Myeloma is one thing. And that's our main focus. We have it under control. I'm only doing my darzalex infusion once a month. That's good. But the new schedule and my 100% focus on my countdown to retirement translated into me totally forgetting to do my monthly 24 urine collection a couple of weeks ago. That's key to tracking my disease. With my tiredness, I was curious about how the numbers are doing. I went ahead and collected last week and should hear the results this week. I went ahead and did chemo without the results this past Friday. That's all fine and dandy. It's likely the pomalyst that I take orally that's making me tired. But we can't cut it out, it works in concert with darzalex and dex. And then this is a jacked up thing about health care and insurance and the FDA. You have to follow the FDA's guidelines for the darzalex infusion schedule. If for some reason the monthly infusion isn't enough to keep myeloma at bay and we wanted to go back to once every two weeks, insurance wouldn't cover it. Well that seems like bullshit.
As totally excited as I am about not working, I recently it also got me thinking about how I relate to the disease. One of the reasons, falling short of the Kilimanjaro summit bugged me is that it left me mentally feeling like a cancer patient. It was a slap of a reminder that I have limitations. That sucks. When I was younger and healthier, if I fell short of a challenge, I knew I would have other opportunities. When I did my first century bike ride with my brother, I made it about 98.5 miles. At that point my entire body cramped. I hadn't hydrated enough on a hot day. I learned my lesson and made sure that I was prepared and smart doing future rides. But Kilimanjaro, realistically when will I have the chance again? I'll find some sort of challenge that gives me something to shoot for. But you can see how for a week or so after getting home, I was bummed and it was more about the mental "oh right I have cancer".
So when thinking about not working any more, I get a slight emotional twinge knowing that I am retiring because I have this incurable disease. For the past six years, I've worked and tried to live as normally as possible. It's allowed me to feel like a champ and kick ass. It's time to slow things down. But I don't want to feel like the disease has won. It hasn't of course. I'm excited for the limitless opportunities that now lie ahead of me. And of course, when you think about retiring there is a part of you that wonders how many years you have to live. I might have a whole lot of years ahead of me. With myeloma you can have the cancer under control, but dealing with side effects can be non-stop. And 20 years of various annoyances doesn't sound super fun. With the cancer and the treatment, my immune system is pure crap. I've got a host of things that pop up. My latest bug-a-boo is my index finger. We've been trying to clear up a couple of warts for months. But with little luck. I have a dermatologist visit in a couple of weeks and we'll talk about how to keep them under control because they are getting ridiculous. And I'll tell you what, I'd be lying if I said I haven't thought about chopping off my fingertip. Do I really need it? Probably not. It's not like it's my big toe which keeps me from tipping over. And I don't mean to say I've thought about it a lot but it has crossed my mind. I suppose for now I'll keep the fingertip, but we'll see how it progresses.
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...