Monday, December 6, 2010

If you see me, hug me.

The itching is non-stop. My arms and legs are all cut up due to scratching. My body is lit up with goose bumps and rashes from the time I get up to the time I sleep. I'm anxious and sweaty and constantly moving and scratching. Figdety. Pain. Uncomfortable. Obsessed with getting that one damn itch. And then obsessed about that other one damn itch. So while your hug is a good sign of support, it actually has a practical application in that any contact will take me away from this mess of a life for a second or two because your arms will be covering an itch somewhere. You can rub my back too.

The only time I don't itch is when I'm sleeping, although itching has woken me up from a slumber or two. But with a good cocktail of sleeping pills, NyQuil and Benedryl, I usually find REM sleep captivating. 

I go in to See Dr. O this Friday. Because of the itching, my whole team is convinced that the cancer is growing all over. I am the last hold out. I think it's a reaction to the meds and the fact that my body is breaking down. Ya see, most of these aren't regular itches. Most of the time, they're electric shocks first and then itches. I am a fifties science experiment. 

This different type of itch can also be one other thing: full body nueropathy. I think the nueropathy in my hands and feet has spread throughout my body. And if that's the case, then I may have to get off the trial because it's not healthy and can be dangerous in its own right. 

If it is neuropathy, my body is breaking down to treatments. I've been doing this almost non-stop for three years. I've had a total of six different treatments. Most patients average around 3.5. When I started on this route, I thought jumping on and off trials would only be a matter of keeping the cancer at bay enough to get on another trial and then see how that works and then, if nothing is working and the tumors are getting too big, I pull out one of my two bullets. 

Barney Fife had one bullet. I have two. I know of two drugs that are as sure as sure things can get in this world. Which is about 70% effective. One is called SGN, which is something I talked about and wouldn't be ready. The other is called bendamustine. It's traditional chemo that knocks you right on your ass for five days but then gets better with every infusion. I might be able to stay on it for four or five months. I wasn't planning on using this for another year but because of the nueropathy, my body is running things now.  

And in fact, it is all about my body now. I relate to people, places and things through the wishes of my body. If my body is tired, I relate to that person as tired. I don't try to overcome it with mind power. That's already being used to deal with blocking out an itch here and there. 

Only a short while back, I was feeling bad that I wasn't able to do that many things around the house and I felt guilty as Sherri looked at me with a scorn while carrying a hammer to her next fence mending issue. Now, my body tells me not to care and I don't care. My body has control of me. I do what body wants. Body is all powerful. George Orwell would appreciate this post. Okay, he would have hated it for the poor use of grammar and lack of creative metaphors. But George Orwell's nephew, now there's a fan.

I get scans done this Thursday. They will cover more area this time. After my team conceded that I do infact have a node in each bicept and are haunted by this itching issue (yes, they are haunted. For three weeks, they've been shooting me emails with every possibly remedy and no luck. One of my PAs even said it was keeping her up at night. Isn't that nice?). They think the more scans I get will show more tumors in hard to see places. My body says, "Let them look." And I will let them look. 

Sorry this isn't a more interesting post. It's late. I'm on my nightly cocktail of drugs and my body is not a good writer. He's better at math.


  1. Keep goin', man. That's all. I didn't know you much at CK, but your blog is wicked awesome. Just keep going. I just have one kid and I know what I'd do to see his college graduation....

  2. The body has succumbed...the soul has not!

  3. Mike, I hope this small world story makes you laugh. I went to see my 5 year old in her school holiday show and noticed that one of the 1st grade teachers looked very was Dana! Remember her? Fun/loud and from Brooklyn? She looks exactly the same, minus the hair clip, same big smile. I commented that she lost her accent and she said "well, I was only in Wisconsin for a few years so it really didn't stick with me." I had to laugh - of course I meant her Brooklyn accent. Totally gone! Anyway, I'm hoping she'll be Jackie's teacher next year.
    I also thought of you in spinning class today. The cute instructor played that song that begins; "Josie's on his vacation far away.." The song takes on an entirely different meaning as a 43 year old woman! (the cute instructor singin "you know I like my girls a little bit older."
    I've come to think in life there are no blue ribbons, we all do our to get by. You however, deserve a blue ribbon. Happy New Year, I wish you health, health and health. xoxo Sara

  4. Hi, I don't know how to start this, this is my first time using Blogger. I was searching about Bendamustine chemo meds interactions and saw this blooger. I search abt it, because My husband currently had it on Dec 21 and 22nd 2010 and that was his 1st cycle, and then he still continues had fever (up to 104.9)/sweat/chill (that his symptoms when his cancer growing faster/ come back again). He had SGN back in 2009, and not fully finished the cycles, he stopped on cycle 3 or 4, he stopped due to the side effect (the burning pain on both his palm and feet, within weeks it getting worse up to all over his body and made him couldn't walk for 2 month n gradually getting better. After that, he did few regular chemo and then get into another clinical trial (M-tor and H-back inhibitor), which the side effect is minimal. After the clinical, he has to off for almost 2 months, within 1.5 months his cancer progressing again, then they end up giving him Bendamustine. On day 11, his fever suddenly gone, and then on Day 13, his has burning pain on his hand and feet only, this time right the next day, he had it all over his body w/ feeling of itch everywhere. He is now still in staying in bed at hospital where he can't walk or sit properly and plus not able to grab spoon or fork within this past 2 days (we came in on New Year untill now). The oncology doc still think Bendamustine has no side effect of what my husband experience. But, neurologist came take a look of him, and she mentioned there's few cases and she read, Bendamustine has the side effect of what my husband experienced. Now, his burning pain up to his face, and he having hard time to talk. Things are not getting smooth here. =(