Imagine you are a Monarch Butterfly caterpillar. You are on a milkweed leaf munching away. Your skin is stripped yellow, black, and white to look like a part of the plant. At the same time you are aware that predators would love to eat you. At long last, you begin to change into a chrysalis. Finally, your new home turns gray. Your worries are over. You have that sense of protection you have craved. Nothing can get to you now. Nothing. Days later, your protection begins to crack releasing a built up pressure. You begin to squeeze out of your old skin. But you have changed. You are not a worm. You are a beautiful new creature.
That’s the way we have felt here at MD Anderson. Protected, like in a cocoon. We were on a special floor for transplant patients. Everyone knew the special needs for my health. Upon release from the hospital on Day +12 we were sent to Ambulatory Treatment Center (ATC) for daily visits. It was a special unit composed of nurses who know the needs of Stem Cell Transplant (STC) patients. We were safe, protected, comfortable that I had the best possible care.
The few times we were ushered off to a non-transplant area, things changed. We were not greeted with the same assurance. We were mostly in a holding pattern and anxious to get back to our little cocoon. Then our shell began to crack.
We were given days of from ATC. No visit. No blood draw. We enjoyed our freedom knowing that we would soon be back to safety. Then the days off became more numerous. Still we were comfortable. Then it happened.
Dr. Khouri came for a Tuesday visit and announced that I had graduated out of the now frequent ATC visits. We were thrust into the cold. We wouldn’t see anyone from the STC until our next visit with Dr. Khouri a week and a half later. Even at that, we still had several occasions to see the results of a blood draw – tests, you know. Then they ended.
I will not have another blood test for a week. I don’t know what is happening inside. I know how I am outside. Physically, I’m fine. Emotionally, I think it is taking a bit of a toll. I want to know, but I can’t know – not for another three days. My cocoon is shattering. I am being thrust into the great unknown.
The day after my next doctor’s visit, we will be traveling home. Freedom. Scary freedom. I will have to spread my new wings and fly. Fly? Like the monarch, it is an essential part of my new life. I will fly into the loving hands of my wonderful family and friends. I will fly into the hands of a new oncologist. One I have never met. I will fly into a scary world of potential disease and sickness. I will be flying with only a tenuous electronic connection to my MD Anderson support team.
Lord, give me a monarch’s courage. I need it to fly into my new life. Show me what to do, what to say, where to go. I’m out of the cocoon and spreading my wings.