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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Tuesday, November 18, 2008

Keeping X

Yesterday, after a night awake and zythromax for an ear infection and strep throught, X and I cuddled on the couch to watch TV.
Except, I'd forgot I'd turned down the TV to a level where it could barely be heard.
"I can't hear!!" X screamed and started to cry, "Where'd the sound go?!"
"Oh, I got it." I said, eyes half closed, and hit the remote.
"I still can't hear! I'm going deaf!" I woke up. He has had hearing loss before.
But no, not this time, in my haze I had not upped the volume and I'd convinced my son he was losing his hearing.
I was a little concerned that keeping my son and exposing myself to obvious infections was self destructive.
Being the mom I am, I just couldn't make a decision to distance myself from him.
THAT kind of decision would be biased. I am not that tough. I just can't have that type of perspective.
So, lucky me, with no long distance on the land line, I left my cell in my mom's car yesterday.
After my appointments, I slept for three hours on the way home and stumbled out of the car glassy eyed, leaving my precious lifeline and link to Dana Farber behind.
DAMMIT! As if my life was not difficult enough. It's these obnoxious oversights that will drive me the most crazy.
I tried to get the information locally, but no one wanted to give it.
This is terrible! I hated when I started feeling like people in Claremont maybe uncomfortable caring for me, but I didn't think it would spread.
Am I that sick? I don't like the feeling that people who I think are brilliant may not be comfortable treating me.
If the smartest of the smart need to refer me elsewhere does that mean I'm the sickest of the sick?
I'm going to file this under WTF.
I did, at the very least, get to talk to my old NP, ANNA.
She is a rockstar. If she could keep me as a patient, I would snatch her up and force her into cancerlebrity along with me. Dr. G could come along too.
Trust your providers people! If you don't, do not hesitate to find a new one. All providers are NOT created equal.
As far as being disowned, I think they're really just looking out for my best interest. They want me to have the very best care and the most experienced opinion I can find.
Luckily, I have the page number to DF memorized.
Yes, that's how sick I am. I have many doctor's numbers memorized. At DHMC, sometimes I'd tell the nurses the extension of my doc & NP up front.
My father paged Melissa for me, and like the lovely woman she is, she called right back.
Melissa is shy and will not allow me to post her. Just take my word for it, she is
She advised me I should keep my son, but monitor myself closely. I should keep as much space as possible from him, but she admitted she understood if this was not possible.
I was told to watch out for an increasing sore throat, if this happened get a strep culture and call immediately. I was reminded to call for a temp. over 100.5, even if it is on just one thermometer. I was also made to promise, again, that I would call with the slightest uneasiness. I promised.
My word is good. These are all things X and I can handle.

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