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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Saturday, October 11, 2008

Boston is Better

The first night at the hotel went smoothly. I woke up early, probably from being trained all last week to get moving at 5 am. I didn’t have anybody coming in and poking at me then freaking out about my blood pressure, apparently the 60/40 or 70/50 range is cause for panic.
I tried to tell them I ran 90/60 during the day, so it made sense that I would drop at night, but that never stopped the ensuing chaos. Then they always insisted I was taking my metoprolol for high blood pressure. I’m not. It’s to control a rapid heart rate, but if this is what they thought, then I don’t understand why they didn’t just get rid of it.
I think beta-blockers are one of those drugs that once you’re on it, you’re on it for life. Nobody dares remove it to check what happens.
My grandfather has been taking a beta blocker since he had a heart attack at forty. He quit smoking and started exercising. At 73, he’s healthier than I am, but he’s still on his heart meds.
My hotel room feels like a college dorm. I’m in college again, with my parents.
The analogy isn’t too far off. When I went searching for transplant centers, I approached it like a college search. Where would I be happiest? Where would I be most comfortable? Where would be most user friendly? I asked these questions alongside the obvious, “Which hospital is going to give me the best possibility of survival?” and “Which hospital has the most innovative care?”
As I was running out of options, I wanted a hospital that I could get familiar with and could treat me long term if necessary.
Dana Farber beat out Sloan & Kettering mostly due to the auxillary staff. I almost beat the admitting secretary with her phone at Sloan. She rolled her eyes and told me she was having, “one of those days.”
Bitch, I’m having one of those lives, and I didn’t come three hundred miles to get attitude from some clerk.
She treated me like I was trying to break in to sloan to meet the infamous Dr. Perales. Dr. Perales was a treat, I’ll tell you that much. If my search was for the hottest transplant specialist I think I found him. He also had a cute accent, but that is not what I was looking for.
Sloan was also completely uninterested in sharing me with Dartmouth so I could head home more quickly. Dana Farber was far more accommodating. Sloan suggested I be in NY for a period of 3-6 months, and they had no housing options to offer.
I’ll probably be here in Boston 2 weeks to a month, and I can stay at the hotel for $36 a night. On Nov. 1 The American Cancer Society is also opening a 40 unit housing complex for patients. I certainly qualify, and if money were an issue, I could stay there for free.
Boston is better.

1 comment:

Frank said...

Going to college with your parents is a very funny concept. And here's a news flash for you ... although you may not believe it, I have it from an irrefutable source ... they were fun once too!! (Although the pages in that history book are a bit yellowed!! Snicker) I'll also bet they are going to remember your comments ... & remind you of them. That is the nature of the game. When X is older ... & looking to get out of bounds, you are going to be his bothersome gatekeeper ... that's when your parents will sit back, remembering your comments & pointing out that it is justice!! ;o)

And of course, I fully expect to be there to teach X how to get out of bounds ... & trust me ... I know how to color outside the lines!! So let the games begin!!

Hope you have a great day Hill ... & glad to see you are as feisty as ever.

Stay strong ... & stay positive. While you may miss your guys today ... this is a marathon ... so keep your eye on the prize.

We love you girl ... you are an inspiration ... & you remind us of what is important. You go Girl!!