Dianne's Update: July 20th, 1:00 PM E.S.T.

Hi all , this is from Debbies Mom. All is well, it is another clear MRI for Deb.

Deb will post more when she gets a chance.

THANKS FOR ALL OF YOUR LOVE FOR DEB. WE ALL THINK HER FRIENDS ARE WONDERFUL.....

Love Dianne

Deb's Update: 07/19/07 7:30 AM PST

Hi all,

Just a quick update to let you know how things are going. I have technically been at work now for 3 and a half week... time flies! I actually had the week of 4th of July off but I'll count it as a week back at work :-) I'm back in the swing of things there schedule wise, but I really do feel like I am still "new" there to some degree... Not much I can do about that one, huh?

I am very tired these days most likely because my days are longer and more mentally stimulating. Not a bad thing, but I have to find a few more hours to sleep I'm guessing :-) The past couple of weeks I have had an on and off dull headache and I'm hoping it's from the fatigue. After I have rested and slept, the headache seems to be okay, but as the day goes on, I notice it... I will keep you posted on my dull headache.

I start cycle #6 of chemo this coming Monday... it seems like I just did a cycle but hey, I'll continue to take this Temodar if it's doing well for me! My routine labs were the usual slightly low and not low enough to have any additional meds. My med onc doc took another lab for the high ANA that I had (pre-vaccine trial and also mid June)... hopefully since I'm not on that Bactrim DS med anymore, that my ANA will come down to normal... it may take time I guess. She has decided not to put me on another prophyllactic antibiotic since I seem to be doing well. She did suggest to do more labs (at 2 weeks post Day 1 which is the first chemo day) to follow my blood counts.

Next MRI is tomorrow at 6:30 in the morning... YIKES! Thereafter, I have an appointment with Dr. Yu to go over the results... wish me luck! I hope all will be well still and I will continue to shock him.

I have decided to go to see a neuro medical oncologist at UCLA just for a second opinion in regards to my routine treatment, potential clincal trial that I could be in or just to make me feel better :-) My friend Kim works with an oncologist who told her that this doctor that I will be hopefully seeing is an awesome neuro med onc doc with about 10-12 clincal trial for GBM patients, so we'll see what they've got for me. Kim's oncology doc colleague definitely says it's a good thing that I stayed on the Temodar and didn't just do the vaccine trial and NOT take it! Always good to hear that docs think that's a good thing.

Visits with Al, Susan (his sister), Ant, Paul and Oscar (their dog) was great... I had the week off so it was nice to be able to entertain and have some friends around me. Radar found a new friend, Oscar! Boy oh boy did they play together the entire time :-) Always a good thing because Radar doesn't love lots of dogs since he's intact. Al's sister had lots and lots of allergies (pets, pollen, etc...) while they were here so they had to head back to CT earlier than expected... bummer, but it's what they had to do. We didn't do anything major like site seeing or that kind of thing, but we all hung out and had some good conversations, meals and laughs!

Well, it's around 8 AM so I have to let the dogs out one last time and head to work... just wish me luck for tomorrow's MRI! It'll be about 8 months post diagnosis already so I'm hoping I am still disease free! I will post a result (or have my mom do it) as soon as I find out how the MRI is. I didn't have time to review what I've written or spell check it so my apology if it's a crazy update... but, I gotta go!

Love you guys!
Debbie

Deb's Update: July 3, 2007 9 AM PST

Hi All,
Well, I've made it through my first week back at work! It was actually great to be back into a normal routine and actually have time fly... I went to work on Monday nice and early (left home around 8 AM) after taking Day 1 of Cycle 5 Chemo. Yup, it was a chemo week too, but I figure that I will have to see how that goes anyway so why not the week I go back?

So, I'm done Cycle 5 and technically the standard for GBM patients is actually 6 cycles... but of course I will continue through the end of the year... Since I'm doing well, am still disease free and still feeling good, I'll take it for the entire year! Before heading back to work I got everything settled at home, went to my med onc doc for my monthly appt. (labs, physical exam, weight, discussion, etc...) and of course had the FS lady come back to make sure my house is very FS correct still!

Labs were still the same as they typically are for most pre-cycle lab tests although the HGB and HCT were just a bit higher which is a good thing :-) I asked Dr. Kaul (my med onc doc) for an ANA lab too just to see if the Bactrim DS that I was taking is definitely what affected the 'photosensitivity' . To get those ANA labs done again I consider it my experiment so of course I'll tell you those results when they get them in... no results are in yet. I had been off the Bactrim for just about a month so I am hopeful that it will show up on the ANA results... she did happen to do the ENTIRE panel just like I had at Cedars-Sinai. Stay tuned...

Weight is still at 132 lbs which I'm okay with... at least it's not going down and it's just hovering around that weight... Dr. Kaul is okay with it too. Maybe if I start to add more muscle it'll go up? We'll see. I have added more yoga and am actually going to a yoga studio to try it out but I am guessing that I will attend the Amgen classes here and there as well. No weight lifting, but I may add pilates to my yoga routine. So, it's just yoga, rollerblading the dogs, walking the dogs, and maybe some pilates as my exercising. Just easy stuff... no major straining. Of course I'm still doing Reiki to relax and energize me (usually before and during chemo)...

So, for you folks that are interested in Feng Shui, you can read this paragraph but if you're not, then just go to the next one!!! ;-) Patti came to my house on the Saturday before I went back to work to see how everything at my house was going to make sure that the energy was right, the cleanliness was right and I was right too!!! She was in awe when she walked from her car up the house... she was stunned at how serene the yard feels and how lovely the red flowers look (I guess you may want to see another picture of the hard work I've done with that, huh?) So, that made me happy, but I was hopeful that the inside would be okay still. As I get things... and place them where I want them, I guess it could be the completely wrong locations so I was just crossing my fingers and hopeful that everything would be okay. So, she walked around the entire house and rings a bell in all areas (don't ask.... I really don't even get this thing either) to see if the energy and Chi' are okay in those areas. Low and behold her answer was this, "I hardly ever go to any client's houses and see have this much positive energy" (which is noticed from the loud bell ringing I guess). Then she continued to tell me that she uses me as an example to lots and lots of her clients to tell her how perfect things are for me, my house, etc... Of course she told me she doesn't use my name, but how cool is that that I am getting famous with the FS lady (okay, so I'm exaggerating with being famous, but I think it's funny!)? Of course she did some sort of prayer and "Ohmmmm" thing to me but hey, I'll take anything to feel good, be healthy and be the GBM outlier that will live to 90 years old!!!

Now I guess it's back to discussing work.... Monday was a bit tough and of course I had to tell some of my tough/exhausting stories about what I had to go through during Nov/Dec of last year.... there were some tears of course which you all know isn't easy for me!!! I made it through... but I sure was tired after work on Monday and went to be around 9 PM. Of course during the chemo week and working I have to get up at 5 AM to take the Kytril before chemo which is at 6 AM.... Then, of course I want to eat breakfast before heading into work just to make sure that's on time sooooo.... at 7:30 AM I eat my breakfast and then head to work. But, the day is exhausting since there are no naps during that week. I think I'll make it through that just as long as I get enough sleep at night.

Another interesting thing that I found at work was that I share a desk with someone (of course we are not both at the same desk at the same time!)... that'll just take some adjustment I'm sure. But, I will hopefully be doing some work from home since Amgen has a new policy for that .... once I do a proposal, I'm sure that'll be approved. For right now it is definitely important to be at Amgen since I haven't been there for months and months so I just want to get back into the groove! I'm sure you guys can relate to that. But, I am guessing that when I'm at home, I may focus more since I will not be in a cubicle and pay attention to everything else that is going on...

Overall, the way I see it is that the first work week was a great! It starts to feel like normalcy again which is a thing that I majorly needed obviously!!! So, stay tuned to see how it goes in the upcoming weeks until I start Cycle 6 of chemo...

I should have another MRI done sometime in mid-July so add me to your prayers again and make sure that this one comes out okay too!!! My thoughts and feeling about this one is okay too, but hey, it's not too hard to ask for fingers crossed and prayers for me, is it? :-)

That's it for now... time for me to get some stuff done around the house since I have company coming this week (Al from CT, his sister from CT, Antonietta and Paul (and their dog Oscar))....

Happy 4th of July :-)

Love you guys!!!

Debbie