The Mask of Debbie: Posted 11/30/2007, 13:00 EST

Deb's Update: November 25th, 2007

Hi All,

Hope you all had a festive yet restful Thanksgiving! My Thanksgiving was great, but I will start with the medical stuff I have been through since the last blog update...

Last Tuesday I went to see Dr. Ahn (my radiation oncologist here in Thousand Oaks). I sure did have lots of questions about what my best option would be in terms of Gamma Knife vs. Stereotactic RT. Apparently, he had several discussions with UCLA to see what they felt I could have done in terms of RT. They are neuro-oncologists so they are not as keen on RT obviously.... but they knew I am interested in anything to beat this cancer to death!!! After several conversations, Dr. Ahn and Dr. Lai came to an agreement that RT would be okay but UCLA did not want Gamma Knife or stereotactic RT. They did say that the same dose of centigrays would be acceptable, but they wanted it to be done over several weeks instead of 1 to 5 days. Apparently I would have not been allowed on their clinical trials if I did the quick Gamma Knife or Stereotactic RT.

Of course, Dr. Ahn had to see the recent MRI to see exactly where the location of the tumor is. He needed to obviously compare it to the graph of exactly where they radiated me the last time to see if I was even able to get RT. So, it turned out to be kind of cool to see my brain on several computer screens that! First computer was my CT scan which was done pre-RT last December, the second computer was the graph which shows the exact area that was radiated last Dec/January and the third computer was the latest MRI. There was a slight light at the end of the tunnel when I heard that the area where the new recurrent tumor was WAS NOT radiated last year (if it received any RT last year, it was just a dusting) !!!! There was a God that day :-)

So, thankfully, I am able to get more RT (not sure what the dose will be yet) to a decent sized section of my frontal lobe just in case that damned dot from the right side of the frontal lobe would want to come back. I was honestly relieved that RT was an option since I didn't want chemo to be the only thing I could do. I sure hope that I can continue to sing and dance even after getting the frontal lobe radiated!!! You all know how much I love doing that :-)

Dr. Ahn and I discussed when I could start the RT. Because he said that it takes them about 2 weeks to get everything set up and graphed, we came to the conclusion that I would start the RT after the Dec 26th MRI (probably right after the New Years Day). I sure don't want to get RT when I am taking the CCNU chemo for several reasons: First, I didn't want to get radiated during the time when my blood counts are at their lowest and second, I want to see if the CCNU chemo is actually working. I obviously wouldn't want to go back on CCNU if it never worked to begin with.

In a bitter sweet kind of way, all of his radiation technicians were very happy to see me! I guess I must have made them laugh the last time I was radiated because I so upbeat about everything even though they are actually radiating me! I guess it is confirmed that I AM crazy, huh?

This Tuesday (the 27th) I'm off to Dr. Ahn's office to get a CT scan done so they can plan on the exact area that they will radiate. In addition, they will build my lovely mask so they can strap me down on the table again. Lovely, huh? I wonder if this time I should keep the mask and wear in on Halloween next year to be some sort of ax-murderer person like I always saw in scary movies when I was a kid!!! That's an option too, huh?

I got Reiki done last Tuesday night... Mick is such a wonderful guy that literally has a positive visualization about my brain! Weird, huh? I'm sure his visualization is different than mine... These days my visualization is that my brain is plump, pink and plush... looks a little slippery, but it sure is shiny and happy! I used to think that visualization was sort of wacky, but I'll do anything I can to get rid of this ugly tumor :-) I will continue to do Reiki weekly when I am going through this chemo and the upcoming RT. Enough discussion about brains so it's time to move on to "normal life" stuff!

Thanksgiving was much happier this year than last... and you're right Mollie, I sure did look better! I probably should have taken a picture of myself and did a before and after photo comparison on this blog site :-) I was originally going to go up to San Fran to see Ant and Paul for Thanksgiving, but thankfully they were kind enough to come here to celebrate with me in my own environment. Kim also decided to spend her Thanksgiving with me instead of her family. The support from both Kim and Ant is always amazing, so of course I couldn't say 'no' to either of them when they wanted to come here.

They did everything from preparing and cooking the entire Thanksgiving meal to cleaning up afterward. We also all decided it would be a nice thing to set up Christmas tree (a fake one of course) and to decorate my house with all of my Christmas items (from candles to napkins). I don't have that much, but it felt good to see it all around the house. The one catch was when we tried to get my fake tree out of the garage, low and behold it was not mine anymore..... it belonged to RATS!!! Yup, you heard it correctly, RATS! So, I had to throw it out and buy another fake tree. It all turned out okay once everything was done... I just thought I'd mention my newest pets for your reading pleasure!!!

All is still going well with Charlie these days... he seems to be coming more and more attached to me. That's definitely a good thing! Today's discussion was about Christmas and he wanted a list of what I wanted... Of course I always want small easy things like pajamas, maybe some new sheets, a sweater would be good, or some yoga clothes... nothing major. He was the one that thought it was too cheap so he wanted me to think of other things... So, I added a kitchen counter, a garage door, and a TV!!! We'll have to see what happens. The one scary things is that he can't seem to figure out what he needs! He buys whatever he needs so he doesn't seem to think that me buying him a spa treatment massage or getting him some golf lessons would be necessary! So, put on your Christmas gift hats folks... I'll need some advice on what to get a metro-sexual man (he does more spa treatments than I do!!!). Maybe just a weekend trip to Catalina or Santa Barbara to stay at a Bed & Breakfast???

That's it for now... time for me to get some ZZZZZZZZZZs!

From the bottom of my heart, I continue to thank you for all of your support! It means so much to me...

Love Ya, Debbie

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

Important Update from Deb's Mom and Deb: November 14th, 2007, 10AM EST

Deb's MRI results from yesterday not good; she has a recurrent tumor in her left frontal lobe. She will be placed on a new chemo drug starting this Thursday. The tumor measures approx 1.0 cm X 0.5 cm. Keep her in your prayers she needs us now more then ever....
Deb's mom


I will write a blog update today most likely... lots of emotions going on right now but I will give you as many details as I can. I am completly shocked but will continue to be a fighter.
Debbie