Day +96: Out of the Cocoon

monarchImagine 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.

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4 Responses to Day +96: Out of the Cocoon

  1. Michael (Brian) Coffman says:

    Hello Harley, I just read your latest blog, and I don’t believe your story could have been told any better! I would imagine You have been thru a whole lot more in your life time then I ever have, but I wanted to share a bit of my story with you, as I had alot of the same feelings You are having right now, when I went thru a very serious Medical issue a few years ago, and really am still dealing with. I left My home at the end of August in 2011, to visit My Mother whom was in a nursing home at this time, due to a severe stroke. I went to see her because she had stopped eating, and had given up on life, and I thought I could bring her out of it, and get her to start eating again. I was there for a total of 3 days, I had been staying at my brothers while there, and that 3rd night, something went horribly wrong inside My stomach, and I knew it was very bad, (Oh and by the way I live in Phoenix AZ and I was now back in Illinois) I immediately went by ambulance to the hospital, I was originally taken to a small town hospital, but they ended up transporting Me to one of the very best hospitals in Peoria, IL So this is where my story is somewhat similar to yours, I was a very long way from home, My wife and My 7 year old son were back in Phoenix, I had to have a major operation, and they had me in a coma for about 25 days, and on a ventilator etc…, When I awoke from the coma state they had me in, I had been cut from my sternum to down past my belly button, and from one side to the other, I had I don’t know how many staples and stitches in me, I couldn’t walk, I couldn’t talk, I was in dire straits, But I, Like you felt I was in the best place in the world to get my care, The Doctors and Nurses and aids were Amazing, I felt safe there, They took the ventilator off, and covered the hole and I could talk again, They had me going to physical therapy 3 times a day and on weekends, but really what are weekends when your in the hospital. Anyway it was time to come home after 53 days in the hospital, I wanted so badly to come home, I hadn’t seen my son, or my wife in 2 months, But I was scared to death of leaving that hospital, I know are situations aren’t exactly the same but they’re kind of similar. The day came and it was like, ok get in this wheel chair, and they wheeled me downstairs and outside, and said Goodbye Mr. Coffman, and Good Luck, and My brother put me in his car and took me directly to the airport in Chicago, and I boarded the Plane and I was alone, Not a Doctor or Nurse to be found, I was scared to death, I had to put it all in Gods hands, I like you was going to have to go see Doctors, I’ve never seen before, etc…The Good people on the airplane helped me into a wheelchair and wheeled me thru the terminal to my awaiting family, They looked at me kind of strangely, and they weren’t sure whether to hug me or not, afraid they might hurt me, but I assured them it would be ok, lol. They took me home, and My scared self, said self you can do this, I had pik lines, I was giving myself IV”S, shots in the stomach, etc… I was doing all of the things the doctors and Nurses were doing for me before, I did have home health which came on a daily basis, which was nice, and made me feel a little better when they were there, I also had a wound vac, that was connected to my stomach 24/7 for about a month after that, so, I get where your going with your story, I just wanted to let you know , that it will be ok when you come home, their will be people there for you, and as strong as a person as you are, you will be fine, plus you have a strong family and it sounds like one of the best wifes a person could have to help you with whatever you need. The biggest thing you have to draw from is your faith in God, We all know his will is his will and thy wiill be done, however He sees fit, But I believe He wants you to be that Monarch, and fly home, and live life to it’s very fullest, I hope You don’t mind me writing you this long drawn out story of mine, but I just wanted you to know it will be ok, no matter how scary it may be right now, You will be so happy to be back home, and it will get easier everyday, and the Doctors here are not the same, but they are good, I just wanted to let you know from someone that’s kind of been thru the same thing, it may be scary now, but you will be so glad to be home! I am so sorry for this being so long, I meant to write you a short note, but just kept writing and writing, I couldn’t stop, Lol 🙂 I wish You and your family well, and God Bless You Sir,

  2. Harlely, we really liked your new one that is out today. Such a good example of what you are going through .We are so happy that you get to go home and we pray every thing goes perfect for you. Much Love,

    Mom and Dad

  3. Wendy Lee says:

    Thank you for sharing. My boyfriend is +28 today, it’s nice to have someone’s perspective just ahead of us. Good Luck spreading your wings!

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