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
8 comments:
Yo MAMA!!!
I had heard about the Amgen thing - and the same sort of thing is happening at Wyeth (where I just left). I'll see what's happening in the clinical department here at BMS, but Joann Zamparo might know better than me. And speaking of BMS - that's a good abbreviation since you keep talking about your colon cleansing. If you just have to eat herbs, I can perhaps picture it - but I keep getting WAY negative mental pictures of the whole thing. Perhaps you should have a strong cup of that coffee they used to serve at Pfizer Groton..... (smile) The rest of the Deepak deal sounds like something my partner Keri would enjoy. Me, I can't sit still long enough to meditate and would just be pulling pranks on the quietly sitting, breathing, concentrating people. UCLA sounds like a pretty intense GBM place too - isn't it amazing to have to choose between two places that are fabulous instead of two places that really suck?
I can't wait to see the new dog trick. Keep kicking butt.
Love ya Deb!
-Mol
(I recopied this from the last comments section, wanted to make sure molly read it)
Deb,
Are you working Brian too hard? He forgot to turn on the comments post again!
Mollie, colon cleansing is to remove the toxins built up in your body. I bet the toxins in your body are screaming to be removed! It's a holistic approach mind, body(including the colon) spirit approach.
If I'm not mistaken, your a nurse, is all this talk reminding you of your nights working adult med/surg and cleaning out a colon or two?
Deb, glad your sharing news as it comes in. You will make the right decision as in regards to possibly switching to UCLA.
See you in two weeks
Ant
Deb!
Good to see your news....ALL of it....even the colon cleansing part. : ) I am a firm believer in detoxification, particularly in situations such as yours. I can't wait to hear how the Chopra event goes. I am curious to see what they feed you at this event.
On this end, I'll keep my eyes peeled for job opps on the east coast. It seems like in every job I have had in this industry, each company has had a major problems or was undergoing huge organizational change. You are not alone. This is typical. I've worked at 5 different places since MGH, and 2 of them went through multiple major mergers, which eventually forced me to move on. I sat at the same desk for 2 years, and my paycheck came from 4 different places. There was also a huge lay-off at BattelleCRO, my current employer, last December. We still have not recovered, and the morale continues to plummet. Thank God they keep me very busy....with no down time ever. We will probably be in need Project Managers, Clinical people and eventually more Data Managers. I'll keep you in the loop. Maybe you'd like to brush up on Oracle Clinical. That will keep those brain cells in shape.
Sorry I have not been blogging the past couple of weeks......was in a car accident....rear ended by a tractor trailer tow truck.....whiplash.....a real pain....lots of auto body repair and fighting with insurance companies......but I am getting back on track. The car is fixed. It is true that everything happens for a reason. I just know it is so!!!
Keep on trucking!! Hope to talk to you soon.
Sending beacons,
Bea
Holy Evacuation Batman - enough with the colon crap(pun firmly intended!!!).
Deb, whatever floats your boat or rocks your world or empties your gut, right. It's all good (isn't it???)
Barbara
OH, All right. I'll restrain my comments about the colon cleansing crap (thanks BABS). I'm certain it is beneficial, since we're all basically walking chemicals these days anyway. And you're right Ant - I'm probably more toxin than anything else these days. The toxins are likely the only thing keeping me upright. (especially because I'm typically full of s***) In all sincerity, I do appreciate the holistic, naturopathic approach to health, and prefer it to the traditional medication approach. You know me, though - I can't resist an opportunity to make fun of anything - even myself.
I'm also thinking that perhaps Barbara should come out and join the colon cleansing group. Next time, be sure to invite her. (smile)
Debster - I'm glad you're doing so fabulously well, and think that the way you're taking care of body speaks for itself. Just watch out for those "earth shaking moments" that California is offering up - you and I were never all that good at walking on unmoving surfaces....
Love you - think of you often.
-Mol
Hey Deb!
I hope things are still going well out there with you. Are you still walking around on shaky ground out there?? How are you feeling? Is work still indecisive about what they're doing?
Just curious about how things are going. Hope to hear about everything soon!
Donna:)
Deb,
Well, I for one would love to hear how this whole colon cleansing thing makes you feel after.....gotta be better, right? one would think anyway.
I got a little gossip for you, but would have to call you I think to fill you in....Chad Peters is definitely a riot, saw him at my brother's wedding 2 weeks ago...
Hope you're doing GREAT!!!!!! Miss ya.....
Love,
Nikki
I'm all 'cleansed' and relaxed but don't have time to do the next blog update yet... I have to add meditation into my day so I'm sure you can imagine that it's tough to find time to give you an update! Stay tuned... I'll do it this week. Lots to update you on...
Love ya,
Debbie
Post a Comment