I have so many words I need to get out. As always, I have no desire to publish negativity or bad news. And, I’m sorry. But, it’s harder to see the good each day. Anger is consuming me as hard as I try to escape it. And so much sadness.
It’s a holiday weekend and we are stuck. We can’t enjoy time with friends or family. We aren’t allowed to travel for fear of getting too far from the only place who knows how to care for Mason. It’s sobering to realize that any old hospital won’t due if our nine-year-old runs even the slightest fever. And, his little body is low on every imaginable nutrient and blood component, so being around people is a danger to him. We’ve found ourselves weighing his emotional well-being with his physical well-being. We know that being around loved ones would be so, so good for his spirit. But, we also know that making a decision that puts him at risk would be one we could never forgive ourselves for. We had so hoped to be able to spend a couple of days in Nebraska and it just isn’t going to be possible.
This is our time “off” – no chemo, no hospital stays. And, yet we spent the entire day at the cancer center yesterday getting blood and nutrients. There hasn’t been even a half day that has gone by that we haven’t had to have medical advice or care from either home health or oncology. It completely wears you out. So many things to remember and worry about. So many decisions that have to be made with no hope of a positive outcome, just hope for a lesser of two evils. I’ve pretty much lost all desire to take care of our home, if it wasn’t necessary health-wise for Mason, I might not. Just monitoring all of the medicine is a chore on its own.
A couple of days ago, Mason mentioned that his ears have been ringing off and on. His oncologist told us yesterday that this was a sign of hearing loss from the Cisplatin (chemo) he’s been getting. She confirmed that all hearing loss that happens during chemo will be permanent. Today, he was taking his temperature for what must be the millionth time since January, the thermometer beeped as it finished and he just sat there watching TV. Matt and I were in another room and could both hear it. We tried again and nothing. He can’t hear the beeps. I cried as I watched him completely clueless the second time. That moment will forever be etched into my brain.
Hearing loss is just one of an entire list of permanent side effects to chemo. But, it’s our only choice. And, even worse, many cancer patients end up with another cancer from the chemo. Chemo is given to a child to kill cancer and ends up causing it. It’s just horrifying to comprehend. Several moms in my online support group posted just this week about their child being in remission from osteosarcoma and just finding out they now have a second cancer. How do you even handle news like that?
I never appreciated what we had before cancer crashed into our family. I mourn what our lives used to be. I get angry when people complain about almost everything. I get jealous when I see a little boy with dirt and grass stains on his baseball pants. I get jealous when I see kids with sun-kissed skin. I am tired of being looked at with sad eyes. I’m terrified of losing friendships because I can no longer participate in life and do all of the taking and no giving back. I’m terrified that we’ve become “that family” that no one knows how to talk to anymore. I’m all out of things to do to make it better. All I know to do is pray.