Saturday, August 6, 2011

August 6: Hospitals, Prisons, and Jailbreaks

My brother James happened to have a softball tournament in Chattanooga. He coaches a girls fast-pitch team, and they lost two tough games and were eliminated. As a result, though, he was free to spend the weekend here.

Early on, with hair
So, he comes in my room on Thursday, finds out I'm not allowed to leave the floor, and he asks me what the difference is between my hospital room and a jail cell.

I hadn't really thought that through.

What's funny is that on both Thursday and Friday, they wheeled Jerry (fellow patient I keep asking for prayer for) outside for 30 minutes each day. It transformed his mood. It did wonders for him, and he didn't mind saying so.

So I told my brother about that, and he says, "Yeah, that's just like a prison."

On top of all that, a couple days ago, in a nap either during the day or between getting my vital signs checked at night, I had a dream that I sneaked off to a theater with my family, probably to watch the new Planet of the Apes movie, which I would love to see.

Anyway, we got to the theater, bought tickets, and went inside, but the staff informed me that I would have to leave my IV pole in the lobby. (Yeah, I was still hooked to my IV in this dream.) So they point to a corner, where there are several other IV poles standing, apparently from other patients that had sneaked out of the hospital.

I was scared of getting caught, though, or of them mixing up my IV pole with the others, so I sat down in a balcony overlooking the lobby. (Hey, it was a dream.) I was still sitting there puzzling over the situation when someone woke me up.

Well, I was explaining this dream to Jerry while his "care partner" was in the room, and she laughed. I told her that one of the more long-time nurses here had told me that if I make sure to come back before 6:00 in the morning, that I could get away with sneaking off for the night. (She was joking.)

Today, without hair and 10 pounds lighter
So we got to talking about how to make it out of the hospital with an IV pole. The IV pole does roll, so we were laughing at the idea of driving down the road, one arm stuck out the window rolling the IV pole down the road, and how a cinema would really react if you showed up toting an IV pole.

When I left Jerry's room, I heard that care partner laughing it up with my nurse and care partner.

I shouted down the hallway, "Hey, you're not giving away my plans, are you?"

My care partner turned and said, "She is! You are busted! There will be chains and a padlock on your door tonight."

Maybe it really is a prison.

My Current Medical Status

I can go home when my "Absolute Neutrophil Count" reaches 500. Bare minimum for normal people is 1500, and the NIH says it ought to be at least 2500. It can be as high as 8000 and be normal, and 4500 or so would be average.

You're only at increased risk of infection below 1000, and you're dangerously at risk below 500. At that stage, they refer to you as "neutropenic."

Mine is 30, up from zero three days ago. I spent two days at 10 before making this great jump to 30.

I think it's supposed to climb a lot faster once you get going.

I get to go home for 2 weeks, then get a marrow biopsy to make sure everything's still okay, and then I'll get an easier dose of chemo called a "consolidation" round. I get to delay the first consolidation round, though, to go to a conference in Jacksonville, FL over Labor Day weekend.

I do that again, probably at the start of October, and then I wait around for a transplant ... assuming all goes well, which seems to be God's plan for me so far. I think that issues surrounding the transplant and the really intensive dose of chemo involved with it will provide sufficient troubles for me. I try not to think about that yet.


  1. I could visualize you going off with an arm sticking out the window holding your I.V. pole. Thou I must say I have only seen that on movies. Love ya Shammah

  2. What came to my mind immediately picturing the IV pole out the window was the scene from Marley & Me when they're in the car and Marley tries to escape....keep up that great sense of humor! xoxo

  3. I've never seen Marley and me. I just went and read a description of it. I'm pretty sure I could not handle the tension of watching a movie like that; I'd be wanting to shoot the dog through most of the movie.

    Gosh, I wonder if I make the nurses feel like that!

  4. I hope things work out well for you. I was diagnosed on June 6 of this year with APL, a subtype of AML. I spent almost 5weeks in the hospital so I know your pain. I did the chemo right away and this week go in to talk about starting arsenic treatments as consolidation along with ATRA.

    I just turned 51 last Friday. I was brought up catholic and went to catholic schools. I have a strong moral background. I'm just wondering what your feeling about this disease? What are you feeling on a daily basis?

    I am feeling guilty. Hard to explain. I have a good friend who has been fighting stage 4 cancer for over 3years and wants to live. I have a cousin that had a stroke at age 40 and is in a chair and can hardly speak. He has 3young kids. Now that I'm in remission I am told that there is a 90% chance of cure if I do the consolidation and maintenance treatments. Why am I allowed to live a healthy life? Before I was diagnosed, I thought it was my heart going, out of breath, heart working hard, etc. I prayed to make it quick and painless. Now I'm considering stopping treatments and letting it come back and run it's course. I'm thinking my prayers were answered and I interfered by allowing chemo to be used in the first place.

    I feel like my mission on earth is done, I have no other contributions yo make in this world. I am just interested in opinions from others that are going through the same thing.

    I lust wondering if my feelings are normal. I have till Thursday to make my decision to refuse anymore treatments.

  5. Your feelings may or may not be normal, but they're not okay. In fact, they're sinful ... and pretty selfish.

    You are trying to have too much control over your life. You're 51, and you're going to throw away the rest of your life? For what reason?

    You're Catholic, so I assume you believe in God as Creator. So what are you telling God? You don't see the purpose, so no thank you for the gift of life.

    Are you helping friends by dying?

    If you have no purpose in this life, then quit being so lazy. Get up and seek God and look around and find a reason to live that has nothing to do with yourself. If there's anything that dying people ought to learn, it's that life is not about us! It's a wonderful gift, and we can devote our lives to being a blessing to those around us!

    "It is he that has made us, and not we ourselves." (Ps. 100:3)

    You've put yourself in too high a position in your life. It's time to step down, thank God for his kindness to you and that you can live to show kindness to your "good friend" who could use joy and encouragement in his stage 4 cancer and quit acting like life is hopeless.

    It's not about you, friend. The reason God gives the gift of life is because he wants and expects you to use it to the best of your ability.

    By the way, consciences are to be trained. Teach your conscience that feeling guilty about the goodness of God to you is foolish, then feel guilty about the thought of throwing away the rest of your life rather than living to serve as Jesus commanded.

    Those are my thoughts.