My sister pointed out that I had not updated the blog in a while. 'A while' being a good half a year.
Truth be told I have spent the last six months very deliberately focusing my energies on things that don't have to do with PMP, that don't have to do with cancer. That being said, I started this blog with the intention of chronicling my journey and sharing it with others out there. I was ( and am) keenly aware that when people start searching online for clues about pseudomyxoma peritonei, appendix cancer or the cytoreductive surgery much of what they find is distressing. I did the same searches, late into the night when I couldn't sleep. So I promised not to simply stop updating, but to now and then prop up and give a status update. This Christmas Eve I will be turning 40 years old. Some friends joke and say "You're turning 30, right?" and I smile and correct them. I have earned those 40 years, and for a long time didn't think I'd make it to this milestone.
I am, at present, still NED. Not a day goes by that I don't think about how lucky I am, because I have lost many fellow PMP friends along the way . Depressingly there is still scant research and awareness, although doctors, patients and caregivers are doing their best to change this. I am now involved with a local group of PMP patients as well, and education / advocacy are priorities for most of us. How could they not be? We knew so little of this cancer when we were diagnosed, and people's reactions hurt sometimes. I still remember the one person that remarked that I was so lucky, because if they just took out my appendix I'd be cured - wouldn't that be nice?
The reason I have made a concerted effort to step away from talking/ thinking about PMP all the time was because I saw the toll that it was taking on my emotional well-being and my family's. You meet friends and acquaintances and two years later the unspoken question seems to be 'Are you done talking/thinking about cancer yet?' and the answer is no. No, because cancer is never done with you. Once in touches you there's a part of it that always lingers, like Damocles' sword. The anxiety and fear that luck could run out and the next test change your life again, can be overwhelming.
With time I realized that cancer wasn't the first thing on my mind in the morning, or the thing that kept me up at night. I could shut it away for a while, and concentrate on living. So that is what I have been doing, focusing my energies and attention elsewhere.
I've often said that the hardest part of my diagnosis was telling my then 7 year old son. I stand by that sentiment. One of the unfortunate by-products of my cancer fight was that I put everything else on hold, on the backburner. I was in the fight of my life, and couldn't focus on anything else. Our boy's anxiety grew, and we finally found him a counselor to help him through it. At the time I was going through chemotherapy it became apparent that he was unhappy, disengaged at school. We thought that it may have a lot to do with my ongoing battle ( and I'm sure a lot of it did) but it became apparent over time that it also had to do with a toxic school environment for him. We pulled him out to homeschool, and the past year and half has been about rebuilding that peace of mind that cancer stole from us, but especially from him.
He is doing great now - balanced and happy, studying some classes with me and others at a school that tries to understand his learning needs ( like being a 10 year old doing high school math). He doesn't blame me for that year from hell, when we couldn't see how much HE was struggling because it was all we could do to hold our heads above water. He tells me often how happy he is NOW, because we have defeated our archenemy, and now we can focus on moving forward. Did I mention how quickly he had to grow up? I catch him now and then, not telling me his own stresses because he doesn't want to add them to MY plate. He searches for answers in physics and philosophy, for ways to banish uncertainty.
The thing is, two and a half years later we still live with that uncertainty. We always will. Much like his likely educational path, I think our lives are no longer simple and linear. We will have to find our own way, or make it.