Sunday, October 10, 2010

One week down

The first week of shock and awe is behind me, and it wasn't too bad at all. Only on Friday did my body finally say, "Hey...I'm tired!!!!" I slept early on Friday and most of Saturday.

Monday through Friday was radation and oral Temodar chemotherapy. My favorite part was riding down to the medical center with friends who gave me limo service. We had lots of fun visits and chats together. It's a lousy circumstance for getting to know awesome people better.

The radiation routine is a quick one. I walk in, scan a card, and gown up. They let me keep a gown for the duration of my treatments, so I can "pre-gown" at home to make sure the backyard is completely covered, and then just remove clothes when I get there. I sit down and have a brief chat with Janice and Jean, other survivors on the same schedule, until our turns are called. Then it's about ten minutes in the zapper and out to change and move on.

I'm not sure what the big deal was with the tattoos. They are smaller than freckles. In fact, the radiation technicians mark all over the tattoos on my abdomen with marker.

The session is so short, I usually hear the same reggae song in the background and watch the machine rotate around me a few times, and then I'm done. For my visual on Friday, I began to picture a skylight opening up in my spine to reveal a cringing tumor (gurgling with chemical poisoning) as it begins to shriek at the incoming beams. I had to keep from giggling so I could hold still. After a few days I noticed a slight sunburned feeling on my backside. I wonder if I should put one of those tanning booth stickers on me to check my progress.

The nightly Temodar thing is familiar and easy. Just no late-night snacking, which has paid off on the scale already -- despite getting lots of steroids in the mornings.

I started Avastin this week, too. It is also familiar and very tolerable. An IV infusion every other Thursday. And maybe a Benadryl at night, because once in a while I might get one hive from it. I'm just glad that Avastin is still available. It worked wonders on me before, but its FDA approval is in jeopardy of being pulled, simply because of its cost. (What is the value of five years of my life? Can I decide, or is that now up to a death panel?)

Topotecan is the fourth blow. It goes in through my Ommaya reservoir ("Oh, my -- a reservoir!"). Only Dr Fink or her nurse practitioner may do this infusion, because it is a highly specialized process. This has the longest list of undesirable side effects, including nausea and arachnitis. They pre-medicate me with more steroids and anti-nausea meds before giving it to me. I get this on Mondays and Thursdays for six sessions.

(Arachnitis, by the way, is kind of a chemical meningitis. It has nothing to do with spiders.)

With the exception of Temodar, I have the weekend off before heading on my daily trek to the medical center. I'm looking at the list of my chauffeurs for this week and eagerly anticipating our visits. I look forward to seeing Janice and Jean again. (We're all praying for each other.)

On Mondays I meet with my radiation oncologist for a review and also for blood tests to see if I still have bone marrow producing enough red and white blood cells and platelets to continue treatment.

We're one week down; not sure yet how many more to go. The worst part has been fatigue, as though I finally realized that a major battle is being waged. I'm managing pain very well, and I'm also getting some strength back in my droppy foot. (Just don't tell the kids, because they are in charge of keeping the house free from stuff Mom can trip on!)

Someone asked me if I'm hanging in there okay. I had to reply that I'm not hanging at all -- I can't hang, because I'm being so well supported!


LadyCarma said...

I love all the detail. Some people hate that, but for me, it helps me understand all that you are going through and I know what specifically to pray for. You are amazing and your doctors are wonder people. My thoughts and prayers continue in your behalf, and I put your name in the LV temple yesterday again.
(Is is somehow appropriate that the word verification is "womess")

Deena C. said...

Hey Krista,

Just a note to let you know I'm still reading your posts, and praying for you. I put your name in at the Oquirrh Mtn. Temple on Friday, too. Take care.

ZionBrian said...

Hey, Krista! Thanks for your awesome, inspiring blog. My Dad does Temodar and Avastin tomorrow. God's in charge. We love and pray for you!

Alison said...


You have no idea who I am, but I stumbled upon your blog last month when I was researching information on GBMs. My husband was diagnosed in August of 2009, and he is now on Avastin/CPT-11. I just have to tell you how much I have enjoyed your blog. You are truly a talented writer; you have a gift with writing about terrible stuff in a hilarious and meaningful way. Somedays I just sit and laugh at what you write. Thanks for helping me get through this very tough time with my wonderful husband. You've definitely made someone's life better today.

Anonymous said...

Dear Krista,
I am praying for you. Can you still sing? I so love to hear you sing.

Linda said...

God Bless You, Krista. I also have GBM. I have had 4 brain surgeries to date and just started on Temodar 2 months ago. I will put you in my prayers. You are going through so much more than I. You are Truly an inspiration to me.