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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Saturday, February 19, 2011

Long Term Steroids: A Choice Between Bad and Worse

I never wanted to accept long term metabolic steroids as treatment.
Steroids scare me.
I have a new problem Doc,
I haven't stopped bouncing since starting steroids.
These medications, such as prednisone and dexamethasone, come with too many side effects. 
The superficial side effects are a moon face, weight gain, fat hump, hirsutism or extreme hair growth.
 And these are only the effects you see.
The internal effects are much scarier.
The most common short-term effects are a wired, anxious feeling, like an adrenaline rush, difficulty sleeping, increased appetite with indigestion and sweating.
Also, just like those nasty anabolic steroids the athletes take, there are mood changes, wild, uncontrollable mood swings.
Me, prior to prednisone therapy.
Long term side effects tear apart your body: osteoporosis, increase risk of fracture, loss of muscle mass, adrenal gland failure, cataracts, immunosuppression, electrolyte imbalances, to cardiac arrest.
Basically, long term steroid use can cause anything up to and including death.
I can't count the number of stories I've heard from people who have been eating and broken teeth or were walking and fractured an ankle. 
Jon's achilles' tear last year could be attributed to his previous steroid use for Crohn's disease.

Me, ten months after starting treatment with prednisone.
Thank goodness I'm married. Here I am dancing with Jon.

But this isn't why I was so adamantly against adding them to my treatment.

I most specifically feared for the condition in the body steroids create which suppress my graft vs. host disease and remove any internal protection I had from my cancer.
Choosing steroids was choosing to allow my cancer to reoccur.
 Long term steroid treatment also often disqualifies you, as a patient, from many foreign treatments. 
Even Farrah Fawcette was told she destroyed her chances of survival by the Klinik Im Alpenpak after she chose this American route.
I know, I was hoping to be treated at the same clinic by the same Doctor. I was medically accepted and ready to travel for hyperthermic radiation.
Instead, I had to make a decision between bad and worse.
So here is the million dollar question: why, knowing all these facts, did I accept steroids as treatment?
I accepted because it was the treatment I could afford. 
It was when I made this decision that I knew I'd numbered my days. I knew I was choosing comfort over cure. 
Steroids have their benefits. They give you energy when you have none. They allow you to eat. They give the perception of being "normal." They decrease inflammation and assisted in alleviating my lung problems, but it's not a cure. 
Also, the side effects themselves are incredibly uncomfortable.
I made my decision because it was the cheapest and most convenient. It would not bankrupt my family and put us in dire financial straights like running to Boston or New York. It absolutely was less expensive than seeking a cure in Germany (my first choice) or India.
I'd decided I would not leverage my families' future when my survival wasn't guaranteed. 
And to this day I come to tears when I think about it. It's my biggest "what if?"

No one should ever have to choose between their life and the security of their family, but I did.  

1 comment:

Tim Cooper said...

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