Sunday, June 18, 2006

Report from the road

Occasionally, as Marilyn and I traveled the 1806 miles from our home to Columbus, Ohio to see Dr. John Byrd, I wondered if it was worth it. The United States is a big country, and the time away from our business and the expense of travel, as well as that of the appointment, was racking up dollars to match the miles.

Making it brief -- we are still mid-trip, visiting family and friends -- the answer to "was it worth it" is an unequivocal "yes." Dr. Byrd, for those who don't know, works at the James Cancer Center at Ohio State University and is one of the leading CLL researchers/doctors in the world. He is very busy, but he had taken the time to familiarize himself with my medical history, as well as the questions and concerns I had posed in my two-page cover letter. He had obviously given some thought to my case.

Dr. Byrd lives and breathes CLL, knows the facts and nuances like the back of his hand, and has a command of where things stand and where they might go, both for me personally and CLL research in general.
During our hour, he spoke directly and succinctly to me as an adult, and I felt comfortable with his sense of judgment. There was no pressure to join any clinical trials, no "cover your ass" suggestions, just an honest give and take.

Like me, Dr. Byrd is a conservative when it comes to treatment. He gave me a few things to think about, which I will continue to mull over in the miles returning home through Tulsa and Tucumcari. My visit may lead to a changed perspective, in some ways. Certainly there are a couple of surprising new entrants and changes in the treatment beauty pageant (see my earlier post "Here they come . . .")

As much as my visit was enlightening, it was also humbling. No matter how much we patients may try to learn, to finesses the choices, to balance the options, there is no substitute for having a doctor to work with who has the expertise and quality of judgment to help guide us through the maze.

If I may paraphrase the MasterCard commercial:

The cost of a tank of gas for a Toyota Prius: $27.

One night at the Best Western Suites in Columbus, Ohio: $70.

A CLL expert who knows what he's talking about with the wisdom to apply it properly: Priceless.

Sunday, June 04, 2006

Walking in beauty

As leukemia patients, we face the emotional as well as the medical challenges of our disease. If CLL does anything, it reminds us that we are mortal. For some, this can bring positive changes, and for others it can lead to depression. Sometimes it does both.

There is an ongoing discussion of this at CLL Forum, which is one of my favorite places because people can speak openly and honestly there. This discussion got me to thinking, and a post that I wrote for the Forum says something that I think merits being said here, in a slightly expanded version:

Life is terminal, even for the healthiest of people. Personally, I do not know if I will die of CLL. I may get hit by a truck. I may come down with something else. I may die with CLL. For all I know, there may be a cure in ten years, or I may have to do a stem cell transplant in ten years and it might cure me. None of us knows what tomorrow will bring.

Which brings me to the larger point: Focus on today. Find things to enjoy and appreciate, even the little things that once might have seemed inconsequential. Savor life, not because you have CLL, not because your life will end one day -- and who knows what our journey is after that -- savor it because you are blessed to be here.

The Navajos live not far from where I do. They have a ceremony called the Beautyway (also called the Nightway), which a sick person goes through in order to re-establish balance and beauty in his or her life. This sums up what I think is the best attitude to have toward life, even in illness.

First, here is a little background from a Navajo website:

"The Diné [or "the people," as the Navajos call themselves] journeyed through three lower worlds in various forms of being, faced by many trials and tribulations before they emerged into this world that we call Disoos, the Glittering or Sparkling World. We inhabit the land between the four sacred mountains bounded by the great rivers. The Holy People created this world for us from which we are never to stray and which we must always protect. The Holy People also live in this world, in sacred places, on the mountaintops, in the canyons, and the valleys. They have power over our daily lives by requiring us to walk and stay on the path of Hozhóó (harmony). Each day our morning prayers are said toward the east before the sun rises. We express gratitude for our good life, for our livestock, for our land, and the wonders we live among."

The prayer:

May it be beautiful before me.
May it be beautiful behind me.
May it be beautiful above me.
May it be beautiful below me.
May I walk in beauty.

Here is a discussion of the Beautyway ceremony from another site:

"The reasons why one may lose their sense of beauty, of balance and of harmony are many. But the cure, for the Navajos, is one and the same. One must find the way to Beauty, and if one wanders away from this way, from the Beautyway, then one must re-establish one's link to the natural world in order to regain it.

"To Walk in Beauty means not only walking physically. It also, and primarily, means being in harmony with all things and all people, with all objects, all the animals, all the feelings, the plants, the weather and all the events in your life. It means being at peace, serene in the knowledge that all around you is well and that you are well with everything in your life. You accept and are accepted, there is nothing that pulls you in one direction or the other, the polarities are neutralized, you are one with everything. You are ready to walk in Beauty."

The Navajo beautyway ceremony
(anonymous Navajo author)

In beauty may I walk
All day long may I walk
Through the returning seasons may I walk
Beautifully I will possess again
Beautifully birds
Beautifully joyful birds
On the trail marked wit
h pollen may I walk
With grasshoppers about my feet may I walk
With dew about my feet may I walk

With beauty may I walk

With beauty before me may I walk
With beauty behind me may I walk
With beauty above me may I walk
With beauty all around me may I w

In old age, wandering on a trail of beauty, lively, may I
In old age, wandering on a trail of beauty, living again, may I walk
It is finished in beauty
It is finished in beauty

BLOGGER'S NOTE: Later this week Marilyn and I will drive in beauty to Ohio, where I will consult Dr. John Byrd for a second opinion on my CLL. Given the disruptions of travel, posts to the blog may be a bit irregular during the next few weeks.