“A.D.” is commonly taken to mean “Anno Domini,” Latin for “In the Year of the Lord.” CLL has given it a new meaning for me: “After Diagnosis.” The anniversary of my diagnosis, and the fact that I have survived another year with chronic lymphocytic leukemia, is as significant to me as New Year’s Day. And, so, September 3, 2004 was 1 A.D. (I guess that means the date of diagnosis was Year Zero, and it was sort of a Big Zero in a cosmic sense.)
When we last left off in my personal story -- see My adventures with Dr. Do-little . . . -- it was March 2004, after my successful treatment with Rituxan. The best way to describe the months that followed is that it felt like school was out. Alice Cooper’s anthem was blasting through my head: “School's out for summer. School's out forever.”
Of course, with CLL, school is never out forever. But I was experiencing what can only be called the Joy of Remission. The crash course I had undertaken in biology, chemotherapy, and the cultural anthropolgy of the medical establishment was finished, at least for awhile.
For a few months I allowed myself the luxury of slipping back in time, to the days before I had ever heard about CLL. Marilyn and I decided to take a long bender of a vacation, which we had not done in several years. We escaped the July and August heat of Arizona and drove to New York to visit my family, continuing on to the Canadian maritime provinces.
We had recently purchased a new Toyota Prius, which was a direct result of my disease, for CLL had reminded us that life does not last forever. We had needed a new car for some time, or at least something newer than our 1991 Ford. And while we’re not usually the sort who think it wise to buy cars new from a dealer, we decided to get what we really wanted, to let go and stop being careful. There was a Prius frenzy at the time, and we were among the few people in the country to get one for less than MSRP, which we had fully expected to pay, and so we donated the difference to CLL Topics.
The Prius performed flawlessly on our trip and became a conversation piece for other motorists on those rare occasions when we stopped at gas stations to fill up. Our other conversation piece was the 17-year-old cat, who we had decided to take along. Kitty is an experienced traveler, a feline Magellan of motels, always seeking to explore as many rooms and corridors as possible. Being a Burmese he is as social as a dog and would have preferred our company, with some occasional inconvenience, to suffering two months of abandonment with a cat sitter or in a cage at the vet’s.
We bought a special cat pouch that can be worn on the chest like a Bjorn baby carrier and we took him into stores and wineries, where he was usually greeted with enthusiasm, although there were a few quizzical stares. But no one ever questioned the practice of bringing a cat to the deli counter. Had they done so, we had invented a tearjerker story about Fluffy’s Law, how in Arizona it was illegal to leave your pet in your car during the summer because, as the case of poor Fluffy showed, it could prove fatal. Alas, we never had to use it.
We drove up the coast of Maine, beautiful but crowded and gentrified, to the coast of New Brunswick. It was like stepping back a half century. Here were picture-perfect seaside towns with whitewashed wooden houses, seen by only the occasional tourist, where oceanfront property was laughably cheap. It was quiet and dramatic, and the drama of the scenery only increased when we entered Nova Scotia and toured Cape Breton Island.
We have always enjoyed Canada, which is kind of like a US that behaves itself. We also discovered that Canada has a Tim Horton’s donut shop on every other block, and the prevalence of chocolate Timbits only further endeared us to the place. And they were practically giving away Vietnamese banh mi sandwiches in Toronto's "Chinatown," where the Prosperity Moose, at left, watches over the place. Alas, as we all know, Canada is damned cold six months of the year, which is why so few people actually live there, and which is why everyone from Alberta who can afford a motor home comes to Arizona in the winter.
We quietly noted my CLL anniversary on the road, and after I got home I celebrated my 48th birthday and wrote a post to the ACOR CLL list for the occasion. It summed up how I felt at the time, and I am reposting it below. Even though 2005 was to bring some troubling news, what I said then is still true today.
Today is my birthday
Today is my birthday. I don't usually give it much thought, but now that I have CLL it seems a little more significant than it used to.
I was diagnosed a year ago, shortly before my 47th birthday. There were times at the very chaotic and panicky beginning that I wondered whether I'd make it to 48. Now I'm here, and what a year it's been. I've learned a lot of big words. I can pronounce "lymphocytic" with ease, and "chlorambucil" and "cyclophosphamide" now glide off my tongue. (I'm still having trouble with "epigallocatechin gallate," which I can barely say once, let alone three times rapidly in a row.)
Somehow I got past the shock, the confusion, the distressing realization that my first oncologist and her partner were pretty much clueless. I made it through treatment and I learned that there is a tomorrow. I've sat in the big Barcalounger at my oncologist's office, which had the subtle effect of making me not want a Barcalounger for the house (which my décor-conscious wife regards as the one good thing to come out of all this). I've learned to laugh more and cry less. My fears have largely evaporated, my initial questions have been answered, my treatment dilemnas have been solved (at least for now), and the challenge ahead is to settle into a pattern of living with the disease. We're all on watch and wait of one sort or another.
On my birthday last year I went for a hike along a beautiful stretch of a local creek. I wanted to be reminded of the beauty in the world as I began to come to grips with my CLL. I still see that beauty everywhere. It's been a year of unexpected happiness, (though I'd be lying if I didn't tell you that the thing that would make me happiest of all is if the damned disease would just go away). Still, as the old saying goes, I have somehow taken a lemon and managed to make lemonade.
My wife and I are closer together. We took a long overdue vacation. (If you saw a middle-aged couple trying to walk their cat on the beach at Inverness, Nova Scotia, that was us.) We're more focused on the important things in life, and on our goals of what we want to do and how we want to live. As much as we can, we've stopped sweating the small stuff. A lot of people live life as if time were standing still, but I know better now. The dragon will get all of us in the end, whether we have CLL or not.
I've learned a lot about myself and about other people. My theory is that dealing with cancer magnifies who you already are. I have a neighbor who cried and gave me a big hug and wanted to hear all about it; and a relative who, always a bit self-centered and unable to cope with emotions, has ignored it completely. My theory works for patients, too. If you were predisposed to random acts of kindness before diagnosis, it makes you more that way. If you had a tendency to put others down to make yourself feel good, it brings that out even worse. Fortunately, I have encountered many remarkable people, often on this ACOR list, and feel honored to have gotten to know them.
I've learned to respect the struggle each of us makes because I know how hard it is. I've seen brave people show enormous strength, wisdom, and humor in the face of fear and disappointment. I've come to appreciate those who have lit up the internet and brought patients out of the Dark Ages thanks to their generous gifts of time, effort, and money. To those who run this list and the other discussion groups, and to the experts and all those who post, thank you. I have learned a great deal. Thank you also to Granny Barb, wherever you are, who I never met, but who pioneered the way. To Chaya and P.C. Venkat, whose CLL Topics has made the difference for countless patients like me, may you long continue to challenge the status quo, think outside the box, and push for doing today what would otherwise be left for tomorrow. It has been an honor to contribute to all these efforts as I can, and I have learned that I can make a little difference here and there in the lives of others who are sometimes as bewildered and scared as I was not very long ago. There's a fulfilling aspect to that that was missing in my life before.
So, a year later, I am grateful, more content in a way, more centered, and more appreciative of life. It has not always been easy. It will not always be. But from my house to around the world, I know there are good people from all walks of life, brought together by an unexpected personal catastrophe, who bravely soldier on. And who realize we have much to celebrate every day, birthday or not, even in the face of adversity.
GET MY CAR-T CELLS TOMORROW FOR MYCLL - Patty and I have been enjoying Seattle. We’ve been here for 3 weeks prepping for the JCAR14 trial at SCCA/Hutch. Tomorrow is my big day- I get the CAR-T ce...
1 day ago