Thursday, June 24, 2010
Wednesday, June 23, 2010
New to CLL?
Thursday, June 17, 2010
Feeling raw already and this article was just what I needed to be fully cooked. "Dad's numbers have gone down" this is what I hear from my Mom lips in slow motion the minute Dad walks out of the room. No more appetite for me, lump in throat, twisted gut..i am done, want to run from the sadness that has been hiding like a grim Lord or the Rings character.
I have had a year off from the worry. He has been in remission for a year. I have been as creative as a 6 year old but with 40 years of know how.
Numbers down is not awful news but it's the fear in her eyes that drowns me. I can handle my Fathers death, I can survive the misery of people bugging me, trying to ram rod me with Christian love.
Can I remain a float in my always cheery Mom's tsunami?
Today I think maybe, but it's going to take a huge pre-social purge on my part.
A 46 year marriage , the only man she ever kissed. I am just not sure how she will survive more health drama...it's changing her.
Tuesday it's marrow tapping time so I will have to wait, she will have to wait.
I will have to go on like it's all OK until it's not... on the outside.
good thing I have a puppy and a new bike.
Wednesday, June 16, 2010
Tuesday, June 15, 2010
The profundity, shame, and denial of cancer and what Viktor Frankl might have to say
June 8, 2010, 2:00 pm Pushing Back at Cancer By DANA JENNINGS
Why does cancer seem so profound to us when compared to other diseases? And why do some patients clam up about their illness, while others are compelled to bear witness?
I’ve been asking myself these questions a lot lately. It will be two years next month since I had my prostate surgically removed, then learned that I unexpectedly had an aggressive Stage 3 cancer. In turn, that led to 33 radiation sessions and six months of hormone therapy.
I haven’t had any treatment in well over a year and my blood tests are right where I want them to be. Yet, I still feel haunted by cancer, can’t quite shake the depression and fatigue that arrived with the disease. They squat on my shoulders like two old crows.
Cancer does capture our imaginations. A quick check on Amazon.com shows about 44,000 books with the word “cancer” in the title (including a certain racy novel by Henry Miller), but only about 8,000 with “heart disease” on the cover, and a mere 311 holding forth on poison ivy.
One aspect of the bleak and profound chord that cancer strikes within us is the shame and silence that sometimes accompany the disease. My friend Gary, who was treated for prostate cancer last year, said that when he was a kid family members used to say that someone “went to Europe,” rather than admit that person had been killed by cancer.
My old and ornery New Hampshire relatives thought they could whup cancer through denial and sheer Yankee cussedness — no matter where they were bleeding from or how much. In the end, they died of their shame in raging silence.
I understand them, partly. A cancer diagnosis in their day was generally a death sentence — and people don’t want to talk about their executioners. Then there was the guilt, caused by thinking that maybe they were somehow at fault for being sick. And cancer’s earthiness, often striking at sexual organs and waste functions, also hushed them.
But in their fear, my relatives deified cancer, calling it “the Cancer,” the capital “C” understood. Sometimes, our entire culture deifies cancer. President Richard M. Nixon declared war on cancer in 1971, and John Wayne, in his best swaggering voice, once boasted that he had “licked the big “C.” (Mr. Wayne was wrong, however.)
For me, cancer’s profundity is about the biological betrayal at the cellular level, that somehow a killer has grown inside us. When I ponder cancer, I imagine darkness creeping into my body from some unknown abyss. And there’s that awful sense of being devoured, cell by cell.
We know that we’ve been damaged by our cancers and, too, by the treatment — by the radiation and the chemo and the scalpels. It reminds me of classic Orwellian double-speak from the Vietnam War: “We had to destroy the patient to save him, sir!”
And there’s always the nagging feeling that we could end up starring in an unwanted sequel to our cancer movie: The alien hordes from inner space have been vanquished, for now.
Ultimately, we’re offered a choice in the cultural exile cancer cultivates. We can just shrug and become one of the mute living dead, or we can try to become free-range sages, sharing our tales and trying to bring a little light into this world.
That’s why more than 400 people -– patients, caregivers and perhaps a few cancer-patient groupies -– gathered at a Relay for Life cancer fundraiser in Montclair, N.J., last Friday night. We were there to share tears and stories; there to hug each other and smile; there to remind ourselves that, damn it, we were not our cancers.
As we walked throughout the hot and muggy night till daybreak, our very movement defied the stillness that cancer tries to insist on.
A bit dark for my liking. Certainly truthful, but only one perspective. He nails the Yankee fortitude, and I would add new age positivism ("The Secret" crap) and the power of faith and prayer to the list of the too often heart wrenching failures.
Also the self betrayal of your own body is so hard to shallow. He owns that one.
The dirty shame aspect seems historical, much less of a force these days. but replaced by those blathering well intentioned idiots who insist if you just had fewer negative thoughts or were thinner or just truly believed or (this one cuts close to my bones) ate less meat all this would never would have happened. That is one of the many unfairness of this disease: the necessity of listening to those as yet uninflicted preach their particular path as the one and only road to longevity. Give me a break. Mr. Jennings conjures the old shame demons but not the new ones.
My much bigger issue is what light is it that he want to share? That cancer is crappy? That the treatment sucks? OK. I can go for that, but I want more.
What is missing is the way out. A deeper understanding than just the words that we are more than our cancer. We are fully alive and with Viktor Frankl's conviction, we can still define ourselves in our struggles. Mr Jennings acknowledge we have a choice, but does he clearly see that act of choosing for the light saber it is?
We never ever lose that freedom to decide how we react, even when we have lost all hope. Does Mr. Jennings really know that ultimate strength he has? For his sake, I sure hope so.
Stay strong. Thanks for sharing this. I will likely use it in a post.
Me? I am still swinging for the fences, so that I won't ever need to worry about all this stuff.
Your foul weather friend
Monday, June 14, 2010
Vote Often for Transplant Patients
Pepsi and BE THE MATCH, what a combo. My dad's work with PEPSI put me through medical school, and BE THE MATCH saves lives of people like me.
Now if only it was the NHL and not NASCAR it would be a match made in heaven.
Take a look. $100,000 at stake and all you need to do it vote.
TRANSPLANT PATIENTS NEED YOUR VOTE!
Help NASCAR champion Jimmie Johnson and Be The Match FoundationSM
take the lead in a race for $100,000
Pepsi, Jimmie Johnson and Be The Match FoundationSM are teaming up in a race to win $100,000.
There’s never been an easier way to help children battling leukemia and lymphoma receive the marrow transplant they need.
Go to NASCAR.COM/PepsiRefresh and vote for NASCAR champion Jimmie Johnson and Be The Match Foundation’s Transplant Grants for Kids. Voting is open through June 23rd and you can vote as many times each day as you would like.
Pepsi has invited three NASCAR drivers to take part in this friendly competition. All are teammates on the Hendrick Motorsports team and each driver will promote a charity of his choice. The driver who collects the most online votes by June 23rd wins $100,000 for his charity.
Jimmie Johnson, the four time reigning NASCAR Sprint Cup champion, has selected Be The Match Foundation as his charity. The funds would help financially vulnerable families afford the uninsured and overwhelming recovery costs that come with a child’s marrow transplant.
“I can't imagine having to choose between being beside my child's hospital bed or being at work in order to keep our insurance active and a roof over our heads. It is a wonderful thing to know that Transplant Grants for Kids can help ease that tension,” Johnson said. “These grants give moms and dads a little less to worry about and give kids what they want most when they are sick - their parents by their bedside."
This $100,000 competition featuring NASCAR drivers is part of the Pepsi Refresh Project, a multi-million dollar national campaign that asks people to submit ideas to better their community and gives the public the chance to vote for their favorite.
Every year, 10,000 patients with leukemia, lymphoma, and 70 other life-threatening diseases discover they need a marrow transplant but have no donor match in their family. Many are children. They rely on Be The Match Foundation to help them find an unrelated marrow donor and receive the transplant they need.
While a marrow transplant can be a life-saving treatment, it takes a financial toll on a family. Often there is the temporary loss of at least one parent’s income to care for their child. And even with insurance, not all costs are covered. On average, child transplant recovery expenses exceed a family’s income by $1,200 per month.
Your support of Be The Match Foundation helps families pay for prescription co-pays, transportation to and from the transplant hospital (often in another state), temporary lodging, and other uninsured expenses for up to six months after transplant.
Sunday, June 13, 2010
Public Policy and Advocacy
June 11, 2010
The Lymphoma Research Foundation is asking every advocate to write or call their U.S. Representative and urge them to co-sponsor a Congressional resolution designating September 2010 as Blood Cancer Awareness Month.
The resolution, which is being introduced in the U.S. House of Representatives this week by Representatives Walter Jones and Betsy Markey, highlights the impact that the blood cancers have in the United States each year, and encourages greater support for blood cancer research and education.
Take Action Now!
Write or call your Representative today and ask that they become co-sponsors of the Blood Cancer Awareness Month resolution. Remember that every phone call and letter counts, so be sure to send this message on to your friends, loved ones and other members of the lymphoma community.
Thursday, June 10, 2010
Back to Normal
Saturday, June 5, 2010
I was in the right place
Thursday, June 3, 2010
Tuesday, June 1, 2010
Forget the Good news
Labels: No FISH