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."

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Monday, August 15, 2011

I'm Going back: It's NYC for Me

My body has revolted. It has ruined three perfectly good immune systems causing me years of frustration and pain. Now, this body knows what it wants. It wants a change. It wants a whole new fresh approach. It wants something new. It wants SGN- 35. It wants to get back to NYC. It wants....... The yankees!! 
I've done a 360 in these past 5 years. 
I am back with NYC. I moved out Aug 2004 and couldn't stay away.
 I'm back, officially, for treatment there every 3 weeks at NYU with Dr. O'Connor on 34th St.
I'm also back with my homegirls from college. I'm at ease. I'm relaxed about this decision. Our trip down went near perfect (as near perfect as forcing an 8 year old to sit still for 5 hours). X was amazingly well behaved. He's such a young gentlemen.
Maybe being back in my second home with my friends will help me remember all the good times I had, we had. 
It's on, I'm going back Weds. to spend the night, getting an hour treatment Thurs., then staying until Fri for "observation."
I really hope "observation" means meeting up with friends.  I'm feeling confident. 
We were able to hit up The Bronx Zoo on Weds, free day.
My favorite animals at the Zoo were people. People of all shapes, sizes, colors, ages, with a even more diverse array of accessories and languages. 
Yeah, I liked people watching as much as I liked the apes, who decided to be our dinner entertainment. 
We found a quiet shaded table in the corner thinking we'd found a piece of paradise on free day. 
What came 5 minutes later was chair side gorilla play, which a loud group of young girls decided to scream about bring legends of attention around us.
There goes the peace. 
Come Weds next week stay at "The Shell Horn." My  infusion is 1pm Thurs. I'm taking Sgn-35, an Antibody drug conjugate to the CD 38 marker on hodgkin cells. This medication targets the cancer with a chemo warhead "aurostatin" straight to the cell with little toxicity!!
It can avoid toxicity because it targets only the malignant cells, not the healthy ones. YAY!
It's given every 3 weeks by IV over an hour with the most common, problematic side effect being neuropathy!
Ha! I've had that for years, but I've also heard that story before.
This time I pray it's true. Please, everybody pray too. This could put me into remission for a while.
It's amazing how one facility has nothing new but bad news and another, 250 miles away, is the perfect fit.
The FDA approves aurostating aproval sep 1. 
I locked a slot in  an EAP trial where fda makes drugs in the approval process available to market. 
The trial started at noon on Thurs! My appt. was at 1pm.
There are other things easing my mind: Hope lodge on 34th W. Side is FREE! 
I don't quite get how or where to park yet. Three days in the city would be ridiculous.
I did forget my medicare card and DPOA paperwork. NYU has Jon and Nancy as contacts. 
This hospital is much more friendly than Sloan, which had me crying at registration after I realized my wallet was MIA.
 In all the stress and the chaos of that trip in April 2008 when I sought my first 2nd opinion, the stress of me getting two kids together and overseeing three adults and trying to coordinate a play date with my bff and train times, I dropped my wallet in the hotel room. 
I didn't notice until I was registering. 
I thought I'd been robbed. 
I cried and the registrar looked me straight in the eye, smacks her gum and says, "you need to pay $800 to see the doctor as a self-pay." 
The waterworks came but her stone face didn't change. 
Dad tried to come to the rescue, but I wouldn't allow my Dad to put it on his card. We'd never see it back. 
I got my insurance numbers, but no card. The receptionist's nice deed was letting me through with those and a promise to fax copies later. Then when I was leaving, she was complaining loudly about how, "it was one of those days."
That chick has no idea what one of those days is like if she's denying cancer patients treatment.
This receptionist was a 100x better. She kept reassuring me when I realized my medicare card was missing! Imagine that. 
 NYU didn't have to do too much persuading. They had me at "valet." If I come in solely for an appt. it costs $20 for 8 hours to park. That is an NYC deal!


Anonymous said...

GO YANKS!!!!! Justin may be gone, but I knew there was a reason I never turned back!! :) LOL
You are loved (and not just because you're a Yankees fan again ;) )

Barbara said...

It's nice how the sun is pouring down on you three on this photo, this just _has_ to be a happy omen! Best of luck for Thursday! And I hope you 'll feel so good that you can sneak out to meet your friends ;)

Karen said...

My son was on SGN-35 for 12 months at NYU/O'Connor. It worked quite well for him with fatigue being his primary side effect. He was able to continue to work full time. Hope it works for you as well!!

Anonymous said...

Good luck with your treatment this week.I keep you in my prayers everyday.

Valerie said...

Lookin' good, Hill!! I love to see your smiling face.