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

Yesterday's Appointment

I saw Melissa yesterday at Dana Farber. I had a neck CT for a node in my neck and a chest X-ray, even though my lungs were clear, because I have a cough.
On assessment, Melissa could feel the node in my neck. The bump check always goes a little like this: I say I feel a node, in this case in my neck, whoever starts rubbing behind my ears then poking with their fingertips down the mid-line of my neck.
I sit quietly, praying I just imagined what I’ve been feeling.
But, inevitably, whoever is checking me always stops short and feels a little deeper. Then they touch the neck a little more thoroughly on the other side, just to check if what they’re feeling is anatomical.
When it isn’t, they run their fingers down the opposite neck. Maybe they’re looking to see if I’m just asymmetrical? I don’t know.
Then they go back to checking the side in question. Then they go back and check both sides again.
“You could feel it.” I stated, matter-of-factly, just like I would say “You like pizza.”
“Yeeeaaahhh” is the tentative response I got. Something non-committal that says, “yes, I feel it, but I don’t know what it is and let’s hope to hell it’s not another tumor.”
“I’m going to talk to Alyea. You’re not scheduled to see him, but I like to just check in when there is a lot going on. I’ll come back when I get a preliminary read on your scan. I’ll be back later.”
“Okay” I said thinking “when there’s a lot going on?” Eeek. Do I have a problem?
It’s one thing for me to be nervous. It’s another to have it validated.
In the end, there was nothing to fear, Melissa came back and said the CT “did not appreciate a mass in your neck.”
“Well, I don’t appreciate it either,” was my first thought, but I didn’t feel like making jokes.
I’ll continue to be monitored on schedule, according to protocol.
It is possible to have previous malignant nodes that remain enlarged. The node I was worried about just happens to feel like a rock and I hadn’t noticed it before. My body is messing with me.
My antibiotic did get upgraded. I was taking Bactrim to protect me from PCP pneumonia. We got a little bit tougher and I’ll be starting levaquin due to a minor phlegmy cough that in me could progress to severe pneumonia and lung failure relatively quickly if it’s left untreated. (I wrote this last night, and this am I do have a nasty productive cough).
If feel a little sick. I just have a general malaise. I always get sick around the holidays. I have since first grade when I got pneumonia and had to miss the circus. I remember, instead, lying on the floor, watching Scrooged with my parents and crying.
I always cry when I get respiratory infections. They just make me feel so sick.
All my labs looked wonderful.It doesn’t look like I have Addison’s, but this will continue to be monitored.
I have no excuse for my craziness and lack of stress management, except the fact that when it comes to certain people in my life, I feel like I get very little support. All I want is to be taken care of right now.
I’ve always taken care of myself. The trait I was most proud of was that I was an independent, self sufficient woman. It hurts that I am not anymore. It hurts that certain others won’t adjust to what I need.
I don’t want to be made to feel badly because I am sick. I don’t want to hear I should be able to get out of bed if I don’t feel I can. I don’t want dirty looks and sighs when I want to take a nap. I need my rest.
I need to do the best I can to get better and not feel guilty about what I have to do to get there.
I’ve over extended myself trying to progress quickly. Now, I feel sick. I’m not going to do this to myself to please anybody else.
I did get to meet some cool people yesterday. I was in a social mood. I even acquired a new nickname “Hush Hush” from Kerlyne.
I was Suga Hill in college, or Hillary Chula, depending on who you are and where you’re from. I’d like to say this is because I am so sweet, and it is a little bit. A lot of girls were fighting for the “brown suga” title, but I was the only “suga” to snatch the name.
I also had a little bit of an episode (or two) at the bar or on the court. I was just looking out for my girls, but the name may be a little bit of a comparison to Sugar Ray Leonard. That’s all I’m saying.
I’ll post my videos later. I’m having a rough morning. Send some love and say some prayers for me.

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