Wednesday, May 21, 2014

Once More, Brave Friend, Into The Fray

I received the analysis and the actual images of my latest PET/CT scan. It revealed a mighty and fierce myeloma lesion in my C2 spinous process. Dr G said the risk of my neck breaking is very high. That spot is known for the infamous, "Hangman's Break" which is the place the neck breaks when the rope snaps tight causing immediate and complete paralysis. Dr G said that is why she wants me to start radiation immediately.

Her argument hit home. It must have been the vivid description. Ya think?

Tomorrow I meet a radiation therapy team at Bayonne Radiation Practice to plan a course of treatments. It took a week to get the medical records over there and then another week before I could get an appointment with the Advance Practice Intake Nurses.

I did start meds already last week. I have been getting this one ever since I was first diagnosed in 2005. It's called dexamethasone. I get forty mg/day last week for four days; same this week. This stuff turns my on switch "On." Then the motor runs about five times normal speed.

The other med I will be taking is Lenalidomide at twenty mg/day for twenty-one days; seven days off. This stuff is a special kind of poison.
I know I do not want chemo again. 
But I cannot be so selfish; my wife says
I have to fight so I can make my life longer for
her and for our children and our family.

So I will treat those words as though they have come from The Pharoah in the epic movie "The Ten Commandments," when he says "So let it be written. So let it be done!"


  1. Here is what I wrote when I found out my remission was ending. This explains what I am saying in this post that "I do not want chemo again."
    .. those two drugs banged me down until there wasn't much left of me. There was also Dexamethasone too. I had become quite familiar with that rocket fuel several times already. Somewhere there are probably addicts who use that stuff as their drug of choice. I would rather avoid the maniac house of mirrors that stuff takes me through.
    Not The Same Old Me
    I was busted down, sick and weak, grumpy and pretty darn unpleasant besides sleeping just about 22 hours of the day.. Yuck. so darn horrible. And I never really got well again. Oh people would see me and say, "You look so much better. Yeah! You look really good now." But I never really was. I could do things for a few hours at a time, but I don't have any real follow-through anymore.

    Nothing I put my hand to gets very far. I used to be able to take on things and make things happen and not just talk a good talk; not too much anymore. On the outside I do look all put together; on most days, I think. But inside I am just passing time waiting for ... I don't' know what. But it sure isn't another round of chemo - radiation - therapy - beat-down-the-disease-so-you-can-get-back-to-doing-what-you-do-when-you're-not-fighting-cancer life.

    There has to be something more, but I don't know what it is supposed to be and even though I could likely tell a good story about a couple dozen things that would be quite reasonable-sounding. I really do not believe I have what it takes to make stuff click anymore.
    The Weather Was Just Starting to Warm Up
    So I really do not see why it is a good idea to go into a fight just because I can. There ought to be a reason to do it and something worth the cost and the suffering has to come from it. And I don't really see why I have to do this just because it's what people do: Fight for your life until it's dragged out of your hands because you really have tried with every last bit of your strength to hold on. Why? Don't you know that the poison and the treatments kill too. They take life away that I can live until I no longer live. Why take a course of ruinous misery if that road doesn't lead to a destination I want to reach?

    So I am in a quandry. It's no fun and the weatherman says it's going to snow again tonight. [it did not actually snow that night, if I remember right.. at least not in our neighborhood ..]
    - mark

  2. Oh Mark!! My heart is broken for you. I don't know what you should do about the chemo. I know what I hope you do, but for purely selfish reasons, of course. I love you. We are praying for you. I am so sorry that you are going through this. and, I hope you dont break your neck!!! :) xoxo

    1. Thank you Paige.
      I hope I don't break my neck too!

      And I do not mind going through it. This life is mine to live. Mostly, I find I am suffering the pain much more from failing to give myself fully to what I am able to give to my life.

      I am sorry that this is getting too blah blah. Here is a wuote by Viktor Frankl that might say it better:

      "It did not really matter what we expected from life, but rather what life expected from us. We needed to stop asking about the meaning of life, and instead to think of ourselves as those who were being questioned by life—daily and hourly. Our answer must consist, not in talk and meditation, but in right action and in right conduct."

  3. Hi there, I'm Lindsey! I have a question and would love to speak with you. Please email me when you have a chance, thanks!! lindseyDOTcaldwellATrecallcenterDOTcom