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, April 23, 2009

I have prednisone!

I have prednisone!!!
It was a hard decision for me to make whether to take systemic steroids or not.
I wanted to manage my chronic, lifelong GVHD symptomatically.
It wasn’t working.
I couldn’t get the medications in a timely fashion.
I was suffering and suffering and suffering some more.
I didn’t want to compromise the long term integrity of my transplant.
Blad, blah, blah,blah, blah.
I was very cranky.
All that pain combined with all those depressant pain killers too do not make a happy Hillary.
I don’t think it would make a happy anyone.
I had options.
I could have been hospitalized and watched carefully while we, as a team, worked out how I could cope with these side effects. I could have traveled to Boston twice a week for
Eventually, we can do this.
Right now, I just wanted to be comfortable.
Prednisone, and other corticosteroids, have some severe side effects.
They scare me.
They always have.
I never, ever wanted to take steroids.
The same way I never, ever wanted to take chemotherapy.
Steroids cause adrenal insufficiency, like Addison’s Disease.
If they’re not controlled, the cause cushing’s disease, an overactive adrenal disease.
They cause mood swings, hot flashes.
They contribute to decalcification and long term use cause bone breakdown.
If not watched carefully, they could kill you.
Even worse, if they don’t kill you, they can make you wish you were dead.
My friend with multiple sclerosis hypothesizes it was caused by excessive steroid use as a child for asthma.
It causes the immune system to be suppressed.
MS is an autoimmune disease.
She was given steroids while her immune system was developing. Now, hers doesn’t function properly.
She treats her immune system like gold. Her body is a temple.
I treat my body like a temple, but if it comes down to live or die, I’m treating my body like an amusement park or a toxic waste dump, everything and anything that could save my life can have a try.
I’m in it to win it.
Steroids, however, have some great side effects.
I feel better.
I don’t hurt.
I can wake up in the morning and move. I can take all my daily medicine without exhausting myself.
Today, I’ve managed to semi-organize the second floor, play hide and seek with Xander, give him a bath, snuggle him and watch a movie, care for him since he says his ear, throat, and stomach hurts (he’s taking augmentin so he’s not bacterially infectious at least).
We made the beds. We’ve drawn pictures. We counted his money. Now we’re doing math while watching The Iron Giant.
That’s not all, oh no, I’m not done, because I have steroids in my system.
I like to cook. I’ve always liked to cook, but I only got to play working mother and housewife for 18 months before I was diagnosed with cancer.
Only 18 months!
I feel robbed.
That is barely enough to move into a house, finish the small projects, decorate, and make the house a home.
I was also simultaneously starting my nursing career, taking my boards, and becoming certified in telemetry, anesthesia, and critical care.
I’m a chronic over achiever.
I’m stating that for the record.
I’m pretty confidant if you’ve been reading me, you came to this conclusion yourself.
Now that I’ve been given artificial energy in the form of steroids (it is essentially an adrenaline pill), I’ve been cooking up a storm.
I made myself a peach yogurt, mango, vanilla soy milk with vanilla carnation instant breakfast smoothie.
I saved half for later.
I made a pitcher of organic green tea spritzer, which is green tea, chilled, then a liter of raspberry spritzers are added with mint.
The mint I would put in a “tea ball” so you’re not drinking leaves. I made this mistake before with some different grown up spritzers.
Now, I do anti-cancer drinks. I call them cancertinis, cantinis, cancervivor spritzers, make it mochas.
I have too much time on my hands, but not enough energy.
Usually all I can do is think up these ideas.
I don’t even have the energy to delegate.
Today I do.
I’ve also made a white chili/jumbalaya.
This is healthy too. It has shrimp, chicken, onions, chicken, chick peas, red peppers, whole grain rice, and loads of herbs.
It doesn’t have just any herbs though. It has herbs with anti cancer power. Tumeric for anti-inflammatory and antiogenesis powers. Oregano, parsley, garlic all have immune boosting capabilities with the power to cut off blood supplies to tumors.
Everything else I’ve made has health rationales too. I’m on a roll.
Thank you prednisone.


Anonymous said...

Good for you! Sometimes we just have to do whatever we have to do to get through another day. If steroids help you do that, go for it. It looks like Xander is also reaping the rewards. And, there's nothing like a little extra energy during vacation week! :-)


Heather said...

i know prednisone sucks and hopefully it will not be a long term solution for you. the meantime enjoy the energy!

Jessie O said...

Ah... the Pred. It's like the cheapest drug ever so doctors love it. It's so cheap that my $10 co-pay is MORE than it costs retail!

I take 100 mg/day 5 days a month. Everyone who knows me can tell when I'm high on 'roids cause I talk really fast, can't sit, still and have a funny gleam in my eye. No one complains though because I turn into the most prolific cook. In general, I hate taking extra crap, but I do use the benzos to keep me from trying to fly off my roof.

Cancer Becomes Me said...

Ah, prednisone. Well, you know from my blog how much I loved it. I got so much done on prednisone, and I too talked a mile a minute on it and stayed up all night getting stuff done, not to mention that it left me randy like an alley cat. The lover in your life will be very happy.

At the end of my chemos after I was off it, I crashed hard. A day of uncontrollable weeping. That was it.

Be prepared for the weeping, and the randiness. :)