Deb's Update: Wednesday, April 25th 9:30 PM PST

Hi All,
I just wanted to write an update since this cycle #3 is "so far, so good"!!!
Because cycle #2 was tough, I got lots and lots done this past weekend just so I could relax and hopefully feel better during this cycle...

Thankfully, I don't have the nausea/vomiting that I had last cycle. Of course I still have 3 more days of dosing, so keep your fingers crossed that I will feel great through Saturday. I have been sure that I will need naps during this cycle, but it seems as though I am only napping about a half hour or an hour instead of the 3 hour naps that I had to take during the last cycle...

I was supposed to go to my Neurologist for a follow-up appointment tomorrow morning at 8 AM but I re-scheduled it to the following week since I am guessing that I shouldn't be doing a neuro exam while my brain is getting swamped with Temodar!!!

Last Friday I had a Reiki session done so maybe that guy/Reiki Master is the reason why this cycle seems easy so far... Interestingly enough, I had some major sinus stuffiness when I was there the last time and he did some hand stuff which he said would make the sinus drain and it would get better.... low and behold, it is 100% better and it was only about 2 days after his session! To me, Reiki is relaxation, healing and calming, so of course I need that, you guys know me! He thinks that I should be there during my chemo week as well, so I am hoping to see him this Friday.

I also went to the Laugh Factory to see some comedians last Friday. It was great to just be at a place where I think about nothing other than major laughing!!! Always a good thing, huh? Of course there aren't always ALL good comedians each night, but Mollie, I think it's your next job! There were no female comedians there but I'm sure that you could do it.... :-)

Anyway, this was just a quick update to let you know that everything is going well for this cycle so far... of course I will give you another update if things change, or even if they get better!!! I still haven't taken any pictures of myself with my 'timer' camera, so maybe I'll work on that soon too. It's probably a good thing to show the hair growing back in these next photos, huh? I'll see what I can do...

Debbie

Deb’s Update: April 17, 2007 10:30 AM PST

Hi All,

Sorry about the delay in writing an update. This cycle was a little tougher than the last and made me do nothing for about 2 weeks. So, as you can imagine, I had to get some things done in less time than usual... of course that leads to more napping, more reading, etc...

I got my labs done last week (04/10) and the only results that I have seen are just the quick CBC results... My counts weren't actually as bad as I thought they would have been: WBC was 2.2, PLT was 420, RBC was 3.67, HGB was 11.3, and HCT was 32.4.... as you can imagine all of those were a little low except for the platelets. But, it really wasn't that bad considering that I had stopped chemo only 10 days prior. So, I am obviously hoping that things are still going up and will get more labs done this Thursday. Cycle 3 is already coming up next Tuesday, April 24th... Time sure is flying!!!

I actually either got a cold, or the Spring windy days have caused me to have major allergies... either one is not fun! I'm sure you can imagine that it's not easy for me to have a stuffy head... I loved it when I was feeling my head lightened, happy, and non-headachy! Of course I still don't ever get any headaches, have any partial-seizures.... So, I continue to be thankful that I'm doing well and feeling much better than I did last October/November!

I was able to get my weight last Tuesday on the dietitian/nutritionist visit and lab day.... I shuttered when I looked and saw what I am only weighing now: 129 lbs... YIKES!!!!!!!! Low and behold, I have lost about 20 lbs since last November!!! Bummer, huh? Now I'm even jealous of Radar and how he is putting his weight back on... maybe I should eat some Wellness dog food, salmon oil and holistic vitamins :-)

I really had major discussions with the nutritionist telling her that I want to put AT LEAST 10 lbs back on and how am I going to do that!? Obviously when people are on chemo treatments, appetites are not as good. Of course I am trying to eat HEALTHY food so that I can get some major nutrients but I have definitely added some chocolate, Joannie lemon bars, and pizza. I will keep you posted on that.... She was an extremely good nutritionist and gave me a lot of good suggestions. I am also writing down what I am eating on some 'good days' (when I am eating lots and lots) and some 'not so good days' (when I'm not hungry). Stay tuned.... a home scale is on the way from Dan and Mary!

I headed to Kim's house this past weekend and since she LOVES to cook she made me lots of food that is good for my weight increase! My fingers are crossed that when I get weighed this Thursday (at my med onc doctor appointment) I will have gained a few lbs! Also, I sent Joann an email asking for her Lemon Bar recipe (I'm addicted to this treat!).... of course she sent that recipe right away. In addition she made some at home and mailed them to me right away! They're gone already and it's only been a few days :-) YUM!!!

Barbara's visit was great... You can probably already tell that we focused on what we wanted to eat... Me, Margaret and Barbara went to dinner last Tuesday and it was relaxing and nice since we all were able to talk about anything! Since Barbara wasn't leaving until a red-eye flight the following day, I told her she could come over and wait here for the Super Shuttle that will be taking her to the airport... so, we were able to watch the Red Sox and get a pizza! Nice and relaxing which is always a good thing for me these days... Of course she had to ride in the Element and see the dogs and cat! Darn Radar doesn't realize he's not a lap dog sometimes, so of course you can't wear a white shirt in my house! (right Barbara!?).

My friend Hillary came over and brought me lunch last week as well (on Wednesday)... so, I'm guessing that you guys have realized that everyone I know is interested in helping me increase my weight!? Low and behold, Radar decided that she loved him and that he would just do things to make her laugh and laugh! She was hooked.... I am obviously happy to see Radar back into his old self again :-) Hillary is also the person that gave me a hairdresser recommendation when I got to Amgen...

Interestingly enough, I was able to get my hair done last week too! So, it's finally been dyed and cut... Stephanie did a great job and you can't even tell that it's got bald areas (until the wind blows!). Oh, and I have to tell you that this week/weekend I started to see hair in the bald areas coming back.... of course it's just little stubs, but YIPPEE, it's on it's way back!!! I'm sure it'll be little by little, but boy will that make me feel even more 'normal'...

So, here is the vaccine trial update: Still not approved for budgeting. I will be headed back to Cedars-Sinai the week of May 7th for my next MRI anyway so they said that will most likely be the 'screening' week and that they will be able to enroll me on the study before my Cycle 4 dosing (May 22nd through 26th). Fingers are crossed that the MRI will be stunningly wonderful again and that I will be moving forward on the vaccine trial! I continue to have a positive attitude in regards to moving forward in my life, remaining healthy, and enjoying EVERYTHING... but sometimes those damned MRIs get me! I think I will always be nervous heading in for an MRI, but it's something that HAS to be done every two months.

That's it for now... the week prior to chemo is always busy since I have to get lots of stuff done (like cleaning, grocery shopping, errands, etc) before I am not able to do a darn thing! I thought this would be a quick, boring update but as I start writing, you can tell that I have lots of things I want to tell you guys!!! I really have to end it here... I have lunch today with my real estate agent Michele (another amazing person that I know out here!)

I guess I still have to try and figure out how to take pictures... I'll work on that one especially now that my hair is cut, dyed and starting to grow back!

Hugs for everyone...

Debbie

Deb's Update: 04/04/2007 10:30 PM P.S.T.

Hi All,

I finally feel better today. This cycle was a bit tougher than the last one.... I actually felt yucky until last night/or early today. I actually felt nauseous on days 3, 4 and 5... and believe it or not, my body just decided to vomit on the last day just to say, "there, you're done, don't forget it!". I actually couldn't believe it because I was actually taking the Kytril and it usually did keep me from vomiting.

Of course I am still napping a lot... I take about a 3 hour nap daily I'd say... but then you guessed it, I can't go to sleep as early as I think I should (hence this blog update!). I finally got back into walking the dogs today... it had been almost a week that they didn't go on a walk (just frisbee in the backyard so thankfully Radar is into that too!).

I am going to head to the med oncologist probably on Friday to get labs done (even though she doesn't suggest it!). It always means a lot to follow your blood count to possibly explain why you are feeling like you feel (get it?). For instance: I am feeling very fatigued and even have a little light headedness.... so, in my opinion, why not take a look at my blood counts to see if I have any major anemia going on!? Why wait until right before the next cycle...? So, I've decided get labs done when I think I need 'em done.

Rae, you're the Glio CRA, when do your GBM subject get their labs done? Interestingly enough, Dr. Anita Kaul (my med onc doc) used to be at COH so she knows Somlo, Morgan, Shibata, Doroshow, etc... Maybe you should ask them if she's good enough for me to have as a medical oncologist! ;-)

Another reason I want to get my labs done more often (at least during this cycle) is because I really want to see how my counts are and if it will be safe to be back at work. If my counts are soooo low, I could get sick at work and I definitely don't want that. I'm starting to look forward to getting back to work and just moving on... of course I have envisioned what I will need to do at home: hire a cleaning lady, a dog walker and that sort of thing. I am just thinking that I will not have the extra energy to do that type of stuff if I am working an 8 hour day. So, as you can see, there are lots of things to think about in terms of my blood counts!

I talked to Dr. Yu at Cedars-Sinai the other day (last Friday) and his thought is that I will actually have my first vaccine before Cycle 3 (which starts on April 24th).... so, I guess the next few weeks I will be heading to Cedars-Sinai for stuff to be done! Stay tuned...

Ant's visit was great! She came on Wednesday and left on Friday (amazing because it was a LOOONG drive from San Francisco to Thousand Oaks). Unfortunately I wasn't feeling that great so we didn't really do anything fun... of course she told me that it's okay that we weren't able to do anything fun... her purpose was to come and help me! We actually went out for Reiki (okay Mollie, say something about that one!!!) .... I'm not going to get into what that is, but it was great... just a half hour for each of us and I certainly felt the guy's energy! She also cooked me a meal and of course we went to pizza since I was very interested in that. She cleaned with her steam cleaner that she brought for me and that was amazing too...

We watched The Secret as well... My Briard friend Noreen talked me into seeing that, so I listened.... I'm not sure how many of you have heard about that book The Secret but the DVD is apparently very much the same as the book, so that's the one I got. It is an interesting thing to read or watch/listen to, I'll leave it at that... It was a book on the Oprah list so that always does become popular doesn't it?

Donna, I'm glad to see that your daughter is able to grow plants :-) That is certainly something that you never were able to do, was it? Too funny.... but I'm sure your sunflowers will be bigger than you could expect!

I am still working on some sewing projects: everything from curtains, to chair covers, to quilts. Whatever I can do on that day! Usually the quilt stuff is the one I do the most. But, on the days I feel yucky, I can't do a darn thing... NOTHING!

That's it for now... it is actually time for me to have a snack and then head to bed. When my stomach says "feed me", I do it!!!

Love Ya!
Debbie