Friday, May 28, 2010
City of Hope has given me a tentative "day zero" (transplant day).
On June 18th, I start oral chemo.
On June 21st I am admitted to the City of Hope to start six days of chemo designed to kill all my bone marrow and completely obliterate my entire immune system.
June 27th is day zero.
I'm excited and anxious at the same time. It's a total mixed bag.
I'll post more updates as they come.
Thursday, May 27, 2010
City of Hope has found a match for the bone marrrow transplant. After months of tests from HLA, DNA, bone marrow biopsies and blood draws (too many to count - I'm surprised I have any blood left), we finally have a match.
I have an appointment at City of Hope to start the process, which involves (you guessed it) more labwork and an appointment with the doctor overseeing the transplant process. On the 10th, my appointment will be to layout the timeline and start preparing for "day zero" (transplant day).
I don't know at this point when the transplant will be. All I know is the process starts on June 10th at 2:00.
Sunday, May 23, 2010
The first in a line of side effects from the latest "maintenance" chemo have started...
My abdomen is so swollen, I look like I'm about to give birth. I'm slowly seeing this condition get better. It should be better within about the next week.
The general "cancer pain" is a neusance, but standard pain relievers take care of that most of the time.
I'm trying not to get dehydrated at this point. After the last chemo (a month in the hospital) I was readmitted with pancreatitis (the pain was unbearable) and I was on NPO (nothing by mouth - not even water) for a few days. I got over that and was discharged. Soon after, I began vomiting and became completely dehydrated and had to undergo three days of hydration theorapy at the oncologist's office. Basically, it's just getting hooked up to the IV for infusion for three hours while you sit in a giant overstuffed leather recliner and sleep.
The results were amazing. I was human again.
I went to the ER last night with ulcerations in my eyes. Yikes! The chemo worked a new side effect into the mix this time...
I got a perscription for some steroid drops with antibiotics in them to take at home for the next few days. I can't really see, and what I can see is through a thick fog. It's as though I'm always walking around inside a thick cloud of dense smoke...
I'm taking lots of precautions, and keeping myself healthy. I'm keeping up my exercise so I don't become too deconditioned before transplant. And I'm staying away from people (I've been advised to do that).
My immunes are very low, and my risk of bleeding is very high. So I'm taking one day at a time getting stronger and healthier.
Transplant.... here I come......
My abdomen is so swollen, I look like I'm about to give birth. I'm slowly seeing this condition get better. It should be better within about the next week.
The general "cancer pain" is a neusance, but standard pain relievers take care of that most of the time.
I'm trying not to get dehydrated at this point. After the last chemo (a month in the hospital) I was readmitted with pancreatitis (the pain was unbearable) and I was on NPO (nothing by mouth - not even water) for a few days. I got over that and was discharged. Soon after, I began vomiting and became completely dehydrated and had to undergo three days of hydration theorapy at the oncologist's office. Basically, it's just getting hooked up to the IV for infusion for three hours while you sit in a giant overstuffed leather recliner and sleep.
The results were amazing. I was human again.
I went to the ER last night with ulcerations in my eyes. Yikes! The chemo worked a new side effect into the mix this time...
I got a perscription for some steroid drops with antibiotics in them to take at home for the next few days. I can't really see, and what I can see is through a thick fog. It's as though I'm always walking around inside a thick cloud of dense smoke...
I'm taking lots of precautions, and keeping myself healthy. I'm keeping up my exercise so I don't become too deconditioned before transplant. And I'm staying away from people (I've been advised to do that).
My immunes are very low, and my risk of bleeding is very high. So I'm taking one day at a time getting stronger and healthier.
Transplant.... here I come......
Thursday, May 20, 2010
I heard from a friend that this diet is agreeing with me...
I was recently hospitalized at Fountain Valley Regional for a round of "maintenance" chemo. By "maintenance", they mean that I'm completely cancer free (no signs in my blood stream, and none in the bone marrow - also, my bone marrow isn't trying to act up or produce any more cancer).
This "maintenance" was to keep the cancer from returning. About two months ago, the myelofibrosis advanced and turned into Acute Leukemia. I fell out unconsious upstairs at home, and Corless had to call 911. I was rushed to the ER at Fountain Valley Regional, where they diagnosed the Acute Leukemia. My counts were skyrocketing ( I had a cancer count of over 50% ), and they had to act fast. They admitted me, and I started my first round of chemo to try and deal with the leukemia...
The month long treatment was successful! I am completely cancer free!!!!!
I'm still dealing with the myelofibrosis, and the only cure is a bone marrow transplant. So I have to keep getting "maintenance" chemo until the transplant. City of Hope is in the final stages of securing my donor. HLA and DNA matching are complete, and they are squaring away all the final steps before transplant. I'm told transplant could be sometime as early as June.
Until then, I'm going to keep on pushing through...
I was recently hospitalized at Fountain Valley Regional for a round of "maintenance" chemo. By "maintenance", they mean that I'm completely cancer free (no signs in my blood stream, and none in the bone marrow - also, my bone marrow isn't trying to act up or produce any more cancer).
This "maintenance" was to keep the cancer from returning. About two months ago, the myelofibrosis advanced and turned into Acute Leukemia. I fell out unconsious upstairs at home, and Corless had to call 911. I was rushed to the ER at Fountain Valley Regional, where they diagnosed the Acute Leukemia. My counts were skyrocketing ( I had a cancer count of over 50% ), and they had to act fast. They admitted me, and I started my first round of chemo to try and deal with the leukemia...
The month long treatment was successful! I am completely cancer free!!!!!
I'm still dealing with the myelofibrosis, and the only cure is a bone marrow transplant. So I have to keep getting "maintenance" chemo until the transplant. City of Hope is in the final stages of securing my donor. HLA and DNA matching are complete, and they are squaring away all the final steps before transplant. I'm told transplant could be sometime as early as June.
Until then, I'm going to keep on pushing through...
Monday, May 10, 2010
The myelofibrosis has developed into acute myeloid leukemia. I fell out unconsious at home, and Corless had to call 911. i had completely fallen unconsious on the floor upstairs. Corless was home, thank God, but she couldn't wake me. She called 911, and I was rushed to Fountain Valley Regional ER, where they discovered my cell counts were skyrocketing and the myelofibrosis had developed into acute leukemia. They had to act fast, so I was admitted and that began the journey through the first round of leukemia treatments with chemo...
My mother was in town from Hawaii, so she cancelled her return flight and stayed with me most of the time in the hospital. My mother was at the hospital in the mornings soon after I woke up, and left at night most of the time. She and Corless took turns baby sitting me. It was nice. I really appreciate them being there. It was comforting, even if they did just did stare at me while I was unconsious most of the time...
I was in the hospital for a month with acute leukemia. That chemo did terrible things to me. I lost 45 pounds, all my hair fell out all over my entire body, my nails turned black, it stripped away my stomach lining and the lining of my intestines, sores in my stomach, throat and mouth and on and on…. The PAIN was probably the worst part. And there reached a point where I was throwing up every day all day long. There were times when they put me on N.P.O. – that’s nothing by mouth, not even water for several days. I was unconscious most of that month. There were times Corless came to visit (4 or 5 hours at a time) and I didn’t even know she had come.
I was quarantined and isolated. I couldn’t leave the room, and anyone who came in had to suit up with face masks and a bunch of paper cloths. I couldn’t have any fresh food, only cooked, no flowers, no books, no kids (I didn’t see my kids for a month – except through the window – they let me sit by the window and wave to them outside – it still makes me want to cry). When the nurses treated me, they wore masks, hats, paper gowns and rubber gloves (the dark green industrial up to your elbow type). It was to protect THEM, not me, from the chemo.
Then, slowly but surely, I got better. They let me go home. It took another three weeks to get back to normal (sort of). And now that I’m feeling so much better, I’m going in again for a 10 day “maintenance” chemo on Friday. I’m told it’s not nearly as radical as the first time, so I should get through it relatively unscathed.
I’m having a bone marrow transplant sometime in June. I’ll be at the City of Hope for a month or two. They are in the final stages of matching my donor through HLA and DNA testing etc… it’s been a long and complicated process, but I’m almost done. I can’t wait to get back to my normal life, feeling healthy again and pooping like a real boy…
My mother was in town from Hawaii, so she cancelled her return flight and stayed with me most of the time in the hospital. My mother was at the hospital in the mornings soon after I woke up, and left at night most of the time. She and Corless took turns baby sitting me. It was nice. I really appreciate them being there. It was comforting, even if they did just did stare at me while I was unconsious most of the time...
I was in the hospital for a month with acute leukemia. That chemo did terrible things to me. I lost 45 pounds, all my hair fell out all over my entire body, my nails turned black, it stripped away my stomach lining and the lining of my intestines, sores in my stomach, throat and mouth and on and on…. The PAIN was probably the worst part. And there reached a point where I was throwing up every day all day long. There were times when they put me on N.P.O. – that’s nothing by mouth, not even water for several days. I was unconscious most of that month. There were times Corless came to visit (4 or 5 hours at a time) and I didn’t even know she had come.
I was quarantined and isolated. I couldn’t leave the room, and anyone who came in had to suit up with face masks and a bunch of paper cloths. I couldn’t have any fresh food, only cooked, no flowers, no books, no kids (I didn’t see my kids for a month – except through the window – they let me sit by the window and wave to them outside – it still makes me want to cry). When the nurses treated me, they wore masks, hats, paper gowns and rubber gloves (the dark green industrial up to your elbow type). It was to protect THEM, not me, from the chemo.
Then, slowly but surely, I got better. They let me go home. It took another three weeks to get back to normal (sort of). And now that I’m feeling so much better, I’m going in again for a 10 day “maintenance” chemo on Friday. I’m told it’s not nearly as radical as the first time, so I should get through it relatively unscathed.
I’m having a bone marrow transplant sometime in June. I’ll be at the City of Hope for a month or two. They are in the final stages of matching my donor through HLA and DNA testing etc… it’s been a long and complicated process, but I’m almost done. I can’t wait to get back to my normal life, feeling healthy again and pooping like a real boy…
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