Thirteen Years Ago Today

750px-Anaplastic_large_cell_lymphoma_-_cropped_-_very_high_magThirteen years ago today, I found out I had cancer.

Here’s the surprising thing—I had no idea what the exact date was until a little while ago. I knew it sometime in late February, but it is only today when I came across a copy of the email sent to my surgeon and a print-out the doctor gave me to give me some background on this disease I was diagnosed with that I realized the date. And even more surprising, it’s today’s date.

What’s interesting to me is that this paperwork just showed up out of seemingly nowhere. I was doing some laundry and inventorying supplies for an upcoming community fundraiser when I noticed part of a shelf in my basement sagging. Figuring the box on that portion of the shelf was most likely too heavy, I laid down the inventory sheet and Sharpie, lifted the box off the shelf and carried it over to the dryer where I started to look through it. After finding a new place to store the box, I went back to where I had placed the things I had been working with previously. Looking down at what I thought was the inventory sheet, instead I was holding the beat-up copy of the email stapled to the non-Hodgkins lymphoma paperwork. I went back and found my other paper, and brought both upstairs with me. I wondered if the cancer-related stuff somehow had been stuck to the bottom of the storage box—other than that, I’m not sure where it came from, particularly after all this time.

Back in 2000, I had been waiting for about two weeks for my diagnosis after having a tumor removed. Although the hope had been that this lump was benign, I think the surgeon and I both knew it wasn’t. I just wanted to know what it was. Always in the case of bad news, I just want to know. As soon as I know, I can start thinking about what’s next, making a plan, starting to deal. It’s that period of limbo that drives me crazy. I tell other people not to stress, that what will be, will be and a solution will be found. Intellectually I know that to be true; emotionally, not so much.

So, on February 23, 2000, my surgeon received an email, which read in part:

The follow-up immunostains are diagnostic, and unfortunately shift the diagnosis towards the malignant. The patient’s immunoblasts express the ALK1 protein, a kinase normally expressed only by neural cells, but, in a malignant setting, is expressed by T cell immunoblasts which have undergone an upregulating translocation of a portion of chromosome 2 bearing the ALK1 gene, 2p23, to another chromosome, usually 5q35. The result is a type of large T cell lymphoma called an anaplastic large cell lymphoma.

Anaplastic large cell lymphoma. ALCL to those in the know, a rare version of non-Hodgkins lymphoma. The doctor writing to my surgeon said that before contacting him with my biopsy results, he checked the most recent literature to ensure that there no reports of ALK1 expression in any benign lymphoid reactions and there were none, sadly, to report.

Here’s what he said next: So that’s the bad news. The “good” news is that this type of lymphoma appears to be very responsive to therapy, with cure rates approaching 90% in some series.

A handwritten note on the email copy from my surgeon, who was kind enough to make these very copies for me only moments after telling me I had cancer, marks my upcoming CAT scan five days from then on February 28, 2000. This would be the first of the tests that would help stage my cancer. I already knew it must be fairly advanced and fast moving simply because of the rapid emergence in the week prior of new tumors across my chest. The note also reminds that I’ll have an upcoming appointment with an oncologist, whose office will be calling me to confirm. The handwriting is a bit blurry, as if this paper has gotten damp or wet at some point and wherever it’s been over the past thirteen years, it seems to have weathered some moisture and other elements as well. And yet, it appears today, exactly thirteen years after I initially had it handed to me.

So I can’t help think of that day, because it was about the same time of day actually when I discovered it downstairs and about the same time when I actually sat in my living room a couple of hours later and read it thoroughly, not even sure what the hell any of it might mean for me. I had no staging. I had no oncologist in place yet. I had no idea what type of treatment I would incur. I had no idea if I would die. I only knew that I had a husband with Parkinson’s disease and four children, the oldest who had just turned 18 and the youngest who was seven. I sat on my crouch crying, my husband walking around the house most likely in his own cloud of disbelief, going through the motions of his day, not sure what to do or say next. I emailed my work, called my parents and got ready to talk with each of my children who arrived home at various times from school each afternoon. It was, quite simply, one of the hardest days of my life, probably the most devastating thus far I had experienced and yet only one of the first of hard days still to come. But I remember that day, although I certainly don’t dwell on it, and remember how it all felt. While it was a surprise to come across this paperwork today, it was not a surprise to learn what I did that day –I had already figured it out. The surgeon had called me moments after receiving that email, knowing that I had been calling everyday to see if he had gotten my results yet.

It would be a couple of weeks before I got the lowdown on the staging of my cancer and the plan of treatment. I had done a lot of online research, so when my lymphoma assessed at stage three, it was pretty much what I thought it would be. Many months of treatment would ensue, with side effects I wouldn’t have been able to imagine or believe I would get through. But I did. And today I can only marvel that it’s already been thirteen years, thinking about all that has happened since that time. My experience allowed me to believe that I am strong and I am capable, and even while I was in the midst of it, I grew to understand that it would only be one component of my life—it would not define me then, nor does it now.

So here I am thirteen years later, very grateful have been able to move past that illness, yet able to remember much of that time, especially the love and support that helped me get well again—and my own belief that I would be strong and healthy and learn from what I had gone through.

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