It’s very difficult to give up all control even when you hand it over to people you trust implicitly.
But when things start to make no sense, when information doesn’t seem to get communicated properly and, despite the excellent care of the nurses, you just aren’t comfortable with how things are going on a certain level you find yourself finding fault all over the place… your frustration with one aspect manifests itself elsewhere.
When you’re admitted with a 103.4 temp, you just want answers. You understand that they take time. You submit to tests… even when it includes a Q-tip waaaay too far up your nose… is it really supposed to go there!? But when you finally get settled into your room and the nurse insists you had chest pain, you wonder, did I? No, you’re sure you never have in your life. And you didn’t.
Then it turns out that the notes in your file say you have pneumonia… and atrial fibrillation… oh, and atrial tachycardia. Lung and heart a mess. The cardiologist tells you that you need to ignore those notes… the EKG looks fine, the radiologist report indicates no development of pneumonia. Yes, there is something brewing and we’ll treat it as such, but it’s not pneumonia… more like pre-pneumonia. The EKG was done during episodes of high fever and shivering so there were muscle spasms to add a touch of wonkiness and current monitoring shows no issue. A MUGA scan is ordered to calm fears for the stem cell transplant… it comes back reassuringly the same as before. Then the cardiologist leaves and someone comes in to give you a pamphlet labeled “Living with Heart Failure.” OY! You wanna scream “I’M NOT A CARDIOLOGY PATIENT!!!! I’M A HEMATOLOGY PATIENT!!!”
So, you get to the point where you trust the cardiologist… after all, he makes the most sense and never discusses chest pain. But you aren’t a cardiology patient… why doesn’t the hematology department have a stronger presence? Where you thought that they’d only been in to see you once, turns out it’s been once a day. But for some reason, you just can’t remember seeing her. Chemo brain is rearing its head… yes, you have trouble retaining information… but then why does the cardiologist’s words register? How is this one doctor so ethereal that we don’t remember more than snippets of information and a vague sense of “oh yeah”?
As you begin to feel better and the time goes slowly, it’s so easy to let the frustration take hold. This isn’t where you choose to be so negativity can begin to sneak its way into your psyche.
We resolve to find ways to let this wash over us without allowing the small irritants to find a place… we need our own place of peace to heal.
Once, years ago, at a yoga class, Rich and I were participating in guided meditation. We lay on the floor, our legs going up the wall. Eyes closed, we followed the teacher’s voice as she had us find our issues and carry them with us up a mountain. Visualizing, we climbed the mountain with its obstacles… over boulders, through brush, struggling our way up the mountain with our burdens, the trail getting steeper and steeper, each step more difficult to take. In our minds, we were traveling for days, making our way step by step, up and up. The teacher told us that it was nighttime as we reached the summit. We were to observe the majesty of the universe, marvel at the multitude of stars. Then she told us to find a space between the stars, find a void in the heavens. We were to throw our burdens into that void, wish them well and let them go. Then, with one last look to the constellations above, we were to make our way down the mountain. We were to feel the freedom from burdens and run, sled, cycle… find our own means… and rejoice in the speed of the recovery. Laugh, sing…. Celebrate the lightness of being.
When we left the yoga class, I asked Rich how he came down the mountain.
“What do you mean?” “We threw our burdens to the universe and let them go and then made our way down the mountain. How did you go down the mountain? I ran, jumped and rolled. What did you do?”
“I dunno, after I threw my burdens to the stars, I fell asleep. That was a long walk up the mountain!”
So while we wait for word on when Rich will be released from North Shore and when we can restart the chemo, it might be time to hike that mountain and send some frustrations out to the void between the stars.