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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Wednesday, October 27, 2010

Chemo


My house was clean and orderly. 
The cuppards were full.
 I'd made some staple survival foods. 
I cut up cucumbers and watermelons. 
I had guacamole on hand. Did you know that its one of the few foods that contain all the nutrients to sustain life? 
Day care. Rides. All organized. 
Yup, my pre chemo routine was done. 
I was in good shape. 
Then I get into my appt with Marc and Anna only to be told my, "ANC is 700.". 
Now to those of you who speak english, that means I have nooooo real immune system.
 If the number was 500 I think I would have been stuck in the hospital without a single symptom. 
I was 900 friday. So we know that my immune system went down over the weekend FOR NO REASON AT ALL!! 
...Maybe, it was taking a vacation? 
When both Marc MD and Anna NP showed up together, I got excited thinking they both wanted to hang out, but no, now I wonder if they were both delivering bad news.
 They do gang up on me to deliver bad bad new. 
Spontaneous bone marrow failure is pretty scary. 
So no chemo for me. This happened during my hospitalization for my PEs. 
I was given a med then by the resident that increased my ANC from 200 into the safety zone over 1000 over night. 
I'll take more of that please. It's reassuring that this med exists. I need to remember the name. 
But even if the medication is life saving doesn't guarantee that I'll be able to receive it.
All I wanted was equal quality and accessible health care for all, but even when Americans had to make no change if they didn't want to and were offered the congressional health plan, people still screamed about rationing and the possibility of even larger soaring health care costs.
What did we get? 
Well, with the little reform that made it through, inflation has all ready eased. Insurance still cost 14% more than last year and americans still have no recourse but to pay the rising costs, but that's better than the 28% last year.
And we are starting to ration.
Yes, check it out, with nothing other than cancer rugs, of course.
Check out MSN's http://www.msnbc.msn.com/id/39798646/ns/health-health_care reporting that 150 medications are in short supply.

"Worse, the drugs that are in short supply are often the ones needed most. This year has seen shortages of common drugs used for basic treatments: morphine for pain relief, propofol for sedation, Bactrim injections for infections."
Two of the above medications I take daily. The third I like to have when I go to the hospital screaming in pain. And this isn't the first time I was directly affected by a shortage. 
I had to change my anti-viral medication due to a shortage. I couldn't receive oxycodone for a period of time last year due to a shortage causing me to change to morphine, which is now having a shortage.
Of course, drug companies are stopping the development of these medications because they are affordable to the patient and do not generate enough profit for their companies.
I guess it's time to legalize marijuana for us so we don't have to deal with these problems.
And please pray I don't turn out like the two patients who have all ready died due to medication shortages or the cancer patient who can no longer receive his chemo. 

2 comments:

Loraine Ritchey said...

Hilary I hope you don't mind but your post and Chris Carr's post nfollowed through with one I was writing about the unequality of health insurance so I have used your words and linked back to your blog Loraine
http://thatwoman.wordpress.com/2010/10/28/medical-insurance-not-all-equal/

Valerie said...

HILARY!!!!!!!!! Girlfriend. Keep the faith.