Sunday, January 16, 2011

Sherri Sighed

My college roommate and very good friend, Todd, used to scream at me in the middle of the night. I mean really rant and rave. He was sleeping. Well, we both were. It was all jibberish but still, it was scary and crazy and ugly because Todd was so mad. At first I thought it was a joke. Then I thought his denials about it in the morning were a joke. Finally, almost by the end of the year I realized, no, this dude really does get all mideval in the night. The last I checked with his very normal and patient wife, he still does it. Now that he is a lawyer and we are all older and uglier, I'll bet everything is even scarier. The thing is, when you meet Todd, you walk away thinking he is the most charming, nicest guys you'll ever meet. Just don't sleep with him.

Conner used to sleep walk. That was a little creepy because he looked perfectly awake and then he'd talk about going on a horse back ride or something like that. I think I used to sleep walk when I was a kid. My Grandmother one night found me relieving my bladder into a closet.

My wife doesn't really do much in her sleep which makes her very boring in that respect. She doesn't even remember her dreams. I mean who doesn't remember their dreams? Heck, that knocks out the plots of hundreds of movies right there. 

I say she doesn't do much because every once in a while, she'll slumber. She doesn't talk in her sleep. She sort of moans, groans, coughs, farts and does a weird gargling thing. Sometime all within ten minutes of each other, accentuated, of course, by the grand fart. 

A couple of nights ago, she did something that she occasionally used to do. She just shortened her routine to a sigh. I heard it. I remembered how she used to do that much more often. And I heard it again in my head and I noticed how her sighs are always filled with all the goodness in life. There were smiles, relief, relaxation, pleasure, innocence and more smiles. Such a great sound.

And at that time I knew what I had to do.

For a couple of months my doctor has been pushing me to consider an allo transplant in the future. This is the type of stem cell transplant you get by using someone else's donor stem cells. You'd think it would be a lot more successful than doing a transplant with your own cells because these come from a healthy body. But actually it's quite the opposite for Hodgers. I think the deal is you have to trick the foreign stem cells into thinking that they're still right at home with their usual liver, kidney, heart and lungs when in fact they are hanging out with someone else's and they can't get out. All kinds of kinds of anything can go wrong. 

The chance for a full cure has been around 8-12%. My docs are telling me that this rate has risen much higher since those stats. The chance of dying from the procedure is around 30%. That's about the same.

So if my math is correct (and if anyone has seen the way these kids are doing math these days, you know that it can be way off), 42% of the people either die or are cured right away. That leaves 58%. What happens to them? I believe the answer is they simply die later on, probably within a year or two. 

Sometimes they die a very painful death. There is something called GVHD. It is a disease you get when your new stem cells don't like your liver or lungs or pancreas. they get pissed off, cause a lot of pain and eventually you die. 

Sometimes people die a very frustrating death. Assuming they don't have GVHD, they're still not in the greatest of health. And their cancer is tough, really really tough. A doctor last week told me the tumors in my lungs were already as hard as concrete. Because of this, drug companies exclude people who have had an allo in their trials. They argue, quite correctly, that a person who has failed so many treatments is not a typical hodge patient and will therefore, skew the trial results in a negative way. They get bad numbers. 

So the post-allo hodge patient is left with trying to beat back the disease using traditional chemo, which, at this point, isn't a whole lot. To put it bluntly, it's certain death. It just depends on how long you can hold out. 

My original plan to hop on and off trials as long as possible has hit a snag in the form of me. Well, my body, at least. My mind is all for trying whatever drug to get me healthy. But my body is giving up. Right now, I am typing this at 3:39 in the morning because I can't sleep on the account of my nueropathy. Nueropathy is pains that start in the feet and hands and present themselves at first as tingling, as if your extremities are falling asleep. then it progesses to pain. then it progesses to pain that randomly shoots all over your body, all the time. The cure? Stop getting treatment or nueropathy will kill you. Without drugs, I just have pain in my extremities. Without pills, I have shooting pain all over my body all the time. the drugs evenutally lose their effectiveness. And I spend more nights trying to sleep but just getting shooting pain.

And then there is New York. Nobody ever fund out what caused me to be very sick and in a hospital this month. But I'm still not better and may never really get better. My lungs are badly scarred. My liver functions is low. My kidney is actually doing okay. My other organs aren't. 

I think my body is telling me it's had it. My doctor, in his easy way, has basically told me that he can keep giving me drugs but that doesn't mean I'll still be able to take them. It feels like to him, I need to get an allo. He would agree with what my body is saying.

I was pretty dead set against it until I heard that sigh the other night. That was a sigh of another time. After the events of this last month, I know I'll never get that time back just by jumping from trial treatment to trial treatment. I know now that I'm only going to get worse. 

And so instead of asking how long I can take or how long my body can take, I should also ask how long can she take? I know many of you out there will say stuff like don't worry about her or she'll take whatever she can because she loves you and stuff like that. But I see what it is doing to her. And I'm fucking tired of only hearing that sigh on a random night. I want to hear it every day and every night. Instead of conversations about the pains in my feet or the coughing, I want to talk about nothing and love talking about nothing.  She is great at talking about nothing. The best. But nobody can do that when someone has cancer. There is no nothing any more. That stuff is trivial. There are, however, sighs in the middle of the night. They sound so beautiful. I should love them but right now I hate them, instead. I think I may be ready to die to love them again. 


  1. Well it's a good thing that I am no longer the whore monger I once was now that you have told the world to be afraid of sleeping with me. I suppose I should thank you. Your blog will undoubtedly stop all these woman from throwing themselves at me. Truth be told, I don't know that I will notice a decrease since a percentage decrease from zero leaves zero. I am hoping that my use of the term whore monger takes you back for a few moments to beautiful Madison, Wisconsin when we were younger and life was so much easier and the biggest concern was that Sister Pat and Brother Jed were yelling at us that we were whore mongers and that any poor female within earshot was a whore. If only that had been true, I believe I could have happily flunked out after one year of whore mongering. Sadly, despite Sister Pat and Brother Jed's accusations, many of the Wisconsin coeds were not whores and despite my low standards, there were a few that yuk, no thanks.

    Here we are 25 years later with wives and kids and our whore mongering days in the rear view mirror. Perhaps Sister Pat and Brother Jed prayed for us instead of just berating us. Perhaps they still pray for us on the Born Again Hotline to Heaven. Perhaps you decide to pursue this allo treatment because you know that Sister Pat and Bother Jed have your back and G-d's ear. Perhaps you don't really care if Sister Pat and Brother Jed are praying for you and that you will take matters into your own hands (although you may recall that "taking matters into your hands" was another topic of Sister Pat and Brother Jed's sermons in the mall). Whatever path you choose, everyone is behind you all the way.

  2. Hey Mike- wish we were closer and could be of real help to my sis and the kids, but whatever we can do to help, just holler! can always have the kids come up and work on the goat farm with my kids. Realize what a tough decision you're making to go for the allo transplant, but once it takes and you kick the crap out of this thing, you need to get this whole blog published! Simply an amazing and inspirational story for those facing the same challenges and struggles.

    FYI -good luck to your Bears this weekend, but think Martz should hold off on having Forte throw any more passes!! that was just butt ugly!

  3. Dear Michael,

    I don't think you know me, but we both have CK in our history. Don't hold it against me, please. I am friends with Greg. I found out about your blog some time ago and periodically lurk here, I should have said hello sooner. I guess because I don't technically "know you", I didn't say hello. But technically, I pray for you every day, and root for you always. I have a very soft spot in my heart for people like you, what can I say. Of all your posts, this one hits me the hardest. I can remember telling women to treasure the sound of their husband's snoring. I miss it, very much. Yes, I can see why you must do what you can to hear more of that sweet sigh.
    God bless you Michael.

    Cathy Beres

  4. Hi Michael, Happy New Year!!!! I just wanted to drop a note letting you know that when we put Conall to bed at night and say prayers that you are always included. Not just included you are a main focus point for our prayers. I can't speak for Cari by when I put Conall to bed and we finish reading books and singing silly songs I always end our prayers with a special prayer for you. A prayer to give you strength, a prayer to stop your itching, a prayer to return you to your life.

    I've done my fair share of whore-mongering back in the day but I feel as if my truely adult life has worked to reconcile any negative part of my past. We are husbands and fathers that live life in a manner that is 180 degrees opposed to that of our younger days. Love is an emotion that we give and receive every day. So, Michael, when Conall and I say prayers I believe that they are indeed heard and do bless you. I figure that must be the case since they are coming from a reformed whore-monger and an innocent little boy.

  5. Hi Michael,
    I only recently learned of your blog, so I'm a newbie here. (Those Penegor boys are not always so good about communicating, you know?) My question is, how do they go about finding a matching donor for you? We're registered with DKMS, which is focused on leukemia, but would that registry also be available to you?
    Hugs & kisses to you, Sher, and our adorable neices & nephew, although 2 out of 3 may object to the term "adorable" at this point, I suppose... Hopefully Madison is still too little to mind :)