Thursday, September 23, 2004
I am a little late in posting a blog, but the next step in grief must be exhaustion. I have been so tired the last couple of weeks. It doesn’t matter that I go to bed early. I suspect most of my malaise is the season changing, that it is darker in the morning, but it does seem to get worse after the counseling sessions and any event that is tied to John. For instance on Sunday I hosted an open house for the medical staff at Jackie’s house. It was really a special day, not just because I was surrounded by people who loved John, but Sunday I was able to meet John’s donor. I have not been able to stay awake since.
The donor as I have said before turns out to live in Napa, instead of the East Coast. He is a lovely man who knows he did the right thing in helping prolong John’s life. He did feel guilty that his stem cells did not cure John, but I hope between Dr. Wolf and I he understands some of the idiosyncrasies of leukemia. Jim, the donor, questioned why the NMDP insisted he have another physical when he was willing to waive the consequences of his health knowing from his previous experience how easy it was for him to donate. The physical requirement delayed the donation for two weeks. Jim wondered if John was given the cells two weeks earlier would the fungus have gotten such a grip on John. Dr. Wolf explained that the fungus was most likely present for a while in John’s system and even without the relapse because of John’s compromised immune system would have probably caused John’s death anyway. I do wonder myself if John had two weeks of growing a new immune system would his body be able to tolerate some of procedures the doctors needed to do to make John do better. After all recall that ultimately it was John’s physical body that failed, not John’s will to live. The last week John was alive and the cardiologist wanted to take the fluid around his heart off (it would be done with a long needle through his chest), so that it wouldn’t have to work so hard to beat. The cardiologists discovered they could not risk the procedure because not only did John not have an active immune system, but also no platelets to stop the bleeding. With Jims cells growing quite possibly there would at least of been some platelet hanging around. All I know is the Jim is a remarkable man. Jen is going to help me post a couple pictures of the gathering.
The hardest parts of this process at times is the anxiety no one will miss or mourn John as much as I do. When I sent invitations to this gathering I really had to set my mind that the amount of people who came did not matter, but the people who came were the people that John wanted there. By letting go of the constant worry that the open house would be a success in the end I decided what ever unfolded was exactly what it was suppose to be and it was really lovely. John’s favorite nurses were there, and most importantly Dr. Wolf was there.
In a couple of weeks the boy Scouts are planning to plant a redwood tree in Memorial park honoring John. Again the worry begins will anyone care enough about John to attend, then I had to reel these thoughts in and know if it is just me and the a few Boy Scouts it will be exactly as it is suppose to be. It seems like the ceremony, and believe me Boy Scouts love ceremony, will be really nice. Mostly however I like the idea of a place where outwardly John will always be since we are going to have a bronze plaque made stating the tree is planted in John’s memory. I never knew how important the need for a public display would be until it was proposed. I know I struggle with am I wanting this for my own attention, since John never seemed to care about public attention, but I am coming to the conclusion it must be part of our biological human make up because since the beginning of time we have been having public markings of the people who passed with headstones. So not only does the redwood tree seem right, but the plaque and a place to physically go seems right too. The biggest question right now is am I going to be able to give a few of John’s cremains and add them to his Boy Scout fire ashes? Right now I am feeling ready, but when the day comes it may be a different story.
Last thought, finally. The last couple weeks I have been feeling really angry that John’s friends were forgetting John that John was going to be there statistical friend that dies young (after all we all have one people in our memory that died young). At this meeting I mentioned that I may add the blue string I have been wearing since John’s memorial to the ashes and James (John’s best friend and roommate) who was at the meeting to help plan the tree planting said, “I will never take the bracelet off”. So my fears and worry of John being forgotten by his friends was off base, which is a good life lesson for me to learn.
The donor as I have said before turns out to live in Napa, instead of the East Coast. He is a lovely man who knows he did the right thing in helping prolong John’s life. He did feel guilty that his stem cells did not cure John, but I hope between Dr. Wolf and I he understands some of the idiosyncrasies of leukemia. Jim, the donor, questioned why the NMDP insisted he have another physical when he was willing to waive the consequences of his health knowing from his previous experience how easy it was for him to donate. The physical requirement delayed the donation for two weeks. Jim wondered if John was given the cells two weeks earlier would the fungus have gotten such a grip on John. Dr. Wolf explained that the fungus was most likely present for a while in John’s system and even without the relapse because of John’s compromised immune system would have probably caused John’s death anyway. I do wonder myself if John had two weeks of growing a new immune system would his body be able to tolerate some of procedures the doctors needed to do to make John do better. After all recall that ultimately it was John’s physical body that failed, not John’s will to live. The last week John was alive and the cardiologist wanted to take the fluid around his heart off (it would be done with a long needle through his chest), so that it wouldn’t have to work so hard to beat. The cardiologists discovered they could not risk the procedure because not only did John not have an active immune system, but also no platelets to stop the bleeding. With Jims cells growing quite possibly there would at least of been some platelet hanging around. All I know is the Jim is a remarkable man. Jen is going to help me post a couple pictures of the gathering.
The hardest parts of this process at times is the anxiety no one will miss or mourn John as much as I do. When I sent invitations to this gathering I really had to set my mind that the amount of people who came did not matter, but the people who came were the people that John wanted there. By letting go of the constant worry that the open house would be a success in the end I decided what ever unfolded was exactly what it was suppose to be and it was really lovely. John’s favorite nurses were there, and most importantly Dr. Wolf was there.
In a couple of weeks the boy Scouts are planning to plant a redwood tree in Memorial park honoring John. Again the worry begins will anyone care enough about John to attend, then I had to reel these thoughts in and know if it is just me and the a few Boy Scouts it will be exactly as it is suppose to be. It seems like the ceremony, and believe me Boy Scouts love ceremony, will be really nice. Mostly however I like the idea of a place where outwardly John will always be since we are going to have a bronze plaque made stating the tree is planted in John’s memory. I never knew how important the need for a public display would be until it was proposed. I know I struggle with am I wanting this for my own attention, since John never seemed to care about public attention, but I am coming to the conclusion it must be part of our biological human make up because since the beginning of time we have been having public markings of the people who passed with headstones. So not only does the redwood tree seem right, but the plaque and a place to physically go seems right too. The biggest question right now is am I going to be able to give a few of John’s cremains and add them to his Boy Scout fire ashes? Right now I am feeling ready, but when the day comes it may be a different story.
Last thought, finally. The last couple weeks I have been feeling really angry that John’s friends were forgetting John that John was going to be there statistical friend that dies young (after all we all have one people in our memory that died young). At this meeting I mentioned that I may add the blue string I have been wearing since John’s memorial to the ashes and James (John’s best friend and roommate) who was at the meeting to help plan the tree planting said, “I will never take the bracelet off”. So my fears and worry of John being forgotten by his friends was off base, which is a good life lesson for me to learn.
