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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Monday, August 8, 2011

Medical. . .What?

With the extent of my disease, I'm going to have to meticulously control my pain,

I can never go too long between doses of different medications to ease different ailments: my acid reflux, nausea, fatigue, yada, yada, yada.

It's not as easy as a "healthy" person may think. It certainly doesn't seem like a stressful job sitting around and taking pills all day, but it is difficult to decide which ones to try when and to know how it will effect you. You wrong move could put me out of commission for a day. I don't want to miss a day I could be enjoying!

Then, my luck, one of the best long acting medications to make me comfortable, cesamet (nabilone), the medicine that stopped my nausea and vomiting while making me eat and drink and easing all my aches almost letting me "forget" my disease was inaccessible!!

I tried cesamet with huge success, but then the palliative care NP who prescribed it forgot about our trial since cesamet is a medication pretty new to the market. I was the first perscription she had written for it.

Due to this confusion  I couldn't get the script rewritten since nobody else knew this medication.

Then again with my luck, when it finally did get written, like I'd asked, it had been taken off the market due to "distributor problems." 

It took months of aches, pains and advocates to get it for me again. 

My home care nurse finally pushed. She called the distributers and pharmacies on my behalf. 

Thank you J!!  The world needs nurses, especially like her. Her dedication finally got the med back to DHMC pharmacy. I've been able to get two prescriptions and stay up all day making jokes!

 You would guess a medication that could cause such a hastle has to be new, complicated and hard to access to have to include insurance with co-pays, manufacturers, distributers and a high cost ($200+ a bottle).

Or not.

Cesamet (nabilone) is a SYNTHETIC or CHEMICAL MARIJAUNA.

  I could have gotten the fresh healthier version from some local cow field more easily. 

I think, with our country in so much debt, maybe it's time our representatives looked into some of the better business practices, like raising rates (i.e. taxes) when the profit margin allows (when they are able to tax without hurting or even helping, like with cigarettes) or utilizing their resources such as marijuana like this pharmaceutical company much like we, the U.S., did with tobacco and alcohal.

Really, I don't understand how I live in a country that made absinthe legal, but marijuana remains on prohibition. So confusing. A least now I can access easily for my pain.

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