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

11 comments:

Anonymous said...

Wear the Eye Patch, Debbie...Wear the Funky Funky Eye Patch!

Anonymous said...

Hi Debbie,
Good to see the update. Nice to know you are having fun things to do that keep you from the updates and not just work. Great news on the MRI!!!! Enjoy your visit with Jodi. Say hi for us. Sounds like your visit with your Dad and Jimmie was a great one. Enjoy your Labor Day vacation!! Take care. We think of you always. Love, Larry and Priscilla

Anonymous said...

Golf huh? I am impressed indeed - it is the all time greatest sport to play. I bet that you are good -with your height, you have a nice big swing plane!! Golf is all mechanics/physics so if you get a good swing going, then the course is your oyster :). All good stuff, Debbie - way to go!!!

Barbara

Anonymous said...

Deb,

Sounds like all Good News!!! You always were good at card games....what's the one we used to play way back at ORR, do you remember? Keep us updated, even if it's just a "quickie" :) we understand that you're getting back into the swing of things and you don't have as much time as you used to. Keep up the great work! Love you & miss you lots.....
Markie's gettin married in 12 days!!!! who would have thought huh?
Love ya,
Nikki

Anonymous said...

Hey Nik,

Didn't we used to play Skat (spelling?).... I'll try to post more often. You are right, if I do it weekly, it shouldn't take me 2 hours. I forgot to tell everyone that the night that I wrote my blog, we had an earthquake which woke Dad and I up!!! He thought it was the dogs jumping on his bed... but, of course not, they were running around the house wondering why the hell it was shaking!

Aaaaah, the days in Southern CA...

Debbie

Anonymous said...

Deb,

You got it....nothin wrong with your memory girlfriend! You were awesome at that game...I remember that! I don't even remember how to play? Maybe next time you should challenge Jimmy to that one....
as for the blog...just give us little tid bits here and there.....that will be enough to keep us going, we gotta take what we can get! :) Take care of yourself first & foremost!!!! Love ya!
Nikki

Anonymous said...

You sound like you're doing absolutely fabulous, dahling. Rollerblading and golf do NOT go with colon cleansing. They are opposites on the Karma spectrum. In fact, I can't really think of anything that goes with colon cleansing. Perhaps that's just the nurse in me, but if you can avoid having anything enter an "exit only" do so. EEEEk. And these are friends of yours suggesting this???? Meditate, massage, all fine. Love that.
I was wondering when you were gonna do the golf thing. I've tricked BABs into playing in a tournament with me, Anita and Joy again this year. Last year we had Darcy instead of Joy, and she and BABs were the only things keeping us out of the loser bracket. Anita and I are merely there for the social aspect (and the beer).
We're getting ready to move again, so with all the chaos, I apologise for not keeping up with blogville as I should have - I try to e-mail, but I'm a very, very bad person.
Oh - and who's doing the David Bowie on here? Funky Funky eye patch, and WHITE BLONDE HAIR, OOOOwwwww.
Love ya Deb,
Mol

Anonymous said...

Great to hear from you Deb, we look forward to reading the updates! Keep 'em coming. We'll be in touch soon,
Love,
Mary, Dan, Logan & Popcorn

Anonymous said...

Great to hear from you, Deb! It sounds like you're doing well and enjoying your free time. God love ya!!
I will definetly respond to your email soon and send those pic's of the girls. I was busy getting ready for Riley's birthday BBQ this past week after returning from my trip to my grandmother's. Can you believe that my baby girl is 1 already???
Take care and blog again soon!
Donna:)

Anonymous said...

Hi Deb,

I am so glad you are doing great! Keep those positive thoughts going and taking care of yourself. I LOVE the picture of us on the couch at your B-day party. I am printing out that one! Take care.

Love Kristin C.

Anonymous said...

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.

And about the job front, I believe Mega Millions is $177 million this week, it's about time you get some luck your way, why not play. Then you can do the cobra thing, and donate money to cure GBM.

See you in two weeks.
Ant