Wednesday, December 19, 2007

Deb update: Dec 19, 2007, 11:00 PM E.S.T.

Hi everyone, I got the chance to talk to Deb tonight and wanted to share what she said. “Basically, this sucks!” As you can see she’s still Deb. She’s concentrating on the very near term and getting some of the swelling down. If they can get that under control then she can look at treatment options. Word finding is getting harder and she is in a bit of pain, but right now it’s still manageable. She’s on her own tonight and tomorrow but her Mom, Dianne will be arriving in LA on Thursday night. She also said that her holiday card plans are on hold but that we should not use that as an excuse to send ours out late : )

She’s scheduled for another MRI in two weeks, assuming that symptoms don’t worsen. We’ll be updating news for everyone as we get it, and hopefully will be able to get posts from Deb and or her family when they are up to it.

Keep the faith!

Love, Amy Manning (aka blog maven)
Deb's Mom Dianne Update: 12/19/2007, 18:00 E.S.T.

The following are two updates from Deb's Mom concerning Deb's condition. We'll post more once we have any further information.

  • Deb's not feeling very well these days, very tired, headaches & vomiting, losing weight. Saw doctor yesterday MRI tomorrow instead of next week. She will post when feeling better.... Deb's Mom
  • posted 12/18/2007

  • MRI today revealed the tumor to measure 4.5x3. something with lots of swelling hence the vomiting & headaches. Placed on steroids for swelling also recieved injection for blood counts. Not good news.....Deb's mom Dianne
  • posted 12/19/2007

Friday, November 30, 2007

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




Monday, November 26, 2007

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

Monday, November 19, 2007







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


Wednesday, November 14, 2007

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

Friday, October 26, 2007

Deb's Update: October 26, 2007 9:15 AM PT

Hi All,

I have finally found the time to sit down and write a blog update. I have been busy as hell these days and have decided to give myself some "down time"... I need it!

As you already know, my last MRI was a good one! Phew!!!!! I'm sure you can imagine the stress that my body had for 4 weeks between the last two MRIs. I was so happy that my dad decided to come out here to spend some time with me and of course come to the MRI and doc appointment with me for support. I think my dad was just as stressed as I was but the minute we found out it was a good MRI, it eased both of our stress! I almost cried hearing that it was a good MRI....instead, I made the neuro-onc doc stand up so I could give him a big hug! I think it shocked him but hey, it's what worked for me!!! I will get back on my previous MRI schedule so my next one is Nov 13th.

Monday , Oct 22nd I finished Cycle 9 of chemo... I look at it this way: 9 cycles down and only 15 to go! Not much different than the usual in terms of side effects... slight headache, sinus pressure feeling and of course, constipation! I know you guys like me to talk about bowel movements don't you!? :-)


November 12th will be my yearly anniversary of being a cancer survivor... I'm keeping the faith that you will hear the same thing next November! This anniversary I intend to send an anniversary type card to Dr. Yu (my Cedars-Sinai Neurosurgeon) and Anne (his nurse practitioner)! Why not, right???

Dad's visit was nice and calm... he did some work of course, but it felt good to have a family member out here for a week. No golf since it actually rained a bit when he was out here! Neither of us could believe it, but it gave us both some nap time and some time to watch some pre-world series baseball games... it was great for him since according to the time clock, he didn't have to stay up until 1:30 in the morning to watch the entire game :-)

He left one week ago and the Sunday after he left is when the CA winds started and that's when the So Cal fires began... I'm sure you all know that there are fires all over the place in Southern Cal right now.
Some are already contained yet some are not fully contained. From Sunday on, it's been an ashy/hazy sky and hot! Not a good combination. When the fires are blowing the ashes around, it basically means: stay in your house, windows shut and no AC on even though it's almost 90 degrees! Not fun for me or the dogs. My house didn't seem to get too hot, but it's not fun to do NOTHING outside. No walks for the dogs after Sunday night... Today I can actually take them for a nice walk since the air quality outside is better.

My neighborhood was out of power for most of the entire day that Sunday when the winds began. Even one of the electric wires sparked and ended up falling down on my driveway! So, of course the electric company had to come here to fix the three poles that weren't that happy (one just sparking, one actually on fire a little and the other that was sliced off by the wind and came down on my driveway)... My house was obviously affected and I have to basically put in a claim for the things that were surged and ruined (television, router, vacuum cleaner, water fountain, dining room ceiling light/fan, thermostat, sprinkler system and my AC). So, it'll be lots of estimates to get some of these things fixed... I'm thinking I will probably find more things that were ruined.

I actually had to call the electric company AGAIN this Wednesday since I was having light flickering in my house! Not a good thing. In a nutshell, the guys that supposedly fixed the power, didn't cover the neutral wire which had sparked and obviously was affecting my house. Hopefully this will all be solved after I get the claims sent in and hopefully approved. So, here's another nutshell... I've had to just listen to the Red Sox and NOT WATCH THEM the past two days.

Tuesday night this past week I went to Pantages Theater to see Wicked! I thought it was a great musical so I would highly recommend it to anyone that likes the Wizard of Oz... my favorite song was the "Popular" song! I actually find myself singing the few words I know from that song when I'm walking around my house... I can't do that in public as people would think I'm crazy! Those who have see Wicked will know the song and will probably giggle when they know I'm walking around singing it!!!!

I was supposed to go to San Francisco this weekend to see Joann for a night before she headed back to CT and then spend the weekend with Ant and Paul. But..... I decided I was too exhausted and needed 'down time' to slow myself down. Ant and Paul had called me and wanted me to reconsider going since there was a surprise: Donna was coming out to San Fran for the visit as well!!!. But, I had to decline since I need to do what my body tells me to do.... "stay home and slow down and get some sleep". This was a very tough decision since I would have loved to see everyone, but it's what I had to do.

That's it for now... next time I'll have to post pictures of what's been going on around here these days.

Love you guys!
Debbie

Monday, October 15, 2007

News Flash Update: Scan Clear!! October 15th, 9:00 EST

Deb has just called to say that her MRI today was completely clear. The spots from the previous MRI have "disappeared" and no other anomolies were seen. Great news! Deb and her father Bob will be celebrating and Deb will post an update shortly.

Tuesday, October 09, 2007

Deb's Update: October 9, 2007

Hi all,

Here is an update with no pictures... now I'm totally due to post photos: from Jodi's visit, the dog's new trick, Camp Keepsake, and now the Red Sox/ Angels game!

I'm done cycle 8 and all is well. The dose did go up a little for 3 of the 5 days... I'll take it! It didn't make me feel any worse, so I'll have to see how the labs go tomorrow. Hopefully my counts are the usual counts that I've been having since Radiation/Chemo combo. Of course I am completely focusing on my brain these days... wondering if I can feel a twitch in the frontal lobe, or headache, or balance problems, etc... So far so good. I am hopeful that Monday the 15th's MRI will be the same (which will be a good thing!).

I'm still meditating but it seems to be more challenging now that I'm back into my normal routine. But, I would say it's still keeping me grounded which is a good thing :-) I even meditated the usual times while I was at the Camp Keepsake event the weekend of September 28th, 29th and 30th! Now I can talk about the Cancer Hope Foundation camping event...

As much as I didn't want to go to the camp with all cancer survivors, their families, current chemo patients, etc... it was great! Thanks to Kim for making me apply to get into the camp for that weekend. Campers and their friends/family were given a host who was the one that helped us do EVERYTHING that weekend from getting warm water to drink, meeting us at an event of doing crafts, or going to a Life Coach to hear him talk about getting your life in order. Kim and my host Donna was amazing... she even made Kim and I some nice scarves which was needed at night in Malibu!

Thankfully the camp had 'dormitories' instead of tents! Phew, huh? I wouldn't have been interested if I had to sleep in a tent, on the ground, when it's cold! Okay, not totally cold, but you get my idea, huh? We arrived on Friday night at 4:30 PM and set up our room in our London Tower dormitory (everything was named for Europe stuff since that was the theme!). Then it was introduction time to the staff and a nice camp dinner... okay, so the food wasn't great, but the atmosphere was. The one thing that was completely amazing is that all of the events from jugglers, singers, 'coaches', massage therapist, other spa treatment types, acupuncturists, etc... were all volunteers. They spent their time to help us and never got paid a dime by us or by the Cancer Hope Foundation. Amazing, huh? My hope is that someday, I can become a host and help someone there... I told my Mom she will be coming with me next year! I'm sure she will love it too!

There was obviously lots to do which I am not going into too much details on, but you can always check the website for the Camp Keepsake and you'll be able to see how amazing it is. We got pictures from them but Kim has the CD so she could copy it for herself... so, I of course don't have those pictures to post yet. I'm really getting behind in pictures, huh?

I was able to go to the third game for the Red Sox... they were out here in Anaheim playing the Angels (I'm sure you all know that) so I knew it would be a great/fun thing to do. If you saw the game, you can relate: WHAT A SWEEP! The Sox won 9 to 0... you should have seen all the Angels fans leave in the 8th inning knowing their team wouldn't win. Boy oh boy was I glad to be sitting near the Red Sox dugout since there were lots and lots of Sox fans screaming and yelling. Of course, we made the Angels fans 'annoyed', but hey, live life to the fullest, huh? Now if the Red Sox get into the World Series with the Diamondbacks, you know where I'll want to be: Arizona! I've been to the stadium in Phoenix before so it'd be a great place to see the Sox...

I should know in the next 2 weeks ( I know I keep saying something like that!) whether I have a job here at Amgen or not. We were told that about 675 people would be laid off from the Thousand Oaks campus... So, fingers are crossed that regardless of what happens, I can keep insurance somehow. It's not all about work for me these days, it's all about keeping health insurance!!!

I have definitely added more Yoga than I had been doing. The facility (YogaWorks) has finally opened at the end of August so it's nice to be at a studio where yoga is the thing to do! They also have an area where you can meditate, so it's right up my ally!

My dad is coming to visit for about 8 days... you guessed it, he will be supporting me for my next MRI. Hopefully, he'll be the one that throws me a party when the results come back perfect... maybe those darn dots are gone! Or, I'll take it if they're just the same. I have to start setting up a 'to do' list for Bobby when he's here: probably walking the dogs, painting my master bathroom and of course doing something fun with me and Charlie like GOLFING! I am not 100% hooked yet, but I'll get there.

Oh, by the way, Charlie is the guy that I have been dating and I haven't mentioned that yet... I just didn't want to get you guys all excited in case things didn't work for Charlie and I. He doesn't know a ton of details in terms of what I am going through (cancer and chemo wise) but he knows some minor details but hasn't asked me any more questions... he'll ask me when he wants to know what's going on with me. We're just about at our 6 month anniversary (Oct 15th if you can believe that). So, hopefully that day will be a great day: good MRI and Happy 6 month Anniversary! Oh, and just so you know... he's only 5'4'!!!!!!!!

That's it for now... I don't have much time to type and proofread what I've written these days, so I'm sorry if there are spelling errors!

Love you guys!

Debbie
Charlie and Debbie pre Red Sox game sweep!

Debbie and Jodi

Radar and Nala "sitting pretty"
Red Sox line up: Game 3 Vs Angels

Cool flag they had during the Spangled Banner







Tuesday, September 25, 2007

Deb's Photo Update: September 25th, 2007

Top Ten Things We Learned about Colon Cleansing
10) You can always eat Bliss Balls...
9) Men need to wear maxi pads too sometimes...
8) Don't always assume that a fart is clean...
7) Sesame oil is not only used for eating...
6) We may be on the web cam from Dr. Simon's office for our colon cleansing...(let's hope not!)
5) Don't ever sit on a stained chair in the meditation room...
4) You can't meditate or relax while getting "cleansed"...
3) We learned for the first time that we had two sphincters...
2) You are what you eat...
1) And the number one reason is... it feels so good to get it all out!








Tuesday, September 18, 2007

Deb’s Update: September 17, 2007 8:30 PM PST

Well guys, here is the latest MRI update.

This is my month 10 MRI and it was the first MRI that I had done at UCLA. There is one bit of uncertainty: it wasn't 100% perfect. There seemed to be two <1mm (pin-head sized) dots in the left and right sides of my frontal lobe. Since the MRI done at UCLA seems to have more 'cuts' than the Cedars-Sinai MRI they could have located a radiation artifact that was there a while ago but was not seen on the last C-S MRI. That is one option, but the other two options could be a fluke, or disease progression. Let's hope it's option one or two, not three.

Therefore, I will be having another MRI 4 weeks from today (October 15th) to see if these pin-head sized dots will grow. So, keep your thoughts positive!!! No growth in 4 weeks will be a big relief...

Chemo will be delayed a few days as well since the UCLA folks would like to see my ANC go up a bit... I'm hovering around 1500 which isn't horrible, but they just want to see if my nadir on my blood counts is longer than they expect. The day for the standard nadir is Day 21 and my Day 21 was better than today (Day 28).... so, I could just have a nadir that goes much longer. CBC labs in two days to see if the counts go up or go down even further.

So, I will be having UCLA follow me a little closer. I will most likely have them follow my labs a lot more than my medical oncologist follows them since they see more GBM patients than my med onc doc sees.

No new updates on Amgen either but we should know more (job wise) within the next 4 weeks too... huh, don't you think it's definitely time to meditate!? I need it more at this point, so going to the Chopra center when I did was what I needed!!! So, stay tuned, you will still get some photos and the top 10 list...

Keep your thoughts positive and I need to stay in those prayers!

Love ya,
Debbie

Wednesday, September 12, 2007

Deb’s Update: September 12, 2007

Hi all…

Lots and lots to talk about on this blog update!

I’ll start out with the GBM stuff and then of course I’ll tell you about the fun stuff I’ve done since my last posting…

I have decided to go to UCLA for my MRIs and will follow their calendar schedule for my treatment related stuff. It feels right to move on to UCLA’s neuro-oncology department instead of staying at Cedars-Sinai for my MRIs. I have also decided to continue to see Dr. Kaul (oncologist here in Thousand Oaks) for my labs and physical exams. Of course I am following the UCLA guidance since they see more GBM patients than most oncologists do. Dr. Kaul laughs at me because I know what I need to do in terms of labs, physical exams and that sort of thing! So, she usually asks me “what’s next, Debbie?”…

So, I have changed my chemo dosing days from Monday through Friday to Tuesday through Saturday. This is just so I can follow the rules of what cycle day blood work needs to be done (Day 21 and 28) and also what cycle day does my MRI need to be done (Day 28/every 8 weeks). Basically, most everything is done on Mondays in terms of labs and MRIs. So, there’s my next point: My 10 month MRI will be done this Monday, Sept 17th!!! Please wish me luck, continue to pray and think positive thoughts for me, etc… I greatly appreciate the continued support that I have from all of you.

So, I’m done with Cycle 7 and I’m starting Cycle 8 next Tuesday (Sept. 18th)… I guess I only have 21 more cycles to go, huh? Lots of cycles if I follow the 2 year plan which I am planning on doing. Cycle 7 finished during Jodi’s visit to me. What a trooper she is to come and see me while I’m on chemo, huh? But hey, it’s not as bad as it sounds… we did all the usual fun things that we did every time we would visit one another (when she was in Delaware and I was in Connecticut). One exiting thing that I was able to do was to give her the wedding gift: the quilt that I made for her and John… You guys all know that I love to quilt… but I’m usually somewhat emotional every time I give those gifts to people. I get so happy to see people like their Debbie quilts so I sure was happy to see Jodi liking her gift! Hopefully John liked it to J Maybe I’ll post a picture of that quilt, what do you think?

Jodi was also able to shop in the D. Reardon boutique/closet for clothes! I’m sure that Joann can relate to that since her sister used to wear lots of D. Reardon clothing items! Good thing that Jodi brought an empty suitcase since we sure did fill it up… Of course it’s a little bit of a bummer to give away clothes that I love but I have no choice since my clothing size is down two sizes since my muscular weight lifting butt is much smaller!!! (I hope you’re not thinking about colon cleansing yet… I’ll get to that point in a bit!) It is always nice to give it to people that appreciate it. I decided to even give lots of things to the Salvation Army but I told my cleaning lady that she could peek through the 12 to 15 bags of clothes, old shoes, house stuff, etc… before the Salvation Army folks picked up the bags. Low and behold, she took lots of it! Salvation Army was the only one that didn’t get lots of stuff from the D. Reardon loot!

Jodi’s husband John helped us deal with the antibiotic stuff that I’ve been going through. Not sure you remember or not, but I should be on some antibiotic prophylactically so I do not get pneumonia (a common side effect of my chemo). But, I have been off an antibiotic since I went back East so it was time to make sure I get back onto SOMETHING! John is into the infectious disease stuff right now and is doing a fellowship in Houston at M.D. Anderson Cancer Center… so, he was very skilled in giving us info as to what drugs I could go on. It all worked out and I am now taking the liquid version of Mepron since no pharmacy or ExpressScripts had that capsule/tablet… go figure, huh? It’s not so yummy tasting, but I take it daily!

No major updates on the status of my job here at Amgen. We have been told that we would know more in terms of our jobs (titles, roles and responsibilities, teams/dept) by mid October. So, stay tuned on that one… my gut tells me that my job should be okay, but I will definitely let you know if I need you to look for a job for me!

Of course there are lots to tell you in terms of the Deepak Chopra Center “Soul of Healing” event that I went to with Ant and Paul. Let me start by saying that I am so thankful for the gifts they gave me… I guess they knew I needed it J. In addition to paying for me to go to the event with them, Ant was wise enough to get both Paul and I some thick and comfy yoga mats, yoga mat bags, journals, pens, book stuff, etc… Definitely 100% appreciated, right Paul!

Before heading down to Carlsbad for the Soul of Healing, we all went to the Cesar Milan (Dog Whisperer) seminar at the Thousand Oaks Civic Arts Center. That was basically just an interesting way to train and control your dogs whether they are aggressive, shy, or just goof balls! I will just tell you that the little “pppssshhhht” sound along with a calm tap on the butt, touch of the neck or holding on the floor is working! I’ll leave it at that. It’s all about exercising the dogs first, reprimanding second (not sure I’m using the right word here) and affection third. None of Cesar’s advice was about being mean to your dog. So for you that could be worried about the reprimanding, it’s about making them work for things in addition to correcting their errors! I have to say that I am just about the Pack Leader now! I always was with Nala but was not with Radar. He is definitely still attempting stuff every now and then, but he has started to realize I’m the leader! Enough about that… I will still eventually get my pictures of their latest trick posted here once I have time to download them…

Okay, back to Deepak Chopra. I just am not sure where to start: Basti, eating, lectures, massages, yoga… I am going back and forth on whether I should just sum it up in a “top ten reasons to enjoy the Soul of Healing”, but I may just consider posting the “top ten reasons to enjoy your Basti” instead… you guys should look that one up! I am working on a top ten list with Ant and Paul so that will most likely be posted later. I will also be getting the photos from Ant and Paul so maybe we’ll be able to put pictures with the top ten reasons to enjoy _________!

It was somewhat of an emotional week but not in a bad way. Monday started emotionally with me when I had to talk to Dr. David Simon (if you don’t know him, you can look him up on the Deepak Chopra website… he’s impressive) about my medical concerns. Let me just say this… it started with me balling my eyes out when I was asked about when and how I got diagnosed. And then once he gave me a tissue (or two!) I was able to re-group and tell him lots of details that he made some notes about. He did a physical exam and personality exam basically and he had one major recommendation: MEDITATE, MEDITATE, MEDITATE! He was not as concerned with my eating, or my exercise, or my job stuff, but he sure did ask me lots of questions like “do you like your job?”, “do you like the people you work with?”, “do you have lots of friends?”, “do you have support?” “do you have regular bowel movements?”. Of course he liked that all of my answers were YES! I won’t get into major details about our ayurveda stuff, but it’s all about body type, personality, energy, etc. If you care, I’m a Vata dosha… here’s some new homework for you Mollie!

It was confirmed that I needed to slow down and meditate when I asked Dr. Simon “can I meditate when walking the dogs?”… That’s when he confirmed that my main thing I should learn this whole week is the importance of meditating when you’re a Vata!!!! So far, so good… I do it twice a day actually (half hour in the morning before work and a half hour after work). It hasn’t seemed to slow me down or to have me waste any time to do things, so I’ll take it!

During the Chopra Center week, we all had to meditate at least twice per day (sometimes 3 to 4 times!), do yoga at least once per day (although some people avoided that!), eat right, get our basti Tuesday through Friday, and get daily massages. Not bad, huh? Lots of stuff that is relaxing. I got addicted to the massages even though I seemed to have gotten bruised a few times. Each day the massages were different which was kind of cool, but I’m sure you can realize that you’ll always have a favorite massage and masseuse!

Ant, Paul and I were all very addicted to the yoga classes and tried to do it twice per day. Sometimes we had to skip the night yoga class for our Basti or our massage that was at the end of the 12 hour day. In the middle of each day was a lecture by Deepak and Dr. Simon: Deepak did Monday and Tuesday and Dr. Simon did Wednesday, Thursday and Friday. Of course Deepak liked to talk about quantum physics since he wanted to provoke our minds… or wants us to read his next book which will be called The Third Jesus or something like that. Dr. Simon talked a lot about eating, behavior, imbalance in our lives, meditating, etc… Stuff that I needed to learn about! I’m sure I’m forgetting some of the topics, but I just paid the most attention to stuff I wanted to learn about J

Now, the BASTI!!! Basically, it was not as bad as you all may have thought. Basti = enema with herbs and oils… I don’t have to get into major details about what basti is like since it will probably be interesting on the Top Ten list that I will be working on with Ant and Paul. I’ll just leave it at that.

So, that’s it for now… I’ve been writing way too long here so I have to actually get some house stuff, dog stuff done! If I have forgotten anything and you have questions, just ask on the comment section as I still love to read your comments!

Deep thoughts and prayers for my Monday MRI!!

Love you guys!
Debbie

Monday, August 20, 2007

Deb's Update: August 20, 2007 6:15 PM PST

Hi all,

Just another update... are you shocked!? I am...

Tomorrow morning I start cycle 7 of my Temodar. I don't always hate being on a chemo week since that is when I usually feel the best if you can believe it!

I went to UCLA last week for a second opinion and saw the neuro-oncologist Dr. Timothy Cloughsey and a resident but of course I can't remember his name... I was very impressed by the facility and how much they knew about GBM patients. They seem to think that I'm doing very well and wouldn't change anything I'm doing (treatment wise). They say that because I don't have a problem with the Temodar chemo (side effects basically) and my MRIs look good, I should probably continue to use the chemo for TWO YEARS!!!!!!!!!!! Yup, I said it right, I didn't mean to type "one year", they want me to continue for TWO YEARS... I can't help but say that twice since it shocked me! They said that if they see GBM patients that are doing well on the Temodar and are feeling pretty good, are younger and healthier, it can be a two year treatment. Wow, huh? I'll take it but I thought you'd need to know you'd be reading this website for a lot longer than you thought! They also gave me a calendar and what they do when for GBM patients are on the Temodar treatment that I'm on. Days 1-5, Chemo treatment; Day 21 blood work since this is the nadir; and Day 28 more bloodwork before the next cycle starts(and MRIs every 2 months/8 weeks). I found this interesting since neither my surgeon or my oncologist had those exact days defined. So, I will follow their recommended schedule which means I will have to dose Tuesday through Saturday instead of Monday through Friday from this point forward. I trust that UCLA's Dr. Cloughsey knows what to do and when since he sees lots of GBM patients...

My difficult decision that I'm trying to make now is that should I just do EVERYTHING down at UCLA (MRIs, oncology appointments, possibly studies if I become eligible, etc...)? I like my surgeon Dr. Yu at Cedars-Sinai (who follows my MRIs), I like my medical oncologist Dr. Kaul, but do I like the fact that I have to go to both locations? Maybe, maybe not... I'm going back and forth there, so stay tuned. My plan is definitely to get the UCLA neuro-oncologist the pathology slides (contains tumor) or the block (again, contains tumor) from Cedars-Sinai just so that they know what that damn tumor looked like! They also want to see my MRI before my first brain surgery so that they can see what it looked like there as well. They said they know a lot more about a tumor with the slides/block and the initial MRI. So, I'm working on that stuff at this point just in case I decide to go there again. Again, stay tuned.

Lots of interesting things going on in terms of earthquakes... Last week I felt the second one that we've had about 30 miles from here in Chatsworth! The one in Chatsworth prior to that was the one that dad and I felt while we were sleeping...This time, it was while I was at my desk working... just things that make me go hhhmmmm? Of course I now think I should wonder what's next earthquake wise (I'm obviously not a CA person, so I don't know what to expect!). I'll keep you posted on that one. I think it's actually kind of interesting so I go onto the earthquake websites here and there just to see what's going on around CA... I look at the locations and the magnitudes... kind of crazy but interesting to me... maybe I should be a weather person!!! That could be my next job, huh?

Now that I've talked about a next job, here is what is going on at Amgen... Amgen is not doing as well as expected these days in terms of revenue due to their drug Aranesp. They have done many, many press releases which basically can be read by any of you, but here's what you need I can't stop thinking about: They're going to be laying off 12-14% of the employees... we all don't know where they're going to cut yet. I do not seem to be as nervous as most people are because I just think everything going on these days around me happens for a reason. I should know what will affect me, my role, my team, whatever, by mid to late September. I will keep you in tuned to that one! But, of course I may need all of you to keep me informed if you find me a job out your way (anywhere, I'll take a job with good medical insurance ANYWHERE!). You Pfizer folks know we've been through this before, so I'm prepared!

On a better note, I have another visitor coming this Thursday night! Jodi is coming back out here for her 4th visit since I was diagnosed... she's a trooper and is such an amazing friend. Of course we do not have major plans yet since she will leave Monday PM... so, my guess is, lots of chatting, dog walking, shopping and eating! Not bad, huh? I can't wait for Jodi to see the house again since lots of stuff in the house has changed after her last visit. Time flies, so If you can believe it just one week after that I am headed to my colon cleansing event, I mean I'm headed to Deepak Chopra "Soul of Healing" event with Ant and Paul :-) I can't help but be intrigued by what the heck the colon cleansing plan is... I think it's basically just eating different types of herbs and stuff, so I will be asking my doc before I figure out if I can do that. If not, no big deal, it'll be lots of meditating, yoga, relaxation and massaging. I probably shouldn't be talking about bowel movements, but hey, I thought you wanted to know what's going on with me these days!!!

Nala, Radar and Joey are still as happy as ever... I'll have to take a picture of what the latest dog trick is... I can't tell you until you see it on a picture, so stay tuned. I'll try to do that this week or next. Joey seems to be looking like a 5 year old cat these days (he's actually 11 if you can believe that!)...he has slimmed down and is springing around the house now... of course Radar is into that since he can herd him! Joe also knows the word "biscuit" now since that's the word that the dogs know in terms of their treat... Joe sure does like biscuits these days too!

That's it for now... time to walk to dogs and prepare for tomorrow's Cycle 7, Day 1.

Love you guys!
Debbie

Friday, August 10, 2007

Deb's Update: August 8th, 2007 8:00 PM PST

Hi all,

Don't hate me because I'm late! Now that I'm back at work and can exercise almost like I used to, my blog playtime has had no choice but to slow down. I look at that as not a bad thing if I'm doing well, right? As you can see, I'm just trying to give you an excuse.... here goes the summary of the past three weeks...

As you all know, I had another great MRI! Thanks to my mom she has already put that on the blog site... That MRI was basically about 8 months post diagnosis so I was stressed. Progression average for GBM people is actually 6 to 9 months so I just kept my hope that I'm still disease free... but, stress isn't easy to avoid as you can imagine. I was signed up to 'go it alone' that day but thankfully Kimmie surprised me at 6:30 AM at the Cedars-Sinai MRI center and relieved lots of my stress. She obviously knows me well and when she spoke to me the night before the MRI, she could tell I was nervous. Dr. Yu also knew I was stressed so his immediate statement to me when he walked into the room, was " Looks great again"... I basically just started spitting words and signs of relief so I made him laugh as usual! Next MRI should be mid September.

I usually have to make an appointment to see Dr. Ahn (my radiation oncologist) who likes to review the MRIs as well. It's always a good thing since it's nice to have someone else's view of what is on that MRI. He was happy with the latest MRI as well and said that he will just see me after every other MRI but would still like to see all of the scans. Another positive thing if he doesn't think he needs to see me after EVERY MRI!

I finished Cycle 6 and have had another ANA done just to see if that is improving now that I'm off of the Bactrim DS for about 2 months. The titer has gone down more but it is still above normal. The first ANA, it was about 17 times normal, the next one it was about 9 times normal and it is now around 4 times normal... I will keep you updated as I continue to see that go down. Interestingly enough, the one item in the ANA lab is that I have an above normal lab result for Lupus in particular. So, of course I started to look into what symptoms I should have for Lupus, what causes it, what can be done, etc. Low and behold, they described that 5% of the drug induced Lupus cases are caused by 6 particular drugs... You guessed it, I have taken one of those drugs: DILANTIN! I was allergic to that damn anti-seizure med so I'm not surprised. It said it would go away once any of the drug are stopped. So, I will follow that of course. Cycle 7 starts in just under 2 weeks. Time sure does fly...Oh, and one more thing... I seem to still be weighing about 132 lbs which is what I will probably stay at while I'm continuing chemo for the remainder of 2007.

I have decided to head to UCLA to see a neuro-oncologist just for a second opinion and the hopes of going onto a research study/clinical trial. I was referred to a certain neuro-onc from several different people since he's the top one in the country.... so, as you can imagine, I will be making an appointment to see him. I decided to request all of my pertinent medical records from Cedars-Sinai and will bring them with me when I see that neuro-oncologist. Hopefully I will be put on an Avastin study which seems to be the up and coming drug for GBM subjects.

As you all know, I was having some dull headaches after I started working. So, of course I asked Dr. Yu and Dr. Ahn what the cause could be and they all said it could be eye straining due to being back at a computer all day. So, off to an ophthalmologist I went... My eyes were still the same as they were last October when I saw her. Not a bad thing, huh? But, she did think that the computer screen could cause my eyes to strain so she said I could either just wear glasses, or slightly change my contact lens prescription. So, I think I will just do some days at work with my glasses on since that seems to have helped.

I was also feeling very tired and was wondering if that is what work also was doing to me... That was not the case and if you can believe it... the Singulair that I was taking was giving me the fatigue!! I was taking it in the morning when I should have taken it at bedtime so of course I have switched that! Now I am less tired during the day which is another good thing...

I have completed a proposal to work from home several days per week... I will have to keep you posted on that one. I know I will actually get more work done since I will not be distracted in a cubicle. I will hopefully know if I can do that in a month or so...

I have continued to do yoga and some light rollerblading with the dogs. It feels good for me and I think they just like to run better than walk! Some days I end up doing a little bit of a longer, skate with more hills which is also better for all 3 of us... The latest bit of exercise was golfing with Dad, Jimmy and Charlie (I can call it exercise when I have done it for the first time EVER!)!!! Barbara, I know you must be impressed with that one... If you can believe it, I'm hooked and may have to sign up for golf lessons. I'm a lefty in my opinion when I golf, play hockey, sweep the floor and anything swinging down... figure that one out! We'll have to see what my golf pro has to say...

I had several upcoming events when I wrote the last blog update and of course some have happened already! My dad and brother Jimmy came out to visit me (and see the Red Sox of course). It's nice to hear them say I look great and seem to be 'normal' again :-) We did lots of stuff within the past week such as golfing, Red Sox/Angels game, Reagan Library, cooking lasagna and pulled pork, playing cards and harassing one another. I'll have to say that poor dad was teased by Jimmy and me but it kept us all laughing which is always a good thing! I have to give myself a pat on the back since I won the game of hearts (a card game) four times! They wanted to keep playing so that one of them could win and low and behold, I was the winner for that card game!!! I must have warn an 'eye patch' Jimmy, right? We were all bummed that the Red Sox lost, but it was impressive how many Red Sox fans there were at the Anaheim stadium!!! I will hopefully be seeing them again if the Sox have to do a playoff game with the Angels here in Anaheim...

Jodi will be coming out here to visit the end of this month (about 4 to 5 days). That should be fun since the last few times we've seen one another there was not enough time to just shop, chat, and eat (that's what we obviously have fun doing together)! I'll let you know how that goes...

I will be headed to Deepak Chopra Resort with Antonietta and Paul the week of Labor Day (September 2nd through 7th). They are taking me to a weekly retreat that is called "Soul of Healing" and it sounds like it will be really great for me. It will be right before my next MRI so it'll be nice to relax, meditate, get massaged, supposed to get our colons cleansed (I think I'll blame my chemo for not allowing me to get my colon cleansed...) AND we will get to meet Deepak himself! Should be quite an event so stay tuned on that one... I am thankful that my old CT dog watcher Caryn will be coming to stay at my house to watch Nala, Joey and Radar. She had moved out West to Arizona about 6 months before I headed out here to CA, so it'll be nice for them to see her again. She also went to see Radar when he was at the Briard Rescue so they are obviously still attached to one another. She will bring Radar's favorite Scottie named Sarama with her so they will all have some fun! Hopefully they won't have to get colon cleanses either!!!

I'm sure that I have forgotten to write about something... But since it's already 10 PM it's time to head to bed since I have to take Dad to the airport at 5 AM in the morning. Again, sorry that I took so long to give an update. It's even harder now to spend time chatting on the telephone since most of you are 3 hours ahead of me and by the time I can chat, you're fast asleep...

Love you guys!

Debbie

Friday, July 20, 2007

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

Thursday, July 19, 2007

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

Tuesday, July 03, 2007

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

Monday, June 25, 2007

Deb's Photos from East Coast Swing! Posted 6/25/2007; 10:00 AM E.S.T.






Wednesday, June 13, 2007

Deb's Update: June 13, 2007 7:45 AM PST

Hi all,

It's been a long time since my last update but I know I have seen lots and lots of you back East during my 12 day visit up (so I apologize if I tell you guys the same things again...). I just have to figure out where to begin since there is so much to tell you guys in terms of how I am doing, how my trip was, how my doctor appointments were, the vaccine trial, etc... Here goes:

My last trip to Cedars-Sinai I definitely learned that you really have to prepare yourself for doctor appointment.... what I mean is that you need to bring a novel with you, show up on time, and know what your medication side effects could be/are! The first trip to my new doctor (Immunologist) was a fairly detailed one and I had to speak with the doctor for quite some time, fill out tons of paperwork which included family history, current medication and every autoimmune symptom known to man (if I had them!). But, since my ANA was high, I had to have a ton of other autoimmune lab tests done. So, the Friday before Memorial Day I was headed back to my Immunologist to discuss the new autoimmune lab results to see if I was okay to go onto the vaccine trial with Dr. Yu.

Boy oh boy, was that a long day... I was asked if I could come to the Immunology doctor appointment about an hour early since he wanted to leave early that day (due to the extended weekend...). I also had an appointment with Dr. Yu, Dr. Chu and Anne (the nurse practitioner) to discuss the vaccine trial that afternoon. So, I knew I'd be there a while and even packed myself a lunch since I know I need to eat these days to keep my weight up! Thankfully I brought the new book that Jana sent me, "It's Okay to Miss the Bed on the First Jump" (it's a book about life lessons that John O'Hurley learned from his dogs) and was able to read about 50 pages while I waited AND waited for my Immunologist appointment! I guess I didn't really need to be there an hour earlier since he actually came in to see me over an hour later! Anyway I guess I should give you the medical info and not the frustration stuff, huh? :-)

The detailed ANA results: (for those of you who want to look up this stuff on-line or who are medically smart...) My ANA Titer was 1:1280 when the normal result is <1:40 class="blsp-spelling-error" id="SPELLING_ERROR_4">RO AB (SS-A)-EIA and ANTI-LA AB (SS-B)-EIA. These are the photosensitivity items... Of course this made me wonder why the heck they're high when I don't seem to have a major sun sensitivity or skin sensitivity. So, the immunologist needed me to tell him that one of the side effects that Bactrim DS (the antibiotic that I take prophylaxis for pneumonia) has is sun sensitivity.... okay, he didn't expect that I'd tell him that, but he doesn't know me :-) Of course when I asked him if the result could actually just be from the Bactrim DS, he said "definitely go on a different antibiotic other than Bactrim...".

I'm guessing that my body just decided that it didn't want me to be eligible for the vaccine trial so it made the photosensitivity autoimmune lab be the one that went up the most! But, the immunologist wrote me a approval type note that said that the vaccine trial benefits could outweigh the risk of any of the strongly or weakly positive ANA results. As you can guess, it wasn't what I needed to allow me to go onto the vaccine trial...

So, on to Dr. Yu's office I went with my Immunologist's "note" so that I could have the approval to go onto the vaccine trial. But, in a nutshell, the IRB wouldn't allow me to go onto the trial due to the high ANA and strongly positive photosensitivity lab results... I just think that there is always a reason for something, so I guess that my body and brain just LOVE that Temodar chemotherapy!!! Dr. Yu also thinks that I am doing so well on the Temodar that I don't absolutely need to stop the chemo which is what I would have had to do if I was on the vaccine trial. One other good way to look at it is that I already have the 6 antigens that they would have boosted in my system with the vaccine... so I am just hoping that they are strong enough to keep that Glioblastoma from coming back. Fingers crossed that my immune system will continue to stay strong.

I sure was ready to start the Temodar again but unfortunately I was going to be taking it when I headed back East... So, On May 31st I landed at the Providence airport and took my last day of Cycle 4 chemo. That kind of felt weird to take a poisonous drug in public so of course I did it in the ladies room behind the closed door ;-) But, I seem to feel pretty good during the actual 5 days of the chemo during a cycle. Interestingly enough, I start work again the day I am starting Cycle 5... That is not a concern for me because I am happy to just get back to work and into a work routine again! Since I am supposed to continue the Temodar for the entire year I need to see if I am able to continue working... my guess is that working will actually be good for me! I will keep you posted on that one...

Right before I headed back East I was able to go to lunch with Radar's trainer (or I should probably call her my trainer!). She was thankfully able to see the Radar that is a goof ball and is back to his usual self. It was good to hear that she noticed a change in him. When she knew him, he was in his stressful/I have to protect my mom state... but now he's himself again... that's CONFIRMED! I'm still going to let him tell me when it's time to get another MRI!

My mom picked me up at the airport on May 31st and took me to Dunkin' Donuts upon my request... Of course I had to wait over an hour to eat and drink my "treats" from Dunkin' Donuts... So, off to a wonderful, organic type grocery store to get me some of the food that I've been eating these days while I waited to eat that chocolate covered donut! I was thankful for both the organic food and the trashy donuts covered with chocolate! The way I see it is... I eat what my body tells me it wants/needs to eat :-)

On June 1st my mom and I went to visit my Memere and Pepere (her mother and father), my cousin Jeanne, Uncle David and Auntie Rita (Jeanne's father and mother), and then my Gram's grave stone. So, it was great to see everyone that day although it sure was hot and humid back in Brockton, MA. The neighborhood that I grew up in sure looked different too.... it's interesting to see things that you haven't seen in over 15 years (I'll leave it at that!). All of the visits were great that day but it was a bit emotional for me to have to see the grave stone with Gram's name on it... but that's what I'm guessing made me decide that she needed to have a pretty garden in front of it! So, my mom and I went to get her some new garden stuff to make her area look pretty... I think that's what I needed to accept Gram's passing on... Believe me, I continue to tell her that she's not seeing me up in heaven any time soon so if she want to see me, she is now able to do it whenever and wherever she wants :-)

On June 2nd I had my family/friend party in Marion, MA. It was a beautiful day and lots and lots of wonderful people there, great food and great location! I will try to download some of my pictures from my trip back East but I haven't done it yet... I expected that I'd be exhausted after that party but I was just so happy to see everyone that I was in Cloud 9 (is that even the right phrase to say...? can I blame that on my brain...?). I stayed at my Dad's and Betty's house that weekend and Jim, Marianne, Augie and Leif spent the next few days doing stuff with me which was great. Brunch on Sunday (June 3rd) at a great yacht club and then on Monday (June 4th) we all went to a Flower/Garden museum in Sandwich, MA but unfortunately it was pouring rain that day (but the boys sure did love the puddles that day!). Sunday night, I was able to head over to Pat, Norma, and Rebecca's house with my Uncle Bruce... that was a nice visit but it was a little comical that Pat still had a very funny Land O' Lake butter 'gift' that I gave her years and years ago... I won't get into that detail, but let me just say this : it was something that I made for her and it shouldn't have been made by a kid as young as I was when I made it for her!!!

June 4th (after the museum) it was a dinner night at my Dad's to see Dan, Mary and Logan since they were on a cruise and unable to attend the June 2nd party... I actually took a little nap that day (I think I remember doing that!) since it was rainy and a good nap day! The next morning, I packed for my next State visit... I was off to CT! My Dad and Betty drove me down to the Manning's house which I stayed at from the 5th through the 8th. Lots and lots of lunch and dinner plans during that CT visit so I can't get into tons of details there but just to say one thing: Thank you guys, and I sure did get to eat at all of the restaurants (Cafe NV, Ocean Pizza, Olio and Broken Yoke) since I moved out to CA !!! Thanks to everyone that took me to the food places that I love :-) Amy M and I also headed to the Red Door Salon and Spa to get our manicures and pedicures so that sure was relaxing for me but very fun for us to chat the whole time. I also got to peak at the garden at my old CT house thanks to Larry and Priscilla (my CT neighbors!). I can't wait to see pictures (that I told Larry he would need to take) when those cottage gardens are in bloom!

Since there was a party going to be happening on June 7th at the clubhouse in the Manning's neighborhood Amy and Brian had lots and lots to do the night of the 6th and the day of the 7th... So, off to Foxwoods Casino Joann and I were on the morning of my birthday to play BINGO! That's right, BINGO!!!!!! Neither of us won, but it's always fun to go to BINGO at a casino... I would highly recommend that for all of you CT folks! Amy wasn't able to make it with us since she was doing all of the setting up for the party that night. Again, what a great party that was thrown for me... Lots and lots of friends were there which was great! It's so nice to see people that have been cheering me on for the last 7 months... again, lots of pictures, so I will hopefully be able to at least post a few pictures (hopefully with my birthday hat on!). Al was able to come to the party too at the time that was perfect for dessert and then clean-up....

Al and I were headed to Delaware from the 8th to the 10th to see Jodi and John (Jodi's new husband!) for their party.... Not such a great drive but thankfully Al did the entire drive both down to DE and back to RI... lots and lots of hours to chat in the car but also lots and lots of hours to be sitting around the George Washington Bridge... I'll just leave it at that! We were able to spend time with Jodi and John on the night of the 8th before the party on the 9th... we knew we wouldn't get to spend a ton of time just talking with them on their party day ;-) But, both Al and I got to know John's family which was great... They all have a good sense of humor like John does so now I don't have to wonder how he got it! I can't wait until Jodi and John move to Houston since they will be close to me out here ;-)

One last family dinner at my Mom's house on June 10th since there were some additional family members that were unable to come to the June 2nd party. It was nice to see everyone there as well and of course my mom made the food that I love of hers: Meatballs AND lasagna! Mom had a cold so I actually stayed at Jim and Marianne's house that night... then it was off the Mom's work so that she could bring me to the airport. It sure was a wonderful trip, but it felt good to head home to CA to sleep in my own bed and to see my own family (Nala, Radar and Joe!)... My apologies if I forgot to tell you guys some things, but as you can see, I sure was busy!

So, now I have to re-group and get ready to head back to work in a few weeks! I will continue to update the blog every week or two when I have some things to tell you guys. Your support and positive outlook is always a good thing :-)

Thank you, Thank you for all you guys have done for me during the past few weeks! Again, sorry for what I may have forgotten to write about (see, this is why I should not wait one month to write a blog update!)...

Love Ya, Debbie

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