Thursday, May 22, 2008

Give Sen. Kennedy needed room and privacy

When you're told you have probable terminal cancer, just as Sen. Edward Kennedy was informed this week, the moment is more surreal than earth-shattering.

My moment wasn't handled very well at the Nashville hospital where I began my journey two and a half years ago. In a lab room, a stranger and physician told me I had leukemia -- without my wife with me or anyone to provide comfort. Then, I had to hold still for a series of CAT scan pictures. I didn't know whether to cry or laugh at the ridiculousness of it all. I just stayed quiet with my eyes fully dialated, trying to process the unbelievable.

When I was wheeled back to my room, there was my poor wife. And I had to tell her I had leukemia. We hugged and shed just a few tears, each not wanting to bring the other too far down by outright crying. We later listened to specialists speak of the treatment schedule. I didn't ask about life expectancy then, because I already had a good idea. Never ask about something you really don't want the answer to.

Then you pray. I wasn't angry at God. I just was just in disbelief. I said all the right things about needing His help and wanting to live, but the words still didn't come from the wrenching gut. Yet.
I was happy to see Sen. Kennedy play with his dogs and then go sailing after he got out of the hospital. Life for the moment is really all that any of us have. Terminal cancer just makes us realize that truth more readily. It makes the rat race of meeting work demands and getting to soccer games on time that much more meaningless. I can tell you that in your hospital bed after being told of your cancer, those things don't even come to mind. Living for the moment actually is a better way to live, and to love those around you.

This quote sent to me by a Nashville judge who has survived cancer really summed it up: "If I only knew that I was caught in the trap of living for tomorrow and a future that existed only in my imagination, I would have slowed my pace, drawn boundaries around my work and taken time for the people I love."

It is only in the days to come after the initial diagnosis, however, that the earth begins to shift beneath you and shatter in places. The flood of emotions and questions that sweep over you are overwhelming, including the great truth contained in the quote above. Sleep is the only refuge but then you have to wake up and realize that you have a cancer that is probably going to kill you soon. Your days always begin on a down note.

My diagnosis around Christmas didn't help. It seemed the whole world was celebrating, and here I was with my wife caught in an entirely underground place that few people really notice.
Yet people in that outside world did want to help, and they reached out to me and my wife. But for whatever reason, my days after diagnosis were very private to me.

In one way, I was ashamed of having leukemia. How did I let my body fall apart? Of course, leukemia is not about that.

In another way, I was angry because of the people I had let done in my family and my job. Tennessee's governor, who some Democrats have foolishly pointed to as a potential vice presidential choice, had cut benefits to poor people on the Medicaid program in the state called TennCare. People were actually dying from the cuts. Despite my initial diagnosis of pneumonia from a month a half earlier, I drove down to Lawrenceburg and a clinic where the director claimed eight deaths of her patients from the TennCare cuts.

My wife rightly objected to the 60-minute drive because of my pneumonia, but I wasn't dying like the people who had been cut from TennCare. At least I thought I wasn't dying. I didn't get a chance to write about the outrage. My subsequent visit to the doctor for more antibiotics to fight my pneumonia produced the leukemia diagnosis and my hospitalization.

After that diagnosis, I didn't want to hear or talk with anyone except my immediate family and our cats. I didn't want to hear how much of a fighter I was and how I would beat the leukemia. Get real. Leukemia is a big and bad form of cancer. Bone marrow or stem cell transplants only work 30% of the time for adults and first you have to find a needle-in-the-haystack-of-a-match. There aren't a lot of Hispanics or other minorities in transplant data banks, so your chances of rescue and cure are even more remote. For the first time in my professional life, I had to stop completely and think and cry and even scream.

I'm not saying that Sen. Kennedy is doing all this. He is a much better man than I am. I'd hope, however, that the news media and his political colleagues would give Sen. Kennedy a little room in the days to come to sort everything out and set his priorities. The granting of privacy can be a great gift.

Those priorities start with your family. From my bed at home, I wrote out a summary of the assets we possessed. I called a good friend of mine and asked if he could update my will. I started to assemble paperwork my wife could find to get to these assets after my death. I re-checked beneficiary listings. And I let my heroic wife know how I wanted to be buried -- in nothing more than a wooden crate as the great Dr. King --and here in what I now considered my home state: Tennessee. I have been impressd by the goodness of the people here from all political backgrounds. I wanted to be buried among their loved ones.

I don't know why I am still alive today. And today is the only time I really count on. My hematologist really doesn't know either. I can only first credit God, my heroic wife and my brilliant Vanderbilt doctor. VUMC is a national treasure. It was not my original hospital. But it is my home now for the best and most compassionate treatment.

I pray that God will help Sen. Kennedy to defy the odds, not for himself, but for the rest of us. Brain cancer is even more sobering than leukemia. But just like in the story of Pandora's Box after all the bad escapes into the world, a small speck of light emerges that represents hope.

That's the word I ultimately scribbled on an 8 x 11 piece of white paper and taped to my wall in my bedroom. After the first days that diagnosis evolves from unbelievable to reality, hope is all you're left with. And surprisingly, hope can be enough to battle the odds of probable terminal cancer.

Hope, Sen. Kennedy, hope.

1 comment:

OurHispanicVoices said...

I too hope he overcomes the odds. I hope to see him leading for years to come.