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Chemo Update and Japan Update

Posted Aug 10 2009 4:32pm
I met with my oncologist at 8am this morning, so I would have plenty of time to get the Oxcilliplatin put back into my chemo cocktail, all 6 hours of it! However, the doctor didn't have my CA125 blood marker test back yet and she asked how I've been feeling and I told her a lot better! So we decided to hold off on adding the Oxy today and waiting til the CA125 results came in. If they had gone up, I'd be coming back in for the Oxy later in the week. So I started my usual fluids and Avastin (8:30-1:15pm) and took home the 2 weeks worth of Oral chemo, the Zolata. I seem to be handling the Zolata really well and am able to drive and function while taking it without too many bad side effects. So I was relieved to hold off on the Oxy. That's the really agressive cocktail that I did in the beginning, every other Monday for 11 rounds. Had to stop before I got to 12 because I couldn't handle the side effects any more. The naropathy (numbness) in my hands and feet got so bad I could barely walk. With the Oxy came nausea. Diarreah. Constipation. Cold sensitivity (cold trigger = can't eat, drink, touch anything cold for 10 days! Like pins and needles. Throat closing up. Horrible!!!). Plus all of the pre meds (steroids) and pain meds and anti nausea and anti vomiting and anti diarreah and anti constipation really messes with ones sleep patterns etc! The Oxy would knock me out cold for 2-3 days. I'm talking not being able to lift my head from the pillow. It was like having the really bad flu every other week for a whole week. And then I'd start to feel better for a week, and then it was time to do it again! It was soooo draining and hard to keep up! Took so much out of me. I couldn't drive cause of all of the meds. Couldn't function. Couldn't manage family life at all. So you can imagine my relief when I didn't have to do it today as expected because my numbers have steadily been rising!!

My last CA125 after the first round had risen to 147, the highest it's been since diagnosis/surgery in June 06. I had gotten it down to 22 with surgery and chemo. Normal is 35 or less. I got a break and it began to rise again. So they tried the Carbo/taxol (lost all of my hair). Then I went to Reno. I came back from Reno and they started me on Oxy again, because that's the one that seems to work. Of course the chemo from hell is the one that works. Go figure. But then after only a few rounds I had an allergic reaction to it and had to stop it. So then I did the 5FU (pump) and Avastin for awhile, which got really old. She let me have a break over the holidays. Since stopping the oxy though, my numbers just kept going up and up and up.

Well, today I come home to an email from my doc and my CA125 went from 147 to 114 after my 2 cycles of Zolata!!! It's finally turned around and going back down for a change! So I don't have to do the Oxy just yet!!! I have been feeling so much better lately and told her that. I know my body well and I usually am right about things. My body knows! It's still a long ways from normal and 35, but it's at least going down!!! Which just made my day!!!! I soooo didn't want to do the oxy!! I am doing my 6 week CT Scan April 3rd and depending on those results, I may just get out of doing it altogether so far! That would be AWESOME! I HATE OXY!!!! So yeah! Go me!!! All of your thoughts/prayers help, so thank you for holding me in your heartS!!!!!!

Now for Spencer and Japan...

Here's an email I got from one of his teacher's last night, titled "Spencer's Trip So Far":

Hello from Japan! I have a little bit of time and wanted to update you on Spencer's trip so far. We hope to give them all some time when they get back from their hike to Mt. Aso today to email you, but I'll fill you in myself on what I'm seeing so far. Spencer, as always has really been a wonderful, caring addition to this group of travelers. He's being so positive and helpful in all kinds of ways. He regaled us last night at dinner with stories about the monkey park and ways to not look a monkey in the eye. Today all the kids are off to Mt. Aso, which you can see yourselves from google maps. I think he's doing wonderfully overall and really enjoying himself.

One unfortunate event is that the flu bug which was going through Catlin seems to have made its way onto the plane. A few kids have fallen prey, although-knock on wood-Spencer hasn't succumbed. The good news is that it seems to last at the most 48 hours, with only a low to moderate fever, sore throat and a few aches and pains - no runs or vomit. We're trying our best to keep those 3 children who came down with it separated and rested. And the rest, we are making sure to keep well fed with lots and lots of hand washing! We'll be sure to let you know if anything changes for Spencer, but for now rest assured that all the kids are being taken care of and no news is definitely good news. Be sure to take a look at the pictures which Andy will upload soon. They're impressive.
Take Care
Ann
And then Dave came home today to find this informative email from Spencer in his inbox:


Hi?dad, im having a really fun time in japan. say hi to everyone for me.
TELL simba i miss him. bye

Spencer Immel
LOL!! We laughed so hard at the story about the monkey park and about Spencer's email! So he misses the dog!!!! LOL That's my 13 year old boy for you!!! I can't shut my 9 year old girl up, but I can't get my 13 yr old boy to talk at all!!!!

Write Around Portland sent me this:

Hi Shauna -

We finally put up the videos on our website:

http://www.writearound.org/publications/video.html

They are currently on our homepage, too. Thank you so much for doing this!

Robyn


I made it to UTube!!! LOL
Enjoy!
xoxoxo
Shauna
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