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, December 22, 2009

All I want for Christmas is Steroids

I always get sick around Christmas.

It's a given, every year it’s similar.

I think it started in the first grade. I remember since my mom's

employer was taking all the employees’ kids to the circus and then to spend the night at his house.

Guess who got pneumonia and couldn't go to the circus?

Instead I was left at home with my “sick blanket” on the floor next to the fire watching “Scrooged” (You know, The Charles Dickens remake with Bill Murray) with my parents on tv.

I made up for missing the circus in first grade by going with my best friend to Ringling Bros. in College, but low and behold, at Christmas time, I still got the dreaded case of bronchitis that would ultimately become pneumonia.

That year I blamed it on the stress of finals and my disrespectful smoker housemates who even through me hacking, wheezing and spitting up rainbow colored snot still refused to go out side with their coffin nails.

And Just three years ago this week, when I was undergoing the chemotherapy regimen for my first transplant, my body acted up again.

This time it was more of an unknown bowel issue that caused my abdomen to swell to the size of a 7 month pregnant woman.

I blamed it on all those mimosas I drank at a Christmas party despite being immunocompromised (I’ve never been able to tolerate orange juice, it makes me hrow-up, so why would I couple it with blubbly?)

Luckily, I was so heavily medicated I didn’t realize how bad it was.

I even thought it was just for fun and games that the Priest came to give me my last rights.

What really hit me that Christmas was my three year old son coming to the hospital and asking if I would “spend the night” at his house for Christmas.

I’d been hospitalized for so long,

he thought the hospital was my home and my home was where I stopped by in the interim.

I didn’t get to spend Christmas Eve at home, I spent it with Heather at my bedside, but I was granted a leave for 6 hours on Christmas day.

Needless to say, my lungs have been behaving badly for a long time, especially for a woman who has loved and treasured her lungs through out her life.

It not only seems unfair that I can barely breathe, it feels downright mean.

It feels like God is a big bully with a magnifying glass scorching ants to within an inch of their lives, and I’m his favorite target.

Since August I have struggled daily with my ability to breathe.

Today I finally gave in, cried uncle, and took the steroids.

Then I cried and cried and cried some more. I don’t know how much more I can take.

Having difficulty breathing is the scariest side effect I have ever experienced. Simple tasks: walking to the car, driving x to school, getting milk or going to a friends house were suddenly insurmountable tasks that even the thought of accomplishing left me stricken with fear.

I tried the route of treatment for Bronchiolitis Obliterans of zithromax and inhalers in hopes of preserving some protection against my cancer.

I finally came to accept that the level of functionality and quality of life I was experiencing was not acceptable to me.

I did not feel like I was living.

In fact, I felt that allowing myself to die may be the better route.

I never thought in my wildest dreams that a person could suffer so deeply for so long.

I certainly never thought that person could or would be me.

I finally reached the decision not to be concerned with what may happen down the road anymore.

My quality of life tanked. I’ve been feeling like a prisoner in my own body with no means of escape for too long.

The inflammation in my lungs had slowly led to a decreased ability to walk, especially outside. Getting X ready in the morning and into the car 5 ft from the door of my home would leave me gasping for air.

If I can't do this, I don't have much left.

I have spent too long inactive due to fear of my lungs refusing to exchange air, sending my body into shock, colds sweats, black-outs, pant wetting and all.

That is too scary to handle on my part, and I certainly won’t allow X to see it.

He’s seen to much all ready.

It's time I accept treatment and hope for the best.

I'm happy for the time I have been able to live. I'm jumping straight into steroid treatment at 50 mg a day so I’ll be able to enjoy the holiday season.

I hope everyone else enjoys it as well.


lanabanana said...

Ya gotta do, whatcha gotta do. Here's hoping you can enjoy the holidays with no hospital in sight! We think of you all the time and are sending big hugs your way.


Anonymous said...

I hope and pray that this brings you some needed relief and you can enjoy Christmas with your family.

Anonymous said...

Hill ... this breaks my heart ... but then I think about what you've accomplished in spite of what you've had to endure over the last few years & that gives me hope. Hope that the steroids work & you get a little quality of life back ... hope that Christmas is a good one for you & your family ... & hope that your lungs recover.

You are in my thoughts ... in fact, you are in the thoughts & prayers of a lot of us.

Take care of yourself kiddo ... be strong & don't give up hope.


Anonymous said...

I've not been online for a few days, so I am just now catching up with your news.
Please know that you are in my thoughts and prayers, and I know, that despite all your pain, you are one hell of a strong woman. And you are a much loved woman. As my son used to say...Don't never give up!
Thinking of you this Christmas Eve. Stay strong.

steve said...

Hi Hillary, Our hope is for you to have the steroids do wonders for you, I know they did for my Father-in-Law when he had them. We hope and pray that you are stronger for the New Year.
We just came back from welcoming our Oldest Grandson Home from Afghanistan, very emotional. This was his 2nd deployment.
Keep that wonderful smile as we know it's infectious. God Bless
Doris & Steve