Deb's Update: Sunday, November 18, 2007 5:15 PST

Hi All,
Not even sure where to start..... Recurrence of a GBM sucks. It's almost as if I want to start telling you about the fun stuff that I did from the last blog to the last MRI, but I guess I'll end the update on a positive note! Please don't feel offended if I have not returned a phone call or email.... because I'm talking about this for hours per day, I still need to have enough time to sit silently... So, here are some details and I will talk to you again, don't worry about that!!!

I was feeling so good prior to this MRI that I decided to go it alone. It was actually the only one that I had gone to by myself. But, since there was not going to be any physical presence, I decided to bring my Gram with me: I put her diamond ring that she gave me onto a necklace and basically wore her over my heart that day. Maybe that's why I felt complete and confident... :-)

The MRI scanning was fine since I am actually able to meditate during that half hour of loud noises. I do always need time to relax and the loud beeping soothes me more than it used to... After the MRI, I headed up to Dr. Lai/Dr. Cloughsy's office for my results. It seemed as though it wasn't as busy as usual there so I really did think that Tuesday was a perfect day! I am usually waiting for hours in the waiting room before I even get called into the doc's office. But, that day, it was easy sailing... until Dr. Lai came in to show me the results...

He set up his laptop screen to have all of my MRIs on it: Sept, Oct and Nov... Low and behold, he sat down and said the word "progression" or "recurrence" (I can't remember which one it was!). That's all I heard. I do not remember what he said when he walked in, or what I said, but I will never forget the words that the two dots were now back and have turned into one tumor. I was SHOCKED. Surprisingly enough, my attitude was very clinical... I asked lots of questions like: "so, can I have it removed?"; " so, can I get radiation to zap and kill it?"; "what kind of chemo do I have to take now?"; "should I be having symptoms?"; "what would the symptoms be?"; "how big is it?"; "can you show me the original MRI containing the huge tumor that I had last November?"...

Interestingly enough, the tiny dots were not significantly measurable from September. However, when he showed me the slight look of "haze" in the October MRI, he said that it appears as though it was the tumor starting to form (I think that's what he said... something like that). So, he measured a tough to see 'haze' and it was 0.5 cm X 0.25 cm. Then, the damned November MRI had an obvious one that was 1.0 cm X 0.5 cm... Saying "SHIT" was about the only think I could emotionally say in the office... I held Gram's ring which kept me grounded until I left the office.

I had to just take notes with the answers he gave me so I could stay in-tuned to what my options were. He did give me two ICFs (Informed Consent Forms) for studies that they had going on that I could screen for... but, in his opinion since the tumor was small he thought it would be best to start on CCNU which can otherwise be known as Ceenu. Uggggh, a different chemo: what would those side effects be?; how does that work?; why is it different than Temodar?; does he have data on the patients' responses to this stuff?. Again, I stayed clinical and thank God I had experience in the pharmaceutical/biotech industry and also experience at COH putting patients on chemo drugs/trials!

The CCNU can only be given for 6 cycles. I take oral capsules on Day 1 of the cycle and that cycle is over on Day 42 when I get an MRI. So, if the MRI on December 26th shows that I have stable disease or a response (only a good one obviously), I will stay on this chemo. Thankfully, my mom will be here for Christmas so I will have her support that day. It seems as though my family has decided to always have one of them come to my MRIs for support.

If CCNU doesn't work, he wants to try me on a chemotherapy called Carboplatin. I will take everything one day at a time and if I need to, I will take the tough stuff!!!! I'll take anything.... Plus, if any of these chemos make me lose my hair, I decided to become a blond :-)

So after my bad news from Dr. Lai, I had to head down to the UCLA pharmacy to get my new chemo. I had to wait about 20 minutes for them to fill the Rx so I decided it was time to call my mom to tell her the news. While heading outside, my cell phone rang and it was my mom. That's when it hit me........ My eyes welled up with tears; I had to focus on breathing because I was scared... Telling my mom that I had recurred/progressed was like having a nightmare and wanting to wake up to realize it wasn't true. I can't imagine what it's like hearing your daughter tell you that life is going to get tough again: time for a new battle/war against a tough cancer. So, instead of making calls to every other family member, I asked my mother to do that for me.

Mom suggested to call Kimmie to see if she could meet up with me at UCLA to drive me home... of course I would have had to wait for 2 hours so I took the back roads home and re-grouped. However, I did call her and she decided to come out to Thousand Oaks to see me that night as fast as she could. So, around 9:00 PM she got here and I decided that I needed to go eat some food at Denny's! Yup, you heard that right..... I needed comfort food! Kim also brought me a great tank top that she had bought me from the Wicked musical that we went to several weeks ago. Of course my favorite song was called "Popular" so the tank top she got me was inspired by that song! It sure was a pick-me-up and I intend to wear it while at Yoga...

Obviously I was not able to call Charlie that night and tell him the news... However, he always calls me in the morning when he's on his way to work so I knew I would tell him in the morning. So, on Wednesday morning I told him about the tumor that had been found and that it's time for me to get tough and fight this shit! But, of course I told him that I would understand if he didn't want to see me anymore. He thought that was crazy and he is obviously standing behind me 100% from what I can tell. Since I was supposed to start the CCNU that Thursday night, he wanted me to stay with him at his apartment (near UCLA) in case I didn't feel good or in case I needed help. So, that was a good sign in terms of what Charlie thinks of me...

Friday I headed to UCLA to get a CD full of my Sept, Oct, and Nov MRIs and brought them to my radiation oncologist up here in Thousand Oaks. I basically made him and Dr. Lai have a discussion in regards to my Radiation Therapy (RT) option. However, there is one catch; I cannot receive RT to that area if it has already received the maximum amount. So, I have a meeting with Dr. Ahn (the RT guy) this Tuesday. Potentially, if I cannot get stereotactic RT another option could be a Gamma Knife. You'll have to look that one up since I can't continue to write pages and pages with stuff that may or may not happen!!! :-) In a nutshell, it's usually an outpatient procedure not with a real knife.

So, far so good on the CCNU in terms of how I'm feeling. I guess I'll have to wait until this cycle gets to Day 21 to 28 to see how I feel when my counts are at their lowest. I will of course keep you posted.

Now it's time to tell you some good stuff... This was such long post so I'll just tell you quickly about what I've been doing. As usual, Charlie and I see each other most weekends unless of course I need down time. Since the last post, we've been to the Laugh Factory, the UCLA vs. ASU football game at the Rose Bowl stadium, and nice restaurants. Last night at dinner Charlie asked me more and more questions in regards to the cancerous tumor. He asked questions from symptoms from last year to the surgery, to how I felt over the past 6 months, to why I left Cedars-Sinai and decided to go to UCLA, etc... So, basically I think he always wanted to ask these questions but couldn't find a good time to do it. He's still with me, so I guess it's still a good thing! Today we went to a shooting range and for the first time in my life. I looked at the target as a cancer cell and I got pretty well if you can believe that. :-)

At this point, I will probably head to Reiki weekly since I always feel good after it. Time to add some boost to my Chakras!!!

Ant and Paul are coming down from San Fran for Thanksgiving. The following weekend I will be heading to a spa/hotel with Kimmie's family for her parents' wedding anniversary (its years and years but I do not know how many exactly). Then, as December goes on I will set up my house for Christmas. I also hope to have the Feng Shui woman come back to boost up my house... probably sooner rather than later! On Dec 20th my mom and her friend Helen are coming out here for 10 days... My mom will help me do lots around the house as she always has an interest in doing house chores :-)

That's it for now... it's too late and I have to get to bed... I've been on and off typing this update for the past 5 hours! (talking on the phone, going to YogaWorks, eating dinner, going grocery shopping...)

I will continue to fight and so thankful that I have such amazing friends that are so supportive. I love you guys!!!

Love,

Debbie