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, September 8, 2009

No Treatment For you!

“I don’t want my energy spent worrying” said Breast Cancer Survivor and “Pretty in Pink” patient in a TODAY interview on July 21, 2009.
Boy, can I relate.
Surgeon Dr. Tolmich of North Carolina has started a one woman crusade to fight breast cancer by fighting the costs.
Her program “Pretty in Pink” has fourteen different divisions currently and runs on the charity and giving of local hospitals, providers, and fundraising to make receiving treatment for breast cancer possible.
Despite America’s superficial abundance, when it comes to fighting health care, specifically breast cancer, costs for surgery, chemotherapy, and radiation can easily top $200,000.
What I wonder is, now that the problem is getting publicized and more people are becoming aware of the burden of costs on patients, why isn’t more being done?
Publicizing the problem is a great first step to changing the social mindset of stigmatizing those who become poor or downright broke paying for healthcare.
It’ estimated 72% of all bankruptcies have a medical component.
We are all aware of how many people are declaring bankruptcy. Did anyone realize that 3 out of 4 of them were not declaring bankruptcy due to the housing debacle?
Does this change the way you look at the housing crisis just a little? I think it should change the way people respond to it.
I’ve spent my blog chronicling my battles, most recently with my long term disability company, Reliance Standard, who have made no effort to remedy the situation and Medco, who have made clear that I am a very large account and they would like to make the process go as smoothly as possible.
I’m willing to work with them on a plan to make medco easier to use from a patient like me.
I think the solution may be to have my medications ordered and sent automatically every three months for the duration of the script (12 months) and I will only cancel or call if there is a change, like a magazine subscription.
This will be simpler and more efficient for everybody.
But what about everybody else? I’m no longer traveling (thank goodness), but people are.
I’d love to hear the stories. Any brave souls out there who wants to be heard, you can post anonymously in my comments.
My comments are widely read too.
I’m tired I can’t speak for everyone, but I do want every one to know about Blake, Bekah, Andyson, Kara, and Adrienne. We’re one bang-up (hehe, get it?) bad-ass groups of hodgers.
I know there is more.
Everyone deserves a voice. You have it here. Take advantage.
Let’s talk about Kara first. She is a young single mother who was diagnosed with Hodgkin’s lymphoma when her daughter was just an infant.
She was living on her own having recently broken up with the her boyfriend/ Skylar’s father.
WHAMO, she is hit with a cancer diagnosis, a diagnosis that is supposed to be cured in six months.
Unfortunately, life is not always so easy. Not all of us are so lucky.
After struggling to live and provide for her child during treatment she eventually became overwhelmed.
She mended her strained relationship with her mother and was allowed to move back in with her and her step father with her daughter.
Finally, she at least had a place where both she and Skylar where safe. She was being treated locally in Tennessee.
Her disease reared its ugly head through the treatment. The tumors metastasized to the point they were in her spinal chord and had actually began growing outside her skin.
You could actually see the tumor!
Need I go on in explaining she had EXTENSIVE disease.
The cancer clinic sent her home to die, and she said “Hell, no. I’m watching my baby dance at her wedding.”
At that point she began traveling to New York City for treatments. She is housed at Hope Lodge for free (thankfully), but travel costs mount.
As I stated, this should be the least of a person’s worries, especially when they are sent home to DIE.
The unfortunate truth is it is a major concern.
Either way, are you ready for the news?
Guess what?! She is in remission.
How did she do what?
She decided to see a Dr. O in NYC who is notorious for doing clinical trials. HE found the magic combination of Vorinostat and Niacinamide which is given once every three weeks with little to no side effects!!
HOLLER! Big round of applause, major excitement all around please.
This is a miracle, but it is a miracle that mya have never happened if costs had stopped her.
Treatment certainly does require air travel every three weeks to NY from Tenn.
How is she paying? The same way most of us do: charitable donations and hand outs.
Please give to her. She has the infamous donate button that is so prevalent on all of our pages. If giving is between her and me, go to her.
I’ll be just fine.
If you need an incentive and thought everything was looking up for Kara, in a disturbing new twist, after refusing to man-up during Kara’s illness, her child’s father is now seeking custody.
She is in the midst of a court battle to determine custody.
Ugh. When it rains it pours.
You can check her out by going through the link “Kara’s Blog” or going directly to

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