I purposefully have not made this blog easy to find. If it were about something more mundane, I either wouldn't write it or I would post it on Facebook because, who cares, it wouldn't really offend anyone. But for some reason the topic of brain tumors simultaneously makes me feel unusually burdened and incredibly grateful. I don't know how I survived my surgery and all the challenges that went with it, but I also feel so lucky because I know how much worse it could have been. So, who am I to talk about my journey or my path?
If anyone finds this blog--because right now I don't think I will ever share it broadly--I want to make a big disclaimer. This is merely my story. And in some ways it was awful, and in some ways it was wonderful, and in many ways it is far from being over. I just finished reading Everybody Needs a Brain Tumor by David Koelliker. He has struggled with a brain tumor for over eight years now. He has had three brain surgeries, a clinical trial (vaccine therapy), radiation, and chemo. He didn't go into a lot of detail about his first two surgeries, but from details he shared, it sounds like his recovery from those surgeries went FAR better, or at least faster, than my surgery and recovery. He was flying, going back to work, going on a trip, walking quite a bit, etc. within weeks of his surgery. I was in bed. For months. And I wanted so badly to be out living my life--I would try and then get knocked WAY back down whenever I tried. But now David has had a third surgery and his astrocytoma has perhaps progressed into being a glioblastoma (he's not explicit about this). His third surgery left him with a 37-day hospital stay, vision loss, paralysis, and loads of therapy. I can't compare. I haven't (knowingly) lived with this for eight years yet, so that might be me too. Gosh that is scary. In eight years my youngest will only be 10. I want to be fully functional so much longer than that. I want to be his involved, active mom so much longer than that. I have plans and goals and things I want to accomplish, groups of people I want to help, trips I want to take with my husband, things I want to teach my kids. Please God, please let me live longer than that.
I have an MRI this week. I'm nervous. What if you can see my tumor on this one? What if I was wrong to stop chemo? What will this new neurooncologist be like? This week is that time when I want to start researching statistics and try to predict what my future holds. It's when I have to remind myself that any of us could die tomorrow even if we are super healthy today. It's when I have to remember that God doesn't deal in probabilities.
Part of why I wanted to write this blog was to say that the recovery from brain surgery is horrible, but that it does get better after a long time. And part of why I wanted to write this blog was to say that temozolomide,that so-called mild form of chemo they give brain cancer patients, is really pretty awful. And that it is okay to think all of that stuff is awful and horrific, because at least one person (or many people) in this whole process are going to tell you how HAPPY you should be about your situation.
But in all my realism about how awful it is to have a brain tumor, I don't want to leave anyone with the impression that I think I have it worse than anyone else. If anything, having a brain tumor has taught me how bad other people have it. I don't think you can know how horrible it is to have chemo for a year until 1) you've actually done it for a year, but a close second, 2) you've done it for a few months. You can't imagine what the drugs must do to your body until you get one infection after another and can't get out of bed. You can't imagine trying to walk after brain surgery until you feel the aggravating and excruciating pain that reverberates through your skull when you try to move faster than a snail two and a half months post-surgery.
This blog is just my taste of brain cancer and certainly not an authority on the topic and certainly not the worst that anyone suffers from this disease. It's just my story, and I guess, really written for my benefit.
