Wednesday, May 16, 2007

Deb’s Update: May 16, 2007 8:30 AM PST

Hi All,

Sorry for the delay in the update on how things went with the MRI, vaccine screening, etc... Here are the latest updates.

Last week I finally had the neurology appointment with my neurologist here in Thousand Oaks. He is the one that called me "normal" last time due to my neuro exam. Of course this time he didn't make me memorize anything and tell him an hour later, so I was much happier :-) He did tell me that my EEG that was done about 2 months ago was perfectly fine... no seizures were seen which is always a good thing! Basically I was in and out of there, but here is one interesting thing he asked me: "Are you having additional word finding problems?". I don't think I am and I Kim, my mom and anybody I talk to all the time doesn't think so either! Apparently it's the anti-seizure medication that I take which can cause that.... so, I have that part of my brain chopped off and now I'm on a pill that may change my word finding. I will keep you posted on that...

The MRI that I had last Friday (May 11th) was "better than the last one even" according to Dr. Yu! I am always stunned when he tells me things like that :-) He said it was just perfect and so clear that he was happy too! I do usually get stressed out during and after the MRI until I get to hear the results from Dr. Yu.... I didn't think I was stressed this time, but Kim reminded me that she can tell and that I talk too much when I'm stressed and I get irritated... so, low and behold, I was chatting up a storm and getting annoyed by several things...

I had my screening done for a newer vaccine trial which is technically a phase I trial just because they have changed what they will mix my dendritic cells with. The good news on this trial is that the 6 antibodies that they will use to mix with my cells are the 6 that I already have! Apparently the subject only needs one of the six to go onto the trial, and low and behold I HAVE THEM ALL!!! So, you can imagine that Dr. Yu is excited to use me on this study because of my antigens. Here's the catch... my ANA (antinuclear antibodies) was high so I have to go and get additional immunology type lab tests done before I can start the study. Everything else was fine, but this is the last thing they will re-check.

Of course I was bummed that I am not just eligible immediately because I really wanted the first vaccine before my trip back East... Plus, I wanted to be the first subject on this new vaccine study (more attention when you are one of the first subjects...)! Today I am off to Cedars-Sinai again to see an immunologist which will hopefully be okay. I am sure that I will have lots of additional lab tests done and of course a physical exam, family history, past medical history, etc... done as well. Fingers are crossed that I will know these results by the end of the week.

Here is the kicker... No Temodar (chemo) four weeks prior to the first vaccine through six weeks post the 3rd vaccine! So, this is technically for about 4 months May through August. Kind of scary, huh? But, Dr. Chu and Dr. Yu actually think that the vaccine will be better for me (due to my 6 antigens that they just love!) than the Temodar... of course it's a clinical trial, so it's just a guess for them. So, the worst case scenario is that I will not be doing the vaccine trial since my eligibility is not good enough (my ANA labs) but I will continue my treatment with my Temodar. Definitely stay tuned on this stuff!!!

I also have a follow-up appointment with my radiation oncologist this afternoon so today will be full of doctor's appointments for me.... one down at Cedars-Sinai (about 45 minutes away from here) and one down the street. Hopefully the LA traffic won't harass me today ;-)

On another note... Alicyn sent me the best snacks that I have had in a long time... of course since she is a health nut, these snacks are good/healthy. I'm sure the nutritionist will like them when I tell her what I'm snacking on now... I will be calling the nutritionist right before I head back East since she wants to see how that May chemo treatment went.... of course if I'm on the vaccine trial and not on the chemo in May, she'll be all over the place just wondering why I'm changing things AGAIN!

So, Radar is back to normal in terms of his weight... I took him to the vet to get weighed (they finally got a new scale...) and they think he's perfect now! There was a new vet there that hadn't seen him before and he said that all dogs should be as thin and healthy as Radar looked and felt! So, he and I are both the weight we need to be :-)

That's it for now... I have to get ready to head to Cedars-Sinai. I can't wait to see my East coast friends, family, etc... in a few weeks! Plus, I actually can't wait to get back to work again.... it's been way too long since I've been able to actually get up, go to work, and be in a routine!

Thanks for all your comments, prayers, fingers crossed, etc.... you guys really keep me going!

Love Ya,
Debbie

Friday, May 11, 2007

MRI ALL CLEAR: Update 05/11/2007 16:00 E.S.T.

Deb wanted everyone to know that #2 MRI is clear. DEB will post more this weekend.

HOW GREAT IS THIS !!!!!! Watch for more from Deb.

-Dianne Reardon

Monday, May 07, 2007

Deb’s Update: May 7, 2007 8:15 AM PST

Hi All,

I just realized that time is flying and I hadn't written an update in almost two weeks! Bad, bad, bad for me, huh?

Obviously I have been doing much better on this last cycle (cycle #3) of the Temodar... I always start to wonder why it was so good: hhhhmmmm? Is it the Reiki, is it eating the lemon squares, is it because I gained about 2 lbs, is it that I am doing more social stuff, is it because I can now do gardening little by little since it's warmer, or is it because I take more vitamins? See, there are many things that make me wonder. But, of course it could be because my body is getting used to the dose, the schedule, etc...

It seems as though I was definitely not nauseous, had much less fatigue and could walk the dogs even on the chemo days! On Thursday (mid-cycle) the dogs and I headed out to Ventura to say "good-bye" to Cliff... He has headed back to the East coast to live in RI closer to family (he and Christina are expecting their baby in July so I'm sure Betty is glad they will be 'home'). The dogs sure had a good time headed out to dinner with Cliff and me! There was a Mexican restaurant right on the beach where we could bring the dogs to since we were sitting outside. Of course Radar and Nala were very happy when people stopped by to pet them... You guessed it, Radar even goosed a lady or two ;-) Plus, after dinner they loved to walk the beach (the RAN/SPRINTED off leash actually while we walked!). In addition, I went out to the Melting Pot for dinner on the last chemo day (Saturday)... I'm guessing that if my body let the fondue cheese, meat/seafood and fruit/chocolate settle in I was doing perfectly much better than the last cycle! I couldn't even just drink a puree carrot soup the last cycle on the final dosing day!

I have started to definitely add some protein shakes (made with soy milk of course!) to my calories since that was a suggestion made by the nutritionist... I'm hoping that she will think that I have added some 'good' stuff to my eating list :-) Tomorrow is my monthly appointment with the nutritionist so we'll have to see how she thinks I am doing... I had to list exactly what I was eating on days I was hungry, days I wasn't and definitely days I was taking chemo. So, she will be calculating all of the calories, carbs, protein, fat, etc... and we'll see what she thinks! I'll let you guys know if I need some new snacks! Alicyn happened to send me a website that has some healthy snacks on it, so she has kindly ordered me some.... we'll see how much I am loving them as I start to eat 'em!!!! I have finally started to bake my own lemon bars but they sure aren't as good as the ones that Joann can bake! I'm soooo not a good cook... :-( Thankfully, Hillary understands that one and comes over and brings me lunch here and there... She came last week and we had a great lunch (Subway subs!), ask Radar, he'll tell you how nice she is! He sure does continue to goose her and put his head under her armpit to make her laugh! It sure does make me laugh too which is a good thing...

I have an appointment with Dr. Yu this Friday.... you guessed it: MY MRI!!! Thankfully Kim is able to take me again so her support is definitely needed on those MRI days. It's hard to believe that I will need one every two months... doesn't it seem like I just had one done? It's been two months already! The MRI is at 7:00 AM and my appointment with Dr. Yu is at 8:30 AM... he is the one that tells me how the MRI looks.... again, all fingers and toes are crossed that he will be stunned at how good it looks. Although it is now 6 months since my diagnosis, I'm guessing my MRI results are still good... However, I think that the MRI is the event that will always make me worry and stress me out until it's done and the results are great! Even Radar thinks I'm fine... he barely even sniffs my head anymore since he knows it's free of cancer cells! :-) Please keep me in the prayers this week and keep your fingers and toes crossed for me!!!

Thankfully while I am at Cedars-Sinai on Friday I will have my screening done for the vaccine trial! YIPPEE!!!! If the MRI is good, and all of my other inclusion criteria are perfect, then I will definitely enroll. My guess is that I will be eligible and will be getting my first vaccine next week! Can you believe it? FINALLY, huh? Of course I will give you much more detail as I am getting through the vaccine trial...

I have set up my start date for work once again... June 25th! I am hoping that I still feel good cycle after cycle, that I can't wait to start, and that I need the socialization and mental stimulation at work! I work with such great people so it'll be nice to be with them again... I will certainly keep you posted on that one.

I am headed back East for a visit with all of my friends and family that have helped me through this tough time... Here is the tentative schedule (date-wise): Leave LAX on a red-eye flight on May 30th and will land in PVD on May 31st at 10:00 AM.... next I will stay in RI with my mom until the June 2nd party for friends and family which will be in Marion, MA at the Menzel home (Thanks to Marianne's dad John!). My sister and brother will be doing the invite and I believe will put info on this blog site too... So, then I'll be in MA and will most likely stay there June 2nd through the 4th and will then head to CT to stay with the Mannings. I will be trying to do some dinners and lunches with some of my CT friends as much as I can (they know who they are and they will have to stay "tuned in" to how I'm doing and how much time/energy I will have) The Mannings will have a birthday party for me on my actual birthday (June 7th) for my CT friends so that will sure be a nice way to see everyone! On June 8th I will then be headed to Delaware to go to Jodi and John's going away party/wedding reception...Thankfully Al will be driving me down there and attending the fun event with me! On Sunday, June 10th it'll be back to CT or RI and then heading home to CA on the 11th... whew, do you think I can handle all this stuff? I am hopeful that my friends, family, etc will let me nap as I may need it... Is this enough info Nik? :-)

Okay, that's it for now.... I will send you a quick update on Friday with the MRI results (and maybe some new pictures too!).

Love you guys!

Debbie