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."

Get a playlist! Standalone player Get Ringtones

Sunday, November 29, 2009

Here's what you've been missing

I've been writing.
I have.
I just haven't been writing anything worthy, which means, I've been having trouble writing. 
I haven't been able to put my feelings in black and white. 
It's thanksgiving. I'm supposed to be thankful, right?
Isn't that the idea? Anybody.
Because I'm not. I'm pissy.
Its the same nagging lagging idea that my feelings are not justifiable. That they're some how unacceptable, or even crazier, may somehow offend someone somewhere and make me suffer even more. 
I've read about these crazy thoughts, they're called magical thinking. No one is up in my head ostracizing me because even though I'm in remission I'm more depressed than when I thought I was dying.
 Now I'm to the point where I'm rejoining life looking around and thinking "fuuuuccckkk, this is it. I still really can't breath? I survived but made it out with 33% functioning capacity of my lungs."
 I feel like a gold fish gulping for air but not getting any. 
Okay, so I have my oxygen for this and five separate antibiotics. That would be zithromax, doxycycline, bactrim, keflex and something else I can't remember bc though its prescribed, I'm not taking it.
 I think some of these have to overlap somewhere. 
I vote that Zithromax and bactrim should cover me until Tues, so that's what I'm taking.
This regimen is what happens when there are too many cooks in the kitchen. It's what the football team does when the quarterback leaves for two weeks for conferences and vacation and the running back gets H1N1 and demands that her lungs get treated with or without her "go-to" MD.
Yeah, I'm talking about Dr. G., who apparently forgot about that oath that he took out of med school never, ever to leave the office for more than one week.
Antibiotics were never my thing.
I'd ask someone to cut them back except this concoction made me sick on friday and when I called at 2;30 my np had all ready left for the weekend (yeah you're so busted anna) and I couldn't get up off the bathroom floor from throwing up sweating and gasping for breath to tell the secretary who else may be helpful (j was calling) so I did what I do so well, I knocked myself out for 24 hours. 
Yes, if any of you ever have questions about how to make yourself sleep through the pain without killing yourself, I'm your girl. I'm straight up professional of walking that fine line between overdose and comatose with purpose.
I keep reminding myself that I did get H1N1, which is bound to go down in history as the plague of 2009. Heather so kindly reminded me that I didn't die of the flu like the Dartmouth public health student.
When I tried to use this logic with one of the nurses who say me they said, Yeah. . . . but they only died because they had co-existing conditions."
Hmmmmm, was this one of those comments designed to make me feel better? Because it really didn't.
I'm pretty sure she understood what when I said, "but I had underlying conditions."
I failed to say, specifically, lung problems, which are the primary flu killer.
Then Dani, bless her soul, reminded me that it was only a week ago that I invited her over to hang out only to fall asleep mid sentence.
I really thought that was about a month ago.
Sick people time is far different than healthy people time.
Good news is, despite the fact that i can't breathe, which means I can't play sports, and my GVHD is affecting ALL my mucous membranes (Use your imagination and guess who is no longer having any sex), I do still have the ability to make my son laugh until he wets his pants.
Also, the best predictor of the future is the past and I have over come every obstacle thus far, I'm pretty confident I'm still one tough b-i-t-c-h.
Just in case I need more evidence, I'm going to trek back to Manhattan for some reminiscening on Thursday. Go-to Doc gets back and I'm seeing him on Tues., so maybe, possibly, I'll be back in fighting form by the time I'm thirty.
Here's what you've been missing lately.. . . . 
We are all lying in the gutter, but some of us are staring at the stars. I've finally gotten around to dragging myself out of this funk I've been in for the past month. Emotionally recovering from the fall has taken longer than normal. My continual lung problems have dampened my get up and go attitude. For the first time in my memory, I was questioning my ability to do activities I enjoyed. If I didn't think I could go out and do exactly what I wanted, I wouldn't go at all. That's not like the jet setter, the world is my playgroynd hill I like to be. Life isn't a spectator sport! For the past four years if I wanted to do something I would do it with the knowledge that its just as easy to be sick somewhere else as it is at home. But there is no handbook to transition back into reality after you've spent months begging for death or a cure. I had reached the point that I really thought I would die. I had let go of the world. I never wondered how I'd go around rejoining it later. Rejoining is harder than I thought. The flu didn't help with my motivation. I'm just one big case study for ptsd amotivational syndrome. I'm going to have to think about how I can overcome my funk. I think the holidays will help.
I'm finally getting back to life: I'm sitting waiting patiently for my doctor's appointment. No wonder I feel so bored and lost when I'm at home trying to figure out what I do with my time. I wait. That's what I do. The report I received from my first round of tests: pulmonary function testss concludes that my lungs are functioing at 1/3 or 1/2 the predicted capacity of any other 27 year old female. I don't breathe in right. I don't breathe out right, but I don't think these findings really matter, since I'm still excited to be breathing at all after the debaucle I've been calling my life. Doesn't this lend well to the next large political debate coming on the coat tails of reform regarding medical over spending. J woke me up during my twenty hour slumber to force me to watch a 60 minutes talking about excessive health spending in the end of life. The news program showed clearly an elderly dying man requesting not only CPR but a heart and lung transplant. Whoa, wait a minute, just what was he trying to say? 


Anonymous said...

Hey hill! I hate to say
I know you have had better day
We know that when you are down
You certainly deserve to cry and frown
But for us who watch in the distance far
And admire you with such awe
We try to taste and feel your pain
Which certainly is driving you insane
But in the big picture
Which we can’t see
Our Lord has a plan for thee
We don’t know what it is
We will have to wait
But whatever it is
It must be Great!
He has given you strength
Of a thousand men
And the shoulders of a thousand friends
So lean on us with all your might
But never give up the will to fight

Thersa said...

Hillary. Thank you for writing what I have been feeling lately. How dare I feel pissy when I have survived? So what if I have a few life-long health concerns to live with? Seriously, I am alive. Shouldn't I be thankful? Then why is it that some days I just feel pissy? We both know that nothing good comes from it, right? So what? Feeling pissy doesn't negate that we both know that there is always someone else out there in a much more miserable state. It doesn't mean that we aren't thankful to be alive. It is simply that we feel pissy. The truth of the matter is of course we have the right to feel whatever we are feeling. Would it be wrong to say I am thankful that I can still feel pissy?