I recently passed 39 months since my diagnosis. I'm doing pretty darn well. Yes I had a relapse back in March, but we were able to reach into our previous back of tricks and we've been using Treanda (bendamustine) to beat back the myeloma. In a week I'll do my monthly labs and we'll know what happens going forward. More treanda? Maintenance? We'll see.
Friday I saw my cancer coach for the first time in a couple of years. She was instrumental in Leslie and me developing techniques to manage the disease and to manage the people who care about me. I've developed a heck of a support network. Fellow patients who provide me with motivation, inspiration and targets to aim for. Here's what I've learned. We all deal with this shit differently. Just like there is no one size fits all for treating myeloma. There is no one size fits all for how to deal with the mental challenges.
To be clear, I've never reached complete response or complete remission. I've got an aggressive myeloma that requires real mindfulness. But I'm also fortunate, I feel good, life is normal. Lately though, I worry that as the months pass by, it's just a matter of time before the myeloma regains some momentum. I'm not bothered by this. I've accepted this. And by accepting this, it doesn't mean I'm not going to fight like heck to kick myeloma's ass. I might have slipped in a double negative that negates my point. But you know what I mean. But in my acceptance of this, I worry that I'm wasting my time. I go to work. I stress about bills. I stress about not keeping in touch with people. I feel myself getting bogged down in obligations. I know many people tap into a vast network of family and friends to deal with a cancer diagnosis. I took a little different path. I wanted to retreat into my own cocoon and dig in for the fight. There are times, where I wish I had that tight bond of support. Family game night. Friends cooking meals. I miss that. But I also know I'm a bit of loner and it's hard for me to share. It's ironic in a way. I don't want people to treat me any differently cause I have a cancer. But there are times that I want some acknowledgment of what I'm dealing with. As time by goes by, I think people forget. They see me living a normal life. Matt must be ok. I let obligations eat me up. I carry around guilt that leads to bitterness. I think this is why I retreat a bit. Some friends of ours had a cancer scare last year. He was diagnosed, treated and got to complete remission in a span of 12 months. To celebrate remission, they bought themselves a new car. Great news. But at the risk of sounding ugly and petty, where is my celebratory moment or purchase? I'm 39 months and counting and haven't reached a point where I can say "hot damn, I'm cured!!!"
I suppose that's the frustrating thing. What's my status? What do I want from people? What do I want from myself? I know that I'm increasingly wanting to simplify and downsize my life. I need to enjoy every day. I need to not feel like there are things I am obligated to do. Obligation. I'm starting to hate that word.
Sunday, August 10, 2014
We've gained some traction with our petition for Oral Parity. The Senate has now proposed a bill that mirrors HR 1409. Fresh off the pr...