Monday, March 2, 2015
It Isn't Hard Enough Yet
Have you ever noticed that the moment right before you are ready to give up is also the moment right before a miracle happens?
I haven’t offered much of a medical update on here for a while.
How do you write about the fact that your husband lost virtually all strength and movement? How do explain how terrifying it is to see a physical deterioration that gets worse and worse each day.
How do you articulate the feelings that come when his doctors call him in and tell him that they might recommend stopping radiation treatments in light of the rapid physical deterioration. They are concerned that the symptoms we are seeing may evidence that radiation isn’t effective or that radiation may be making those symptoms worse. How do wrap your mind around talking about “quality of life” as opposed to simply talking about life?
As I talked with one of the doctors later on that particularly hard day privately he told me, “It’s unfortunate that we often metaphorically attach the analogy of a battle to fighting cancer because when things get too hard, and it becomes questionable as to whether or not treatments should continue to be administered some patients can view stopping treatment as ‘giving up.’ We are in this as long as Trevor wants to be in this. But if you can talk with him, help him understand that he may never regain the movement. Continuing radiation could make it worse. Tell him that he isn’t letting anyone down. Tell him he doesn’t have to do this anymore.”
How do you tell your husband that?
But I tried. In the dark quiet of our room one night I spoke slowly and carefully about the things the doctors had said. I assured Trevor I loved him, that I would hold his heart with me forever. That if he was done, this all could be done. Whatever time there is could be spent without drugs and doctors and IVs and appointments. I told him I would support him in whatever course he decided to take this part of his life. I would be there. I was with him.
“It isn’t hard enough yet to quit.” He responded.
And again, I wondered, how?
How is it not hard enough to be in pain all day and all night long? How is it not hard enough to be so tired that you can have only one or two sustained conversations per day? How is it not hard enough to not be able to feed yourself? How is it not hard enough to be so overcome with emotion when your kids hug you or your father lifts your dead-weight that you weep? How is it not hard enough to try and manage anxiety attacks that flare easily and are difficult to calm? How is it not hard enough to lose control of bodily functions we all take for granted? How is it not hard enough to submit yourself everyday to treatments that make you feel exhausted and awful? How is it hard enough to not be able to move at all?
But all I said was, “I’m with you.”
Trevor has a spirit composed of a magnitude and strength that cannot be contained by a physical body. Nor will it be limited by a physical body.
To hear him tell it, after everyone who mattered the most to him was telling him it was okay to quit he became even more committed to getting better.
And, miraculously, he started to.
I will never believe anything less than that he is lifted by the heavenly and humanly collective energies, faiths and wills expended on our part, and by his own divine strength.
Slowly he has begun to regain some movements. He sits straighter on his own now, fighting hard to find his balance. He can join us at the table. He can lift his right arm again, can balance a fork between his fingers and can feed himself at every meal. He can take aided steps, standing and pivoting more on his own each day. He can slowly read small amounts of text that eluded him last week. He can find more focus even when the house fills with happy noise and activity. He can hold me again at night and we can connect through tender words and feelings.
Does all of this mean that he is getting better?
The short answer is that this moment is better—and that is all that matters. We have this moment.
Hopefully more mobility will come. Hopefully a stabilization period will come.
Trevor will finish his last radiation treatment today. For a while, at least, this means no more daily trips to Salt Lake City. It means his brain can begin to manage the damage caused by the radiation, and that might result in even more improvement.
We hope the radiation has disrupted the cancer’s progression.
We won’t know much until we have an MRI on March 24.
Until then, we won’t let the fear of tomorrow rob us of the miracles of today. And we don’t have to look very far to see just how many miracles there are.