Life’s not fair.
I am sure we have all heard this too many times to count.
Let me tell you a story. It begins seriously in 2017 as my husband and I are thinking about and starting to plan for our lives as empty nesters. We both have adventurous spirits and have decided that once the kids are grown we want to live on a sailboat and have many sailing adventures. The plan is to buy a sailboat about the time the last kids graduate from high school, live on the boat and sail during our vacation time and on weekends until we finally retire and go cruising full time.
It is October. We have made our annual pilgrimage to the Annapolis Sailboat Show. We wander among the booths, admiring all the shiny things. We visit the different sailboats and walk on several. They are brand new and beautiful. We sit next to each other for lunch and compare notes; the things we like, the things we don’t like. We visit the brokerage dock where we walk on a brand new (last year’s model) Dufour Grand Large. This is a spectacular 50 foot sailboat. It is brand new. And it is being sold for half price because it is last year’s model and the broker will no longer be selling the Dufour brand. We visit this boat several time over the course of the boat show. We bring our teenage sons to visit it. They are juniors in high school (yes, twins). We analyze our finances. Can we afford it? We determine it is too soon. We really want to wait until the boys have graduated from high school. So we wait.
We keep looking at sailboats. Yacht World is our constant companion. We spend hours looking at ads, sharing our finds with each other. We even contact brokers and walk on several boats. We seriously considered a 48’ Passport, a Beneteau 473, and we kept coming back to this Moody 46. The Moody was unique and the layout was perfect. We even drove to Charleston, South Carolina from Virginia to walk on it.
Life continues to happen. In January 2018 we are both recruited by a software company in South Florida to run their security program and mange their security operations center. The timing was perfect because it was cold and snowy where we were and South Florida beckoned with its endless summer. As we started our new jobs, my husband went ahead to Florida and I stayed in Virginia so the boys could finish high school. And as we considered our South Florida housing options, that Moody 46 called to us with her siren song. We bought the boat and my husband moved on to it. It was our Florida home. In June the boys graduated from high school and I moved to South Florida and onto the boat.
I am sure you are thinking this sounds like a perfect life so maybe life is unfair because it is so perfect. I am getting there. The story takes a turn.
Just after Thanksgiving 2018 I was diagnosed with Primary Medistinal Large B-Cell Lymphoma, a form of Non Hodgkin Lymphoma. I spent most of 2019 under going cancer treatment. I had intense inpatient chemotherapy and then radiation treatment to finish. By January 2020, my cancer was in remission. A hiccup. Now on with the perfect life, right? Hang on…there’s more.
Before cancer I was a runner. I ran at least 3 miles everyday. Running was my mediation and more. During cancer treatment I could not run. As soon as doctors would allow I wanted to get back to running. You have to recover from cancer treatment. It takes a lot out of you. As I am recovering, working on rebuilding my strength, working my way back to running, something isn’t right. Something is wrong. As soon as I am the least bit tired my left leg starts to drag and I have tremendous difficulty lifting my foot, not just to run, but to simply walk. I brush it off. The cancer treatment was rough and clearly took a larger toll on my body than I realized. I will just take it slower. But the problem with my left leg doesn’t improve and it might have worsened. I mention this to my oncologist who sends me to a neurologist who sends me to get an MRI. One MRI turns into two and then three and then a lumbar puncture so my spinal fluid can be analyzed and then another MRI.
The neurologist explains that I have lesions on both my brain and a small section of my spinal cord. These lesions are scars. Areas where the protective myelin sheath has been damaged. Without the sheath signals from my brain to my left leg are not getting transmitted properly and this is why I am having trouble walking. And this has a name. I have MS – multiple sclerosis.
It has taken me 2 years to write this. I have struggled to accept this diagnosis. I have researched my symptoms and looked for other causes. I have been sure several times that this has to be something caused by the chemotherapy or the radiation. I did extensive research into the neurotoxity of the chemotherapy drugs I received. It simply can’t be MS because no one is that unlucky to get cancer and then MS. In the end, it doesn’t matter if this is officially MS or brain damage caused by chemotherapy that is like MS because the outcome is the same.
But life’s not fair.
So, I have MS, or something that acts like MS. It is very early. All the MRIs have shown no changes – no new lesions. This is a good thing.
I still live on my sailboat. I still plan to have grand sailing adventures. I just have to adapt to the limitations that come with MS.
And I like I did through my cancer treatment (the whole story is here if you want to catch up), I will write about my journey with MS.