A Decade With Lyme

Today is a huge day for me in my journey with Lyme Disease. Ten years ago today, as I was undressing to get into the shower after a full and busy day, I discovered a large, oval shaped rash - raised, solid, bright red and 6-7" in diameter on my upper right hip and thigh, in my groin area. I had returned less than a week earlier from a trip to Boston, Massachusetts with my Mother, who was suffering from a rare form of lung cancer called Mesothelioma. September 11th, with all it's horrible implications for our Nation, is also a day I mark, now a decade ago, as one that has proven to change my life forever on a personal level. I had no idea at the time, but this was the day that Lyme Disease first reared it's ugly head in my life.

Ten years ago, I had traveled with My Mom to Boston, where she would be seen at Brigham and Women's hospital, considered leading authorities with this rare, and unfortunately at the time, always fatal cancer called Mesothelioma. My Mom and I had spent several weeks in Boston, and on days that she was feeling good, we had taken the opportunity to travel around New England, doing day trips to New Hampshire, Maine, Cape Cod and other places. While it was under extremely difficult circumstances, it had been a good trip where we were able to make many memories that I will cherish forever. Obviously, I had no idea about Lyme Disease, it's many controversies and how it would potentially impact my life. But even had I known, there was simply too much on my plate at the time, for me to spend any time thinking about or processing any of it right then.

On September 6th, 2003, after weeks of tests at Brigham & Women's hospital in Boston, my Mom underwent exploratory surgery to establish whether she would be a candidate for a much more invasive and aggressive surgery to remove her right lung, the lining of her lungs and heart, and a portion of her thoracic diaphragm. The hope was that she could have this surgery and possibly prolong her life for a few years. It wasn't a pleasant picture, but it was our only hope. Following an intense and extremely long wait at the hospital that day, the doctor came to discuss with me the results they had found, and I received the heartbreaking news that the cancer was now in my Mom's liver, meaning that she would not be a candidate for the surgery. What the doctor didn't say, but what we both knew, was that my Mom was dying, and cancer in her liver meant she didn't have a lot of time.

As I sat with her in recovery that evening, I tried to put on a smile. She would occasionally wake up and ask what the doctor had found. Holding her hand, I would explain that I didn't want to discuss the results with her until she was more fully awake - truthfully I had no idea how I would tell her. It was a terrible day, and a horrible time in my life. The next morning I packed our things at the house we were staying in a few blocks from the hospital, then went to the various areas of that vast hospital to get my Mom's records, films and other pertinent paperwork, which I would hand deliver to her doctor back home. Then I worked with the nurses on getting her discharged. A few hours later we were at the airport boarding a plane back to Coeur d'Alene, Idaho. We both cried most of the flight. I'm crying right now remembering. My Mother did eventually die from Mesothelioma, on December 24th, 2003. It was a horrible time in my life, and while I feel I have worked through it emotionally enough to have moved on with my life in a healthy way, it's something I've never really gotten over. I don't care how old you are when you lose your Mother, it's a huge loss for most of us. I miss her everyday, and I'm not ashamed of it. You grieve for a person to the extent that you loved them. I love my Mom, and she continues to be the single most influential person in my life.

It's sometimes hard for me to put all of this into perspective, since my trip to Boston would have such a huge impact on my life...the scope of which I truly had no idea of at the time. So, as the story goes, several days after returning home, on September 11th, 2003, a friend of mine suggested we go shopping - he took me out to lunch and to a mall an hour away in Spokane, Washington. I needed to get out of the house, away from the heartache and emotion of the situation, and it was good to think about other things. It was that evening that I first discovered that horrible rash, and it was that fateful day that my crazy odyssey with Lyme Disease began. You can read a little more about my story with Lyme before I knew it was Lyme here.

I'm not sure exactly when I got bit - I have my theories - but it's hard to know with ticks the size of poppy seeds. I just know that this is when I mark the formal beginnings of my journey with Lyme. Sometimes it's hard to believe that ten years in, we're still dealing with it in such profound ways. Despite the length of my journey, I consider myself lucky and blessed, for so many reasons. It's crazy to me that my Mom never knew that I had contracted Lyme while we were in Boston, and it's been really hard that she hasn't been here to help me in my journey with it. But I know that somewhere in Heaven, she's been doing all she can to help me in any way that she has been able to. That thought brings me comfort and strength.

So on this 10-year-anniversary that I'd really rather not be celebrating, I'm going to focus on my blessings. That I have a wonderful husband, two beautiful children, an amazing and supportive family, lots and lots of wonderful friends, and I'm getting effective treatment that has given me my quality of life back. Life is a journey, not a destination, and I'm determined to find my joy along the way. The last decade has brought amazing challenges, accomplishments, successes, heartaches, failures and the biggest blessings of my life: my husband and our two healthy babies. Did you know that I met my husband as a result of Lyme Disease? That's a story for an entirely different post, but it's a great one. The reality is, in spite of the difficulties, I wouldn't trade any of it away - not for all the tea in China! It's a wonderful life I am living with my family, and I am grateful for each and every second of it.