I'm excited.
I don't know if it's going to come through in my posting, because I am definitely containing my excitement.
I don't want to jinx it.
Every time for the past five years that I have wanted to do something, that I have made plans, that I have been truly excited, the event gets canceled, or better yet, cancered.
I hate disappointment. It's one of the world's worst emotions, and emotionally, it's where I live.
Disappointmentville.
But not today, and hopefully not this weekend, we have family plans to go to NYC and I'm excited!! It's supposed to be gorgeous.
Ever since X was born, I have always wanted to travel to New York with Jon and Xander.
But Traveling back to the city was something I thought I would never be able to do again at one point.
I didn't have the lung capacity or the muscular strength to walk from the hotel door to the room.
Getting out again would be even more difficult, but not now, not today, not this moment.
I've been slowly working out, working up my tolerance.
I've rested up this week in anticipation.
I've gone back to my anal retentive travel planner ways and have made a little itinerary of possibilities.
We leave at 4pm this afternoon.
I've scheduled an appointment with a chinese practitioner, Dr. Wong, who I hope is so right, at the recommendation of Dr. Ralph Moss for 8:30 pm tonight.
That's almost immediately upon arrival. At first it'd been scheduled for 10pm.
I hope he can add food or supplements to my regimen that will support the healthy growth of my immune system and my overall health.
I do have to proceed with caution whenever adding anything to my body. I am so sensitive to everything.
I am getting the medications to retry a complementary regimen I did in the spring/summer of 2008.
During this period I was taking a treatment holiday, searching for second opinions, and deciding where to proceed (Dana Farber or Memorial Sloan and Kettering) for my second transplant, an allogenic transplant from an unrelated donor.
I decided I had nothing to lose and purchased a regimen recommended by a naturopath in NYC that had come from Germany. Nothing was explained to me how it would work. I did some research myself, but couldn't find much.
I took it anyway only to discover that between PET scans, with out any other intervention, my tumor had markedly shrunk.
It's time to repeat that regimen.
I'm getting a PET scan May 4th to address the effectiveness of the bendomycine and then a meeting with my heme team on the 9th, or maybe I have that backwards, who knows.
After that I'll begin to introduce The C Regimen. That's what I'll call it.
NYC will not be all work and no fun. It won't be all health.
We're going up the Empire State Building using the friends and family elevator! We get to cut the line! Then we'll make it to the restaurant MARS2112 where X is excited to meet some aliens and ask them questions. First, he wants to know how they pee. Then he asked me if he could tackle them.
I'm definitely raising a boy.
Saturday we're going to see a Yankees game, hoping to go early for batting practice. This will be X's first major league game, and I get to be there!
Hopefully afterwards I'll be able to see some friends from college, but I'm trying to keep it low key even though there are a thousand things I could try to squeeze in.
I'm just so excited.
I don't know if it's going to come through in my posting, because I am definitely containing my excitement.
I don't want to jinx it.
Every time for the past five years that I have wanted to do something, that I have made plans, that I have been truly excited, the event gets canceled, or better yet, cancered.
I hate disappointment. It's one of the world's worst emotions, and emotionally, it's where I live.
Disappointmentville.
But not today, and hopefully not this weekend, we have family plans to go to NYC and I'm excited!! It's supposed to be gorgeous.
Ever since X was born, I have always wanted to travel to New York with Jon and Xander.
But Traveling back to the city was something I thought I would never be able to do again at one point.
I didn't have the lung capacity or the muscular strength to walk from the hotel door to the room.
Getting out again would be even more difficult, but not now, not today, not this moment.
I've been slowly working out, working up my tolerance.
I've rested up this week in anticipation.
I've gone back to my anal retentive travel planner ways and have made a little itinerary of possibilities.
We leave at 4pm this afternoon.
I've scheduled an appointment with a chinese practitioner, Dr. Wong, who I hope is so right, at the recommendation of Dr. Ralph Moss for 8:30 pm tonight.
That's almost immediately upon arrival. At first it'd been scheduled for 10pm.
I hope he can add food or supplements to my regimen that will support the healthy growth of my immune system and my overall health.
I do have to proceed with caution whenever adding anything to my body. I am so sensitive to everything.
I am getting the medications to retry a complementary regimen I did in the spring/summer of 2008.
During this period I was taking a treatment holiday, searching for second opinions, and deciding where to proceed (Dana Farber or Memorial Sloan and Kettering) for my second transplant, an allogenic transplant from an unrelated donor.
I decided I had nothing to lose and purchased a regimen recommended by a naturopath in NYC that had come from Germany. Nothing was explained to me how it would work. I did some research myself, but couldn't find much.
I took it anyway only to discover that between PET scans, with out any other intervention, my tumor had markedly shrunk.
It's time to repeat that regimen.
I'm getting a PET scan May 4th to address the effectiveness of the bendomycine and then a meeting with my heme team on the 9th, or maybe I have that backwards, who knows.
After that I'll begin to introduce The C Regimen. That's what I'll call it.
NYC will not be all work and no fun. It won't be all health.
We're going up the Empire State Building using the friends and family elevator! We get to cut the line! Then we'll make it to the restaurant MARS2112 where X is excited to meet some aliens and ask them questions. First, he wants to know how they pee. Then he asked me if he could tackle them.
I'm definitely raising a boy.
Saturday we're going to see a Yankees game, hoping to go early for batting practice. This will be X's first major league game, and I get to be there!
Hopefully afterwards I'll be able to see some friends from college, but I'm trying to keep it low key even though there are a thousand things I could try to squeeze in.
I'm just so excited.
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