Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

Get a playlist! Standalone player Get Ringtones

Saturday, September 5, 2009

Getting the process down


I think this hospitalization has gone as well as it possibly could.
I’m not just talking about the care I’ve received this time, which has been relatively flawless.
That has gone fabulous.
I’m saying it’s gone as well as possible as whole, primarily with transitioning Xander, who really should never have to deal with such adult issues and losses at his age.
He should just be hanging out worrying about if he’s the best at math, learning to read, and what we’re going to do for fun or who he is going to hang out with.
We finally, after, 3.5 years, have the emergent transition down.
When I realized I had to go to the ER I called my parents who came to our house.
Jon and I left for the ER and my parents took care of Xander. He fell asleep easy, snuggling with Nana. He must have felt generally safe and secure.
Except, He started sleep walking, following nana everywhere in an attempt to make sure she didn’t leave, which is a very clear obvious sign of anxiety about being abandoned and left without care. I think this hospitalization has gone as well as it possibly could.
I’m not just talking about the care I’ve received this time.
That has gone fabulous.
I’m saying it’s gone as well as possible as whole, primary with transitioning Xander, who really should never have to deal with such adult issues and losses at his age.
He should just be hanging out worrying about if he’s the best at math, learning to read, and what we’re going to do for fun or who he is going to hang out with.
We finally, after, 3.5 years, have the emergent transition down.
When I realized I had to go to the ER I called my parents who came to our house.
Jon and I left for the ER and my parents took care of Xander. He fell asleep easy. He must have felt generally safe and secure.
Except, He started sleep walking, following nana everywhere in an attempt to make sure she didn’t leave, which is a very clear obvious sign of anxiety about being abandoned and left without care.
He almost went outside to start to follow her home when Jon arrived back from the hospital.
Jon and I generally opt that if things are going relatively well with me (i.e. I’m not dying) he goes home so X can wake up to him.
He takes Jon’s presence as a sign things are going well, and Jon stays to get him off to school.
The first day I was gone X had a little trouble leaving Jon.
When he got to his classroom he apparently walked right up to Mrs. T. told her what happened, crawled in her lap, and cried. After that he did okay.
We’re so lucky we have Mrs. T, who is X’s teacher but also a friend. X is so lucky to be surrounded by people he knows are friendly and love him.
Yesterday was not so easy, but he had come to see me the evening before.
We’d hoped this would reassure him I was doing fine, and I think it did. It just made the transition to school knowing I was sick here difficult. He didn’t want to leave his family.
We’ve made the decision that the structure of school is best.
We can’t be pulling him out to hang out at the hospital everytime I need to be admitted.
It’s not what would be best for him in the long run. What’s best is having structure and allowing him to have as normal a childhood as possible.
He is still going to the fair today. He’s going with my parents so Jon can come hang out with me at the hospital.
He was so excited about the fair, seeing the cows (especially Beaudry’s), and playing games. We want him to know he is still going to have those god things he enjoys no matter what happens to me.
He almost went outside to start to follow her home when Jon arrived back from the hospital.
Jon and I generally opt that if things are going relatively well with me (i.e. I’m not dying) he goes home so X can wake up to him.
He takes Jon’s presence as a sign things are going well, and Jon stays to get him off to school.
The first day I was gone X had a little trouble leaving Jon.
When he got to his classroom he apparently walked right up to Mrs. T. told her what happened, crawled in her lap, and cried. After that he did okay.
We’re so lucky we have Mrs. T, who is X’s teacher but also a friend. X is so lucky to be surrounded by people he knows are friendly and love him.


Apparently, however, due to privacy laws, I am not allowed to receive a phone call from the school nurse notifying me that there is a contagious infection (ie strep or H1 flu).



I think this is a prime example of privacy laws gone too far.



The law has now extended to idiocy, not only for me, but for everyone.



Mass. is looking into legislation that people who will readily infect others with H1 be quarntined due to the possible of a pandemic, in NH an immuno-compromised cancer patient can't get a phone call that one of the most dangerous flus on earth ever is been sitting next to her son.



Think this may be going overboard, but anyway. . .
Yesterday was not so easy for the poor guy, but he had come to see me the evening before.
We’d hoped this would reassure him I was doing fine, and I think it did. It just made the transition to school knowing I was sick here difficult.



We have always, and still, try to have X do fun things at the hospital so he associates it with pleasurable experiences.



Dartmouth has a great campas and the playground has been updated! Hue Highlight for the little man. We hope it helps him feel secure that I'm safe in a good place while he is away.



In the am, He just didn’t want to leave his family.
We’ve made the decision that the structure of school is best.
We can’t be pulling him out to hang out at the hospital everytime I need to be admitted.
It’s not what would be best for him in the long run. What’s best is having structure and allowing him to have as normal a childhood as possible.



The only information I got about the day though was good. He played basketball against 2 kids and still scored a basket. C had to tackle him to get the ball away he was beating them so bad.
He is still going to the fair today. He’s going with my parents so Jon can come hang out with me at the hospital.
He was so excited about the fair, seeing the cows (especially Beaudry’s), and playing games. We want him to know he is still going to have those god things he enjoys no matter what happens to me.



The beaudry's show him the inner workings. They also partly own Walpole Creamery (A local ice cream factory) so he has gotten to see the entire process of how food goes from cow to cartoon.



I always thought this was a normal childhood lesson.



I think it's normal for country farm people like me, not so normal for anybody else.



For everybody else, it's a cool lesson.

No comments: