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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Thursday, October 8, 2009

Let the Gang Wars Begin

Let the territorial gang fights begin!
And I thought the problem would be between Dana Farber and DHMC sharing a patient during active treatment back and forth.
So far (knock on wood) this hasn’t been a problem.
I have several fabulous doctors on the case that care more about what is in my best interest than about their egos, and this is why my hometown lymphoma dream team will kick O’s ass.
There would be no patient to fight over if I’m dead people, am I right? Or am I right?
But yes, gangland still exists in hospitals.
Silly me, how could I have forgotten how specialists ram heads.
For example say my three man lymphoma dream team got together on my behalf and decided I need a core biopsy to determine the cause of my pneumonia. The benefit of possibly knowing what could be causing these severe reoccurrences of pneumonia outweighed any risk of pneumothorax to the hematologists. They all know that this pneumonia could rear its ugly head ANYTIME, specifically when I am severely immune-compromised and kill me.
I agree with my doctors. I want to know what ever this bugger is in my lungs.
The radiology staff didn’t agree so much.
And what was more surprising to me is that they told me about their disagreement in no uncertain terms.
DAMN. I wasn’t trying to start a fight. I was just trying to stop this pneumonia once and for all.
The radiologist, as sweet as he is but not knowing the entire case, was perfectly comfortable advising me that with such a small area of density, and no abscess any longer at all, that it would probably be a big waste of my time getting this procedure. My pneumonia would likely resolve anyway.
Well, yes. This pneumonia will resolve itself.
But it will resolve itself without ever clearly telling us what it is that is now in my system so when it comes back, and it will, he won’t be any farther ahead of it than we were in September.
Did he ever think that maybe I was just in it for the Versed and Fentanyl? Why not spend a whole day high. Apparently I like it. The nurse was calling me “tricks” since I play games under anesthesia.
I don’t know what I say but I do know sometimes it leaves the staff blushing.
So maybe that was the whole reason I was risking pneumothorax to get a lung biopsy and my doctor’s were all in cahoots.
Who cares. They gave the order. Do it to it.
UGH. I really think patients should be left out of these conversations.
I actually had to pretend to sleep after I challenged one nurse that I wanted the procedure I was laid out on the table to get.
“Well, your doctor’s need to know they can’t have a biopsy if there is nothing there,” she said huffily.
I squeezed my eyes shut and prayed for the versed. I didn’t know it was such a touchy subject, seeing as I consented, was on the table, and was well on the table to getting the procedure my health care team determined I needed.
I just didn’t realize I was playing with two opposing teams.


JANE OWEN said...

Hey Hillary,

I do miss your post on the weekends.


Anonymous said...

I, too, really miss your posts, especially when you've been in the hospital and I don't know if you are still in, or out!! I'm hoping it's "out" and that you are relaxing in your own home.