. Frankly, it was bit too much. Tomorrow Aunt Judy and Uncle Peter are coming to visit and I am really looking forward to seeing them both. I don't have to go anywhere and am looking forward to that.
The battle is not over, It is great news that I get to go home, Once I am discharged, I will have to return to Stanford weekly to visit the doctor. I don't think I'll be able to make that trip on my own any time soon, so I will be looking for volunteers to do the trip with me. Let me know if you might be interested.
Thursday, October 23, 2008
Update from Stanford
I guess I’ll start by bringing you up to speed. I am still at the outpatient apartments here on the Stanford campus. I go every other day to an outpatient treatment center called the ITA. They take blood and do labs to makes sure that all is well. So far everything has been just great. The thing that I am dealing with is the BCNU induced lung inflammation (BCNU is one of the Chemo’s that I had.) I am still using supplemental oxygen most of the time but am becoming less dependent on that. I am also on steroids to reduce the inflammation. The doctors have told me that they want to see me free of the O2 before they will release me home. We’ll see how long that takes; my guess is the middle or the end of next week. I had my hopes up that I would be going home this weekend based on something one of my doctors had said. That is not going to happen though. I am getting used to that sort of progress. I try not to get my hopes up too much…
The Chickenhawk drove home last night. It was time. She had planned to be here with me to the end of my stay but where that end is too vague. The girls have had a rough couple of months and we both really want them to get back to as normal a life as they can have so their mom being home with them is a priority for both of us.
My Dad flew in yesterday for a three day visit. I really think that he was planning on just visiting but the C-hawk and I quickly roped him in to being my caregiver. He has quickly, abley and willingly stepped into that role. The current plan is that he is going to stay here with me until I am discharged to home. It has been years since dad and I have spent some good time together and I am really enjoying being with him.
I am feeling better and doing better every day. Today I walked from the ITA back to the apartment. That was by far the longest walk I have done so far (about a block). I am still getting my balance and coordination back. I was really pleased when on that walk I tripped but was able to catch myself before falling. In a lot of ways I am actually getting around much better than I was before the transplant. Most of the pain that I had before is now gone. I have been able to cut back on my pain meds.
Stories of Gratitude
Way back in August or July when we were planning for my BMT we knew that I would need caregivers to be with me for the entire time I was to be in the hospital. We put the word out to my support group and a number of my friends signed up for dates. David Thomas was one of those folks. He came to stay with me for a week and wow, it was an intense week. That was the week that I was first released from the hospital to the medical apartments. That transition is pretty challenging. Logistically there is a lot of running around that needs to be done. Trips to pharmacies and grocery stores, getting key medical equipment like a walker. Luckily my Mom came in to visit during that period of time so that there were two people to do all the work. David was wonderful. He was completely and totally at my service. He anticipated my needs and provided for them while always cheerful. We talked a lot about our lives and about the world and truly built a real bond. It is a lot to ask friend to spend a day helping you paint your garage. It is a lot more to ask a buddy to spend a week waiting on you hand and foot. David’s volunteering made my life a lot better. I feel like I gained a brother and I think that David would say his experience was worthwhile.
The Chickenhawk drove home last night. It was time. She had planned to be here with me to the end of my stay but where that end is too vague. The girls have had a rough couple of months and we both really want them to get back to as normal a life as they can have so their mom being home with them is a priority for both of us.
My Dad flew in yesterday for a three day visit. I really think that he was planning on just visiting but the C-hawk and I quickly roped him in to being my caregiver. He has quickly, abley and willingly stepped into that role. The current plan is that he is going to stay here with me until I am discharged to home. It has been years since dad and I have spent some good time together and I am really enjoying being with him.
I am feeling better and doing better every day. Today I walked from the ITA back to the apartment. That was by far the longest walk I have done so far (about a block). I am still getting my balance and coordination back. I was really pleased when on that walk I tripped but was able to catch myself before falling. In a lot of ways I am actually getting around much better than I was before the transplant. Most of the pain that I had before is now gone. I have been able to cut back on my pain meds.
Stories of Gratitude
Way back in August or July when we were planning for my BMT we knew that I would need caregivers to be with me for the entire time I was to be in the hospital. We put the word out to my support group and a number of my friends signed up for dates. David Thomas was one of those folks. He came to stay with me for a week and wow, it was an intense week. That was the week that I was first released from the hospital to the medical apartments. That transition is pretty challenging. Logistically there is a lot of running around that needs to be done. Trips to pharmacies and grocery stores, getting key medical equipment like a walker. Luckily my Mom came in to visit during that period of time so that there were two people to do all the work. David was wonderful. He was completely and totally at my service. He anticipated my needs and provided for them while always cheerful. We talked a lot about our lives and about the world and truly built a real bond. It is a lot to ask friend to spend a day helping you paint your garage. It is a lot more to ask a buddy to spend a week waiting on you hand and foot. David’s volunteering made my life a lot better. I feel like I gained a brother and I think that David would say his experience was worthwhile.
Monday, October 20, 2008
Busy Busy
I am out again!!! Got out on Saturday. This time we are at different apartments right here on the Stanford Campus. The Chickenhawk is here with me and we are counting the days until I get clearance to go home!
Over the weekend Nana and Papa were troopers to bring the kids down from Coloma so we could visit with them. This was the first time I have seen the girls in 6 weeks. It was great, but bittersweet since I am not ready to go home yet... I just miss them a ton. I have a lot of time to make up with them and I am really looking forward to it.
Yesterday Ronaldo called he was in So Cal and on his way to the Bay Area. He delayed his trip home for a couple of days to come visit us in Stanford. So he is couch surfing tonight and tomorrow night. His visit is an extra special treat since it is totally unexpected and he is so great to hang out with.
I don't have a lot of time to do a long post so I am going to run now. Please know I am eager to get some more posts up in the near future so stay tuned.
Over the weekend Nana and Papa were troopers to bring the kids down from Coloma so we could visit with them. This was the first time I have seen the girls in 6 weeks. It was great, but bittersweet since I am not ready to go home yet... I just miss them a ton. I have a lot of time to make up with them and I am really looking forward to it.
Yesterday Ronaldo called he was in So Cal and on his way to the Bay Area. He delayed his trip home for a couple of days to come visit us in Stanford. So he is couch surfing tonight and tomorrow night. His visit is an extra special treat since it is totally unexpected and he is so great to hang out with.
I don't have a lot of time to do a long post so I am going to run now. Please know I am eager to get some more posts up in the near future so stay tuned.
Wednesday, October 8, 2008
Stories of Gratitude
I awoke again at 3AM this morning with thoughts of gratitude. They didn’t keep me awake like they have in the past but they were there. It is making me struggle; There are so many people that have done so many wonderful things to help me and my family out, I don’t know how to ever acknowledge, let alone thank everyone in a meaningful way. I want to start writing about some of the wonderful gifts that we’ve received but I am afraid; since I am so limited in strength, internet connection and just plain time and memory/ brainpower that I won’t get to everyone. I won’t be able remember everything. I will leave people out, I will hurt feelings. That is my concern. I just don’t think it is a big enough concern to keep me from writing about all the good. What do you think?
I am going to start telling specific stories of how friends have stepped up, joined in the fight and as a result have moved closer to me. I do this because I can’t let it go. I’ve got to write the stories of how acquaintances became dear friends and how dear friends became family. Unfortunately, I am not going to be able to remember everything. Important loved ones giving amazing gifts are going to be left out because I am human. I’m sorry for that but I just have to start telling some of my Stories of Gratitude (SOG).
Auntie Chris, one of the Chickenhawk’s four sisters has sent me at least one get well card a week since last February. Her cards seem to find me wherever I am (even in the hospital) and they never ever fail to cheer me up when they arrive. A card a week… I often wonder if she takes a lunch break every Tuesday and goes to pick out this week’s special card, or if she goes to hallmark once a season and buys all the get well cards on the rack and just saves them up to send weekly. Either way, they sure do cheer me up.
The cards, however, are small potatoes compared to the real help she has given us. Back in late June when I was first starting the BMT process. We had a major caretaker’s scheduling snafu. I was on my way in to the hospital with infections and complications and we needed an extra adult hand around the house to help take care of things. Like a true blue hero sister Auntie Chris dropped everything and flew up from southern CA to run our girls lives for a week while the Chickenhawk took care of me. We had no worries about the kids they were in really good, loving hands. Thanks Auntie Chris.
Quick Update: I am getting out of the hospital today and moving to "outpatient" status. I will be living in temporary housing near the hospital and going in for daily infusions of whatever I need to keep the healing going. This is a major graduation. I have been in the hospital since September 5th. Today will be the first time I've been outside in all that time.
David is my caretaker right now and Granny is visiting. More details soon. I am recovering well. I am ready for the transition but a little nervous.
I am going to start telling specific stories of how friends have stepped up, joined in the fight and as a result have moved closer to me. I do this because I can’t let it go. I’ve got to write the stories of how acquaintances became dear friends and how dear friends became family. Unfortunately, I am not going to be able to remember everything. Important loved ones giving amazing gifts are going to be left out because I am human. I’m sorry for that but I just have to start telling some of my Stories of Gratitude (SOG).
Auntie Chris, one of the Chickenhawk’s four sisters has sent me at least one get well card a week since last February. Her cards seem to find me wherever I am (even in the hospital) and they never ever fail to cheer me up when they arrive. A card a week… I often wonder if she takes a lunch break every Tuesday and goes to pick out this week’s special card, or if she goes to hallmark once a season and buys all the get well cards on the rack and just saves them up to send weekly. Either way, they sure do cheer me up.
The cards, however, are small potatoes compared to the real help she has given us. Back in late June when I was first starting the BMT process. We had a major caretaker’s scheduling snafu. I was on my way in to the hospital with infections and complications and we needed an extra adult hand around the house to help take care of things. Like a true blue hero sister Auntie Chris dropped everything and flew up from southern CA to run our girls lives for a week while the Chickenhawk took care of me. We had no worries about the kids they were in really good, loving hands. Thanks Auntie Chris.
Quick Update: I am getting out of the hospital today and moving to "outpatient" status. I will be living in temporary housing near the hospital and going in for daily infusions of whatever I need to keep the healing going. This is a major graduation. I have been in the hospital since September 5th. Today will be the first time I've been outside in all that time.
David is my caretaker right now and Granny is visiting. More details soon. I am recovering well. I am ready for the transition but a little nervous.
Monday, October 6, 2008
of caretakers, timing, gratitude, and life.
It is already 4:30 I cant believe how much it seems like I do in one day. Of course I am moving at the speed of an 80 year old. There is so much that I have to do in a day. Most of it is daily living stuff that is not worth writing about except to say how long it takes me to get things done. My body is slow and swollen from weeks of lying in a bed. My mind is often numb from a feeling of hypoxia. For about a week I have been back on the BMT unit. During that week one of the goals has been to get my body functioning on its own. A big challenge right now is to get my heart rate, blood oxygen content, and blood pressure in sync so that I do not feel short of breath as I move around the room or even just sit in the bed.
I have been waking up at 3 AM and having trouble getting back to sleep. Why? Because I am overwhelmed with positive feelings; I am coming home, eventually. Don’t get all excited there is no date set. I just can feel it coming. I can hardly wait to be at home with my girls, I miss them very much. The thought of coming home, and recovering, actually recovering is so wonderful that I can hardly stand it. For the last year it seems like I have had nothing but bad news. Every time I talk to a doc I brace myself for bad news. But lately I am allowing my guard down. They have been giving me good news: kidney function is looking good, the bone marrow transplant is working. More importantly, my body is feeling better. We won’t know how much cancer was killed through the process until I am about 100 days into it. So no real numbers yet. But the bottom line is that I feel great.
Today is Monday and I have just finished two great days in a row. A great day is when I feel like I am making progress towards recovery. The progress is always that frustrating two steps forward one step backward. The big challenge that I face is to keep my attitude positive when I hit the backward step moments.
That is where my caretakers are such a big help. Through all of this I have had someone by my side. Katie, Brother Billy, Adam, The Chickenhawk, and currently David have been here, by my side helping me to keep head straight like the bars that surround the bumper cars .
There have been various phases in the last month of hospital stay earlier when I was really sick and hallucinating the C/H was there for that. The next phase is when I was just really really sick and getting worse, Dr. Katie was here for that. Then there was the phase where I went to the ICU and started to s l o w l y get better, brother Billy was here for that. Then Adam came for the end of the ICU stay where I woke up from a couple of weeks of fighting for my survival to find a world that dared to go on without me. Now David is with me. Soon I will be moving out of the hospital and into local outpatient apartments where I will be out of the warm, cozy hospital bubble. Each of the care takers seemed, in retrospect to have the perfect timing for dates that they commited to compared to what actually happened. I am so, so grateful to them for the love care that they have shown me that I don’t know what to do other than accept the love, turn it around and pay it forward.
I have been waking up at 3 AM and having trouble getting back to sleep. Why? Because I am overwhelmed with positive feelings; I am coming home, eventually. Don’t get all excited there is no date set. I just can feel it coming. I can hardly wait to be at home with my girls, I miss them very much. The thought of coming home, and recovering, actually recovering is so wonderful that I can hardly stand it. For the last year it seems like I have had nothing but bad news. Every time I talk to a doc I brace myself for bad news. But lately I am allowing my guard down. They have been giving me good news: kidney function is looking good, the bone marrow transplant is working. More importantly, my body is feeling better. We won’t know how much cancer was killed through the process until I am about 100 days into it. So no real numbers yet. But the bottom line is that I feel great.
Today is Monday and I have just finished two great days in a row. A great day is when I feel like I am making progress towards recovery. The progress is always that frustrating two steps forward one step backward. The big challenge that I face is to keep my attitude positive when I hit the backward step moments.
That is where my caretakers are such a big help. Through all of this I have had someone by my side. Katie, Brother Billy, Adam, The Chickenhawk, and currently David have been here, by my side helping me to keep head straight like the bars that surround the bumper cars .
There have been various phases in the last month of hospital stay earlier when I was really sick and hallucinating the C/H was there for that. The next phase is when I was just really really sick and getting worse, Dr. Katie was here for that. Then there was the phase where I went to the ICU and started to s l o w l y get better, brother Billy was here for that. Then Adam came for the end of the ICU stay where I woke up from a couple of weeks of fighting for my survival to find a world that dared to go on without me. Now David is with me. Soon I will be moving out of the hospital and into local outpatient apartments where I will be out of the warm, cozy hospital bubble. Each of the care takers seemed, in retrospect to have the perfect timing for dates that they commited to compared to what actually happened. I am so, so grateful to them for the love care that they have shown me that I don’t know what to do other than accept the love, turn it around and pay it forward.
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