Deb's Update: March 1, 2007 6 PM PST
Hi All,
It's Day 3 on Cycle 1 of the Temodar... so far, so good. I am definitely taking the Kyrtil every chemo day just so I don't have to vomit... we all know I don't need to lose any weight!
Here are TEN interesting Cycle 1 things that make me go hhhmmmm...
10) I finally got the chemo from FedEx on Tuesday afternoon and didn't have to drive there to get it. YIPPEE!
9) Interestingly enough, Temodar would cost me the same amount if I got it at the Pharmacy down the street... I'm guessing that is what I'll do next month :-)
8) No constipation for me even though that seems to be a popular side effect on the higher Temodar dose!
7) I nap daily for a few hours just to let my body rest during the chemo days. I also exercise/walk each day since I need to get that blood moving (the dogs are happy about that!)
6) I finally talked to insurance company Aetna and they admitted that they did get the HIPAA letter I sent but that they hadn't reviewed any of my claims or paid for anything... A nice thing was that the woman that I yacked with (for 45 minutes) had a mother that unfortunately passed away with Glioblastoma at age 65... so I'm guessing that all of my stuff should all be approved! Everyone should finally be paid in a week or two.
5) I can definitely feel the Temodar in my brain/scalp area. Not a bad thing, no headache, but just a cloudy type of feeling I would say...
4) I am really, truly only driving locally during the 5 days of chemo dosing... I am even driving less than I usually do just because I think I should!
3) I cross my fingers (and even pray if you can believe that!) daily when I think about heading to Cedars-Sinai on March 6th and having an MRI (it's technically 4 months post diagnosis)... I also hope to meet the inclusion criteria for the vaccine study.
2) CuraScript called today to tell me that they had an Rx (Temodar) that they were processing today.... in a major nutshell, they finally found the fax that my doc sent 2 weeks ago! UUUGGGHHH...
1) I still have one layer of the scab left even though I did lose 'layer 2' last night while putting on my PJs! So, what are we going to call the scab lady now?
Please keep your fingers crossed that March 6th will have some good news: good MRI and okay to be on the vaccine study!
Love ya lots!
Debbie
22 comments:
I'll be keeping my fingers crossed too!!!! Let us know.
Take Care.
Galynn
Double Fingers Crossed, and an email to my aunt to get you back on her prayer chain! Gotta Love Aunt Vee!
Love Love,
Marianne
Double Fingers Crossed, and an email to my aunt to get you back on her prayer chain! Gotta Love Aunt Vee!
Love Love,
Marianne
I'll be praying too!
-AC
To all who read this blog:
I am a former co-worker of Deb's from her days working at Mass General Hospital in 1996-1997. I finally got to speak with Deb directly last night for the first time since her surgery and diagnosis. We had a wonderful conversation for close to two hours. She shared lots of inspiring stories. She is the very energetic, VERY SMART Deb I remember from 10 years ago. It is refreshing to hear first hand how motivated she is to heal and how organized and realistic she is about this complex process and especially how she is already tranforming her motivations into positive outcomes. Simply stated, she is beyond courageous.
FOR DEB: I'm sending extra special healing beacons from Boston for your March 6th milestone.
Warmly,
Bea (aka Karin)
Debbie,
Fingers crossed and prayers said for a positive MRI and screening. Larry and I enjoyed our talk the other night. It is always great to hear your voice and positive attitude.Take care. Miss you lots.
Priscilla and Larry
Good job kicking the chemo's butt. And since we're on the butt topic, it's SOooo nice to hear your bowels are fine. Nice touch. Keep in mind that if that DOES become a problem, we can probably get some of our friends at Pfizer Groton to send you some "colon blow coffee" from that coffee cart where Betty used to work.
Your MRI is going to be fine. I've already got my mind fixed about that. No worries. You will also meet criteria for the study, but you'll probably get some loser CRA like me....if so - try not to make direct eye contact.
I should send you a photo of me now. I got a "haircut" today - if you could call it that. Went to the spa/salon, all fancy, schmancy. Walked out looking like the "stylist" (read here psycho-freak) took a chainsaw to my head. First problem: whatever "conditioning spray" she kept spritzing my head with to keep it wet while she was hacking my hair caused my neck and scalp to turn beet red and itch insanely. Second problem: she confessed to having too much to drink the night before. Third problem: I left looking like a cross between Gilligan from the Island, and Spanky from "Our Gang". You know you're in trouble when the "stylist's" last remark when she puts down her scissors and razor and "product" is, "your hair really has a mind of its own, doesn't it."
So keep your scab, keep your bald spots, keep your cloudy feeling. With my Topomax head and my new hack job, I'm right there with you sistah! If I wasn't fatter than you, we could be twins.
Love ya man!
-Mol
Deb,
Keeping fingers crossed for you also for the 6th!!! You'll do great!! As for Mollie, who the heck isn't fatter than Deb...even before all this??? you crack me up. Deb..keep up all the positive thinking and we'll all do the same. Thoughts and prayers are with you always. Love ya lots.
Love,
Nikki
Crossing fingers, toes, legs, eyes, Jordan, the line - you name it! Prayers too - a stretch for me for sure, but since I have been working out, stretching is do-able :)! All are pulling, hoping, praying, making burnt offerings - whatever it takes to support and keep positive for you.
Best Always,
Barbara
Quick-- we have to name the scab before it sheds. I tried to find a famous scab in history but didn't come up with anything that was interesting enough. I am thinking we can use "Bob Scaddles"- it's an anagram for "Deb's old scab".
~jess
How about just calling it "scabulous"? Isn't that a really fabulous scab name?
ding ding ding ding - we have a winner!!!
How about we call it fabulous scabulous (FS)... isn't it all about FS? ;-)
Debbie
Fabulous Scabulous? Strange and Bizarre. Which means, of course, that I like it.
FS it is.
Barbara - you weren't supposed to tell anyone about the burnt offerings....You promised...(Anita would have just called it "cooking", anyway)
Perfect- I'm glad we solved the scab naming dilema. I wasn't that keen on Bob Scaddles anyways- I think I went to high school with him. Deb- have you had anyone take a picture of FS yet? I'm curious to see it.
Jess
Do I have to have Kimmie take a picture of the fabulous scabulous when she's here tonight? She's coming over to take me to Cedars-Sinai tomorrow morning... she's supportive, that's for sure! I'm sure she could take a picture... I may even take some photos of the bald spots come and think of it! Hhhmmm... I'll try to get her to take a good one or two also just so you guys won't be too worried!
Debbie
Hey, Scabarella! We'd LOVE to see some pics of Fabulous Scabulous and the Bald Spots. Sounds like either a great Punk band or a dance troupe from the 50's trying to make a comeback. Maybe Barbara knows them...
Here are options for photos I challenge you to obtain: your funky swinky redecorated house 5 points, you cooking in one of those shirts we have talked about 10 points, you at Cedars Sinai with Dr. Yu wearing one of those shirts 15 points, you at the muscle beach surrounded by beefcake 20 points.
We'll have to work out what these points are redeemable for, and update the Deb point challenge with each post.
P.S. I'm still waiting for an update on how your dreams are going.
Love ya man!
-Mol
Good luck today, Deb! My fingers are crossed and prayers have been said. Let us know!
Take care!
Donna:)
Hi Deb,
I am thinking of you today! Good luck with everything!!!!
xxxooo
Alicyn
Hi Deb,
I just wanted to let you know I was thinking about you today and hope everything went great!!!
Susan Curry
Thinking about you!
Barbara
UPDATE THE DAMNED BLOG ALREADY....
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