I haven’t written in a while, but seeing my niece blog regularly lately it got me motivated. I’ve wanted to write for a while, but nothing really that I wanted to write about. But last night I couldn’t sleep because of all the stress and emotions bottled up inside and I just need to write it out. I have that feeling again like in other emotional posts where I need to get the words to “paper” and the words come easy since it’s all feelings and no thinking of what to say. It’s always helped in the past and I need the help now. It also happened that I forgot my purse in the rush to catch the train, so no headphones to listen to music or ebook. So, here we go.
The hubby had his regular scheduled dialysis clinic appointment with the nephrology team. He said it went well. Numbers from his blood work were within acceptable range. I didn’t think anything else about it. But later that night he tells me that they (nephrology team) had scheduled an ultra sound for his kidneys to find out if there are any tumors. “Why do they think that??”, I ask with fear planting a seed in my heart.
So, here’s some kidney health education for you readers in the laymen terms as I understand it. The kidneys help regulate how much hemoglobin is produced in the body. With his 0% functioning kidneys he has to take steroids to help regulate his levels. The amount of times he has to take steroids is monitored with regular blood work analysis and clinic appointments.
They want to schedule this ultrasound because he hasn’t had to take the steroids for a while. In my ignorance I thought that was good since it’s less meds, right? Wrong. They are concerned that there are tumors on his kidneys that is telling the body to make the hemoglobin. I think of it as this tumor filling with blood, needing more blood to grow larger and the body producing the hemoglobin to feed it. This is why his body is producing hemoglobin. This is why he doesn’t need those steroids. This is what I think about until we find out the results from the ultrasound. This is why I’m stressed. The small hopeful side of tells me not to worry. Can’t stress about something you don’t know, so why worry until then. Once you get the answer, then you can do/worry about it. Until then take it one day at a time. Enjoy each day together. Live life. But, when I allow myself to wallow, I think what will I do? I still need him. Our children need him. I don’t want him to suffer. God help us.
I ask how long has it been since he’s taken his steroid medication. He says “a year”. Wtf?! That long?? Why is the nephrology team only concerned now and not sooner? Why don’t I know this?? I am racked with guilt for not being aware of how long it’s been since he’s last taken this medication. With everything else that’s going on with my life I leave it to him to take care of that. It’s the only way I can survive. I am suffering my own ailments as of late (another post…..maybe) and blindly left it in his hands. Yes, he’s a grown man who needs to be in charge/control of his health, but there is a caring wife/caregiver title to help support him and I feel I am undeserving of the title. I have let him and myself down. It’s sink or swim and regarding this, I let it sink so I can swim. I’m not sure if I’d truly describe it as swimming, but more barely keeping my head above water.
I watch him sleep and tears slide down my face. I silently tell him I’m sorry. I try to forgive myself and rationalize what I can do. He stirs awake and with one eye barely open, sees me and asks what’s wrong.
Me: I’m afraid
Him: about what?
Me: for you. About the tumors.
Him: oh. (Rolls over)
I continue with the silent tears as I don’t want to disturb him since it was not a good health night. Nausea and stomach pain kept him from doing dialysis and he tried to sleep (there was moaning, tossing and turning, restless sleep). I want him to get a little more rest if even if only for a few more minutes. Where’s my sleep? Not even on my awareness radar, although it is on my body’s.
I remember being feeling even more anxious about his health when he just turned over because he usually tells me not to worry. But this time he didn’t. I start to cry a little harder. It can’t be helped. I want him to rest but this fear is growing larger than I can control. He turns around and tells me not to worry and that everything will be fine. He rolls back over. I still have tears streaming down and remember thinking I still don’t feel any better about the situation even with his reassurance. I blew my nose a few times and start to put the emotions back into a box to face the day.
I choose to take the next train so I can talk with him some more. Kids are still sleeping. It’s dark out still. Something about talking in the dark makes me feel like I can open up more without him seeing the worry on my face. I lay down beside him and say it again, “I’m scared”. He tells me not to worry, he’s not.
Him: I’m like wolverine.
Me: oh franker (I finally laugh and my heart lightens)
Him: I have to think that way
And with that last sentence I feel his fear and see his brave face.