Wednesday, March 27, 2013

"What's brown and covers a roof?"


Why, yes! AND, they're also my latest ailment. That's right, on top of everything else, I've learned I have shingles, too. As annoying as it might seem, me developing yet another condition, I was actually glad to hear the news. I'd been frustrated by the fact that, for weeks, I was in miserable pain. My back and neck were just on fire, and nothing seemed to help. I'd wake up and rub them for hours in the night.  It made no sense, these extreme muscle aches, but I just figured it was part of the hellride, get used to it.

Then, I noticed some of the front of my hair started falling out. I wasn't on chemo at the time, so that didn't make sense.

THEN, I developed a rash on my head. It looked like someone whacked me with a krobar. After 10 days, I visited the dermatologist, and voila. Shingles. So that explains everything. (Except the hair...?)

I think that last chemo I was taking, Irinotecan, was the devil. Not only did it not work, it gave me the worst crop of side effects I've ever had. (Ulcer. Shingles. etc.) With Folfox, even though it's downright torturous for me to receive, it doesn't wreak too much havoc on my life when I'm off it. I like the 2-week interludes. Life feels almost normal then! Truly.

Today my son turned 5. Milestones like this inevitably make a slice of me wonder "how many more will I live to see"-type things. Ptth. Not fun. I don't feel particularly stalwart right now. Where's my resolve? How have I let it slip?

Sunday is Easter. Monday I head back to Ohio for spring break. I need to focus on my health again. Mind/body/spirit. Find my game face. Where'd it go? I feel I've been off in the weeds this past month. I feel all over the board. I've never felt this scattered in my approach to fighting this disease. I don't know why.

Friday, March 15, 2013

Results in

The genetic test shows I am not "wild", so I will not be getting that new chemo, Erbitux, the one that would cover me in a rash. I'm going to go back on Folfox. I can't believe it. (see my previous post about being the worst patient ever). We never really determined that Folfox definitively stopped working for me, since I was on reduced doses due to surgery. So now we'll try again, and scan me in a few months.

Off to chemo. See ya Sunday.

Wednesday, March 13, 2013


Hi all,

I've been otherwise occupied the last few weeks (visitors! my 39th birthday! parties! etc!) but I do have a lot to report.

I haven't started the hell-zit chemo, aka Erbitux, yet. In fact, last week when I went to my chemo appointment, they sent me home. (First time ever for that. What a strange feeling it is, to leave without getting your weekly poison. It was a reluctant 'Get out of jail free' card. I didn't want chemo, but I NEED the junk, right?)

So, why? Well, in order for the Erbitux to work, a person has to be classified as "KRAS wild type".  If you aren't "wild", the drug just won't work on you. You learn whether or not you're "wild" by doing genetic testing. I've had some of that done. However, I didn't recall hearing anything about "wild type" from that report.

Thanks to a letter I received from THIS BLOG (Hi, Barb!), I learned about the Erbitux/KRAS wild type connection. We asked my doc to confirm I was "wild". He said I was. But, upon further review, he could not actually find documentation that I had been tested for this. SO, he re-ordered the test. They had to pull my old tumor block out from its icy storage place and do the test. I'm still waiting to hear the results.

Bottom line: If the results don't show me as "wild type", I won't get the effective-yet-awful-zitty chemo.  It's a hard thing to say, but I DO want to get that chemo. Because it's supposed to WORK.

Hopefully I will find out soon. I've been waiting a week for the answer. It's hard to wait, knowing your tumors are only growing as you do wait. If I end up negative, I will move down the line to the next chemo, most likely one that is statistically LESS effective. You can imagine how that makes me feel.

What a hellride, this.