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."
Tuesday, May 19, 2009
From The Hospital Bed
I caught some talk on Larry King Live tonight while I was struggling to move, tubed to my bed, trying to organize all the endless wires that are helping me get through whatever problem I am having with my stomach.
It still hasn’t been determined what exactly my problem is, but it is significant enough where they have taken away my food.
It is serious if the food is getting messed with.
I am feeling better, but barely. I’m going to be needing some rest and quiet time.
This gave me the time to relax and watch Larry King where they were talking about the hot topic of the week: Farrah Fawcette.
This is my current favorite gossip fodder. I can’t get enough. They’re talking about it on The Today Show, on The View, and now on Larry King Live, and all are aprouching the subject from different viewpoints.
I can only imagine this was the idea Farrah had dreamed of when deciding to make her case public.
It’s why I write.
Her actions in the midst of her disease have opened pathways of communication. She has invited people to comment publicly on her very private battle with the knowledge that in doing so treatment options and struggles with cancer would become more transparent.
What she has done is facilitate communication in an area of disease that needs the most effective communication modalities possible.
Larry King’s version of Farrah’s story was my favorite though. He facilitated a conversation among many oncology specialists throughout the United States and Germany. He did so in a manner that allowed each to state their piece, but eventually, I could see the writing on the wall.
A minor territory battled ensued, much like the ones seen everyday between the ER and the ICU or Dana Farber and Dartmouth Medical, except, this time, it was the United States versus Germany over Farrah Fawcette.
Ms. Angel managed to out a major barrier to expediting cures by contracting a nasty cancer and then choosing, with all her assets and options, to seek care internationally, essentially destroying our nationalistic belief that America’s health care system is superior.
Well, it is exactly thoughts like this that are stopping progress and allowing people to continue to die of cancers.
When I was looking at different treatment facilities a year ago, Memorial Sloan and Kettering had offered several clinical trial drugs that may work in a case as specific and resistant as mine.
I was told these chemotherapies had been used for 50+ years in Germany but were only now making it here, stateside, due to the obvious beaurocratic issues of the last half century.
Well, I thought, if MMSC, the alpha #1 cancer center in the United States, was recommending 50 year old German therapies, then what exactly could current therapy in Germany offer?
I found Dr. Ursula Jacob through a friend that evening. Dr. Ursula Jacob is featured prominently in Farrah’s documentary as her primary doctor.
I’m happy I’ve been able to see the woman I’ve been communicating with for the past year, and she does possess the joi de vivre (I’m going to have to learn to say that in German) I love in a doctor.
I am also happy that I followed my instincts and remained in contact with Dr. Jacob despite the serious misgivings that many, many, many, many people, both professional and lay people, have stated.
I’m sure that now her name is out in the world she has patients trying to hop on board left and right.
I’m all ready on board! Yay me!
In doing this, as stated on Larry King, It is certainly a way to bring hope, but that is not to say I have lost hope in American treatment.
I simply feel I have exhausted the best of American treatment and would like to exercise my right to seek the best treatment available elsewhere, in Germany.
This doesn’t have to get territorial but it usually does. Doctors don’t like to have other doctors “step on their toes” or put “too many cooks in the kitchen.”
However, this presents a great opportunity to view what cancer treatment is like throughout the world, and possibly, hopefully, determine the best worldwide practices to expedite cures for cancer.