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."
Monday, June 22, 2009
Hopeful Acceptance: It’s Not Just About Cancer
It’s fun wading through the waters and checking out survivors perspectives. There are so many. There are so many like me with like experiences.
Having all faced our mortality head on it the themes on many of our pages clear: change, loss, understanding, adapting.
It is amazing how different we can superficially be, but when it all goes down, when the decisions are life and death, we are experiencing the same feelings.
On Christine Lynd’s Edge of Light (http://chris-theedgeoflight.blogspot.com) she writes about finding other bloggers who share her experiences and then responds:
I knew about Laurie Kingston’s book launch on May 7th, but didn’t realize that the content from the book comes from her blog Not Just About Cancer.
In one of her posts called Living With It, she lists some of the comments that resonated with her from the conference sessions she attended.
Because some of the items on her list also resonated with me, I thought I’d comment on the comments she noted (if that makes sense).
It's hard to explain to people that we will never be "done with treatment." I agree, this can be hard for others to understand. They ask me how many treatments I’ll have and when I’ll be finished. The reality is that I’ll probably be on some sort of treatment for the rest of my life and there is no way to predict how long each one will last. After an undetermined period of time the cancer will start to become immune to a particular drug. When that happens, you move on to another drug and start the process again.
Me: Better yet, try explaining to people that you are “taking a break from treatment” because the cure is killing you. FYI- I am taking a break through the summer. When I get my PET results on JULY 30th, I will determine my course of treatment with the healthcare team.
"Coping is temporary. Adapting is permanent." I think this is what Sue Hendler wrote about in her column, Getting used to the 'new normal' takes some time. You have to learn to adapt to the new normal and continue on with your life as best you can.
Me: I, too, love this quote.
Talking about our cancer "takes the power out of it. It's like deflating a balloon." For me, as an introvert, talking with the right people is good; writing about it is even better. (See Bloggin' is good for the Noggin).
ME: There is a scene in “Milk” where Sean Penn (Harvey Milk) posts a death threat to his refridgerator and says “There, see, it’s there. We need to face this. It can’t hurt us if we face it.” Stare Down that cancer people
Strike a balance between hope and acceptance - "hopeful acceptance." I really like this term – hopeful acceptance. I’m not in denial, but I’m open to the possibilities that every day brings my way.
I heard about this aptly titled book browsing among the cancer bloggers, which I haven’t done in a while.
Me: I have been looking for this term for a while. Reading this is like an “aha moment.” I have been debating for a while about optimism vs. pessimism. I say “God helps those that help themselves,” and I feel, that by having a contingency care plan in place that I am hopefully accepting the reality of my disease. I am not pessimistic and thinking that I have cancer, I’ll be forced to go to Germany for treatment. I’m hopefully accepting that this is the likely reality based on my test results.
Another good find is Denis, a man who has been in remission from T-PLL for 7.5 years and a former clinical oncology nurse, who writes to continue to give his experience meaning, and hopefully, to alleviate the pain of others who are coping with similar trials.
He runs a book club off his site http://beingcancer.net/ that’s now reading “The Last Lecture.”
I want to give a big “thank you” to whoever found me and put me on that Top 50 Cancer Site List. I’m meeting some great people.
I am signing up for the club. I all ready had the book. There is a reason why it has been on The New York Times Best Seller List for months.
Growing up, every Sunday, I would study the bestseller list.
I would look for patterns in the titles and try to find the common denominator that would ensure a best seller.
I wanted to see my name, my title, my book on that list.
I always focused on the non-fiction titles. I knew that was where I wanted to be.
I was such a geek.
I also read the great American classic to find the common patterns and themes that made them classics.
There is a reason some books have the staying power over years of life and some fizzle out and die.
I wanted to be that book, that shining star that kids are groaning about having to read over summer vacation, because my writing was that life altering and time defining.
I wanted to write the book that could transform the reader and take them to the time and place where I was and enjoy it like I did.
Reading is the ultimate time machine. It is the only way I could transport myself instantaneously.
I wanted to have that talent, but I’m not sure people want in on this life.
I was thinking, and still am, of writing a cross breed mutt of a book that incorporates the emotion of Crime and Punishment with the coming of age scenarios seen in Catcher In The Rye with the Gonzo, hysterical reporting style of “Fear and Loathing in Las Vegas.”
Of course, that couldn’t be all, because my love of books and styles are as multifaceted as me.
Actually, I have my book pitch. I have a good portion of my first book written. I know When it will end. I also have the title of my second, and a third in the works that is more clinical than the other two.
Aren't there any publishers out there who want to solicit a manuscript?
I am a money maker, a cash cow. My experience is bankable.
I also have children’s books I have written. My first is currently being illustrated by Chris LoParco, and I am so excited for our partnership.
He did marry my best friend from college so we have been family for a while, but I think my writing with his drawing is a match made in heaven.
He has jokes in his pictures like I joke in my words. Cancer for kids needs to be funny.
Anyway, I do want to find more about Denis, maybe you should check him out too.