Friday, August 27, 2004

Back story 

I was thinking I had writer’s block. I had trouble with writing even a few words about anything. Nothing I wrote pleased me. I felt stuck.

But today, as I wrote for the blog I share with my husband Paul, I realized that the problem is not that I have writer’s block, at least not right now. I just can't write about the small day-to-day details of my life when there’s this enormous thing – my husband’s cancer, and its impact on our lives – that's demanding to be considered. And reconsidered. I want us to have a normal-for-us life again. We just can’t yet. Neither one of us has recuperated from his illness and treatment.

I also realized that, in trying to write here about the details of our very complicated life, I've had a problem with the back story. There's just so much of it. You can read a lot about the past seven months of it over at Paul vs. the Squamous Monster. However, as we’ve written primarily for our family and friends, who already know a lot about us, you’d still be missing a lot.

So here, in 500 words, is a short, much too medical, history of my life with the man I love. It's a "just the facts, ma'am" treatment, because, well, I could write a book... and may yet. But I don't have time for that tonight.


I met my husband during my junior year of college in New England. We fell madly in love. Nine months later, he was diagnosed with cancer. Non-Hodgkins lymphoma, to be exact. He had radiation and chemotherapy for the next 3 years. He almost died a couple of times. While he survived, our romance did not. We had a horrible break-up. We were very young.

We went our separate ways for the next 12 years. I moved back to Texas. He moved to California. We saw each other at friends’ weddings. Sometimes we talked; other times we didn’t. Once or twice we kissed. I got involved with someone else. He got married. I got uninvolved. He got unmarried.

He called me one night in 1995. He asked if I ever thought about us getting together again. I said yes, and we did. We wrote lots of email. We ran up huge phone bills. A year later, I moved to California. We were in love. We got married May 23, 1998.

A year later, we moved to Seattle. We bought a house. In 2001, he walked a marathon as a fundraiser for the Leukemia and Lymphoma Society. He did it to celebrate having survived 20 years since his cancer diagnosis. We started the paperwork to adopt a child. Life was good.

In January of 2002, he was diagnosed with congestive heart failure. It’s a long-term side effect of some chemotherapy and radiation. He started taking lots of drugs every day to ease the load on his heart. We put the whole adoption plan on hold. The drugs worked well for him. Last year, he was stable and feeling good. We were all set to start up the adoption machinery again.

In January of this year, he was diagnosed with cancer. Again. Oral squamous cell carcinoma at the base of the tongue, to be exact. He does not drink or smoke. Maybe the radiation caused it. Maybe he’s just unlucky. Six months ago today, he had surgery. Twelve hours of surgery. They removed the tumor and adjacent lymph nodes, reconstructed his tongue with tissue from his arm, put a skin graft over the hole in his arm. He got a tracheotomy and a feeding tube. When the swelling went down enough, they removed the trach. He is still learning how to swallow again, and still gets most of his food through the tube. We don’t know how long it will be until he can eat normally, and get the tube out.

The surgeons believe that they got all of the cancer. There were clear margins around the tumor. The lymph nodes were negative for cancerous cells. His most recent CT scan, from the end of June, was clear. He’ll have another one in December, and then one each year for the next four years.

We’re now recuperating from this, and trying to imagine where we go from here. We love each other. We want to have a family. And right now, every day is a struggle.