Deb's Update: 03/28/2007 7:35 AM

Hi all, I'm in Cycle 2 already. Yesterday I started the dosing for this cycle and I will finish on Saturday. The biggest thing is that I feel really tired. I think it's one of those things that definitely require a nap... yesterday's nap was 3 hours! That's a major nap, huh? But, I still slept about 8 hours last night so I'm guessing that my blood counts are still low enough for my fatigue.

I went to my Med Oncologist on Monday, March 19th and my WBC was 2.1, PLT was 156 and neutrophils were 80%. She thought it was definitely a bit early to do the labs before the cycle that started on March 27th (and that my counts may go up between the 19th and 27th). So next cycle, I'll be going on the Thursday or Friday (about 5 days prior to dosing) instead of a Monday which was 8 days prior to this cycle dosing! Live and learn, huh?

You bet I did describe to her that the reason that I was there EARLY was that I needed to make sure CuraScripts shipped the chemo in plenty of time for me to take it when I should. Of course I called Curascripts Monday through Wednesday and I actually got the chemo on Thursday so at least it was on time this cycle. Curascripts will not ship the chemo until my doc faxes in the Rx... which obviously will be after my appointment. So, you guessed it, I'll do a Thursday AM appointment next cycle (my dosing usually begins on Tuesdays)!

I am actually hoping that my hair will start growing back soon. The skin area (the bald spots on my scalp) is feeling a little different. It is actually sticky instead of smooth like baby skin. So, the guess is that the hair follicles are starting to do something and soon the hair stubs may start growing.... believe me, I would prefer the hair than the sticky skin! I am finally getting my hair cut next week just because I really want it to be balanced instead of one side being a little longer than the other side! Stay tuned...

I am still not doing too much exercise which is weird for me. I walk the dogs and doing a little yoga stuff here and there. It's hard to do things when I'm home alone and there aren't any other gym buddies doing the exercise with me. But, I do the relaxation breathing when I'm sitting still, so at least I'm doing SOMETHING! Not exercise, but relaxation!!! I will probably begin doing some type of lunges or squats (without any weights since it's at home) because my glutes are nearly GONE! Mary X. you'd be shocked because I'm guessing that your glutes may actually be bigger than mine now... Bummer, huh? I'm quite sure that is why my pants are requiring belts now :-)

The dogs are still very happy to have me home. Radar is getting back on track weight-wise. The vet wants him to come back once per month to get weighed... So, I'm thinking he has about 8 lbs to go. Oh, I just thought of something: maybe he's losing weight because I am losing weight! He's my major, attached dog... so maybe? Kidding, but hey, you just never know!!! I'd like to put 8 lbs back on too? Fingers crossed that bigger glutes would make my weight go up :-) Nala is still always interested in playing frisbee... but interestingly enough, Radar is back into it too! He watched Nala catch it and then heads her way and brings it back for her... Of course he doesn't want to catch it, but he sure does like to bring it back to me. He hasn't done that for over a year or two, so he is definitely back to his silly self.

Ant is coming today and will be hear through Friday... She thought she should come down to visit just to cook and or help me during my chemo cycles. That's super nice, so I can't wait to see her. Of course I am going to ask her head out for pizza with me... I've been dying for pizza these days!

As you can tell, there really isn't much I'm doing each day besides cooking, errands, sewing, dog walks and NAPS!

Thank you guys for continuing to read my blog website and to comment on how things are going! It sure is tough for me to be here and not knowing a ton of people like I did when I was in CT... so, the comments keep me going and make me feel like there is still socializing (sort of!!!) which is soooooo common for me!

Time to go eat my breakfast... I have to wait an hour post chemo dose but I usually give it an hour and a half JUST so those capsules can absorb big time!

Love Ya!
Debbie

Deb's Update: March 15, 2007 12:30 PM PST

Hi all,

I thought I should write an update on how things are going here now that it's Cycle 1, Day 17. Cycle #2 begins on Day 28 which will then be called Day 1. Get it?

I think that although it doesn't feel bad getting the Temodar it can make me a little tired. I think it's definitely my body trying to make sure that I should do NOTHING! You that really know me, know that that's not easy for me since I am usually a high energy person :-) So, I honestly have slowed down if you can believe that...

I know this will amaze you guys.... Finally the one round piece of scab came off two days ago... it was almost exactly 4 months post surgery! Interestingly enough the underside of it was FULL of little hair stubs.... I'm guessing that my hair was keeping that darn thing on my scalp! I still have "layer 3" of the longer scab left so stay tuned on how that one will look. I am still losing hair on the radiation part where the radiation "exited" my scalp. I can't wait until some of the bald spots grow back so that I can finally go to my hairdresser to make my hair more even.

I am still doing yoga and some slow exercise DVDs a few times per week just to keep doing SOMETHING. I do have to do it at home since I am not able to go to the Amgen gym because I'm out on disability. I also usually walk the dogs about 4 to 5 days per week for a half hour or so.... they love that! I am also getting into the deep breathing and relaxation just to keep myself balanced with everything going on. Of course sewing is actually slow and relaxing enough which is great for me since I love to do that... of course there are a few things that I'm working on :-) Last Thursday, Cliff's wife Christina and I headed to the fabric store to pick some fabrics for a quilt out last week... we went to lunch too, so that was a good day. Of course it was followed by a nap!

So, I can only do things little by little. It's garden time but I literally do a little here and there. Thankfully my friend Kimmie and my Mom have helped me do lots of gardening.... basically I just watered things and just slowly dug some of the soil for a few of the small flowers. Kim ended up coming back the weekend after my MRI to help me do some things around the house which was a big help. Then on this past Saturday night, Mom and Helen came here from their Hawaii vacation. It was a quick trip but it sure was good to see them!

This Tuesday Kim's sister Wendy and her 4 year old son Spencer came here for a visit... Spencer loved the "farm" neighborhood... Horses, llamas, turkeys, ducks, chickens and of course my 3 pets! Of course we did head out to do lunch which was great too. Wendy bought me and the dogs some Sprinkle Cupcakes which is from the pastry store called "Sprinkles" which I never heard of... they sure are yummy... even the dogs liked the doggie cupcakes! I napped after this visit... Four year olds are high energy :-)

Next week I will be heading to the Med Onc's office for labs and a discussion about Cycle 1, how I felt, etc.. and Cycle 2. I am just wondering if the dose will go higher since some people's Cycle 1 is lower than all of the remaining Cycles... But, I vaguely remember my Med Onc Doc telling me that she would just start me at my maximum amount. We'll see how the lab results are based on my dose... I also have to remember to call Dr. Yu's office next week about the vaccine study... he said that he should be able to start it AFTER Cycle 2 dosing. Stay tuned on that one...

Donna and Mollie, I know you guys are both interested in my dreams, right? I loved your last dream with me in it Donna.... too bad you never got to the end of it! So, here is what I am basically dreaming about: the dogs, my house, my gardens, and even shoes/sandals sometimes... not sure why, but I think it's so hard for me to find shoes that fit, that I even dream about it!

I have been so happy to get some comments from the Briard folks recently. I have only met a few Briard people at some of the shows that Radar and I did in CT, but it's nice to see that Briard people are thoughtful even if I have never met them! I am hoping to go to the Briard Club of California dog show in Pomona, CA (about 1 to 1.5 hours from here) which is in May. Radar won't be in the show, but I sure will be excited to head out to see LOTS and LOTS of Briards!

That's it for now... I am actually going to take a quick nap since I got up too early this morning :-)

Love ya!

Debbie

Deb's Photos: March 7th, 2007; 18:00 EST

Debbie has asked us to post these photos taken during and after her MRI yesterday. They are a sharp reminder of everything Debbie has been through and that through it all, she retains her beauty, grace and poise. We love her always and YOU GO GIRL!!!

Deb's Update: March 6, 2007 2:00 PM PST

Hi All,

MRI IS CLEAN!!!

Thank you guys so much for all of your thoughts and fingers crossed since it has probably helped me... here are the details of what the surgeon said and how the day went:

Kimmie thankfully came last night and stayed over so that we could leave early, early to head to Cedars-Sinai for the 8:30 AM MRI appointment. We got there quicker than we hoped so I was actually 45 minutes early... obviously I wanted to just get that MRI DONE. Kim supported me the whole time: she went in the MRI room while I was in it and she went into the doctor's office when I was in there to hear the results.

I actually felt okay during the MRI... I was deep breathing and doing some meditating type of stuff. Yup, don't ask, I'm getting into slooooooow stuff like meditative breathing, yoga, etc... It's supposed to be good for brain cancer things. I decided to let them give me a CD with all of the MRI pictures in it so that I could just have it and show any doctor who needs to see it. I was hopeful that it went well and the guy that gave it to me said "here is your good movie Deborah" (wink, wink). So, I was guessing he couldn't tell me the results, but in my mind, he basically did!

So, after breakfast, Kim and I went to Dr. Yu's appointment. I saw a nurse first, then the PA, then Dr. Yu! The whole time I'm thinking... let someone come in and tell me what they see or don't see on the MRI!!!!! Dr. Yu finally came in and said: "Your MRI looks great!". He continued to talk about how he was quite sure that he would see swelling in my brain but was shocked that there was NONE! (he said that there was so much when he did the surgery and that I wasn't that long post radiation and chemotherapy, blah, blah, blah). He also said that it means that my immune system is working overtime and is doing a really good job for me which will be great in the vaccine study!

So, that's it guys! MRI #1 is done and is good.... next MRI is two months from now. I guess I will get one every two months for this entire year. Dr. Yu said that my brain looks soooo clean that the treatment I have been getting is obviously perfect for me (surgery, radiation and chemo)!

Kim took some pictures so I will post those after she emails them to me... you guys will like them all (scabs, bald spots, me & doggies, me at the MRI in my 'gown')

Again, THANKS from the body of my heart for all of your support!!!

Debbie

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