Hospitals. What can I say about hospitals? I’m glad they are there, they help millions of people — including myself — but it sure can be difficult to stay in them over and over again for any extended period of time. Since November, I’ve been in the hospital four times. This most recent hospital stay, the result of a rampant infection, completely wore me out.
And the fallout continues …
More than a month later, my arm is still healing. You see, I can only use one arm for IVs and blood work. But the hideously strong medications blew out a vein once a day until we needed to resort to using my foot.
My lymphedema has gotten worse. Before, it was just my upper arm. But this latest infection — which led to my latest surgery — caused it to expand to my lower arm and my back. Now, I have to put a soft cast on my arm, then compression garments, then gloves … and don’t even get me started on what they are doing to compress my back and chest. I can’t wear any of my favorite clothes. Now they want to include me in a trial by wearing some sort of vest with arm that I need to plug into every day. Wow, I’m exhausted just writing it down … and that was all just this week. Can’t wait to see what’s in store for me next week!!!
And have I mentioned the nausea? I think I’ve been nauseous since the day I got my diagnosis. But a whole new level of nausea overcame me with this last infection. First, it was from those evil antibiotics. Then, post-surgery, it was the painkillers. They’d hit a nerve when they put the drain in, and my pain was off the charts. The powerful painkillers they gave me made me so sick I couldn’t lift my head off the pillow. I had to lie really, really still … even moving my eyeballs made the room spin. I had to concentrate on the TV to keep my eyes focused on one spot. When I couldn’t stand it anymore, I refused all painkillers. I know it sounds crazy, but I can handle terrible pain easier than I can tolerate the nausea. That kind of nausea just overwhelms and debilitates me.
A month later, the nausea hasn’t gone away. But it’s nothing like it was on the painkillers — except on the two or three days a week that I have physical therapy to try to reverse some of that new lymphedema. Apparently, having a PT mess around with your lymph nodes really messes with your whole system.
No matter what I do, I just can’t get rid of the nausea! It follows me wherever I go. I can’t drive home from my frequent trips to Johns Hopkins without taking every anti-nausea drug in my arsenal. Today, someone told me told popcorn cures nausea. How crazy is that?! I know people mean well when they offer advice like this, but I have serious doubts about most of it. Take ginger, for example. The cancer cookbooks swear by it, and my friends spent months cooking with it. I refuse to eat anything ginger again!!! It doesn’t work for me!! Yuck!!
The worst fallout of this most recent stay was how hard it was on my children. Especially my daughter. When I’m in the hospital, I can’t take her to the bus stop in the morning. I can’t come to school for lunch. I can’t take her to her activities in the afternoon. I can’t be there for her at all.
When I came home from the hospital last month, I noticed she was limping. My 9-year-old soccer star said her ankle hurt whenever she put pressure on it. I didn’t want to let any grass grow under this problem, so, despite my incredible pain and the drainage tubes hanging from my body, I drove her from appointment to appointment to get some answers. I didn’t expect the answer to be related to me.
I know it is so difficult for my kids to have a sick mom all the time. When I came home from the hospital, Bella seemed so lost, so longing to spend time with me, but I could barely get up the stairs to put her to bed. I’m always feeling like I have to make up for time lost or for not being like some of the other moms. No matter how hard I may try, I can’t seem to catch up.
So now, the doctors believe she is expressing her emotional pain in a physical way. When I asked the doctor if it had anything to do with me — with my cancer — he said that it was “very possibly so.” Apparently, this is somewhat common among children, especially girls. The physical pain she feels is very real, and the doctors even prescribed her physical therapy. I prescribed her lots of time with me. I’m happy to say both treatments are producing positive results.
But that feeling of always being behind, of being less …, well, I wonder how my children will look upon their childhood as they grow into adults. I wonder what memories will be stronger: my illness and all I couldn’t do, or my strength and all that I tried to “get in” or accomplish for them. It’s all for them. I hope they know they are the strength that pushes me within and the light that guides me forward . I hope they remember I always wanted them to be worry-free and happy. To not suffer the fallout.