Tuesday, February 27, 2007

Deb's Update: February 27, 2007 7:30 AM PST

Okay guys, sorry for the delay in the update! Today is Day 1 for Cycle 1... yup, for today through Saturday I am taking more than 2 times the amount of chemo that I was taking during the radiation. Of course I have no idea how it will go since I just took it a minute or two ago! I figure that I may as well sit still, write emails or blog updates since I cannot eat for an hour or so... It's my relaxing time, look at it that way :-)

Interestingly enough, I had to take many, many more of my Temodar capsules than I used to take a month ago... thank God I had some left over because I wasn't taking them on the weekends. In a nutshell, okay, maybe NOT a nutshell, I haven't received the higher dose capsules yet!!! Yup, you guessed it, it's an ExpressScripts/Curascripts issue! I'll try to just tell you a quick summary of the last two weeks dealing with them... My med onc doctor sent in the Rxs to ExpressScripts two weeks ago so that I would have plenty of time to get the Temodar and Kytril before I had to take it. After all, I knew I needed the anti-nausea pills and a much higher dose..... So, I decided to follow my 'order' on the Express Scripts website. Huh, I only saw the Kytril. I know I love that and NEED that, but I figured I would call them (about a week before I needed the meds) to see if the Temodar was just not listed on-line. Talked to two people there a few days apart and the second person finally told me that I should have had my doc fax that to CuraScripts instead of ExpressScripts. Did I know that? NOPE. Did they ever tell me that the first day I talked to them because it was missing on the website? NOPE.

Okay, sorry for this long story, but here is the rest of it. I finally decided to talk to CuraScripts to see when I would get that Temodar that I so desperately wanted.... imagine that!? They had a week to go before I needed my new Temodar capsules. BUT, they said they had to ship by Thursday of last week so that I could have it in time to take it on Monday (of course this was not the real dosing date, but I figured I may get it on time if I told them that!). So, they of course had my doctor's office fax it to them again (on last Tuesday) and AGAIN on Thursday since they didn't get it for some reason. Guess what? THEY NEVER GOT IT according to them!!! I had a major, major drama call on Friday night since I didn't get the Temodar. I think I may be able to go into acting, ask my mom, she'll tell you! Okay, so in a nutshell, I still don't have the Temodar capsules but they should be here today by noon time per CuraScripts. I am guessing that I will have to make a call this afternoon.... stay tuned.

So, as you can see, there are lots of things that are keeping my brain working: ExpressScripts/Curascripts (in case you all need to know some day, it's the SAME company), the tons and tons of short term and long term disability details, and of course the Insurance company's 'stalling' and not paying any of the medical bills yet. Fun, isn't it? It's a busy, busy thing to keep up on.... no wonder I have to stay out on disability until I get this all running/functioning smoothly! Stay tuned.

Okay, let's talk about something positive........ I still have a scab!!!!!!!!! I'm hoping that it stays put at least until after I go to Cedars-Sinai to see Dr. Yu (my surgeon) on March 6th... I hope you guys keep your fingers crossed on that one and add that to your blessing if you don't mind :-)

Another positive thing is that my radiation oncologist thinks my hair will start to grow back in a month or so!!! YIPPEE.... I can handle another 4 weeks for the bald spots! I had my follow-up appointment yesterday and he was so impressed at how good the skin looked and since the redness and colored skin has vanished, he said the hair should grow back sooner than usual. I guess that some people's skin looks damaged for longer.... I'm excited that mine is doing great! I am wondering if it's because I followed the Hydrocortisone rules majorly (you can ask all my poor friends who were here and had to put it on my scalp while the hair was falling off...... they had to rub that stuff on my scalp 2 times per day...YUCK!). But, I do follow the rules when I am told what I should or shouldn't do :-) I think that's just like my Gram since that is what she did during her entire life... that's why she lived to be 94 years old! I'm sure she's happy to see me following the rules!!!

The pets are all happy, happy, happy to have their mom home and doing well! Of course my Radar decides that he needs to sniff the left side of my head (where my scar is) and he just does it quick and then runs out of the room to play! I'm guessing that he is just making sure that he doesn't smell the tumor anymore but he has to check it out. So, if he starts licking the area and starts behaving protective I am definitely going to get an updated MRI! One of my Briard friends said that no wonder his name is perfect: RADAR...He can probably find anything and everything!!! Of course he had a slightly tough few days after being home for a week (vomiting and diarrhea). But, we went to the vet, he's on the mend and the vet's guess is that he may have had a stomach virus from AZ and it was dormant until he came home: different food, different yard, different exercise, etc... He's okay now and is loving the rice, chicken, yogurt meals, but that'll change shortly...

I am doing just as much cooking for his meals as I am my own! Speaking of cooking, Margaret Rushing and I have been doing a lot of cooking together. She is helping me cook majorly healthy meals that will be good for my immune system. Thankfully Karin G. had sent me a wonderful book that has recipes in it so stay tuned if my immune system continues to be great and continues to make me feel great. Again, I'm following Gram's rules: 'you need to pay attention to the vitamins and foods that you need to eat when it will be good for your health'... :-)

Obviously my concern is losing weight so I will be paying close attention to that since I really don't want to be any skinnier as you can imagine! I did get a nutritionist name from my med onc doctor so I will probably go and see them in a month or so.... JUST to make sure I'm eating right!

Mom and her friend Helen were here this past weekend. They were on their way to Hawaii and stayed for a day and a half before heading to the island. It was a great visit and of course my mom had to do some home improvement stuff: she painted the vanity in the bathroom! She's unbelievable... she loves that stuff. I'm guessing that she is who I got my fun home improvement interest from! Of course she needed to check out the Doggie Dooley system to make sure I was using it "correctly". It's a majorly interesting item, I'll just keep it at that :-) If you're a dog person and want to hear more about it, just call me or send me an email... I definitely don't need to get into those details for everyone! Just one thing I'll say is that it's a good NOT SMELLY thing!!! Mom and Helen will be back for a day and a half on their way home from HI also so stay tuned.... I'm guessing that my vanity will be finished (painting) after their next visit! Oh, and another thing: Helen likes the Element!.... see, once you ride in it, you'd like it too :-)

Okay, it's been an hour and a half since I took the chemo so its time to eat! I am feeling good even though I had a much higher dose this morning! YIPPEE!!! Maybe it was fun for me to write the blog update and my body didn't even think about the high Temodar dose! I'll try to write as the week goes on just to let you guys know how it is going during Cycle 1!

Love Ya,
Debbie

13 comments:

Renée said...

Hi Debbie, I stumbled onto your blog and felt compelled to let you know you'll be in my thoughts. Best wishes for a quick recovery and regrowth of your beautiful hair!

Anonymous said...

Deb,

I'm glad all is going well for you. I hope Cycle 1 isn't going to be bad for you...so far so good, right!!! My sis and family just came back from Hawaii!! Fun for your mom & Helen. Glad all the kids are doing well...cookin healthy huh? You always were pretty healthy I would say! Keep strong and positive. Love ya lots.
Love,
Nikki

Anonymous said...

Just a quick update! Still no TEMODAR at my house today.... guess what CuraScripts did? Sent it to 567 Paige Lane instead of 657..... I corrected the address to them yesterday when I called. Now it seems as though I may have to drive to FedEx to go and get the chemotherapy! Isn't that unbelievable... I just thought you should know that.

Obviously I am feeling high energy still today chemo or no chemo! Time to breathe, relax, meditate... aaaahhhh, uuummmmmmm.....

Stay tuned!!!
Debbie

Anonymous said...

So no Temodar yet!!!I thought after your Acadamy Award performance of last Friday you would have gotten it by now.SHAME ON CURASCRIPTS!Helen & I arrived here on time and have a beautiful view of the marina & ocean.Going on Duck Tour tomorrow and show poolside on Friday.Helen says hello and she does love the Element.Love you lots and wish you could have come with us for vacation,maybe next time....LOVE Mom

Anonymous said...

Obviously Helen is just delerious from the long flight to the big island. She can't REALLY love the Element. OH, I know - She's just being nice. That's it. She's different from me...

Now, I was going to count the number of times you said "nutshell" in that first couple of paragraphs, but the storyline was just too irritating. What we need to do is send Jessica Mills and myself to "Express"(yeah right) scripts, aka Curawhatever. Perhaps we could each go on back to back spoof job interviews or something to give them some pain.

So, about this Doggie Dooley thingy... You DO realize, of course, that most people bury wads of cash in old canning jars in their back yard, or things like that. THINGS THEY VALUE HIGHLY. What exactly does this say about you? Perhaps we should refer to that Astrohoohaa website you sent me to that overwhelmed me with information.

That scab will definitely be there when you see Dr Yu. No worries. It still needs a name, and I'm working on it.

Radar absolutely rocks. He is very in tune to your noggin. How's your famous Funky Swingin working out with him? What did Joey think of his return?

And how about an update on your dreams? Anything juicy yet? I've had some way bizarre ones lately, or did that stuff happen when I was awake? Hard to tell...

I'm SOOO glad you're good so far on Cycle 1. Kick its butt.
Love ya man!
-Mol

Anonymous said...

Mollie,I got your email now I know what you look like and you are welcome to come by anytime you are in Rhode Island.I thik your spirit keeps Debbie on a positive note and does the same for me.I know you love Deb just the way you write even thou you pick on her alot.wE ONLY PICK ON THE ONES WE LOVE.I agree with you totally that Deb will win this battle...Love Mom
P.S.Helen was not being nice nor was she delirious she doeslove the ELEMENT...Later

Anonymous said...

Oh no, first she fools cousin Jeanne and now Debbie's Mom - everyone be very afraid! Do not succumb to the entity known as Mollie - the cost shall be very dear - nothing short of your total embarassment will do - I speak as one who has paid that price and am not sure if my bill has been totally settled - this may incur additional payments..... Also, please do not invite Mollie to RI -I also live there!

Deb, did Curashits come thru with your meds yet? What royal screw ups.

Hope that this cycle goes as smoothly as your first couple of hours seem to have gone.

I will update you after today's adventure!

Barbara

Anonymous said...

Baris has not even begun to pay...

I never need an invitation to RI - I lived there for several years myself. I could turn up there any time - at your local grocer, your favorite bar, golf course, or just standing on your front lawn...

Be afraid, be VERY afraid.
MuHHHAAAAAhAAAHAAAAAA....

Love ya Deb!
Baris - watch it.
-Mol

Anonymous said...

Mollie, I hope you can ask Curascripts to 'watch it'.... they are annoying, that's for sure. Maybe they should be afraid of YOU too!

Barbara, I did finally get the chemo delivered on Tuesday afternoon (thank God I called onlly 15 minutes after it was attempted to be delivered by FedEx to 567 Paige Lane!)... but low and behold it was only 1 month worth which I should have gotten at a local pharmacy down the street! It would have been the same price, and I would not have had to go through their screw up! Live and learn...

Debbie

Anonymous said...

Good God in Heaven, you've had quite the go with these people! Although it sucks, I'm glad to know that it's not just East coast people who have to deal with idiots like Curascripts. I've been having quite the hard time getting people to do what they're supposed to do when they're supposed to do it in regards to Peter's Chron's. It's a real pain in the ass to deal with. (No pun intended!)
I hope you're doing well with all your med's this week. Let us know how it's going. Keep throwing your punches and you will surely kick this!
Love ya!
Donna:)

Anonymous said...

Deb,
Is it just me or is the March astrology zone gemini horoscope kind of terrifying?

Anonymous said...

Deb,
Is it just me or is the March astrology zone gemini horoscope kind of terrifying?

Anonymous said...

It looks like March is a tough month for everyone when you look at the horoscope!