Randi's journey with melanoma

At Peace

2011-12-30T11:17:00.000-08:00

We are sad to inform everyone that our beloved Randi died peacefully on the morning of 12/29/2011. She was able to enjoy Christmas at home with her family and entered hospice care two days later. From her most recent posts, you can read that she was struggling to cope with more and more complications. She was stubborn, determined and a fighter with attitude to the very end.
We will all miss her dearly and hope that her posts gave you the encouragement and support she welcomed from others coping with this relentless disease. Always have hope, always stay strong and never give up!

Fridays

2011-12-16T12:29:00.000-08:00

CHRISTMAS

WELL-SPENT THE WEEK LEARNING HOW TO CHANGE LINES AND NUTRITION BAGS BUT WE HAVE IT ALL PRETTY MUCH FIGURED OUT NOW. DON'T HAVE TO CARRY ALL THIS STUFF TO BATHROOM NOW-WE HAVE ALL THAT FIGURED OUT TOO.

NURSE CAME OUT A COUPLE OF TIMES TO DRAW BLOOD AND CHANGE PICK LINE DRESSING.

HAD TO BE TAKEN TO DR OBARAS OFFICE YESTERDAY BECAUSE OF SWELLING AND PAIN. THAT HAS NEVER HAPPENED TO ME BEFORE. WENT THROUGH THE NIGHT IN SO MUCH PAIN THAT KATIE HAD TIM TAKE ME DOWN THERE AND THEY GAVE ME MORE MEDS FOR SWELLING THEN KATIE GAVE ME THIS BIG DEMEROL SHOT BUT IT DID HELP THE REST OF THE DAY
THEY HAD TO CHANGE SOME OTHER MEDS ALSO-SO I AM TRYING TO SIP WATER AND MAYBE A FEW BITES OF APPLESAUCE OF ORANGES BUT I'M TRYING TO HAVE SOMETHING-FEW SPOONFULS OF WHATEVER

NOTHING TO EXCITING--MOSTLY ABOUT ALL THIS STUFF
AT LEAST I'M HOME FOR NOW-KNOCK ON WOOD
HOPEFULLY THE NEW PAIN STUFF WILL WORK-

BYE...........:)

NOODLE IN THE TREE-HAH

NEW DEVELOPMENTS

2011-12-10T11:36:00.000-08:00

IS THAT NOODLE?

WELL HAD TO HAVE A PICK LINE INSERTED AT SUNRISE YESTERDAY
NEED FLUIDS AND NUTRITION-SO HOME HEALTH CARE CAME OUT AND GAVE ME AND TIM OUR FIRST LESSON
I WILL HAVE FLUIDS WITH VITAMINS THEN EASE INTO SOME NUTRITION

THE DRS WANT ME TO BE STRONG ENOUGH TO TAKE MY NEXT DOSE OF YERVOY WHEN THE TIME COMES AND THIS IS THE WAY TO DO IT-

SO IM HOOKED UP TO A BAG THAT YOU CAN CARRY THAT DELIVERS THE FLUIDS OVER 24 HOURS AT A TIME

THIS HAS BEEN A CRAZY WEEK BUT I CAN ALREADY FEELTHE DIFFERENCE WITH FLUIDS.
POOR TIM HAD TO GET UP ALL NIGHT WITH ME TO GET THE FULL BAG TO THE BATHROOM
SO LOOKS LIKE I HAVE MY WEEKEND CUT OUT FOR ME
PEE-PEE-PEE!!
WELL MORE FUN DEALING WITH IV LINES

RANDI

Still here

2011-12-08T12:28:00.000-08:00

SPENCER AT CHRISTMAS

I KNOW I HAVENT BLOGGED BUT HAD A ROUGH COUPLE OF WEEKS AND HAVENT FELT LIKE IT REALLY

I HAVE BEEN TAKEN OFF ZELBORAF BECAUSE THE TUMORS ARE GROWING IN THE ABDOMEN

THIS PAST MONDAY I STARTED MY FIRST INFUSION OF YERVOY BECAUSE THATS WHAT HAMID AND OBARA THOUGHT WOULD BE THE BEST THING.

EVERY 3 WEEKS I WILL HAVE ANOTHER INFUSION 4 IN ALL-THIS WAS THE ORIGINAL DRUG I WANTED BUT THEY NEEDED TO STOP THE TRAIN AND FAST BACK THEN. I HAVENT REALLY BEEN EATING OR DRINKING SO YESTERDAY I HAD TO GO BACK IN FOR 2 HOURS OF FLUIDS WITH POTASSIUM AND MAGNESIUM AND HAVE TO GO BACK TMRW TO SEE HOW ALL BY LEVELS ARE.

YERVOY HAS A SUCCESS RATE BUT IT TAKES A WHILE TO STIMULATE EVERYTHING AND I CAN HAVE THE TREATMENT WHEN ON STEROIDS ESPECIALLY SINCE IT WASNT THAT HIGH OF A DOSE. THIS WAS THE ORIGINAL DRUG I WANTED BUT THEY HAD TO STOP THE DISEASE FASTER THAN IT WOULD OF STARTED WORKING. AND I WAS UNDER THE IMPRESSION I HAD TO BE OFF ALL THE STEROID-I WAS WRONG.

SO I HAVE SPENT MOST OF THE WEEK IN AN INFUSION CHAIR-YAYE
BEEN TRYING TO EAT A LITTLE BUT THATS JUST NOT HAPPENING BUT DRINKING A LITTLE WITH ICE AND SOME ORANGES HELP BECAUSE WE CAN SLICE THE ORANGES AND IT IS EASIER FOR ME TO EAT THE JUICE. WHO WOULD OF THOUGHT. ORANGES ARE MY FRIEND NOW.

THANK YOU TO EVERYONE WHO HAS LEFT MSGS IT IS APPRECIATED SOMETIMES I WAS JUST TO TIRED TO ANSWER-I WILL TRY AND KEEP EVERYONE A LITTLE MORE UPDATED IF I FEEL UP TO IT -MY HAIR IS GROWING BACK-WHAT A PAIN BUT ITS BEEN EASIER AS FAR A UPKEEP.

TALK TO YOU SOON
RANDI

BYE................................................

THANKSGIVING UPDATES

2011-11-22T11:11:00.000-08:00

BACK FROM LA

RAINED ALL THE WAY TO LA WITH FOG AND FREEZING ON SUNDAY-
WOKE UP MONDAY AND IT WAS SUNNY THANK GOD
DR HAMID SAID MY BLOOD WORK LOOKED BETTER THAN WHEN THEY TOOK THE LAST SCANS AT SUNRISE ABOUT 3 WEEKS AGO

I HAD BEEN OFF THE ZELBORAF FOR 3 WEEKS THEN AND ONE OF MY ABDOMINAL FRIENDS WAS GROWING

IT LOOKS LIKE HOPEFULLY MY BOIMARKERS FOR THE TUMOR HAS STABILIZED A BIT NOW AND CROSS YOUR FINGERS THE TUMOR HAS STOPPED GROWING OR SLOWED DOWN BECAUSE IT IS BY MY STOMACH AND BETWEEN THE RADIATION AND NO SALIVA AND THE GROWTH I DIDN'T WANT TO EAT-YUCK! SO DR HAMID GRILLED TIM ABOUT WHAT I WAS ACTUALLY EATING. I AM EATING A LITTLE MORE BUT IT REALLY NEEDS TO BE PARTICULAR THINGS BECAUSE MY SALIVA IS NOT ALWAYS COOPERATING WITH ME.
SO DR HAMID GAVE ME PAPERS TO BRING BACK WITH US ABOUT ANOTHER TRIAL IN CASE I NEED IT I WONT HAVE TO DRIVE DOWN THERE JUST TO PICK UP AND WANTS US BACK CHRISTMAS WEEK-YAYE
I WILL HAVE ALL MY TESTS NEXT WEEK HERE BUT THEY WILL NEED TO BE SENT TO LA ALSO.
HE IS VERY STRAIGHT FORWARD WITH US SOMETIMES THAT IS HARD BUT IT IS COMPLIMENTARY TO THE WAY DR OBARA IS WITH ME AND SO CARING.
DR HAMID TOLD US ABOUT MEETING DR OBARA AND DISCUSSING OPTIONS WITH HIM ABOUT MY CARE BUT WE WILL SEE IF THE ZELBORAF HAS STOPPED WORKING FIRST. I AM NOT GETTING OFF AGAIN BECAUSE IT SEEMED LIKE EVERYTHING STARTED HAPPENING AND NOT FOR THE BETTER. YERVOY WOULD TAKE AT LEAST 3 MONTHS TO START WORKING AND DR HAMID DOES NOT FEEL THAT IS A GOOD OPTION BESIDES I CANT DO THAT TREATMENT BECAUSE OF THE STEROIDS I'M WEENING OFF ANYWAY. SO AT LEAST WE HAVE SOME ANSWERS FROM DR HAMID AND MAYBE A PLAN WITH ANOTHER DRUG THAT BACKS UP ZELBORAF BUT LOOKS LIKE MORE SIDE EFFECTS. I THINK ITS WAIT AND SEE UNTIL END OF NEXT WEEK.

SO WE HAD BEAUTIFUL WEATHER DRIVING BACK AND I HAVE TO SAY IT WAS NICE BEING GONE OUT OF THE HOUSE FOR AWHILE SOMEWHERE BESIDES GOING TO THAT RADIATION TREATMENT. WE GOT TO ORDER ROOM SERVICE AND SOUP AND THINGS I COULD EAT ALTHOUGH NOT ALOT IT WAS A CHANGE (YOU KNOW I DON'T EAT SOUP OUT OF A CAN -YUCK) YES GIRLS I HAVEN'T CHANGED THAT MUCH WHEN IT COMES TO MY FOOD! I EVEN HAVE TIM CHECKING DATES ON THINGS NOW SPENCE AND TIM ARE NEUROTIC ABOUT THAT. I AM YELLING IN THE KITCHEN-WHATS THE DATE? HAH

WENT DOWN TO 2 1/2 MG OF STEROID A DAY AND BOY THAT MUCH IS A DIFFERENCE-STILL GETS FEET SWOLLEN A LITTLE BUT YOU WIND UP FEELING BETTER AFTER A WEEK-BUT JITTERY UNTIL YOU GET USED TO IT.
I WAS UPSET THIS WEEK BECAUSE A BLOG I FOLLOW-SMELANOMA-LOST HIS BATTLE AND HE HAD BEEN BATTLING A LONG TIME AND WAS SO POSITIVE. WHEN THEY STARTED HIM ON ZELBORAF THEY WERE ONLY GIVING HIM HALF THE DOSE BY ACCIDENT AND THE DISEASE PROGRESSED-IT MIGHT HAVE ANYWAY BUT IS SEEMED SO SUDDEN AND I WAS DEPRESSED FOR A COUPLE OF DAYS. HIS BLOG WAS ONE OF THE BEST IVE SEEN AND IVE BEEN FOLLOWING IT FOR A COUPLE OF YEARS-SO SAD WE NEED A CURE NOW.

THANKSGIVING-MAKE THIS ONE COUNT! I WILL BE WITH MY SON AND THE PEOPLE WHO CARE ABOUT ME MOST -(TIM, JOE AND THE WHOLE FAMILY AND HOPEFULLY I WILL BE ABLE TO SOMETHING BECAUSE CHRISSY AND BONNIE MAKE A BIG SPREAD EVERY THANKSGIVING! YUMMY

SO FOR NOW I AM HANGING IN AND TRYING TO STAY POSITIVE AT LEAST UNTIL I CAN START EATING A LITTLE MORE WOULD BE NICE-HAH WHAT A DIFFERENCE WHEN YOU CANT TASTE AND YOU WANT TO-OF COURSE I CAN THINK OF A MILLION THINGS I WOULD LIKE TO EAT NOW AND YOU WOULD THINK I WOULD BE LOSING WEIGHT BUT IM NOT -REALLY
STUPID STEROIDS

SO TO EVERYONE HAVE A WONDERFUL THANKSGIVING AND KNOW HOW LUCKY YOU ARE TO HAVE THE PEOPLE YOU LOVE IN YOUR LIFE AROUND YOU THIS TIME OF YEAR.

RANDI

WHO'S SO CUTE

SPENCE IN JR HIGH ONE THANKSGIVING!....

New Drug Treats Advanced Melanoma

2011-11-18T17:06:00.000-08:00

New Drug Treats Advanced Melanoma

BACK TO LA

2011-11-17T09:37:00.000-08:00

BACK TO LA

BACK TO LA NEXT WEEK.

YES, I KNOW ITS THANKSGIVING BUT I NEED TO FOLLOW UP WITH DR HAMID AND HE HAS AN OPENING AT THE BEGINNING OF WEEK.

DR OBARA HAD ME SIGN THE YERVOY PAPERS JUST IN CASE I NEED IT AND WAS WAITING FOR DR HAMID TO CALL HIM BACK THE OTHER DAY. HE ALSO GAVE ME A SLOWER WEEN OFF OF THE STEROID. I'M ONLY ON 3MG AND AM GOING DOWN TO 2 1/2 IN A COUPLE OF DAYS BUT WANTS ME TO DO IT FOR 2 WEEKS.--BUT THAT IS 1 1/2MG IN 3 WEEKS AND THIS STEROID IS SO POTENT HE WANTS TO WATCH ME THIS TIME SO AND I AM FOLLOWING HIS INSTRUCTIONS TO A T THIS TIME.

SCANS WILL BE RIGHT AFTER THANKSGIVING AND I AM NOT LOOKING FORWARD TO IT AT ALL.

SPENCER'S PAP IS HERE SO HE WILL BE BUSY FOR A COUPLE OF WEEKS WITH ALL THE FAMILY BUT HE LOVES THAT. AND ONCE AGAIN HE WILL HAVE A FEW DAYS OFF SCHOOL AS USUAL.
HOPEFULLY I CAN EAT-SINCE MY SALIVA IS LIMITED BUT SEEMS TO BE JUST A LITTLE BETTER NOW. NOTHING IS EASY ANYMORE.

SO A TRIP TO LA IS IN ORDER-WE WILL TRY AND DRIVE BACK RIGHT AFTER APPT. LITTLE HECTIC BUT HATE STAYING MORE THAN A NIGHT DOWN THERE IF I DON'T HAVE TO ANYMORE.--SO WE WILL SEE IF DR HAMID HAS ANYTHING DIFFERENT TO SAY THAN HERE. MORE ON THAT WHEN I GET BACK.

WHO HAS THE LIFE?........

4 DAY WEEKEND-GEEZ

2011-11-13T09:32:00.000-08:00

SPENCE HAS MORE HAIR
THAN ME!

SO, FINALLY GETTING SOME ENERGY BACK, BUT EVERY TIME I SAY THAT I GET TIRED AGAIN.

4 DAY WEEKEND FOR THE KIDS BIG SURPRISE-THEY ALWAYS ADD A STAFF DEVELOPMENT DAY TO A HOLIDAY AND THESE KIDS DON'T GO TO SCHOOL-PLUS SPENCE HAD BEEN SICK SO HE HAD SO MUCH TO MAKE UP AND JOE KEPT UP ON IT -YAYE
CAUSE I WASN'T FEELING TO GOOD.

SO I GOT A WIG BUT I FEEL LIKE EVERYONE IS LOOKING AT ME BUT ITS REALLY CUTE AND KINDA BLONDE. YOU HAVE TO GET USED TO IT LITTLE BY LITTLE. MY HAIR IS STILL FALLING OUT BY THE ROOTS-THIS SUCKS! YOU SHAVE IT AND STILL THE HAIR IS FALLING OUT AND TO MAKE MATTERS WORSE MY TOP EYELASHES FELL OUT-SHIT! THAT IS SO IRRITATING AND THE SHORT FEW THAT ARE LEFT ARE STABBING ME-HAH
TIM'S MOM KNITTED ME A SOFT LITTLE CUTE BEANIE FOR MY COLD BALD HEAD THAT IS PERFECT--YOU DON'T REALIZE HOW SMALL A BALD HEAD IS AND COLD IN THE MORNING AND AT NITE. PLUS THE SCALP GETS IRRITATED AND YOU HAVE TO LOTION OR OIL ALL THE TIME-THIS IS THE CRAZINESS WE HAVE TO GO THROUGH.

NOW ALSO I HAVE VERY LITTLE SALIVA FROM THE RADIATION SO I CANT EAT ANY BREADS AND HAVE TO HAVE SOUPS OR SOMETHING THAT HAS LIQUID WHEN I EAT. YOU CANT JUST DRINK WATER WITH THE FOOD THAT DOESN'T WORK EITHER I FOUND SO I'M TRYING TO FIND STUFF TO EAT NOW AND ITS SO LIMITED CAUSE SWEET THINGS
DON'T REGISTER WITH MY TASTE BUDS EITHER RIGHT NOW. SO MANY SIDE EFFECTS AND THEY JUST APPEAR. EATING IS SO UNAPPEALING RIGHT NOW AND EVEN TEXTURE IS A PROBLEM-YUCK LOOKS LIKE SOUP WILL ALMOST BE A STAPLE OR CEREAL WITH SOY MILK WORKED THE OTHER MORNING BUT EVEN OATMEAL IS TO DRY TO EAT.

YOU NEVER EXPECT TO DEAL WITH STUFF LIKE THIS AND ITS CRAZY
ONE THING GETS BETTER AND ANOTHER GETS WORSE!
ANYWAY THIS IS THE FUN STUFF

WAITING TO GET THROUGH THE WEEKEND AND GO TO DR'S AGAIN

LONG NIGHT AT CORYS!
BYE.....................

BLONDE OR BRUNETTE?

2011-11-08T11:44:00.000-08:00

THIS IS NOODLES

SO ITS BEEN A LONG WEEKEND AND SPENCER FINALLY WENT BACK TO SCHOOL TODAY.
HEATER WENT OUT AND WAS FIXED YESTERDAY-IT WAS FREEZING BUT I HAD BOUGHT A NICE SPACE HEATER LAST YEAR BY SOME MIRACLE SO IT GOT US THROUGH.

WENT TO DRS TODAY AND LOTS OF QUESTIONS

NEXT SCANS WILL BE SOON AND I HAVE BEEN BACK ON ZELBORAF FOR 6 DAYS NOW.

BY SOME STROKE OF LUCK DR OBARA WENT TO A CONFERENCE IN DENVER THIS WEEKEND AND MET DR HAMID-REALLY-THEY TALKED ABOUT MY CASE AND THEY WERE FAXING SCANS FROM SUNRISE TO DR HAMID AS I LEFT SO HE WOULD HAVE EVERYTHING AT THE ANGELES CLINIC ALSO -HE IS NOT IN UNTIL NEXT WEEK BUT I THOUGHT THIS WAS VERY INTERESTING.

DR OBARA TOLD ME WHY THEY HAD TO TAKE ME OFF THE DRUG FOR RADIATION. AND HOPEFULLY IT WILL START WORKING AGAIN AND MAKE ME FEEL A LITTLE BETTER. I THINK HE SAID THERE WAS NOT ENOUGH KNOWN ABOUT USING THE DRUG DURING RADIATION AND COULD CAUSE BLEEDING BUT I REALLY AM NOT SURE I WAS TO BUSY TRYING TO THINK OF ANOTHER QUESTION TO ASK HIM THIS MORNING.
I AM HAVING ALOT OF WEAKNESS IN MY LEGS SO WE ARE LOWERING THE STEROID AGAIN THIS WEEK -WE WOULD HAVE ANYWAY TO TRY AND GET ME OFF AGAIN. I AM ONLY TAKING IT TWICE A DAY 2MG BUT HAD TO DURING RADIATION. NOW IF THEY CAN GET ME OFF WITHOUT ANY FACIAL SEIZURES WOULD BE NICE. THEY HAVE BEEN LOWERING IT EVERY WEEK NOW.
TRYING TO FIND A FEW HATS AND A WIG-MY HEAD IS FREEZING!!--IM TRYING TO DECIDE IF I SHOULD BE A BLONDE OR BRUNETTE AGAIN-HAH DONT REALLY CARE BUT THE DR ACTUALLY GIVES YOU A PRESCRIPTION FOR A WIG-HOW GREAT-I THOUGHT THAT WAS GOOD!

BETTER DAYS N HAIRCOLOR

SEE YA...............

BUSY WEEK!

2011-11-04T15:28:00.000-07:00

CLEAN NOODLES!!

SO I STARTED OUT THIS WEEK WITH MY LAST RADIATION TREATMENT-FINALLY THE FATIGUE HAS SUBSIDED.
STARTED BACK UP MY DRUG THAT I HAD TO STOP FOR BRAIN RADIATION. AND I AM HOPING THAT EVERYTHING GOES OKAY WITH THAT.

MY HAND IS WORKING AGAIN SO HOPEFULLY THE RADIATION WILL LEAVE MY HAND OFFICIALLY WORKING AGAIN.FOR NOW-STILL HARD TO TYPE BUT ITS GOOD PRACTICE FOR THE HAND.
SPENCER HAS BEEN HOME SICK FOR A COUPLE OF DAYS SO IVE BEEN BUSY WITH OTHER THINGS.
MY HAIR FINALLY WAS A NO SHOW AND FELL OUT. SPENCER SAYS MOM YOU CAN TOTALLY PULL THAT LOOK OFF--HAH ITS ACTUALLY EASIER TO TAKE CARE OF BUT MY HEAD IS FREEZING NOW-EVERYONE ASKS ME IF I HAVE BREAST CANCER NOW -I GUESS THATS PRETTY STANDARD WITH THE BALD GIRLS.
THINK ABOUT IT WHEN YOU SEE SOMEONE=A FEMALE BALD ISNT THAT WHAT YOU THINK FIRST?
HAVING SOME OTHER INTERNAL STUFF GOING ON BUT BEEN TO DR OBARA THIS WEEK AND HAVE TO GO EVERY WEEK NOW-HES BEEN GREAT
NOT SURE WHEN IM GONNA GET BACK TO LA AND HAVE TO WAIT TO HAVE BRAIN SCANS AGAIN WHEN ITS TIME-HAD TO MANY HICCUPS THE LAST 2 WEEKS TO LEAVE RIGHT NOW-AND WOULDNT FEEL COMFORTABLE BEING SO FAR FROM HOME UNTIL IM STABLE AND ABLE TO TOLERATE THE RIDE AGAIN. SO RIGHT NOW WE ARE HANGING OUT AT HOME-BORRINGG

FOR NOW TIM AND I WILL TRY NOT TO HAVE A DATE AT SUNRISE THIS WEEKEND :)

BYEEE.......

SPENCERS B-DAY

2011-10-29T10:03:00.000-07:00

17 -NEW IPOD TOUCH

SPENCE IS OFFICIALLY 17!
HAD A NICE TIME-HE BASICALLY HUNG OUT N ATE SAUSAGE SANDWICHES N CAKE.

I THINK HE WAS HAPPY!

HOW ABOUT THIS-IN THE MIDDLE OF THE DAY THE PLUMBERS NEXT DOOR TOLD US WE COULDNT FLUSH FOR 2 HOURS---HAH-REALLY

WAITING FOR LAST RADIATION ON MONDAY-HOPEFULLY
THE AMOUNT OF CHELATION BUILDS UP N MAKES YOU FATIGUED-PASS OUT NO WARNING
HAVENT HAD MUCH OF AN APPETITE EXCEPT FOR ONE CRAZY ASS DAY LAST WEEK
COULDNT EVEN EAT B-DAY CAKE----REALLY-CMON
CUT MY DECADRON DOWN TO TWICE A DAY TILL WEDNESDAY NOW THAT HELPS WITH THE TASTE BUDS- HOPEFULLY WHEN WE CUT IT ON WED MY LITTLE FRIENDLY METS WILL COOPERATE-I SENT EACH LITTLE MET OFF TO GOD TO KEEP FOR HIMSELF
AND SENT THE BOTHERSOM SMALL TUMOR WITH A FRIEND! SOUNDS WEIRD-HUH
CAN SQUEEZE MY LEFT HAND NOW-THATS SOME PROGRESS-SURE ITS RADIATION-I CAN FLIP U OFF NOW-HA-STILL CANT GRAB
SUPPOSED TO START ZELBORAF AGAIN ON WED NOW THAT RADIATION IS DONE IT CAUSES BLEEDING ISSUES SO THEY MAKE YOU STOP! SCARRYY

YUMMY

SO CUTE GUYS!!

TOUCHED BY MY FRIEND

2011-10-26T13:05:00.000-07:00

Debbie Flaig

Ok so we all know how i never get on facebook! But today I decided to post a little note! As I am getting ready for work, I think god i don't want to go to work! A few weeks ago my daughter Ash posted a comment about how everyone wants or needs something. But like she said there are more important things in life! One being my best friend fighting for her life! She is the strongest, bravest fighter... i know! she has always been someone i look up to. So today when you are all complaining about, work, school. wanting a new cell phone, car whatever it may be, remember all this is is us being selfish! We all need to get our priorities straight! Randi I want you to know that I love you and my family loves you and prays for you everday! You keep fighting! I love you Deb! See you soon!

LOVE YOU DEB-ME!

BRAIN METS POOF GO AWAY

2011-10-25T09:14:00.000-07:00

I WANT MORE

POOF-GO AWAY!!!!
THATS WHAT I THINK DURING RADIATION EVERYDAY-IF ALL MY FRIENDS IN HEAVEN WOULD JUST TAKE ONE BACK TO GOD THERE WONT BE ANY LEFT FOR ME!

OKAY-I ATE MY WAY THROUGH YESTERDAY!!!! SOMEDAYS I CAN EAT N SOMETIMES TOAST MAKES ME GAG!!!! ITS THE SMELL- TIMS MOM FED US CHICKEN PARM N ITS KINDA FUN HAVIN SOMEONE CUT UP ALL MY MORSELS (POOOR TIM) THANKS FOR THE PARM I LOVE IT! JOES MOM DROPPED OFF BIG TUB OF CHICKEN SOUP-YUMMY-ALLOVER MY CHIN-HAH. SPENCERS BDAY IS FRIDAY N WE R HAVING BUNDT (DONT READ THIS SPENCE-HAH) NO RED VELVET-WAS EATING DURING 1ST SEIZURE-N TO THINK ALL I WANTED WAS CAKE THAT NITE-GOTTA RIDE TO HOSPITAL INSTEAD! THINK WE HAVE SOME KINDA PRESENT FOR SPENCE TOO!! HOPE IM UP TO THIS ON FRIDAY-TOES CROSSED--
OH YEAH-YESTERDAYS FOOD-LOTS OF FRUIT-IN N OUT BURGER-BURGER ONLY ON BUN-SMALL BANANA CREME PIE BLIZZARD--REALLY,REALLY-OH YEAH I TOOK TIM FOR THIS MAGICAL EATING ADVENTURE WITH ME--HAHA
OH YEAH-N WAITING FOR MY HAIR TO FALL OUT-YAYE-MY THERAPIST ASKED YESTERDAY-BUZZ CUT #3 TO START? ANY SUGGESTIONS FOR CUTE GIRL BEANIES?

I REALLY NEED TO COOK
LOOK HOW SKINNY.......

can u even imagine

2011-10-22T09:37:00.000-07:00

old hair n smile

REALLY CAN YOU IMAGINE REALLY HAVING TO WEAR THAT MASK ON HALLOWEEN-IRONIC? SO 5 DOWN N FIVE MORE WITH FATIGUE HELL-IS THIS ALL WORTH IT? IS THE TREATMENT WORSE THAN THE DISEASE? I AM WAITING PATIENTLY TO START MY BRAF DRUG ZELBORAF AS SOON AS THE LAST TREATMENT IS DONE SO IT DOESNT INTERFERE WITH RADIATION-NOT TAKING IT HAS LEFT ME ON PINS N NEEDLES-BUT OBVIOUSLY IT DECIDED NOT TO HELP THE BRAIN ANYWAY. JOINT PAIN SUCKS TODAY FROM LOWERING OF STEROID-ALWAYS HAPPENS-LIKE ARTHRITIS-LOTS OF PAIN MEDS N KONA COFFEE THIS MORNING-HAH -WAITING FOR IT TO KICK IN IS A BITCH THOUGH! IM GONNA HAVE A STOMACH ACHE FOR SURE!!

PERFECT!

SMILE!
BYE....

Radiation Really?

2011-10-21T08:48:00.000-07:00

5 down 5 to go

10 treatments of hell-thank u to everyone trying to check on me -to much fatigue-thank u for food since I only have one useful hand-big help-easy to scoop or cut Really-what an experience from hell!getting dressed is for 2 year olds! Back to more fun today-Ihope someone is watching over me through these treatments-I usually talk to Adam and John through the treatment and ask them if they are there with me-i would like to hope so! See you guys again todayfor the lovely taste of full brain radiation treatments. New experiences my pretties-

fun times!!!

Halloween Costume for me!

2011-10-16T12:02:00.000-07:00

NEW HALLOWEEN MASK

SO THIS WILL B MY NEW OUTFIT FOR THE NEXT COUPLE OF WEEKS. BACK TO THE CYBERKNIFE CTR TO TRY AND SHRINK THE REMAINING ORIGINAL SMALL TUMOR THAT SEEMS TO BE GIVING ME SOME SWELLING ISSUES-MY LEFT HAND DECIDED TO STOP COOPERATING WITH ME ABOUT MONDAY THIS WEEK-TRY DOING EVERYTHING WITH 1 HAND! WHAT A JOKE-TRY ONCE JUST MAKING A PIECE OF TOAST-NO REALLY TRY IT! AT LEAST I GOT TO EAT SOME YUMMY HOSPITAL FOOD FOR A COUPLE OF DAYS! AND IT WAS ALREADY PREPARED--THANK GOD! WHAT A MESS--I GOT TO SEE ALL MY FAVORITE DR'S-FACIAL SEIZURES AND IV MEDS-TO MESSY FOR ME! DONT EXPECT BLOGGING OR TEXTING FOR AWHILE-EVEN MESSIER! THIS IS THE SHORT PRETTY VERSION FOR NOW-

SPENCER HANGING WITH ME AFTER LONG
NIGHT AT FRIGHTDOME!
BYE.......

6 Month Canciversary date/the return

2011-10-14T07:11:00.000-07:00

Typical of these last 6 months

Doesn't really seem like 6months have passed snce that day on April 12th-but it has! So many things have happened both funny n sad bad n good but youdeal with it n move on.lots of good people have come into my life n other people have left not knowing how to handle there own insecurities about many things. That's life!
Tim and I are having some extra dates with the Docs this week as we
t ry and get a few things to work better in my favor.Between going back to LA and here it never ends and now Dr Hamid is in charge of the entire
melanoma clinic in LA . Everything is not always easy and there has been many hiccups in the road but one day at a time seems to be the way to go.
You know its fall Frightdome is all the boys are talking about this week and Halloween is coming up with Spencers Birthday to follow. $40 just to get into frightdome this year-scary

more later
computer acting out-hah

Bye............

Hair Hell

2011-10-11T08:33:00.000-07:00

Better hair days!

So I'm gonna try and get my hair done today-there are short pieces-long pieces and in between. Because of the surgeries and cyberknife my hair is hell and lets not even talk about the color! I have had to use store bought color and that is the worst!! So today my hair girl is going to try and perform a small miracle-I'm not asking for alot just a little. I cannot do anything with this straw hair.

So yesterday I was told I was officially terminated from my job. I could not return so now I move on to dealing with LTD and Social Security-cant wait. Believe me people I would much rather be in the middle of our horse racing tournament this week than dealing with all my little friends. People think not working would be great-yeah wrong. Its crazy to think i have been home 6 months already. This is what cancer does-it stops you in your tracks-throws you into some foreign medical world-takes away your independence that you have known-most people picture cancer as a tumor you are in a fight with but metastatic disease is much different-people aren't running marathons and wearing ribbons-REALLY PEOPLE-but people really don't want to talk about that. Its better to talk about it than not. You can say to someone I don't know what to say.
California passed a law not allowing teenagers under 18 to use tanning beds. I will bet you 10 years from now tanning beds and tans will be looked at like smoking-skin cancer will be in the news everyday you watch.
I don't know about you but I am still grossed out about the Del Taco rat. No more surprise burritos for me!!

Mr Ham

What?-no mustache

Back from Santa Monica

2011-10-08T07:20:00.000-07:00

Del Taco Rat

Whatever you do don't eat at the Del Taco off of the 605 Baldwin Park. I opened the door to get out and a giant rat was there next to the car!! Gross!! People were eating in there and I had to go to the bathroom and had to get a token from the girl to open the door-that should have been my first clue!! Ewwwe It was so disgusting and it was huge! This picture does not do it justice!

It poured all the way to LA and poured all day in LA. So many tests and gloomy weather. Plus we left at 5:30am cuz we thought it would be a good idea-just to much in one day though. All day with tests and no food till noon plus all the driving-yuck.
The next day was sunny though at least all the rain was gone and on its way to Vegas.
Had to go to the Dermatologist and he took 4 biopsies. He is the best of all doctors all rolled up into the one Doc you would want to see all the time. He told me what he thought of everything he cut off truthfully and I wish he was here in Vegas. He said if he has to take more from one he will do it there and stitch me up. Honestly he is great.
All my other tests were up and down this time. Looks like my body has leveled a bit most of my little friends are just sitting there and that is disappointing but one of my friends in my upper left abdomen looks a bit bigger I don't really like that friend at all! Like I said before the standard for this drug is between 6-8 months so every 8 weeks you are on pins and needles waiting for results. Its a gamble all the time. Dr Hamid really wants me off the steroid so we might be able to try Yervoy in the future if needed and there might be some tricks to do that soon but I cannot be on the steroid to try treatment. So I am going to talk to some other Docs to see what we can do to get me off without facial seizures that it might have caused. Everything is about swelling isn't that fun. He said he knows this is my first roadblock now but this is something they deal with all the time and with all the clinical trials. So I will continue to take the BRAF drug because it does seem to have stabilized my body for the most part but it doesn't look like anything else is getting smaller :(
He wants me back in 2 weeks so more driving is in the future. I also have to see Dr Obara next week and I am sure he will have more to say but he has been great. I know he wants to keep me here and try a clinical trial but they have so little experience here that I will opt for LA first if I stop the Zelboraf in then near future but for now I will continue the drug. I can only do so much. But for now I will still be taking this drug and watching my friends to make sure they are staying stable. So that's all I know for now. And that is enough!

All Grown Up!
Bye.............................

Moody Monday

2011-10-03T18:46:00.000-07:00

Cancer Research

So its Monday again and I made it through the weekend-wooh.
I was weaning myself off of the steroid and got down to 1 1/4mg then BAM!

Had one of those facial seizures out of nowhere. Luckily I had the medicine that goes under your tongue and it stopped right away. Then I had to up the steroid back to 2mg. So it looks like I am going to have to stay there right now and My Doc told me that before. He said 2mg seems to be the threshold for that. So that was all the excitement I could take this weekend. That just made me tired the rest of the weekend and I slept Sunday away. And of course today is the perfect day to just sleep.
I'm off to LA this week for a slew of tests. They were all set up for the wrong day and luckily the MRI people called today. The scheduler at the Angeles Clinic set up everything for the wrong day but I had everything in an e-mail. So they had to fix everything today and hopefully everything will be right when I get to Santa Monica. Weather is gonna be cold down there!! Its only supposed to be 60 sweatshirt weather for sure.

So you see my ribbon is pink and black thanks to another website. Maybe the ribbon should be changed for good since melanoma is the biggest killer of women under 35 not breast cancer. Maybe JUST one of those NFL teams could wear a little more black! How much money was spent on pink uniforms and shoes yesterday. That's alot of money to bring attention to cancer!

So we are off to LA-try and keep updated sometime this week

READY FOR BREAKFAST-YUM

HOW CUTE AM I?????

THATS A MOUTHFUL!
BYE.......................

Pink October-What about Black

2011-10-01T09:18:00.000-07:00

This is definitely not pretty like
pink is.

Yes, I have a little bit of pink envy this month. Everywhere you look is pink. God only knows where all the profits really go. No one really seems to know. Does it go directly to research NO. So all these products promise profits go to Susan G Komen but more or less its not directly to research unfortunately. You always see these smiling women on magazines with all kinds of pink things you can buy. Walk back into the Chemo room at Comprehensive Cancer Center and you will see this is not the case. Maybe if you catch it really early but what about if you don't. They say this can be a manageable disease but how many different chemo regimens do you think you can have and if you think it can't happen to you think again. Side effects from cancer treatments-hah. The doctors don't like to tell you about them! People would refuse treatment. Losing your hair is the least of your worries. One of the biggest side effect is lymphedema when they remove you lymph nodes from under your armpits. Your arm and hand look like sausages because there is nowhere for the fluid to go now and you have to wear this thing on your arm to keep the swelling down. This also happened to my leg and no one told me. They think you might not have the surgery if you knew your leg might look like an elephant for the rest of your life. Luckily mine wasn't to bad but that is not the case with alot of lymph node surgeries especially when they remove your breasts. So they put these happy faces to all this pink but it is crap.
Unfortunately melanoma has been given a black ribbon-hah. That equates with mourning and death nice job whoever assigned that to us. People don't think it is serious because there are 2 other skin cancer that can be cut out but not melanoma!!!
I got a call from ING long term disability department. Let me tell you how uninformed this woman was about this disease. She equated everything to breast cancer. She asked me if I was coming from treatment-she had no idea what she was talking about. Like after treatments were finished you could go to rehabilitation and go back to work-REALLY! But some people who have been close to me have actually thought that too. It doesn't work like that with stage 4 metastatic melanoma-You don't cure it and go back to work! Then this lady asked me if I had a hobby like knitting to take up my time-REALLY~I said lady I have been working as an executive for 25 years when do you think I had time to knit after 6 days a week 10 hours a day with a teenager!! I said do you know anything about melanoma? I doubt she did-she was actually pretty uninformed when it came to this cancer. She went through all the regular questions then informed me I would have to file with Social Security Disability first and they had a legal team to help me-Oh geez thanks. You see they pay what social security doesn't and you have to be approved by ING first then social security. It takes at least 6 months she said but everything is retroactive. I told her bullshit. I know it takes longer than that. They try and make it like oh don't worry. So long term disability is a joke no matter who it is with because this is the way the system works and it is already backlogged with people filing. But lets throw some more people into the system so people who really need this wait 5 years to get any money. So you pay into this system but good luck getting it back out there is always a catch. This is the way long term works so suck it up pretty much. If you don't have any money saved your screwed because they don't care and your gonna have to go through the system whether you like it or not. So much for the money they have been taking out of your check every month-hah
So maybe in 10 years we will see a black ribbon somewhere when all these tanning bed babies start making the dermatologists rich and the incidence of this terrible disease skyrocket. This is what the doctors are predicting. We will see.
Now I am gonna go learn how to knit!

YUMMMM

Hey-who's there?

Whining on Wednesday

2011-09-28T07:39:00.000-07:00

No moon face!!

So yesterday was the day from hell! Headache from hell started in the morning and just got worse. Most likely was from decreasing the steroid but I have only had a couple bad ones like that from a decrease and usually its because I made a mistake not taking enough.
So I slept on and off most of the day and that helped alot.
Finally had to get up and go to Doc's at 3:00 and that was no picnic either.
I am so sore can barely move but at least the headache had subsided or I wasn't going anywhere.
It wasn't very crowded and Dr Obara came right in (miracle) he went over all my blood work and said my white platelets were high this time probably from the decadron-just like everything else that is happening to me this drug is horrible.
All the swelling in my feet and ankles had gone down though and that is a big plus. These last 2 weeks are gonna be hell getting off the meds I can just tell. Every joint hurts and it all sucks.
I received a nice note from a girl in Santa Monica getting ready to go in for her lymph node surgery this week. She said how she wished she never tanned and read my blog. Its funny you don't know how many people read your blog but hopefully it has helped someone and I have received such nice comments from people who contact me. I hope her surgery goes well. Fingers crossed.
Thank you to Tim's mom who sent over pasta and garlic bread. It was great yesterday especially with the Dr's appointments being late.
Spencer was sick on Monday and had to stay home from school so I have been busy watching him and making sure he is okay now. Looks like a cold nothing to bad.
Well on to the fun day of muscle soreness ahead gotta get these bones moving and take a couple of naps today looks like its on the list!

Laptop dazed

Lookin good kid
Bye.....................

Monday again

2011-09-26T07:47:00.000-07:00

Its cancer

Just another Monday trying to figure out if my feet are gonna be swollen again. It looks like the left one is okay today and the right one still puffy. Your ankles and the top of your feet look like little piggy sausages but went down another 1/4mg yesterday so hopefully that will help. Every little change does something even if its worse.
More doctors appts this week. Disability papers to fill out and fun stuff like that.
Not far to go on steroid. I want to be ready for the next clinical trial if need arises. Being completely off the steroid is ideal.

Spencer and i went to see Moneyball. Kinda slow had no get up and go. We both thought it would be better.
Gotta get through this week then back to LA for those fun scans and doctors appts. down there. Its gonna be a long week next week. Still gotta go back to dermatologist-
Don't forget you still need sunscreen even though it's getting a little cooler. Telling your kids oh your brown as a berry IS NOT A GOOD THING-IT IS NOT HEALTHY! I have actually heard this uttered out of someones mouth even after everything they have seen me go through. Total ignorance. I can post the beautiful pictures of my surgery scars maybe that will wake someone up. Tanning is not healthy. Anyway you look at it especially if you have kids. It is not just a mole on your skin it goes down below your skin and spreads. Your skin is your biggest organ-do you know that. So that is how it can travel and then it is one of the most aggressive cancers even more that pancreatic. Ive said it before just because you necessarily don't lose your hair doesn't mean your body isn't being ravaged. Please don't tan and use sunscreen. This is so preventable but you have to be vigilant and you can't think It won''t happen to me cause it most certainly can.

I see these people going into tanning places still and think they have no idea what they are doing. They are just thinking it won''t happen to them. Is all you have to do is know one person with this horrible cancer to know you don't want it.

Anyway hoping I can walk around better today=usually better in the morning anyway.
Deb came over yesterday and brought me one of those organizers that fit in your purse where you can just pull it out to switch purses and the whole insert comes out. It is great. Thanks. She also got her hair cut shorter in back and a little longer in front Really cute. Our usual meeting a Starbucks had to go on hold because my feet didn't want to cooperate so she just came to the house. Mr Noodles missed her anyway. He just loves her and rubs his whole face all over hers-never seen anything like it. Its hysterical.
Okay-enough ranting-just a little update going on.

HEY-YOU KNOW THIS GUY?

SEE YA LATER
BYE.................

Fridays at home

2011-09-23T08:42:00.000-07:00

MORE FOOD FOR HUNGRY GUYS!

Well Chicken Mojito with rice and tortillas for dinner-yummy. This is so good. Simmers in a green sauce all day and we put them on tortillas or rice with some cheese on top and of course chips and salsa.

Okay-this salsa from Trader Joe's=its a tomatillo salsa but its red is the best!! Went in to get more and they had 1 bottle in the whole store. It was bought out. It is pretty popular and so good. I'm just saying Camille if your reading this you could hide a couple of bottles for me!!-hah The guy at the checkout said they might get a shipment when I was there but I said I won't be back until next week.

So I went to the Neurologist yesterday and it was very uneventful! He said I didn't have to come back for a year. Thank God. The only thing he does is write a prescription for the Keppra so I don't need to see him all the time especially since I see all the other doc's. I asked him if I could fly or would my head explode and he said I could fly he didn't see any reason why I couldn't. He said if I had a seizure tell them to land-REALLY I never had a full seizure just a facial one because of the cyberknife and they weren't giving me enough steroid to start. That's how this whole thing started with the Decadron again.

So I can barely move today because of the steroid and my ankles and feet are a little swollen again!
I had to start taking the Aladactone water pill again to help-geez! This sucks. I can barely move because my muscles are so sore and now I have a little swelling going on. Both of these are normal for coming off the steroid because it is an anti-inflammatory but it feels like somebody beat the crap out of me! I'm not kidding. So I think me and the Noodle are just going to hang out till Spencer gets home and I can whine to Tim all day.
So I think I will be stuck at home today-till I feel a little better and feet don't hurt.

Second helping-He can eat!!

Noodles trying to get in on the action!!

Wednesday's

2011-09-21T09:26:00.000-07:00

Porcini Mushroom & Veal Ragu
Yummy...Whole Wheat Pasta

Dinner was a hit last night!!

Everyone having several helpings. Different kind of sauce all day in crock pot yum! So sore this was the way to go. I made this sauce before and it was so good but it was a few months ago. It really turns out good! Lots of hungry guys lurking around at night.

So sore can barely move this week. Down to 1 3/4mg of steroid and oh so feeling it last couple of days. It effects your major muscles and they are so sore. You also feel the pressure changes and that takes a couple of days to adjust. Every 1/4 of mg has a its own side effects. So everyone has been helping because it is hard to even get up now. Swelling and soreness. Hand cramping is gone now there is new stuff! So just been hanging around cooking easy stuff mainly because everyone is always looking for food. Hard to sleep so sore at night -geez this is fun stuff!! Hopefully none of you will have to experience steroid use but some of you might. Just remember all the cool side effects from this drug. And unless you have taken it is very hard to understand and most people listen but not really. Remember this blog. Most people who get cancer have to take it with chemo -
Alright-new side effects to report in next couple of days-can't even guess whats next.
Spencer is such a big help-especially before Tim gets home. It's so nice to have him home with me at 1:15 now.

Very weird not working-couldn't stand more than 1/2 hour then I would be toast. Looked for volunteer work but I need to be able to move around a little more first. So maybe if I am feeling up to it another month. Can't really walk right now anyway small challenges to conquer. Called the assistance league who gives clothes to kids in school who don't have them. The let the kids pick out 2 outfits so they will fit it and what a good feeling to do something like that. So I was put in touch with them. Let you know what happens. But, they have chapters everywhere and Las Vegas was hit especially hard. It would be nice to see the smile of the kids who get made fun of because you know how kids can be.

Anyway-Here is Spencer looking cool!!

Spencer and his Mountain Dew Glasses!
Teenagers think they look cool--he does

Weekend hours w/Spence

2011-09-19T07:06:00.000-07:00

Spencer on Saturday
We slept all day

“You can shower a child with presents or money, but what do they really mean, compared to the most valuable gift of all – your time? Vacations and special events are nice, but so often the best moments are spontaneous ones. Being there. Every moment you spend with your child could be the one that really matters.”
– Tim Russert, former host of NBC’s Meet the Press and author of Wisdom of our Fathers.

Beautifully said.

Spent the weekend or Saturday all day with Spencer. First we ate then we literally laid on the couch for 2 hours. Tried to make egg in the holes for breakfast-yum. Of course he vacuumed and steam mopped and did little things for me but I was so sore and he was so tired we just stayed in and slept on the couches all day. It was so nice for a change. He is so funny-I ask him if he is embarrassed to go out with me and he says why-you don't look any different not to me. He could care less. Tim was upstairs in the apartment watching soccer for 8 hours I think-hah. He was also cleaning all day cuz my knees and body weren't cooperating from this steroid. So the guys pretty much did everything while the Queen did pretty much nothing. sorry- Pretty sore-Taking only the lasix helps if I take it later in the day i am not that sore its weird but as soon as I take it all hell breaks loose. If I stop taking it My knees hurt so bad I cant get up. So Dr Obara says I probably need to take it till Decadrons done if I can get that far. Other people have swollen feet and ankles coming off of it and joint pain. One day I didn't take lasix till 4pm and couldn't walk at 3pm down the hall. But now that I'm down to 2mg a day I don't think it will be that bad? Who knows. It takes 2 days to recover from every 1/4 mg drop of this steroid and then you have to do it again in 3 or 4 days again hopefully=brutal. Ears popping, joints hurt, swelling, moon and belly-oh and neck bloating lovely. Moon face going down for sure but it feels like your pressurized or on a plane half the time. And the headache sometime when you drop is not fun. It doesn't last all day but lingers sometimes not all the time. I think because I am getting so low fatigue and the headache are common. Seeing the Neurologist this week but he doesn't really talk about the steroid maybe the Keppra. This is not fun and I hope I can stay off of this when I'm done. The doctor is watching and waiting.
It has been almost four months taking the BRAF or Zelboraf now. That is hard to believe. I am willing it to keep working now everyday.
Thank god all the new shows are coming on and summer TV is over yuck-oh and movies too. When is the last time you saw a really good movie-not this summer!!
Working on long term Disability today. This oughta be tons of fun. The runaround is already on. People scrambling to create job descriptions for me after 6 months of being gone. As of 9/15 they were creating one for ING the insurance company-so I am keeping track of all this so I have records. Just one big hassle for anyone who gets sick but it helps pay for insurance and Zelboraf. If they approve it.
hah-oh yeah there is a catch-
Anyway on to today-

Spencer sleeping all day!

The Noodle
Bye...................

Fearless Friday

2011-09-16T17:04:00.000-07:00

FRIDAY NIGHT-SPENCER ON
THE MOVE

Nothing much been happening but everyday stuff.
High School work-you can tell school is back in. Everything is trying to have an order to it. Lots of papers and money for this class or that class. Dinner then do it again at 6am.
We are trying to keep track of Spence. It is a little easier now that kids have cell phones. Lots of chores if you want money for the weekend.

Went to see Contagion with Tim in Imax. Not so great and actually a little depressing. Such a good cast but just uneventful. We sat in the theater and we were supposed to be in the theater across from where we were. So finally Tim went to see why the movie wasn't starting well it wasn't gonna start-geez. We made it over to the right theater before it started.
So I guess its official. Dr O' Day who pioneered ipi at the Angeles Clinic is gone but no one knows where. My friend in LA is trying to find out where he is. 1st they said he was on a personal leave in June but never returned. His patients are so upset. His bedside manner is very different then Dr Hamid down there. He was instrumental in getting the last 2 studies to have these important melanoma drugs approved. So it should be interesting to find out what is going on. I heard it was personal he had to be burnt out. He was a lead investigator for the 1st drug approved for melanoma in 13 years and he was in Santa Monica.
Have to go back down to LA Oct 5,6,7 for scans and to be released after 4 month study. Will go back to Dermatologist and hopefully things won't be so chaotic as the last day I was there when they found out Dr O' Day wouldn't be coming back.
Anyway we are going to go to the famous El Cholo in LA while we are there. We have been wanting to go there at least I hope we are.
Have to go see Neurologist next week. Haven't seen him in a few months maybe he can lower the Keppra finally.
We are back at the Courtyard Marriott because the Doubletree was so bad last time. Wow-room was dirty and hotel service not as good. If you book far enough out you can usually get the right rate well sometimes but it was horrible last time. Those sleep number beds are cheap with little motors and nowhere to sit in room but one chair. Who cares about the cookie they give you. hah
Just dealing with Dr's, insurance,disability,teenagers,meds,traveling,steroids,no sleep, and all kinda other stuff us patients have to deal with everyday. Without my loyal peeps around it would be hard but they make it easier!

Spencer n Corys baby they had to take
care of last year-how do u think they did?

Thats Trivitts with Tim it looks like

Santa Monica

Guess Who?
Geez Mr Noodles!!............

How things change

2011-09-14T07:49:00.000-07:00

ADAM

Its hard to believe a whole year has passed. So many things have happened since this sad day. Some good -some bad. We will only be celebrating his life today not his death. You know that is the way he would have wanted it. There have been so many coincidence's surrounding Adams passing for me-way to many to for it to be just coincidental. I won't go into it but you hear these stories all the time-well if you don't believe you should. I am still here and that is certainly a miracle! Look at some of the stories from this past week of 9/11. I couldn't believe some of the experiences people had after a loved ones passing you know they were there with them. I could blog on about this but lets remember his unique personality and the way he could make you laugh along with his sharp wit. xoxo

Went to Dr Obara yesterday-as always busy, busy. Got to drop one of my water pills. The lasix alone is working so no more water pill. It was creating low sodium and raising by blood pressure but without it I'm fine. Should be able to get rid of all the lasix soon he said-can't wait. Still have to go back to Santa Monica in a few weeks for all my final scans for the study and Dermatologist. I think we will be down there little longer this time unless we leave at 5am and we might.

Pouring out-Gotta make a High School run!

Steroid down to 2 1/4 mg total-not long now hopefully and I will be off it all together. That is Dr Obaras goal and mine. Makes me a little tired but only the 1st day. Always have some side effect the first day like joint pain-hips were brutal this time. Hopefully it will stay on the mild side.

JANENE=WORK IT GIRL

TIM IN HIS SPARE TIME!

BYE...GOTTA GO SCHOOL AND ACT LIKE I LIKE IT
HEY BOBBY FLAY DIDNT FINISH SCHOOL

How things change! Girls 5 years ago

2011-09-12T09:24:00.000-07:00

HEY
WHO'S THAT-WE LOOK
SO YOUNG!

Seriously-we look so young.
What year is this girls-I say 2006 during one of the contests
We used to have so much fun doing this, then it just became a grind!
Sorry Deb-I know you will be doing it again in the fall without us.

Deb-remember the HPWS that we had heart attacks and was trying to figure out in the dark in the morning if the payouts were right because of the CBS reports? OMG- never been so stressed out. I cruised right past Starbucks that morning and you just kept saying were fired!

We worked so hard during those contests but did have alot of fun! 12 hour days and 7 days plus Sunday contest really did get long but it was fun with us 3 even though we worked so hard. Even Tom who I didn't have a picture of was always there to run contest cards-I do miss those days. Tom the host!

Not much going on today-have some appointments this week. I did have low sodium that they think was effecting my blood pressure so I have to find out about that this week. I think with the lasix and water pill I was drinking to much water-I guess you lose to much sodium just the opposite of what you would think. My bottom number for blood pressure was 90 and its never that high. I thought I just drank to much coffee in LA when I usually drink half caffeine here.
Gotta see Dr Obara this week so I will find out. Like I said my sodium shouldn't be under 134 and its 127.

Have to see the neurologist next week. It's been a few months since I saw him. Maybe he can start lowering the Keppra soon. Nice guy-he was in the emergency room the day I was admitted.
Happier day today!!

HAH-RICK HELPING-
DEBS WORK HUSBAND-OOPS!

SCULPTURES ON PARK AVE IN MARCH
BEAUTIFUL-SO COOL

SOCCER STARTED

GOODBYE..................................

Zelboraf still being tested in Canada

2011-09-10T06:25:00.000-07:00

News for Canada on September 9, 2011

http://blogs.theprovince.com/2011/09/09/new-skin-cancer-treatment/

Back from Santa Monica!

2011-09-09T20:09:00.000-07:00

TIM BEING SILLY

Back from Santa Monica again.

Much to hectic this time!!

Went to Dermatologist and he froze all kinda stuff off that is from study drug or new drug Zelboraf. People get this they were mostly warts but look like skin tags and are not dark. Damn that hurt though...It felt more like he was burning them off. He is great and I will see him every time I go back to LA. He said he has never ever has he seen a drug like this. You are taking 8 pills a day with no side effects-well some-like skin tags and sun sensitivity but instead of poisoning your body and killing everything you are targeting something individual in everyone-nothing like any other melanoma trial. He knew I would be feeling better because of what he has seen. He is amazed. Have to work on getting off the rest of this steroid now for next appt down there in case I need a combined study-goal 1 for next 4 weeks!!
He is also going to do 4 biopsys now or in 4 weeks when the trial is over and I don't need approval from Genentech to do this or Angeles Clinic. Technically I still am taking another 28 day supply under the expanded study and have to keep my logs but will be released next month. But that is okay because I still got another 28 supply free of the BRAF or Zelboraf. So as long as it keeps working that is okay. Going to the LA dermatologist is much better since their was no Dermatologist involved in Las Vegas and they never worked with this drug and will have to learn what to look for and read the studies. I was told it would take about 6 months for the Las Vegas derms to even work with it. NO studies in LV for BRAF just like before.
We went to the Beverly Hills office 1st on Wednesday and found out that we were supposed to be at the Santa Monica office-REALLY. The scheduler forgot to tell us from Angeles Clinic. Then we rush through that and sit for 2 2/1 hours at the Angeles Clinic because they were so busy waiting. I think it was the worst appt yet by far except the 1st. Unbelievable!!! We were so burnt out I passed out for an hour back at the hotel. After eating Wahoos of course!!
Like I told the Dermatologist. There is no Melanoma specialist is Las Vegas anymore.GONE-NV Cancer Institute was a big bust here and had to lay the best people off or they just left to go to better centers out of town and the Dr. at Comprehensive Cancer Center is a researcher but 1 for the city isn't enough. I told him there is 1 Melanoma Surgeon for a city of 2 Million People and he was overwhelmed 6 years ago-geez can't imagine now. Anyway just rambling about the level of care here-luckily I have my Oncologist and his nurse. Check out http://www.melancholynoma.wordpress.com/ he lives in Canada and they don't have the drug up there it since it doesn't help everyone and is a targeted drug and if you don't have the gene sure its to expensive for their health care system they would have to pay for it I believe and have enrolled 10-20 people for studies just like UK and some others. in US 600 patients were enrolled and then an expanded study. Been talking to him e-mail for awhile. Can you say hello Obama Care 2014. Already heard this from 2 doctors here that they wont be accepting people without private insurance once it kicks in so good luck. The best doctors in the world and Surgeons are here in the US. In 1942 socialized medicine might have worked but our population (well google it if you think your so smart)there will be no incentive to become a doctor soon here.
See how many people will be thrown into a public system from then till now. They will never develop drugs like these for people like me then heard it straight from a Corporate Benefits Guy and they are weighing just paying the tax for the company in 2014. This makes me so mad because if you needed the drug would you say it cost to much. If it gives you an extra 9 months with your son you won't take it? Right. I had to go and find a study but people don't have that luxury in alot of other countries believe me I have seen so many people go in the last 6 months that didn't have the gene or are in UK i talk to. So sad Tim and I have cried many times because of it. okay to depressing today. Got way off my schedule and have to spend a couple days getting back on!

Okay we have had it today!

see ya tomorrow......................

OFF TO LA THIS WEEK

2011-09-06T16:57:00.000-07:00

CHICKEN ENCHILADAS-YUM

Yum-chicken enchiladas for dinner

Off to Santa Monica this week again. Hopefully I can set up appts more like every 5 weeks but we will see

Can't wait for car ride this time
Been pretty much layed up from soreness from steroid and can't do much right now.
Can't take any more Tylenol and not allowed to take ibuprofen because steroid does the same thing but so sore because of it. Doctor says pain meds and lasix are my best friends till i feel better.

Tim and Spencer have been helping with everything well except enchiladas-so i am just trying to make it to car ride. Mornings are okay it's nights just like everything else that's a killer. So layed up in afternoons right now but still able to get around just sore as hell.
6pm
All of this is hopefully steroid related that's what I was told. Just as I thought moon face looked a little better another side effect as usual. Every 1mg drop seems to do something to me! But I will get through it people. Lots of pillows in car I guess this time and early lasix so i don't pee all the way to LA-hah.

I have 2 appts on same day so I need to feel better! I don't have time for this. Well i guess all i have is time right now. It's been almost 5 months since I worked but it seems like yesterday. I can't believe all this time went by already-even Tim was like it went so fast but I guess we were dealing with so much at one time. So once again I was hoping to do the beach dinner thing-and who knows if I can! Umami Burger has a parking lot though-Have scaled back so much on food now that steroid is lower and doesn't hurt my stomach. Just coffee at 6am and oatmeal. Greek yogurt blueberry at 10 or 11am.. More steroid at 1:30 with lunch-probably more yogurt at 3:30 or 4pm and something with at 6pm small. Then steroid again at 9:30pm with yogurt. The Fage yogurt is good with 2.5gr fat and low calories. Have Joe hooked on it and Tim eats it too. Looks like I can eat with Zelboraf now. So only food restriction with steroid-just have to take Zelboraf at 8am and 8pm now. So hopefully I can wean off night dose of steroid at 9:30pm and won't have to stay up and eat well Dr Obara says we will see. At least he didn't put me on predisone to wean-that was a smart move-he felt i don't tolerate some of those drugs well. That's the good thing about him he knows how I react to drugs sometimes not that well!

So we are off again. Updates hopefully from LA

Look who I found on my old razor!!
My girlfriend...

My Junior in HS
or little Joe....

Ha ha-Tim being Silly!!

see ya.....................soon

MONDAY,MONDAY

2011-09-05T07:52:00.000-07:00

MARCH 2011
PROGRESS ON NEW TOWERS
GROUND ZERO

This year we went to New York city as we do a couple times a year.

But, this year Tim finally said yes when I asked to go down to ground zero. He never wanted to go because he always said it was just a hole in the ground and there was really nothing to see yet. So I knew he was right and we didn't go. I don't know what made me push him to go this year-probably because I really wanted to see the progress.
You really couldn't get close there is so much construction, and you can see how it is a construction site with fences up.
This year you could see progress though. I was surprised because there was more than I thought to get ready for 9/11 of this year. The picture to the left is pretty much all you can see as far as buildings go. This is the new Tower 1.

Church that survived the towers collapse on 9/11
Everything else was destroyed around it

This survived the building collapse and is now
in Battery Park with an eternal flame

I LOVE NEW YORK
THANKS HONEY!

Not much else going on here right now.
Steroid wean at 2 3/4
Yesterday was headache from hell day but come to find out I didn't take all the Decadron the night before. In the dark I guess I didn't take it all. REALLY-it made me pretty sick but I can guarantee you that won't happen again. Waiting to go to Santa Monica at the end of the week and hanging out making chicken enchiladas for Spencer today!-Yummy

BYE.........................................

Friday at last!

2011-09-02T17:37:00.000-07:00

Spencer's Scrimps!

Scrimp Taco's!! Yum-home made tortillas-
Spencer and Tim chowing down tonight!

So still haven't got any results from my cholesterol-how important was that fast? I guess I will find out next appt. with the doctor.
So I have ordered my 1st round of Zelboraf the drug I take. It comes from a pharmacy in Florida right to my house. I give them $200 for a co-pay and they send a months supply. I set up my first delivery.

I will still be in LA next week to discuss all my options with Dr Hamid and go to the dermatologist. I won't be under a research study anymore but will remain his patient as well as Dr Obara here. I feel pretty good about this decision because as soon as Dr Obara new the drug was approved he had his nurse make sure I would get the drug here. The first time I got a call about getting the drug in LA was 2 days ago and with the 3 day weekend I thought that was pretty lame. Dr Obara's office called me every time they had an update about getting this drug to me. Yesterday they called and said I had been approved and Genentech would be contacting me as well as the pharmacy. I should still get a months supply for free when I go to LA according to Genentech but I wasn't gonna take any chances since I run out on Thursday. Can't have a lapse in taking the drug.
Hopefully this trip to Santa Monica we can take it a little easier since there won't be any tests. Maybe we can just eat!!
Pretty much been taking it easy since weaning and trying to coming off the steroid it makes me so sore. You feel everything times 10 since that drug helps with all inflammation. geez
Tomorrow will be down to 2 3/4mg a day--yaye.

So life has a little normalcy most days. Hopefully it will continue like this for now and the drug will keep working like its supposed too.

Not much else to report. Spencer got through the first week of school of course they have a 3 day weekend now. Tim will be back at work 3 days for now and Footballs back.
As usual life goes on.

Yummy

Our high maintenance cat
Mr Noodles with his water fountain!

Look at that face!!
Bye..................

WEDNESDAY AT THE CANCER CENTER

2011-08-31T08:18:00.000-07:00

THIS IS WHERE I SPEND AT LEAST ONE DAY A WEEK. COMPREHENSIVE CANCER CENTERS OF NEVADA. JUST WALKING THROUGH THE DOORS CAN BE AWFULLY TOUGH TO DO.

COMPREHENSIVE CANCER CENTER

TALK ABOUT POST TRAUMATIC STRESS SYNDROME
STARTS WHEN YOU WALK THROUGH THESE DOORS

FASTING WENT PRETTY GOOD FOR CHOLESTEROL TESTS. DIDNT REALLY BOTHER ME AS MUCH AS I THOUGHT. DIDNT GET MY RESULTS FOR THE LDL YET. DR OBARA TALKED TO ME ABOUT THE ZELBORAF DRUG BEING SENT HERE FROM THE PHARMACY DIRECTLY SO I DONT HAVE TO DRIVE TO LA EVERY MONTH TO PICK UP THE DRUG.
WE ARE JUST WAITING FOR THE PRE-AUTHORIZATION TO GO THROUGH. HE KNOWS I AM GOING TO LA LATE NEXT WEEK TO FOLLOW UP WITH DR HAMID AND DERMATOLOGIST AND I WILL STILL BE GOING THERE JUST NOT AS OFTEN. THERE IS STILL NO MELANOMA CENTER HERE AND MY OPTIONS WOULD BE LIMITED IF THE DRUG STOPPED WORKING. BUT I CAN HAVE MY TESTS HERE AND GET THE DRUG. DR OBARA SEEMS OKAY WITH EVERYTHING AND I KNOW I SHOULD STILL BE AT THE ANGELES CLINIC FOR STAGE 4 MELANOMA AND MANY MORE OPTIONS FOR CLINICAL STUDIES THERE.

I WAS TOLD MY CO-PAY WOULD BE $200 A MONTH FOR JUST FOR THE DRUG ON TOP OF MY $437 COBRA PAYMENT EACH MONTH. PEOPLE DONT QUIT YOUR DAY JOBS.
THAT IS $637 FOR ZELBORAF THE DRUG AND CIGNA COBRA PAYMENT-THATS IT. DOESNT INCLUDE ANY OTHER PRESCRIPTIONS YOU MAY NEED OR YOUR DOCTORS COPAYS OR TEST COPAYS OR YOUR YEARLY DEDUCTIBLE OR ANYTHING ELSE. HAH-THIS IS A GOOD EXAMPLE OF WHY YOU SHOULD SAVE A LITTLE MONEY. IF THIS HAPPENED TO YOU TOMORROW COULD YOU PAY YOUR MORTGAGE? OKAY NO MORE PREACHING-IM JUST SAYING.........
EVERYONE THINKS IT WONT HAPPEN TO THEM!

OKAY-SHORTER POST TODAY=HAVE TO COLOR MY HAIR AGAIN!

JUST A LITTLE CROWDED FOR CANCER!
BYE............

1st Day High School Junior

2011-08-30T07:05:00.000-07:00

TOUGH DAY SPENCE?
NOTE DINOSAUR DOG IN BACKGROUND!

1ST DAY AS A JUNIOR!!!

SECOND OUTFIT OF THE DAY.
JUST FOUND OUT YOUR NOT ALLOWED TO MATCH AT SCHOOL.
MEANING-YOU CANT WEAR A NIKE SHIRT IF YOUR WEARING THE SHORTS! REALLY, REALLY SPENCE!!! THIS IS HIS RULE.

JOE AND I WERE INFORMED THAT HE IS A SKATER DUDE A T SCHOOL BUT A SPORTS OUTFIT GUY AT HOME-HAH
RUNDOWN OF HOW THIS WORKS RIGHT FROM SPENCE-HAH

HE IS SUCH A GOOD KID WITH A BIG HEART ITS HARD TO ARGUE THE POINT WITH HIM.
HE JUST HATES SCHOOL IN GENERAL. THE TEACHERS LIKE HIM BECAUSE HE IS NEVER A PROBLEM SO ITS SO HARD TO GET MAD.
I WILL SAY TO HIM LOOK AT MY MOON FACE-AND HE SAYS I DON'T NOTICE ANYTHING MOM YOU LOOK THE SAME. EVERY TIME HE SAYS THAT I CANT BELIEVE IT. HE IS NEVER EMBARRASSED TO GO ANYWHERE WITH ME AND HE NEVER CARES WHAT ANYONE THINKS-THAT IS MY KID!

WHEN THIS WHOLE NIGHTMARE STARTED 6 YEARS AGO I USED TO PRAY PLEASE LET ME SEE SPENCER THROUGH 5TH GRADE. AT THE TIME HE WAS 9 AND I BARGAINED ALOT WITH GOD.
SPENCER IS 16 AND 6 YEARS HAVE PASSED AND SOMEHOW I AM WATCHING HIM GO TO HIGH SCHOOL. I AM SO THANKFUL FOR THAT. I AM JUST MOMMY TO HIM.
YOU KNOW YOU STILL YELL ABOUT HOMEWORK AND MOST DAYS ARE PRETTY NORMAL TO HIM-THANK GOD. MOM CAN YOU DRIVE ME TO THE PARK IS WHAT I LIKE TO HEAR-ITS NORMAL. SOMETIMES I THINK ABOUT IT BUT NOT ALL THE TIME EVEN NOW-YOU JUST WANT EVERYTHING TO BE NORMAL FOR YOUR KID. SO FAR I GOT THIS DISEASE IT HASN'T GOT ME-NOT YET!! A JUNIOR IN HIGH SCHOOL!! SO KISS YOUR KIDS BECAUSE NO MATTER WHAT WE ARE LUCKY. BY THE WAY HE HAD TO WEAR JEANS IN 110 HEAT BECAUSE THAT'S WHAT WAS COOL TO WEAR TO SCHOOL YESTERDAY ALSO. HAHA SPENCER KEEPS ME SANE JUST BY BEING AROUND SOME DAYS. I LOVE YOU SPENCE

I HOPE EVERYONE ELSE HAD FUN SENDING OFF THE KIDS TO SCHOOL-ITS ALWAYS A TREAT-HUH

GOING FOR ALL THESE CHOLESTEROL TESTS AT 3PM TODAY TO SEE HOW MY LEVELS ARE. CANT WAIT.
I AM ALSO GOING TO FIND OUT MY CO PAYS FOR MY DRUG OF CHOICE AND HOW THE PHARMACY WILL DELIVER IT.
DECADRON-DOWN TO 3 1/4MG PER DAY---SUGAR DROPS WITH THIS LOW DOSE SO HAVING TO REALLY WATCH IT. SMALL MEALS AGAIN SO OFTEN-YAYE

BOUGHT A CASE OF BLUEBERRY FAGE YOGURT SO I WOULDN'T RUN OUT AT WHOLE FOODS YESTERDAY 10% DISCOUNT IF YOU DO IT THAT WAY AND WE GO THROUGH THEM SO FAST. I HAVE EVERYONE HOOKED ON THIS STUFF-IF YOU HAVEN'T TRIED IT DO! GREAT PROTEIN AND OH WELL JUST TRY IT.

TIM ALSO WENT BACK TO WORK 3 DAYS A WEEK STARTED YESTERDAY. SO IT WAS REALLY WEIRD AND NORMAL WITH HIM GONE AND SPENCER AT SCHOOL. BUT THIS IS A GOOD THING RIGHT NOW.

UPDATES LATER :)

MR NOODLES POOPED
AFTER LOOKING FOR SPENCE ALL DAY!

2ND OUTFIT
BYE...................

Another Saturday/MOON BELLY??

2011-08-27T07:05:00.000-07:00

GHETTO MEAL!
SPENCER'S FAVORITE NOW!

UPDATED GHETTO MEAL-HA

I HAVE TO GIVE ORIGINAL CREDIT TO JOE'S MOM FOR THIS INVENTION. SHE MADE A VERSION OF THIS FOR THE FAMILY GROWING UP AND THAT'S THE NAME IT WAS GIVEN-GHETTO MEAL.
CRACKS ME UP~SPENCER LIKED IT SO I MADE A VERSION TOO AND NOW ITS ONE OF OUR FAVORITES. YOU KNOW WHEN JOE COMES OVER AND ASKS TO TAKE HOME SOME GHETTO MEAL ITS GOTTA BE GOOD-IT FEEDS A CROWD

NOT MUCH GOING ON THIS WEEKEND BUT STORM WATCHING-LOTS OF FAMILY BACK EAST FOR TIM AND I IN JERSEY AND NEW YORK HAVING TO DEAL WITH ALL THIS MISERY.
I GOTTA A CALL FROM THE PHARMACY THAT WILL EXCLUSIVELY BE DISTRIBUTING THE NEW DRUG ZELBORAF TO MY DOCTOR. THEY ARE TRYING TO GET EVERYTHING IN ORDER BY EARLY NEXT WEEK-MEANING APPROVED BY INSURANCE WITH CO-PAYS. THEY SAID EVERYTHING SHOULD BE APPROVED BY INSURANCE AND THEY WILL BE ABLE TO DISTRIBUTE BY HOPEFULLY EARLY NEXT WEEK AND WILL CONTACT ME. I GUESS ALL PATIENTS WERE TOLD THE SAME THING SO BASICALLY WE ARE ALL STILL WAITING TO FIND OUT HOW MUCH IT WILL COST US. THERE IS 1 PHARMACY THAT WILL DISTRIBUTE FOR A COMPANY FOR EVERYONE. SO ITS NOT LIKE YOU CAN GO DOWN TO SAVON TO PICK UP A PRESCRIPTION-THIS WILL BE HIGHLY REGULATED AND CONTROLLED BUT THE LADY TOLD ME I WILL ONLY HAVE TO GO THROUGH THE INSURANCE PROCESS ONCE. SO WAITING ON THIS.

DOWN TO 3 1/2MG A DAY ON THE DREADED DECADRON. THAT IS A MIRACLE IN ITSELF. SOMETIMES SEVERE JOINT PAIN IN KNEES-BUT THIS HAPPENS AND IS A BIG SIDE EFFECT FROM WEANING OFF THIS DRUG AND IS WELL DOCUMENTED. YOU CAN'T EVEN WALK SOMETIMES ITS SO BAD-FEELS LIKE YOUR KNEES OR ANKLES TOO ARE TOTALLY SWOLLEN. ALSO, REALLY SORE IN OTHER SPOTS BECAUSE THE STEROID WORKS LIKE AN ANTI INFLAMMATORY AND NOW YOU CAN FEEL EVERYTHING! SWELLING, JOINT PAIN AND HEADACHES ARE THE MAIN SYMPTOMS PEOPLE WHO I TALK TO GET-BUT JOINT PAIN SEEMS THE WORSE FOR EVERYONE. HEATING PADS!
LASIX DOESN'T SEEM TO WORK AS WELL ON THE REDUCTION DAYS EITHER-GREAT.

SO, MOON FACE AND MOON BELLY ARE SO MUCH FUN WITH EXTRA FLUID! I CAN'T BELIEVE THEY HAVE ACTUAL NAMES FOR THESE STEROID SIDE EFFECTS. THEY SAY 3 TO 4 WEEKS IT WILL TAKE FOR THEM TO GO AWAY. THE MOON BELLY IS SO UNCOMFORTABLE-IT IS ALL EXTRA FLUID AROUND YOUR UPPER ABDOMEN AND NOT COMFORTABLE IN YOU HAVE TO MUCH SALT OR EAT TO MUCH!! SO YOUR FACE, BELLY, NECK AND UPPER BACK ALL GET EXTRA PADDING FROM THE FLUID CAUSED BY THE STEROID-REALLY
SO WHEN I SAY I LOOK LIKE A BLUEBERRY I DO!--HA

STILL GOTTA GET MY CHOLESTEROL CHECKED THIS WEEK-LET YOU KNOW HOW THE FAST GOES-OUGHTA BE A JOKE TO FAST FOR 8 HOURS!

GHETTO MEAL!

TIM'S NEW FAVORITE THING-REALLY

SERIOUSLY SPENCE-
KIM KARDASHIAN WEDDING-HA

TOUGH DAY FOR MR NOODLES
BYE.....................................

SERIOUSLY-HIGH CHOLESTEROL-REALLY

2011-08-24T07:29:00.000-07:00

FAGE YOGURT 2%
BLUEBERRIES

SERIOUSLY!!
THE DR'S OFFICE CALLED AND MY CHOLESTEROL IS 292. IM LIKE IS THAT HIGH?
SO THEY WANT ME TO FAST ONE DAY NEXT WEEK SO THEY CAN GET ANOTHER READING ON ME.
I WAS TRYING TO GET MY HEALTH ASSESMENT RISK NUMBERS FOR CIGNA FROM KATIE BECAUSE IF I DON'T THEY WILL THROW ME INTO THEIR CHEAPER PLAN AND DR OBARA SAW MY NUMBERS-GREAT. IF YOU DON'T SUBMIT THESE NUMBERS AND A NUMBER OF OTHER QUESTIONS LIKE HOW FAR YOU DRIVE EACH DAY THEY-CIGNA PUT YOU IN WHATS CALLED THE CHOICE PLAN. IT COSTS LESS FOR THE EMPLOYER AND EMPLOYEE! GUESS WHAT THAT MEANS-IM NOT SURE BECAUSE THEY REFUSE TO REALLY EXPLAIN WHY THIS PLAN IS CHEAPER. ONE THING I KNOW THE PRESCRIPTION PLAN HAS SOME BIG HOLES IN IT. YOU CANT EVEN GET AN ANSWER FROM BENEFITS OR EXECUTIVES AS TO WHAT THE DIFFERENCE IS BETWEEN THIS CHOICE PLAN AND THE PLAN I AM ON THE ADVANTAGE-THEY SIMPLY WON'T EXPLAIN IT TO YOU AND NOBODY SEEMS TO KNOW WHY AND I MEAN NOBODY. I HAVE CALLED EVERYONE TO ASK. A LITTLE SHADY FOR A MAJOR CORPORATION TO OPERATE THIS WAY-CIGNA AND BENIFITS.
ANYWAY-I TOLD THE NURSE I COULDN'T FAST WHEN TAKING THIS STEROID NO WAY-I WILL PASS OUT. SHE SAID TO EAT A PIECE OF FRUIT AND THEY WILL DRAW MY BLOOD AS SOON AS I GET THERE-HAH. I HAVEN'T HAD ANY SUGAR OR REALLY ANY BAD CARBS FOR ALMOST 3 MONTHS NOW. I LIVE ON FAGE YOGURT, EGG WHITES, WHOLE WHEAT BREAD, LEAN PROTEIN-SO IF MY CHOLESTEROL IS HIGH ITS PROBALBLY FROM THE MEDS AND IS THIS MY MAIN CONCERN NOW-NOOOO.
WHEN THE NURSE CALLED I WAS LIKE WHO CARES RIGHT NOW. I LOOK LIKE THE MAN IN THE MOON AND THE GIANT BLUEBERRY GIRL FROM WILLY WONKA. IM NOT TAKING ANY MORE MEDS! ITS PROBABLY FROM THE STEROID LIKE EVERYTHING ELSE.
IM LIKE-WAIT TILL THEY LOOK AT MY HEIGHT AND WEIGHT! HAH-HEALTH ASSESMENT WHAT A JOKE RIGHT NOW.
ANYWAY SO IM ARGUING WITH THE NURSE THAT NO WAY CAN I FAST RIGHT NOW. SHE SAYS BRING A SANDWICH-JUST WHAT I NEED! I WILL BET YOU THEY WONT GET A GOOD READING.

SPENCER GOES BACK TO SCHOOL MONDAY SO JUST HANGING OUT WITH HIM-ALTHOUGH HE HAS BEEN WITH HIS FRIENDS AT THE PARK ALL THE TIME-I SHOULD SAY HANGING OUT WITH HIM WHEN HE LETS ME-HAH. AND STAYING OUT OF THE HEAT AT THE MOVIES OR AT HOME. THE HEAT IS NOT TO KIND TO MY FLUID CONDITION SO GETTING IN AND OUT OF A CAR ALL DAY DOESN'T WORK THAT WELL! IT HAD TO BE 111 THIS WEEK-GEEZ.

GOTTA GO HANG OUT AT THE DMV NOW SO I'LL UPDATE LATER.

BYE

TUESDAYS NEWS

2011-08-23T07:25:00.000-07:00

TOTALLY!

SO THIS IS WHAT I HAVE TO REPORT FROM THE DOCTORS OFFICE YESTERDAY

SIGNED A BUNCH OF PAPERWORK FROM THE DRUG COMPANY. HOW MUCH DID YOU MAKE LAST YEAR WAS ONE OF THE QUESTIONS. REALLY! WHO CARES CAUSE I'M NOT MAKING ANYTHING THIS YEAR!

GENENTECH IS PROBABLY TRYING TO FIGURE OUT WHAT TO CHARGE CIGNA AND WHAT TO CHARGE ME THE PATIENT. AT $9500 A MONTH FOR THIS DRUG IT SHOULD BE INTERESTING. THE NURSE SAID GETTING THE DRUG ISN'T LIKE WHEN THEY TRIED TO GET YERVOY. THEY HAD NO EXPERIENCE WITH THAT DRUG AND IT IS A HARSH DRUG THAT WORKS WITH YOUR IMMUNE SYSTEM (RED FLAGS BIG TIME) IT CAN MAKE YOU VERY SICK SO THAT IS WHY THEY WERE NOT GONNA DEAL WITH IT AT THE COMPREHENSIVE CANCER CENTER HERE WITH NO EXPERIENCE BY THE DOCTORS EVER GIVING THE DRUG TO SOMEONE.
KATIE SAID THEY WERE SUBMITTING THE PAPERWORK YESTERDAY. IT IS PRETTY SCARY.
I WILL GO BACK TO LA TO GET THE LAST FREE 28 DAY SUPPLY THAT IT SAYS WILL BE GIVEN TO MY IN THE PAPERWORK I SIGNED AFTER THE DRUGS APPROVAL. BUT IT WOULD BE NICE TO GET MY SUPPLY HERE EVERY 28 DAYS SO THAT I'M NOT DRIVING BACK AND FORTH TO CALIFORNIA EVERY MONTH. KATIE SAID SINCE I HAVE THE GENE I WILL GET THE DRUG BUT FOR HOW MUCH IS THE QUESTION OF THE MOMENT.
SO I AM IN A HOLDING PATTERN FOR ANSWERS RIGHT NOW. SHE WROTE ME A NEW SCRIPT FOR LASIX ALSO. WHEN THEY CHANGED MY MED FROM 2 20 MG PILLS TO 1 40MG PILL A DAY I SWELLED UP LIKE THE BLUEBERRY GIRL FROM WILLY WONKA AGAIN. AFTER 3 DAYS I THOUGHT WHAT THE HECK IS GOING ON SO WENT BACK TO TAKING 2 20MG PILLS AND THE SWELLING WENT AWAY. THE WAY THE 40MG PILL IS FORMULATED IS DIFFERENT SHE SAID WITH THE GENERIC (THAT'S NICE HUH) AND PEOPLE HAVE PROBLEMS WITH THEIR GENERICS ALL THE TIME WHEN THEY CHANGE TI=I HAVE HAD SEVERAL PROBLEMS, NOT CHANGING ANYTHING ELSE AGAIN!! SO NOW I'M BACK ON TRACK.
KATIE ALSO HELPED ME WITH THE CIGNA HEALTH ASSESSMENT-JOKE OF JOKES
SHE HAD TO RUN MY BLOOD FROM LAST WEEK FOR MY CHOLESTEROL! DR OBARA WAS LAUGHING BECAUSE REALLY WHO CARES RIGHT NOW AND CIGNA CAN SEE MY PROBLEMS. THEY HAVE BEEN SO GOOD WITH ME AT THE DR'S-I WAS THERE SITTING IN THE CUBICLES WITH THE DR'S AND NURSES YESTERDAY-WATCHING KATIE WORK, SHE IS CONSTANTLY ON THAT PHONE HELPING ANOTHER PATIENT. I EAT SO HEALTHY BECAUSE OF THE STEROID MY CHOLESTEROL SHOULD BE GREAT RIGHT NOW-HAVEN'T HAD SUGARS OR BAD CARBS IN MONTHS=ALTHOUGH YOU WOULDN'T KNOW IT TO LOOK AT MY MOON FACE-YOU WOULD THINK GEEZ SHES GAINED WEIGHT. ALL FLUID AND STEROID BUT YOU STILL HAVE TO LOSE ALL THAT YOU GAINED FROM STEROID-FUN HUH.

DECADRON DOWN TO 3 3/4MG A DAY-YAYE

EVERY REDUCTION BRINGS A LITTLE SIDE EFFECT. USUALLY FEELS LIKE HAND CRAMPING BUT GOES AWAY AFTER THE FIRST DAY YOU REDUCE-SOMETIMES. THAT'S THE MAIN THING BESIDES PRESSURE CHANGES IN YOUR EARS. COULD BE BECAUSE OF THE SMALL RESIDUAL EDEMA-VERY LITTLE-THAT'S ON THE MRI DR OBARA SAID. WE WILL SEE I GUESS.

OKAY-CATCH YOU UP IF I HEAR ANYTHING ELSE. GOT LOTS OF MEDICAL STUFF TO DO TODAY AND OTHER STUFF AS LIFE GOES ON. RANDI

PLEASEEEEEEEEEE.....

BYE..........

ANOTHER SUNDAY YUCK

2011-08-21T07:46:00.000-07:00

GREEK CHICKEN PASTA SALAD
YUM

SO WHAT DO YOU DO ON SUNDAYS?
WELL COOK OF COURSE.

TV IS HELL ON THE WEEKENDS. I DONT KNOW WHAT YOU WATCH UNLESS YOU ARE A GUY WATCHING SPORTS SO I FIND SOMETHING ELSE TO DO.

ORIGINALLY DEB MADE A VERSION OF THIS FOR ME WHEN I COULDNT COOK AND IT WAS SO GOOD THAT I NOW HAVE TO MAKE MY OWN SO EASY. HER MOM GAVE HER THE ORIGINAL RECIPE BUT HERE IS WHAT I PUT IN IT. THANKS DEB!

PASTA SALAD
1 PD WHOLE WHEAT PASTA
3 BONELESS SKINLESS CHICK BREASTS POACHED FOR 25 MIN IN CHICK BROTH(CHOPPED BITE SIZE WHEN COOL OFF ENOUGH TO HANDLE)
1 CAN SLICED BLACK OLIVES
1 TOMATO CHOPPED
1 CUCUMBER SEEDS OUT CHOPPED
COUPLE HANDFULS PARSLEY CHOPPED
FRENCH FETA CRUMBLED (A GOOD SIZE BLOCK-FRENCH IS CREAMIER)
3 CLOVES GARLIC
EXTRA VIRGIN OLIVE OIL
PEPPER,CAYENNE, PAPRIKA N LITTLE SALT

MAKE PASTA-DRAIN PUT ASIDE-IN SAME POT POUR IN CHICKEN BROTH (I USE RACHAEL RAYS IN A BOX-IT IS THE BEST I SWEAR STORE BOUGHT) BRING TO BOIL THEN PUT ON LOW WITH CHICKEN IN POT AND BROTH COVERING BREASTS PUT LID ON FOR 25 MIN. CHOP UP VEGGIES EXCEPT FOR GARLIC-PUT IN BIG BOWLALONG WITH OLIVES. WHEN CHICKEN IS DONE TAKE OUT TO COOL AND POUR OUT BROTH. PUT POT BACK ON STOVE AND ADD A GOOD AMOUNT OF OIL ON VERY LOW. GRATE THE 3 GARLIC CLOVES INTO THE OIL AND STIR, JUST UNTIL THE OIL IS FLAVORED. DO NOT LET GARLIC BROWN OR BURN. PUT PASTA IN BOWL WITH VEGGIES AND POUR OIL OVER. CHOP CHICKEN PUT IN BOWL AND CRUMBLE FETA IN. SEASON WITH A LITTLE CAYENNE, PEPPER, PAPRIKA AND A LITTLE SALT. FETA IS SALTY ENOUGH. ADD MORE OLIVE OIL AS YOU TOSS TO COAT SALAD TO YOUR TASTE--WALLAH--YUMMY.

SO NOW WAITING TO GO TO DOCTORS TOMORROW TO SIGN PAPERS FOR INSURANCE FOR THE DRUG. KATIE THE NURSE CALLED ME FRIDAY AND SAID COME DOWN SO SHE CAN GET ME TO SIGN ALL THE PAPERWORK AND DO INSURANCE STUFF. CANT WAIT TO FIND OUT WHAT THAT REALLY MEANS. I CALLED HER BACK BUT SHE WANTS ME TO GO DOWN THERE.
SO NO MATTER WHAT I AM GOING BACK TO LA ON SEPT 9. THAT WAY I CAN TALK TO THE DOCTOR AND GO TO MY DERMATOLOGIST APPT I MADE. THE DRUG CAUSES CUTANEOUS LITTLE SKIN CANCERS THAT NEED TO BE CUT OFF AND MANAGED SO I WANT TO GET THAT TAKEN CARE OF NO MATTER WHAT. I ABSOLUTELY LOVED THE DERM I WENT TO AND HAVENT GONE TO ANYONE HERE WHO EVEN COMPARES. THERE BEDSIDE MANNERS NEED INTERVENTIONS-REALLY COLD.

ON ANOTHER NOTE-SPENCER AND I WENT TO THE MOVIES THIS WEEK CAUSE IT WAS SO HOT. HE WANTED TO SEE CAPTAIN AMERICA=YOU CAN PASS. WE ALSO SAW TRANSFORMERS AND THAT WAS SURPRISINGLY GOOD. IT KEPT MY ATTENTION THE WHOLE TIME. EXCEPT FOR THE LADY WITH THE 2 KIDS WHO SAT RIGHT BEHIND SPENCER WHEN THERE WAS NO ONE ELSE IN THE ENTIRE THEATRE=NO KIDDING. FINALLY I HAD TO TELL SPENCER TO MOVE AND TOLD HER HOW RUDE SHE WAS. I SAID HOW CAN YOU SIT BEHIND THE ONLY 2 PEOPLE IN THE THEATRE THEN TALK THE WHOLE TIME=YOU ARE JUST RUDE I WOULD NEVER DO THAT WITH MY KID AND IF SPENCER WAS TALKING I WOULD OF DRAGGED HIM TO ANOTHER ROW. TOTALLY UNACCEPTABLE! SPENCER WAS LIKE OKAY MOM CALM DOWN BUT IT NEEDED TO BE ADDRESSED-IT REALLY WAS UNBELIEVABLE.

WE ALSO SAW PLANET OF THE APES LAST WEEK AND THAT WAS PRETTY GOOD TOO.
SO I GUESS WE WILL HAVE SEEN EVERYTHING BY NEXT WEEK-HAH ITS SO HOT OUT THAT SITTING IN A NICE COOL THEATER THINKING ABOUT NOTHING FOR 2 HOURS IS GREAT.

I FINALLY MADE IT DOWN TO 4MG OF DECADRON ON MY 3RD DAY=YAYE
TOMORROW HOPING TO GO TO 3 3/4. WHAT A MILESTONE. REDUCING IT 1/2MG EVERY 6 DAYS WAS THE WAY TO GO FROM ALL THE INFO I GOT FROM BLOGS. AT LEAST IT SEEMS TO HAVE ALLOWED MY ADRENAL GLAND TO START WORKING AGAIN EVEN THOUGH IT DOES STILL CAUSE SOME PRESSURE CHANGES IN HEAD AND STILL MAKES BREATHING HARDER SOMETIMES. THESE DOCTORS SAY OH REDUCE 2MG EVERY WEEK=YEAH RIGHT-NO WONDER PEOPLE HAVE SUCH PROBLEMS THEY CAN NEVER GET OFF=IF YOU DONT KNOW YOUR OWN TOLERANCE YOU WOULD NEVER BE ABLE TO REDUCE IT LIKE THAT AFTER BEING ON IT 3 MONTHS. 3 MONTHS SEEMS TO BE THE LIMIT WHERE YOU REALLY HAVE TO WEAN SLOWLY. LIKE DR OBARA SAID SOME PEOPLE FEEL BETTER STAYING ON 1 OR 2 MG FOREVER. REALLY=NO WAY BUT YOU JUST LISTEN TO THE DOCTORS=AMAZING. AND PEOPLE DO JUST STRICTLY LISTEN TO THEM INSTEAD OF THEIR BODIES LIKE DRS HAVE SOME GOD LIKE SENSORS GOING ON. HATE TO TELL YOU HOW MANY TIMES I HAD TO CHANGE STUFF. IF YOUR NOT FORCEFUL ON YOUR POINT WITH THEM SOMETIMES I HAVE FOUND AFTER 6 YEARS OF THIS NOW THEY WILL JUST TALK OVER YOU AND TELL YOU WHAT THEY ARE GOING TO DO. NOPE NOT HAPPENING ANYMORE. IVE NOTICED OLDER PEOPLE DO THAT ALL THE TIME. SURE ILL TAKE CHEMO EVEN THOUGH IT DOESNT WORK=REALLY. YOU GET MY POINT.

THANK YOU TO EVERYONE WHO HAS SENT GOOD WISHES AND PRAYERS MY WAY. THEY HAVE BEEN MUCH NEEDED AND SO APPRECIATED. I KNOW THEY HAVE HELPED TREMENDOUSLY THESE PAST FEW MONTHS. HOW ELSE WOULD I BE DOING BETTER. WITH ALL OF YOUR HELP OF COURSE!

LET YOU KNOW WHAT THE DOCTOR SAYS TOMORROW.....

HEY-WHO ARE THOSE GUYS?

HEY LOOK AT ANDRE ETHIER-GOOD BOBBLEHEAD JANENE!

BYE................................

DRUG APPROVED LAST NIGHT

2011-08-18T07:45:00.000-07:00

HERE IT IS-VEMURAFENIB APPROVED FOR LATE STAGE SKIN CANCER LAST NIGHT!

WELL-IT IS OFFICIAL!
THE FDA FAST TRACKED THE DRUG TO APPROVAL YESTERDAY. OFFICIALLY THE DRUG SHOULD BE APPROVED OCTOBER 28TH=

NOW ON TO HOW I AM GOING TO ACTUALLY GET THE DRUG-HAH

I THINK I AM THE ONLY PATIENT AT THE COMPREHENSIVE CANCER CENTER ON EASTERN TAKING THE BRAF DRUG.
THIS HAPPENED WHEN I TRIED TO GET YERVOY AND I WAS TOLD BY MY DOC THAT THEY WOULD NOT BE DISPENSING YERVOY THERE BECAUSE OF COST AND ONLY ONE OTHER PERSON WAS TRYING TO GET IT THERE-I THINK HE WAS EVENTUALLY PUT ON IT BUT AM NOT SURE. SO I AM WAITING TO HEAR WHAT THEY SAY ABOUT THIS BECAUSE IT IS BASICALLY THE SAME SITUATION AND I WAS APPROVED AT THE TIME TO GET YERVOY (I COULDNT TAKE IT ANYWAY AT THE TIME)AND IT IS THE SAME PRICE AS THIS NEW DRUG IS. LIKE $56,OOO EVERY 6 MONTH CYCLE AND IT IS IN PILL FORM NOT GIVEN INTRAVENOUSLY. THE COMPANY GENENTECH WILL WORK WITH MY INSURANCE TO GET IT FOR ME BUT I MIGHT STILL HAVE TO GO TO LA IF IT IS TO EXPENSIVE FOR THE CENTER HERE TO GIVE OUT. THIS IS HOW I REALLY ENDED UP AT THE ANGELES CLINIC IN THE FIRST PLACE. I COULDNT EVEN GET THE DRUG IN VEGAS. SO I TALKED TO MY DOC ALREADY IN LA WHEN I WAS THERE AND I THINK I JUST HAVE TO WAIT TO SEE WHAT THE REAL DEAL IS. LOOKS LIKE I WILL GET AT LEAST UNTIL FINAL APPROVAL IN OCTOBER. OR AT LEAST ANOTHER 28 DAY SUPPLY AFTER THIS ONE IM TAKING WITHOUT INSURANCE. THE PAPERS I SIGNED SAY THAT.
NO MORE FREE CAT SCANS AND MRI THOUGH. THAT WAS DEFINITELY A PLUS! BUT I GOT BOTH LAST WEEK IN LA. SO NEXT TIME IM SURE I WILL HAVE COPAYS AGAIN. THAT WAS DEFINITELY A PLUS BECAUSE OF HOW EXPENSIVE ALL THOSE TESTS ARE.
THE DRUG WILL BE MARKETED UNDER THE NAME OF ZELBORAF NOW.
SO WE CAN JUST START CALLING IT THAT NOW.

ONE OF THE PROBLEMS GETTING THE DRUG IS ONLY 50% OF US HAD THE GENE THE DRUG CAN BE USED ON TO START WITH. SO THAT MAKES IT MORE EXPENSIVE TO BEGIN WITH. SO YOU ARE GETTING IT FOR SPECIFIC PATIENTS AND YOU MAY ONLY HAVE ONE PERSON TAKING IT THAT IS RESPONDING. I READ LAST NIGHT THAT ONLY 50% OF PATIENTS HAVE TUMOR SHRINKAGE AND ONLY 50% OF PEOPLE HAVE THE GENE TO BE GIVEN THE DRUGS-HOW IS THAT FOR ODDS? FIRST THEY HAVE TO MAKE SURE YOU HAVE THE BRAF GENE OR THEY ARE NOT GIVING YOU THE DRUG ANYWAY.
I HAVE BOTH RIGHT NOW! PRETTY AMAZING.
PEOPLE ALSO TAKE THE DRUG AND SOMETIMES IT STOPS THE TUMORS FROM GETTING BIGGER OR IT DOESNT WORK AT ALL BUT ONLY SOME OF US ACTUALLY HAVE OUR TUMORS SHRINK. I FEEL PRETTY LUCKY RIGHT NOW.
THERE IS ANOTHER PATIENT AT THE CANCER CENTER HERE THAT IT DIDNT WORK ON AND HE IS ALREADY TRYING ANOTHER STUDY THEY HAD HERE BUT I WOULD STILL GO BACK TO LA IF THEY TOLD ME THAT RIGHT NOW. I WOULD THINK THERE ARE MORE PATIENTS THEY WILL TRY AND GET THE DRUG FOR NOW THAT IT IS APPROVED BUT THERE WAS SO MUCH POLITICS WHEN I WAS TOLD THEY WOULD NOT BE HANDLING THE OTHER DRUG YERVOY HERE IN LAS VEGAS THAT IM NOT HOLDING MY BREATH. AND I AM NOT JUST GONNA TAKE ANY ANSWER DR OBARA GIVES ME-I DECIDED I WILL TELL HIM WHERE I WILL CONTINUE MY TREATMENTS. IF DR HAMID FEELS I NEED TO BE WITH A BIG RESEARCH CENTER THATS WHERE I WILL BE IF IT CAN BE ARRANGED RIGHT. NOW IF I CAN GET THE DRUG HERE AND THE PROPER CARE I WOULD STAY HERE SO WE WOULDNT HAVE TO WORRY ABOUT ALL THE COSTS OF TRAVELING TO LA EVERY MONTH. I JUST KNOW THE BETTER RESEARCH IS NOT HERE IN CASE I NEED A NEW STUDY AND IN THE BEGINNING DR OBARA DIDNT SEEM TO HAVE ANY ANSWERS FOR ME=NO STUDIES OPEN AND NO DRUG AVAILABLE.

THEN THE NEW DOC I SAW WHEN DOCTOR OBARA WAS ON VACATION HE IS IN RESEARCH AT THE CENTER BUT IM NOT CONFIDENT ABOUT HIM AT ALL=HE CAME FROM MD ANDERSON BUT I THINK HE IS JUST LOOKING FOR SOMEONE TO DO A STUDY ON HERE=THAT IS THE FULL IMPRESSION I GOT FROM HIM.
SO LOTS TO PROCESS NOW UNTIL I SEE DOC IN 2 WEEKS AND GO BACK TO LA IN 3!!

SO 2 NEW MELANOMA DRUGS APPROVED THIS YEAR FOR LATE STAGE SKIN CANCER AFTER NOTHING FOR 13 YEARS! IT IS SUCH A DEVASTATING CANCER WITH MOST PEOPLE ONLY SURVIVING 6-9 MONTHS AFTER STAGE 4 DIAGNOSIS THAT THEY ARE FAST TRACKING THESE DRUGS NOW.
NEXT THEY ARE GOING TO COMBINE YERVOY AND BRAF DRUGS FOR A TRIAL.

SO LOTS OF NEWS FOR TODAY.

ON ANOTHER NOTE-JANENE BROUGHT OVER BANANA BREAD YESTERDAY-YUMMY. SHE MAKES THE BEST BANANA BREAD. WE WENT OUT TO KOHLS FOR AWHILE-IT WAS NICE AND I GOT MY ANDRE ETHIER BOBBLEHEAD, ADAM RICHMAN BOOK AND A NEW CROCKPOT BOOK-THANKS JANENE!! I WONT EVENT TELL YOU WHAT SHE GOT-SHHHH. BUT CUTE FLIP FLOPS...
ALSO, ANYONE BEEN TO FIVE GUYS YET? GREAT HAMBURGERS!! THEY JUST OPENED ONE UP THE STREET AND I THINK THEY ARE BETTER THAN ANYONE ELSE AROUND. HINT-YOU DONT NEED MORE THAT ONE FRENCH FRY FOR SURE!!
KEEP EVERYONE UPDATED ON THE DRUG WHEN I HEAR SOMETHING.

HA=

LOOK AT THIS!

6am Feeding for Decadron and Study drug!

2011-08-17T07:23:00.000-07:00

6AM FEEDING FOOD
EGG WHITE QUICHE WITH GRUYERE N MUSHROOMS!

YES-HERE IT IS.
5AM MAKE COFFEE.
JUST TO WAKE UP TO HAVE FOOD BY 6AM-HA

EGG WHITE QUICHE MADE IN CROCK POT WITH GRUYERE N MUSHROOMS. SO GOOOOD! GREEK YOGURT WITH BERRIES, WHOLE WHEAT TOAST.

IM HOPING TO SLEEP IN SOON!!!

WHEN DECADRON IS DONE AND STUDY DRUG IS APPROVED MAYBE I WONT HAVE TO NOT EAT FOR 4 OR 5 HOURS. I STILL HAVE TO TAKE ALL OTHER MEDS AT ABOUT 530AM OR 6AM-THEN STUDY DRUG AT 8 THEN NOTHING TILL 10AM.

ONCE THE STUDY DRUG IS APPROVED-LOOKING AT THE END OF OCTOBER I DONT THINK I WILL HAVE TO HAVE THE 4 HOUR WINDOW BUT IM NOT SURE. THE STUDY COMPANY JUST WANTED TO MAKE SURE THAT NOTHING INTERACTS WITH THEIR DRUG LIKE FOOD AND OTHER MEDS SO THEY SAY WATER ONLY FOR 2 HOURS ON EACH SIDE. I WILL MOST LIKELY GET THE STUDY DRUG WHEN APPROVED FROM MY PHARMACY AND THE COMPANY ALREADY CONTACTED DR OBARA HERE IN TOWN. THIS IS AT LEAST WHAT HE SAID. IT IS JUST PILLS NOT LIKE THE OTHER DRUG YERVOY THAT WAS INTERVENOUSLY GIVEN AND THE CANCER CENTER WASNT APPROVING. I AM GONNA WAIT AND SEE THOUGH BECAUSE IT STILL WILL HAVE TO GO THROUGH MY INSURANCE AND I AM REALLY NERVOUS ABOUT NOT BEING IN SANTA MONICA EVERY MONTH WHERE THE RESEARCH IS. DR OBARA SAYS IF THE DRUG IS NOT BEING PAID FOR ALONG WITH THE SCANS AND MRI THERE IS NO REASON NOT TO HAVE MY CARE HERE. BUT I REMEMBER WHEN HE TOLD ME THEY WOULD NOT GET YERVOY AND THERE WERE NO STUDIES OPEN HERE IN LAS VEGAS TOO.. SO I AM NOT CUTTING MY TIES WITH THE CLINIC UNTIL I AM SURE OF WHAT IS GOING ON WITH THIS DRUG.

AFTER REVIEWING ALL MY SCANS DR OBARA WAS HAPPY TO SEE THAT I AM RESPONDING SO WELL. EVERYTHING SEEMS TO BE DECREASING AND HOPEFULLY WILL CONTINUE TO DO SO.

I WILL CONTINUE TO WEAN OF DECADRON TRYING TO REACH 2MG A DAY TO SEE HOW I FEEL. HE STILL WANTS ME TO GO SLOW BECAUSE THERE IS STILL A LESION IN THE BRAIN EVEN THOUGH IT IS DECREASING THE ORIGINAL SURGERY AND THAT MAY BE WHY I WAS HAVING SO MUCH TROUBLE GETTING OFF THE STEROID COMPLETELY. HE SAID HE WOULD BE HAPPY TO SEE ME ON 2MG A DAY BUT I WONT. NOT UNLESS IT CAUSES A SIDE EFFECT THAT I CANT TOLERATE BUT I HAVE TO REMEMBER MY BRAIN IS NOT ALL CLEAR-SOMETIMES I FORGET! SO I WILL BE WORKING ON THAT AND THAT SHOULD HELP HOPEFULLY WITH NOT HAVING TO EAT SMALL MEALS BECAUSE OF SUGAR DROPS. THAT HAS ALREADY GOTTEN BETTER BUT ONCE A TAKE THE DOSE OF STEROID NEED TO HAVE SOMETHING IN ABOUT 1/2 HOUR.
I TOLD THE DOCTOR I FEEL LIKE THE BLUEBERRY GIRL FROM WILLY WONKA THATS GONNA EXPLODE!!! HE LAUGHED. MY MOON FACE AND FLUID SWELLING AND EVEN A BRUISE HERE AND THERE IS ALL CAUSED BY THE STEROID!! THESE ARE ALL BECAUSE OF THAT HE SAID!! EVERY LITTLE BIT YOU GO DOWN ON DECADRON EVEN1/4 OF MG CAUSES SOMETHING. YOUR FOOT TO SWELL ONE DAY, A BRUISE, YOU JOINTS TO HURT (THIS FREAKING HURTS) SO IT SUCKS BUT ITS WORTH THE AGGRAVATION. I JUST DONT WANT TO HAVE SOME SORT OF FACIAL SIEZURE BECAUSE OF SOMETHING STILL IN THE BRAIN. THE ONLY WAY TO KNOW IS TO TRY AND GET OFF COMPLETELY AND SLOWLY. MY FACE DOES GET THIS NUMBY FEELING SOMETIMES BUT I HAD A CRANIOTOMY FOR GODS SAKE!!

OKAY-SO THE ANT,PEST GUY COMES TODAY!!! OMG-THE ANTS GOT INTO NOODLES FOOD IN THE GARAGE AND WHAT A MESS. TIM AND SPENCER SPENT HOURS CLEANING UP THE GARAGE AND GETTING READY FOR PEST GUY TO SATURATE THE GROUNDS AROUND THE HOUSE. IT WAS GROSS BUT LUCKILY THEY DIDNT GET INTO THE PANTRY OR FOOD IN HOUSE BECAUSE YOU KNOW WHAT A WORSE NIGHTMARE THAT IS...TIM LOOKED FOR ANTS ALL DAY AND NIGHT YESTERDAY...NOBODY BELIEVED ME YOU HAVE TO BE CAREFUL OF LEAVING STUFF OPEN WHEN IT GETS HOT-NOW THEY BELIEVE ME!! RIGHT GIRLS!

SO THAT IS MY UPDATE FOR TODAY-MOSTLY DR CRAP AND FOOD-HA

MR NOODLES BEING A HAM!!

BYE...................

THEY CAN EAT!!!

2011-08-16T07:47:00.000-07:00

LOOK AT THESE MUGGS-
ROOT BEER FLOATS AND DING DONGS

GOTTA LOVE THESE FACES-RIGHT?

IT MAKES ME SMILE JUST TO KNOW THEY WERE HAVING A GOOD TIME LIKE KIDS SHOULD.

BACK TO DR OBARA TODAY-
CANT WAIT TO SHOW HIM ALL MY TEST RESULTS AND GET WEIGHED (JUST KIDDING)
I THINK HE WILL BE HAPPY ON THE RATE OF MY REDUCTION OF STEROID AND THAT MY SWELLING SEEMS MANAGABLE FOR NOW. ITS THE WEIGHT IM SURE HE WILL LOOK AT AND I DONT BLAME HIM.
MORE FLUID-MORE WEIGHT-GEEZ. I FEEL LIKE A LITTLE BLIMP. CANT WAIT TO START SHEDDING SOME OF THIS, HOPEFULLY JUST A FEW MORE WEEKS. NOT EATING ANY SUGAR OR BAD CARBS AND STILL EATING SMALL MEALS BUT IT DOESNT SEEM TO MATTER-WHEN YOU HAVE FLUID ITS JUST THERE!
ON THAT NOTE MIGHT AS WELL GO FOR PANCAKES WHEN I PICK UP SPENCER-OF COURSE THEY ARE BUCKWHEAT, DOES THAT CANCEL OUT THE PANCAKE PART? EVEN THOUGH I USE SUGAR FREE SYRUP?-HAH

HAVE TO BRAVE THE DMV AND DOCTORS IN ONE DAY-YUCK
HAD A CALL FROM THE CARING PLACE ABOUT A VOLUNTEER JOB-SOUNDS INTERESTING-CANT WAIT TO HEAR WHAT SHE SAYS TODAY.

MELANCHOLYOMA MENTIONED ME IN HIS BLOG TODAY-THANK YOU
MELANOMA MOM NEEDS A LITTLE STRENGTH THIS WEEK TO GET THROUGH HER NEXT TREATMENT-FINGERS CROSSED

OTHER PEOPLE ARE FIGHTING JUST LIKE ME AND I CAN DEFINITELY RELATE TO WHAT THEY ARE FEELING. WITH MELANOMA YOU LOOK OKAY MOST OF THE TIME SO PEOPLE DONT RELATE THAT YOU HAVE A DISEASE AND ARE SICK-BUT MAYBE THAT IS A GOOD THING AND SOMETIMES ITS NOT BECAUSE YOU ARE NOT FEELING GOOD. THEY REALLY JUST EXPECT YOU TO GO IN THE KITCHEN AND DO DISHES STANDING FOR PERIODS =YOU ARE IN PAIN BUT DO IT ANYWAY=OR JUST EXPECT YOU TO DO THINGS BUT DONT ASK IF YOU CAN EVEN DO THEM. BUT I THINK IT PROBABLY KEEPS YOUR MIND IN BETTER SHAPE INSTEAD OF POOR ME. PEOPLE FORGET-AND OFTEN THAT YOUR NOT SITTING ON THE COUCH BECAUSE YOU LIKE RERUNS OF THE NANNY. EVERYONE GETS A LITTLE DOSE OF THIS NOW AND THEN SOMETIMES IT JUST GETS FRUSTRATING WHEN YOUR THINKING-GEEZ I HAVE TO GET UP AGAIN ON THAT LEG....OR ITS KINDA HARD TO BREATH BUT OH WELL-SHOULD I CLEAN THE BATHROOM FLOOR?--HAHA-THATS HOW WOMEN ARE ANYWAY-THEY ARE USED TO TAKING CARE OF EVERYONE. HOW ARE YOU-REALLY? WELL EXCEPT FOR THE 20 OR SO TUMORS AND THE FACT I CANT BREATH IM OKAY-HOW ARE YOU? OKAY,, ENOUGH PITY PARTY.

SO BACK TO REALITY FOR SPENCER. LETS SEE HE HAS BEEN WORKING ON HIS WRITTEN DMV TEST-WELL KINDA. IF HE EVER GETS MOTIVATED TO TAKE THE TEST IT WILL BE A MIRACLE! IM NOT GONNA TAKE THE TEST FOR HIM SO HES GONNA HAVE TO FIGURE THIS ONE OUT ON HIS OWN. HE MIGHT BE WALKING TILL HES 18 AT THIS POINT. SO TIME TO GET READY AND RUN AROUND-FULL DAY OF ERRANDS AND GETTING MY FAT ARSE IN AND OUT OF THE CAR-THATS FUN ON ITS OWN BY THE WAY. BUT ITS BETTER THAN STAYING HOME 24/7. THAT WILL DRIVE YOU ABSOLUTELY BATSHIT-AT LEAST ME!

SO 2PM DECADRON REDUCTION 1/4MG. HOPE THIS ONE WORKS WITHOUT HEADACHE! CROSS YOUR FINGERS.

OH AND SWORDFISH-POOR BABIES!

WELL FED!

CORY AND SPENCE CHOKING DOWN SALAD!

OH AND SPENCERS STUFFED SHRIMP-REALLY???? SEE YA NEXT TIME.......................
BYE...................

SUNDAY/DECADRON HEADACHE!

2011-08-14T10:57:00.000-07:00

LOOK AT THOSE CRAB LEGS TIM ORDERED!

IM SO TIRED OF DECADRON HEADACHES I COULD SCREAM!! TRY AND LOWER DOSE A 1/4 OF A MG AND YOU STILL GET A HEADACHE SOMETIMES. IT ALSO FEELS LIKE SOMEONE IS CRUSHING YOU-TAKING THE WIND OUT OF YOU! THIS IS RIDICULOUS BUT IM GONNA HOLD OUT TODAY.
HOPEFULLY TOMORROW DR OBARA WILL AGREE WITH DR HAMID TO SWITCH ME TO CORTISTEROID WHICH HAS MUCH LESS SIDE EFFECTS AND IS EASIER TO WEAN OFF OF SUPPOSEDLY! I READ THAT IS THE WAY TO GO INSTEAD OF WEANING OFF DECADRON. IM AT 4 1/2 MG AND ITS STILL GONNA TAKE FOREVER. I THINK IF THEY LET ME SWITCH THE WEANING WILL BE MUCH EASIER EVEN IF I HAVE TO START AT A HIGHER DOSE INITIALLY. DR HAMID SAID THAT DR OBARA MIGHT NOT AGREE WITH HIM SO HE WANTED TO TALK TO HIM DR TO DR BUT THERE HAS TO BE A BETTER WAY!
POOR TIM-HE HAS TO DEAL WITH MY HEADACHES AND I DONT WANT TO TAKE THE EXTRA DECADRON BECAUSE THAT DEFEATS THE PURPOSE OF WEANING. ITS LIKE A BIG VICIOUS CYCLE OF HELL!! MOON FACE IS STILL PREVALENT-I LOOK LIKE THE MOON ATE TO MUCH! GEEZ-MOON FACE WAS SUPPOSED TO GET BETTER THE LESS STEROID YOU TOOK-I DONT SEE ANY IMPROVEMENT-JUST ONE BIG FAT FACE! ALSO THE PHARMACIST AT THE ANGELES CLINIC SAID THE SWELLING HAPPENS IN YOUR STOMACH LIKE YOUR FACE. WELL SHE IS RIGHT-I WAS WONDERING WHY YOU FEEL LIKE YOUR SO FULL SOMETIMES WHEN YOU HAVENT EVEN EATEN-WELL NOW I KNOW. IM LIKE YOU CANT BREATH-FEELS LIKE YOUR OUT OF BREATH, BECAUSE EVERYTHING HAS FLUID IN IT-GREAT! SO SOMETIMES DEPENDING ON WHAT TIME IT IS ITS HARD TO WALK AROUND AND CATCH YOUR BREATH. JUST ANOTHER SIDE EFFECT FROM MEDICATIONS.
LETS SEE-MED LISTS

STUDY MEDS-TWICE A DAY
KEPPRA-SEIZURE MED-TWICE A DAY
NEURONTIN-NERVE MED-THREE TIMES A DAY
PROTONIX-STOMACH MED FOR DECADRON
DECADRON=HELL MEDICINE-THREE TIMES A DAY
ACTADATONE-WATER PILL
LASIX-HORSE WATER PILLS-HA

A BUNCH OF OTHER SHIT AND MEDS I DONT TAKE BECAUSE I REALLY DONT NEED IT. TRY AND KEEP THIS ALL STRAIGHT. IT TAKES CAREFUL PLANNING JUST TO KEEP IT ALL STRAIGHT. ITS CRAZY!

I GUESS LIFE ISNT SO NORMAL WHEN YOUR DEALING WITH THIS STAGE OF CANCER BUT YOU JUST WANT TO FORGET IT TAKES AN ACT OF GOD TO GO TO THE STORE!

SORRY TIM-I HOPE EVERYONE NEVER HAS TO KNOW HOW THIS CRAP FEELS-IT SUCKS. AND OUR YARD IS INVADED BY ANTS.
HAS ANYONE SEEN THE HELP-I HEARD ITS GREAT AND WANT TO GO SEE IT-MAYBE THAT WILL TAKE MY MIND OFF EVERYTHING.

SPENCER COMES HOME TODAY-I BET HE CANNOT WAIT TO BE BACK IN THIS HEAT!
TIME TO GET READY FOR SCHOOL-HA. TIME TO CUT THE LAWN AND CLEAN UP DOG POOP!!

CAN YOU SEE OUR MOON FACES? WELL MINE
TIM TRYING TO HIDE MINE FOR ME-
GROSS-

BYE SANTA MONICA........

BEACH N FOOD

2011-08-12T19:55:00.000-07:00

THE GUYS IN SANTA MONICA/SPENCER-WHERE'S YOUR EYES?

HERE IS WHAT YOU GET FROM A TEENAGE BOY---OKAY-YEAH-WHAT-HUH---

THAT IS THE EXTENT OF YOUR CONVERSATIONS-HAH

THIS IS WEDNESDAY ON OCEAN AVE FOR DINNER AFTER ALL THE TESTS WERE DONE--YUM

HERE IS THE NEWS FROM THE TESTS--

THE TUMORS FROM THE CAT SCAN HAVE SHOWN THAT THEY ARE DECREASING AFTER 2 MONTHS. THE SCANS OF MY BODY TUMORS HAVE DECREASED APPROXIMATELY 26%. THAT IS A QUARTER OF WHAT THEY WERE AND WHEN YOU THINK OF THAT IN CANCER TERMS YOU HAVE TO THINK THAT IS SIGNIFICANT WHEN IT COMES TO A TUMOR SHRINKING. I WON'T GO INTO WHERE EVERYTHING IS LOCATED (TO MANY) BUT MOST EVERYTHING HAS DECREASED. 26% IS THE PERCENTAGE THE DOCTOR USED AND HE WAS REALLY HAPPY TO SEE THIS. HE SAID THE DRUG USUALLY DOES THIS FOR ABOUT 7 MONTHS BUT THAT IS JUST A STATISTIC AND EVERYONE HAS DIFFERENT RESULTS-HOPEFULLY IT WILL LAST ALOT LONGER FOR ME. THEY ARE OPENING UP NEW STUDIES BY COMBINING MY DRUG WITH SOMETHING ELSE BUT I WONT BE CHANGING ANYTHING UNLESS THE DRUG STOPS WORKING.
WHEN WE GOT TO THE DOCTORS WE HAD TO SIGN PAPERS BECAUSE THE DRUG I AM TAKING IS GONNA BE APPROVED BY THE END OF OCTOBER. DR HAMID WANTS US TO KEEP COMING TO SANTA MONICA SO WE WILL CONTINUE THE DRUG AND BE MONITORED THERE. HE SEEMS TO THINK PEOPLE BECOME COMPLACENT AND DONT FOLLOW THEIR CARE AS GOOD WHEN THEY STOP COMING. HE ALSO FEELS I SHOULD BE WHERE THE RESEARCH IS FOR SURE AND THAT IS IN SANTA MONICA RIGHT NOW. WE TOLD HIM WE WERE STAYING THERE AND WE WERE COMFORTABLE WITH THE CARE BETWEEN HIM AND DR OBARA. I GUESS PEOPLE WHO LIVE IN SALT LAKE TEND TO STAY THERE BECAUSE OF THE BIG CANCER CENTER THERE BUT THERE IS STILL NOTHING IN VEGAS, SO IF YOU CAN SWING THE HOTEL ROOM AND DRIVE YOU SHOULDNT MESS AROUND BY NOT GOING TO LA. LOOKS LIKE WE WILL GET ABOUT 3 MORE MONTHS WORTH OF THE DRUG AND THEN THEY WILL WORK WITH GENENTECH AND INSURANCE TO MAKE SURE WE KEEP GETTING IT AS LONG AS ITS WORKING. REMEMBER THERE IS ABOUT 500 PEOPLE IN THE COUNTRY DOING THIS STUDY SO IF YOU ARE ALREADY TAKING IT I HOPE IT WILL BE EASIER TO GET FROM YOUR INSURANCE-BUT WHO KNOWS-I GUESS WE WILL WAIT AND SEE. I KNEW THE DRUG WAS GETTING APPROVED AND WAS WAITING TO SEE WHAT WAS GOING TO HAPPEN WHEN WE TALKED TO THE DOCTOR--SO I WAS ALREADY ANTICIPATING THIS LITTLE SCENARIO.

THE MRI OF THE BRAIN SHOWED SHRINKAGE OF THE SMALL TUMOR THAT WASN'T REMOVED AND HOPEFULLY IT WILL CONTINUE TO SHRINK. THE LARGE MASS THAT WAS REMOVED SHOWED NOTHING ELSE! I TOLD DR OBARA LAST WEEK MY BRAIN WAS DOING BETTER BUT HE THINKS IM CRAZY ANYWAY.

SO FOR NOW I WILL BE TAKING THE STUDY DRUG AND GOING BACK TO LA IN 4 WEEKS FOR MORE AND DERMATOLOGIST APPT.-TRYING TO GET OFF STEROID AND HOPEFULLY KEEPING THE SWELLING UNDER CONTROL. DR HAMID WANTS TO TALK TO DR OBARA ABOUT SWITCHING TO A STEROID THAT WILL CAUSE LESS FATIGUE AND CONTINUE TO WEAN ME OFF. IM AT LESS THAN 5MG NOW ALMOST 4 1/2 SO NOT TO MUCH MORE TO GO!!

LOOKING THRILLED-OCEAN SEAFOOD!

LOBSTER TAQUITOS!!!

OYSTERS ROCKEFELLER!!

UMAMI BURGER--YUMMY-BEACH TIRED!

UMAMI DESSERT--

OH-THERE'S YOUR EYES

SEE YA

BEACH HOTTIE---
BYE...............

Santa Monica/Thursday

2011-08-11T06:58:00.000-07:00

SO TRANQUIL...

SO WE STARTED THE TESTS AT 930AM AT THE ANGELES CLINIC.
HAD TO DRINK A GIANT BANANA CONTRAST SHAKE FOR CAT SCAN AND GET HOOKED UP FOR CONTRAST IV SO THEY COULD SHOOT DYE IN ME. OHHH THATS FUN YOU GET TO FEEL ALL HOT AND LIKE YOUR GONNA PEE-EWHH.
THAT TOOK ABOUT AN HOUR THEN HAD TO DRIVE TO MRI IMAGING WITH THE IV IN MY ARM. THEY WERE USING A NEW IMAGING PLACE AND WE WERE THERE FOREVER. WENT FROM ROOM TO ROOM. SIT HERE WE WILL BE BACK TO GET YOU WAS THERE FAVORITE SAYING. BY THE TIME I GOT OUT OF THERE IS WAS 1PM! I WAS STARVING! THERE WAS ALOT OF NEW PEOPLE AND WORKERS THERE-YOU COULD DEFINITELY TELL. THEY HAD NONE OF MY RECORDS AND REALLY DIDNT KNOW ANYTHING ABOUT ME OR WHY I WAS THERE. YOU JUST PUT WHAT THIS WAS A FOLLOW UP TO-SO I PUT MELANOMA.
WELL AFTER THE TEST-ONE OF THE RADIOLOGISTS COMES OUT AND SAYS TO TIM WHO WAS TOTALLY IN SOME OTHER ROOM FROM ME---YOU KNOW SHE HAS A LESION (ON HER BRAIN) WELL IT TOTALLY CAUGHT HIM OFF GUARD!!! FIRST OF ALL-IF HE WAS GONNA SAY SOMETHING IT SHOULD HAVE BEEN TO ME! THE REPORTS ARE SENT TO DR HAMID ELECTRONICALLY AND HE IS THE ONLY ONE THAT SHOULD HAVE APPROACHED ME OR TIM AT ALL! OH BY THE WAY---NO SHIT I HAVE A LESION---WE KNEW THAT, THAT IS WHAT WE HAD CYBERKNIFE FOR. BUT HE DOESN'T SAY ANYTHING ELSE. THEY DIDNT KNOW I HAD A CRANIOTOMY 4 MONTHS AGO AND THEY HAD NOTHING TO COMPARE MY MRI TO BECAUSE THE LAST ONE WAS DONE AT A DIFFERENT IMAGING CENTER. SO I DONT KNOW IF IT CAUGHT THEM OFF GUARD OR WHAT-BUT YOU TALK TO THE PATIENT OR DOCTOR-WHAT WAS THIS GUY THINKING??? THEY WERE WHISPERING SO TIM KNEW THEY WERE TALKING ABOUTI ME AND IT MADE HIM SO NERVOUS BUT THIS IS JUST A NEW IMAGING CENTER!! THE ANGELES CLINIC JUST STARTED SENDING PATIENTS THERE SO IM SURE ALOT OF THE STUFF IS NEW THEY ARE SEEING-ESPECIALLY A STAGE 4 MELANOMA PATIENT! I DIDNT KNOW ABOUT THIS UNTIL WE LEFT OR I WOULD HAVE ADDRESSED IT IMMEDIATELY!! I WANTED TO GO BACK BUT WE DIDNT. YOU DONT SAY SOMETHING ABOUT SOMEONES MEDICAL INFO LIKE THAT-VERY DISSAPOINTED WITH THESE PEOPLE. I WILL TELL DR HAMID WHAT HAPPENED TODAY BUT HE NEEDS TO ADDRESS THAT SITUATION. POOR TIM WAS UPSET THE REST OF THE DAY. EVEN THOUGH WE KNEW IT WAS THERE IT IS STILL HARD TO HEAR IT OUT LOUD BY A STRANGER! VERY UNPROFFESIONAL OF THIS MAN!
SO ON TO THE 1PM APPT. TODAY
NOW IT MAKES THE ANTICIPATION WORSE TO SEE THE DOC. EVEN THOUGH YOU CANT FEEL ALOT OF THE TUMORS ON THE OUTSIDE ANYMORE YOU REALLY DONT KNOW WHATS GOING ON INSIDE--
LOOKS LIKE THE STUDY DRUG IS UP FOR APPROVAL ON OCTOBER 28TH-HAVE TO FIND OUT HOW THAT WORKS ALSO SINCE I AM ALREADY ENROLLED IN THE STUDY. IT IS WORKING SO WELL FOR PATIENTS THEY MOVED UP THE APPROVAL DATE-I DONT KNOW IF I SHOULD BE WORRIED OR HAPPY?
TO MUCH UNKNOWN THIS TIME-MAKES EVERYONE ANXIOUS.
SO HERE I SIT EATING MY 6AM BREAKFAST IN THE HOTEL ROOM AS USUAL. CANT EAT UNTIL AFTER 10 NOW AND ALL THE STUDY DRUGS AND STEROIDS. EGG WHITES ARE MY FRIEND!!
WENT OUT TO DINNER WITH JOE,SPENCE,CORY AND TIM LAST NIGHT IN SANTA MONICA. OCEAN SEAFOOD-GREAT FOOD-POST PICS LATER CUZ I FORGOT MY PLUG FOR CAMERA FOR A CHANGE. KIDS WERE GOING TO BEACH TODAY AND WE WILL SEE THEM FOR DINNER AGAIN TONIGHT. THEY ARE IN HEAVEN-2 TEENAGE BOYS WITH THERE OWN ROOM ON THE BEACH--REALLY? THEY WERE ON THE PEIR AND GOING BOOGIE BOARDING TODAY. SO MUCH FUN FOR THEM. WISH I DIDNT HAVE TO GO TO DOCTORS AND COULD SPEND SOME MORE TIME WITH THEM.

ANYWAY-UPDATES LATER
KEEP FINGERS CROSSED FOR RESULTS!!

SEE YOU........................................

OFF TO SANTA MONICA AGAIN!

2011-08-09T06:05:00.000-07:00

PRETTY PIGGIES AGAIN

NO SWELLING! YAYE

OFF TO SANTA MONICA TODAY. WEDNESDAY AND THURSDAY TESTS AND SEE DOCTOR ON THURSDAY AFTERNOON.
JOE AND SPENCER AND CORY ARE COMING DOWN TO THE BEACH ALSO FOR A FEW DAYS FOR A VACATION. IT WILL BE FUN FOR SPENCE. I WONT BE ABLE TO GO TO THE BEACH BECAUSE OF ALL THE TEST SCHEDULING BUT I CAN MEET THEM FOR DINNER AND HANG OUT A LITTLE

ORIGINALLY WE WERE GONNA MAKE IT MORE OF A VACATION BUT AFTER ALL THE FEET SWELLING THAT DIDNT WORK OUT SO GOOD. SO WE ARE JUST GONNA PLAY IT BY EAR AND ONLY DO WHAT IM UP TO. CANT PLAN ANYTHING BECAUSE SOMETHING ALWAYS COMES UP UNEXPECTED LIKE THAT.
BEEN WORKING ON TRYING TO GET TIMS CAR TO PASS SMOG-WHAT A JOKE HOW MUCH THEY WANT FROM THE DEALERSHIP TO GET IT TO PASS. BETTER OFF BUYING A NEW CAR IF YOUR MAIN MECHANIC CANT PASS IT!

CANT WAIT TO GET OUTTA THE HEAT HERE. ITS ONLY 70 DEGREES IN LA AND THE BEACH SHOULD BE SO NICE RIGHT NOW. WAHOOS HERE I COME~

BACK TO SANTA MONICA!!!

SEE YA SOON!

PRETTY FEET AND TOES

2011-08-07T15:42:00.000-07:00

PRETTY FEET AGAIN-

LOOK AT MY PRETTY FEET AND TOES!

SKINNY TOES AND PAINTED NAILS. NO SWOLLEN FEET OR ANKLES! ITS A MIRACLE--

LITTLE SAUSAGE TOES ARE GONE.

2 WEEKS ALMOST WITH SAUSAGE FEET IS ENOUGH TO DRIVE ANYONE INSANE.

OKAY SO NEW CAMERA AND MUCH EASIER SOFTWARE TO USE-GEEZ. DONT BUY SAMSUNG ANYTHING!

TOMORROW IS MONDAY AND GONNA GET READY FOR SANTA MONICA AGAIN. TIM HAS TO GO BACK TO WORK TOMORROW FOR A DAY BUT THEN WE ARE LEAVING ON TUESDAY TO HEAD BACK TO CALIFORNIA-FOOTBALL SEASON IS JUST AROUND THE CORNER-YUCK. I AM SURE PEOPLE WILL BE ASKING HIM TO WORK ALL THE TIME SOON.
THE LAST 2 WEEKS HAVE BEEN MORE THAN TRYING WITH THE SWELLING. IT PUT ME RIGHT BACK ON THE COUCH FOR TO LONG AND TRY NOT GETTING DEPRESSED WHEN YOU CAN HARDLY GET UP TO GET OVER TO THE BATHROOM!.. YOU DON'T WANT TO WALK ON YOUR FEET BECAUSE THEY HURT AND YOU DON'T KNOW IF THEY ARE GONNA GO DOWN AND HOW LONG IT IS GONNA BE. IT COULD OF STAYED SWOLLEN BECAUSE I AM DOWN ABOUT 40 LYMPH NODES IN MY LEFT LEG-LETS NOT FORGET THAT! THERE WAS ALWAYS A CHANCE THAT WOULD DEVELOP SO I WAS REALLY WORRIED THATS WHAT WAS HAPPENING. I THINK THE DECADRON BEING REDUCED AGAIN IS HELPING-HOPEFULLY. I HAVE TO WORK ON THAT CONSTANTLY BECAUSE I NEED TO BE OFF OF IT TO GET A COMBINED TREATMENT WITH YERVOY IF NEEDED EVENTUALLY. THEY ARE SETTING UP COMBINED STUDIES WITH THE BRAF DRUG ALTHOUGH ITS NOT OPEN YET IT COULD BE ANOTHER OPTION DOWN THE ROAD. CAN'T BE ON STEROIDS THOUGH.

ITS STILL HARD TO GET UP ON MY LEFT LEG WITHOUT BEING PULLED OUT OF THE CAR BUT NOTHING LIKE IT WAS. EXCERCISE A LITTLE (WALKING AROUND STORE) EVERYDAY BUT THAT ONLY HELPS A LITTLE-THAT LEGS A MESS ANYWAY.

CAN'T WAIT TO GET OUTTA THE HEAT HERE. CALIFORNIA WEATHER SHOULD BE NICE AT LEAST. HOPEFULLY IN BETWEEN TESTS AND DOCTORS WE CAN ENJOY THE WEATHER AND SOME FOOOOD.
I CAN'T BELIEVE ITS ALMOST BEEN 4 MONTHS SINCE THIS WHOLE ORDEAL STARTED.
2 MONTHS OF BRAIN SURGERY CRAP AND I HAVE BEEN ON THE STUDY DRUG 2 MONTHS ALONG WITH OTHER STUFF GOING ON NOW. I CAN'T WAIT TO SEE WHAT THE MRI OF MY BRAIN IS GONNA SAY THIS TIME. THIS IS THE 1ST COMPARISON DR OBARA WILL REALLY HAVE SINCE THE BRAIN SURGERY. HE IS ANXIOUS TO SEE THIS MRI. I CAN TELL YOU THAT NO CYBERKNIFE IS EVER TOUCHING BE AGAIN. I HAVE NOT HEARD ONE GOOD STORY FROM ANYONE ABOUT THAT TREATMENT-NOT ONE POSITIVE THING-AND THAT IS HARD TO BELIEVE. NOT ONE PATIENT HAS SAID TO ME IT BENEFITED THEM. THEY EITHER HAVE SEIZURES OR SIDE EFFECTS NOW OR IT JUST GROWS BACK, SO WHATS THE POINT? IT ALWAYS GETS WORSE-NOT ONE PERSON SAID IT WORKED GREAT! I JUST THINK THEY DONT KNOW WHAT ELSE TO DO ONCE MELANOMA SPREADS. NOW IF IT WAS A DIFFERENT KIND OF TUMOR I AM SURE IT MIGHT HELP. ALL I GOT WAS A BALD SPOT AND A FEW FACIAL SEIZURES. I AM SURE THE STUDY DRUG IS WHAT IS HELPING THE BRAIN. YOU CAN FEEL IT WORKING ALMOST. IM SURE THERE IS SOMETHING GOING ON IN THERE BUT HOPEFULLY NOT BLEEDING TUMORS BECAUSE IT WAS BLEEDING WHEN WE HAD THE LAST MRI BUT THEY WAITED TO SEE IF THE STUDY DRUG WOULD DO ANYTHING BECAUSE WHAT WAS THE POINT OF DOING ANYTHING ELSE. I TOLD DR OBARA NO MORE CYBERKNIFE AND HE JUST LOOKED AT ME BECAUSE THE DOCS IN LA SAID I COULDNT HAVE IT WITH THIS DRUG-SO THATS THAT. SO THATS ALL THE UPDATES FOR TODAY-HAVE A GOOD SUNDAY!

SCARY-BYEEEEEEEE

Friday Feet

2011-08-05T20:09:00.000-07:00

SO MY FEET LOOK BETTER TODAY.
LOOKS LIKE THE SWELLING IS LEVELING OUT ALMOST GONE BUT IM KEEPING MY FINGERS CROSSED!

THEY ARE DEFINITELY NOT AS SWOLLEN FOR SURE.

NOTHING MUCH GOING ON TODAY.
TRYING TO GET MY CAMERA BATTERY CHARGED AND ITS JUST NOT WORKING.
MADE A GREAT FRITTATA THIS MORNING WITH EGG WHITES, MUSHROOMS, (STEAMED MUSHROOMS IN TUPPERWARE FOR ABOUT 5 MIN. AND DRAINED WATER OFF) CHEESE, SPINACH ,COTTAGE CHEESE (GOT RECIPE FROM PAULA DEEN) SALT, PEPPA, PUT IT ALL IN THE CROCKPOT ON HIGH FOR ABOUT AN HOUR AND A HALF AND WALLA!!!! ITS SET TO GO AND CUT. IT IS SO EASY-MAKE SURE TO USE PAM. GREAT WITH MUSHROOMS AND LASTS FOR A COUPLE OF DAYS. THIS IS 6AM BREAKFAST WITH TOAST AND COFFEE-TRY IT WITH REGULAR EGGS TOO-ITS GREAT! ANYWAY COULDNT TAKE A PICTURE BUT I WAS IMPRESSED.

WAITING JUST TO GO TO LA NOW. PASSING TIME WITH COOKING AND LASIX-HAH.

DOWN TO 5MG DECADRON-DONT HOLD YOUR BREATH-GEEZ-TORTURE
REDUCING EVERY SO MANY DAYS AT NIGHT NOW. I READ YOU SHOULD ONLY REDUCE EVERY 6 DAYS-I WILL BE DOING THIS FOREVER AT THAT RATE.

WENT TO SUSHI FEVER TONIGHT. OMG-BEST SUSHI EVER. TIM AND I ATE AND WE WERE SO FULL. THEY HAVE THIS NEW SALAD WITH SUSHI CALLED THE ALLY SALAD AND I HAVE NEVER HAD SUCH GOOD SUSHI-YUM. WE ATE BEFORE 6 THEN I CANT EAT TILL 10 SO I STUFFED MY FACE BUT WITH FISH-GOTTA GO THERE JUST FOR THAT! THIS IS THE SECOND TIME I ATE THIS AND EVERYTIME I CANT BELIEVE HOW GOOD IT IS AND YOU KNOW HOW PICKY I AM WITH SUSHI-VERY PICKY.

GOODBYE............................
AHHHHHHHHHHHHH

Thursday/Normal feet??

2011-08-04T06:17:00.000-07:00

FOOT LOOKS NORMAL TDAY??

OMG-MY FOOT LOOKS NORMAL TODAY-NO WAY

OKAY -WALLA -ITS GONE-WHERE DID THE FLUID GO? I AM GONNA HAVE TO WAIT AND SEE-CROSSING MY FINGERS!! MUST BE ALL THE GOOD FOOD I HAVE BEEN EATING. I SHOULD DO A COMMERCIAL FOR WHOLE FOODS AND NO SUGAR OR LOW SUGAR IN YOUR DIET. I SWEAR MY BODY HAS TO BE LOVING ALL THE GOOD FOOD FINDING ITS WAY IN THERE. YOU FEEL SO GOOD WITH EVERYTHING YOU ARE PUTTING IN YOUR BODY SO I GUESS IT DEFINITELY IS A PLUS BECAUSE YOU COULD BE EATING TWINKIES ALL DAY STILL. ALL THE JUNK FOOD DOES MAKE YOU FEEL BETTER-IT SATISFIES SOME WEIRD COMFORT FOOD THING YOU THINK YOU NEED WHEN YOU GET SICK. BUT I SWEAR WHEN I EAT A BUNCH OF SUGAR NOW I GET A HEADACHE AND MY BODY HURTS!!
THEY SAY CANCER CELLS ATTRACT SUGAR THATS WHY THE SPOTS LIGHT UP ON THE PET SCANS WHEN YOU INJECT SUGAR WATER INTO YOUR BODY FOR THE SCANS. THAT ISNT JUST A COINCIDENCE YOU KNOW? I GET A MASSIVE HEADACHE AFTER EVERY PET SCAN LIKE THE HEADACHE FROM HELL!!!! ITS PURE SUGAR WATER-GEEZ.
WENT TO THE MOVIES AGAIN YESTERDAY! SAW HORRIBLE BOSSES. FUNNIEST MOVIE I HAVE SEEN IN AWHILE! I WAS LAUGHING ALL THE WAY THROUGH THE MOVIE-I HIGHLY RECOMMEND YOU SEE THIS ONE-AND I DONT LAUGH THROUGH MOVIES USUALLY.
SANTA MONICA HERE WE COME IN A FEW DAYS. HOPE THE WEATHER THERE IS SO MUCH NICER-IM SURE IT WILL BE. 2 DAYS WORTH OF TESTS AND DOCTORS.
ARRIVE TUESDAY NIGHT
9AM WEDNESDAY-CAT SCAN AND NASTY BANANA DRINK FOR SCANS
11AM WEDNESDAY-MRI OF BRAIN(YAYE) THE KNOCKING IS LIKE HELL INSIDE A SMALL TUBE===DRIVE AROUND WITH NEEDLES IN ARM TO GET THERE SO THEY DONT HAVE TO STICK ME AGAIN, HOPEFULLY!
THURSDAY 1PM-MEET WITH LA DOCS
GO OVER TESTS
GET TESTS FOR DR OBARA-DO BLOODWORK-MORE BLOODWORK-GET MORE STUDY DRUG-HOPEFULLY
THAT SHOULD TAKE UP THE WHOLE DAY KNOWING HOW THE RESEARCH TEAM GOES. IT TAKES A LITTLE TIME TO GET THROUGH THAT LAST APPT.
HOPEFULLY-GO DOWN TO BEACH TO EAT THURSDAY-WOULDNT THAT BE NICE
OR LEAVE, SOMETIMES WE JUST WANNA GET OUTTA THERE!!! BUT A NICE DINNER WOULD BE GREAT AS LONG AS THE RESULTS MAKE US WANNA EAT.....I NEED A VACATION!!! LIKE 2 DAYS JUST DOING NOTHING-READING, LOOKING AT THE WAVES, EATING, MAYBE NOT THINKING ABOUT ANYTHING AT ALL. SOUNDS LIKE A DEAL AND IM GONNA WORK ON IT WHEN I GET HOME OR MAYBE IN CALIFORNIA. A 2 DAY SABATICAL JUST FOR PEACE OF MIND=NOT A BAD IDEA. IF I CAN WALK I AM GONNA DO IT! ALL SUMMER IS ALL I THINK ABOUT IS NEXT DOCTORS APPT SO WHY NOT THINK ABOUT SOMETHING FUN FOR A COUPLE OF DAYS? PLENTY OF SHOPPING IN SANTA MONICA WITHIN ABOUT A 5 BLOCK RADIUS-HOW FUN? WELL WE WILL SEE-IM GONNA CHECK IT OUT. I THOUGHT ABOUT DOING IT HERE BUT IT JUST DOESNT SEEM AS FUN IN LAS VEGAS.

SERENITY NOW

SWOLLEN EWHHHHHHHHHHHH

SPENCE ON THE ROOF OF A BLDG NEAR GOLDEN GATE PARK
SEE YA
GOODBYE....................................

RAN

Wednesday update/waterpill is my new friend!

2011-08-03T05:28:00.000-07:00

WEDNESDAY

MY BEST NEWEST FRIENDS-MR LASIX AND CREW~~MR ALACTADONE AND WATER

WISH I WAS THERE!
WHERE AM I?

SO HERE ARE MY NEW FRIENDS--MR WATER PILLS MAKE NICE THE DOCTOR TELLS ME UNTIL WE CAN GET YOU OFF ALL THE STEROIDS COMPLETELY. YAYE, ....
MY FEET DO LOOK ALOT BETTER AND THE SWELLING IS DOWN NOW THOUGH NOT COMPLETELY, BUT I HAVE TO TAKE THESE THINGS FOR AWHILE IT LOOKS LIKE-YUCK.
SO I HAVE THOSE SHOES LIKE BIRKENSTOCK WHICH ARE REMARKABLY COMFORTABLE AND I WOULD NEVER HAD BOUGHT THOSE BEFORE, BUT I FOUND SOME CUTE ONES AND THEY FIT SO WHAT THE HELL!! DOCTOR SAID MY BLOODWORK LOOKS A LITTLE BETTER-MY PLATELETS ARE UP AND TUMOR MARKERS ARE DOWN BUT MY SUGAR FROM THE STEROID IS STILL HIGH-DUH. SO I WAS THERE FOR ALMOST 2 HOURS. MY WEIGHT WAS ALREADY DOWN 2 POUNDS FROM FLUID=I GUESS THIS WILL BE AN ONGOING THING. AT LEAST I CAN WALK AND ITS NOT PAINFUL ANYMORE!!
THEY EXPEDITED MY COBRA AND SUPPOSEDLY IT SHOULD HAVE BE TOTALLY KICKED IN BY YESTERDAY WHERE IT WOULD NORMALLY TAKE ALOT LONGER..RIDICULOUS. I DID GET A CALL SAYING IT WAS TAKEN CARE OF AND SHOULD BE ABLE TO USE MY PRESCRIPTION CARDS AND INSURANCE BY YESTERDAY. IT WAS NICE OF THEM TO DO THAT BUT I AM SO SURPRISED AT THE LAPSE YOU HAVE TO TAKE IN COVERAGE EVEN THOUGH YOU CAN SUBMIT THE MONEY FOR PRESCRIPTIONS BACK-YOU KNOW WHAT A PAIN THAT IS RIGHT??
THEN EVERYTHING PILES UP, YOU LOSE RECEIPTS AND SO ON. SO I FEEL OKAY-STILL HAVE QUITE A BIT OF FATIGUE,, BUT DOESNT SEEM TO BE AS BAD. IT HAS SOMETHING TO DO WITH THE STEROID..IT PUTS YOU UP AND THE STUDY DRUG TAKES YOU WAY DOWN. I TRY AND GET OUT EVERYDAY AND I DO ESPECIALLY NOW THAT I CAN WALK-BIG DIFFERENCE IN STATE OF MIND-WHO WANTS TO SIT ON THE COUCH EVERYDAY? NOT ME. I HEARD THE CONTEST WENT WELL AT THE GOLD COAST. GOOD JOB EVERYONE OVER THERE. I MISSED THAT ONE BEFORE 6 YEARS AGO BUT IT IS A LITTLE MORE LAYED BACK WHEN THERE IS NOT AS MANY PEOPLE. THANKS TOM, JOE, GEORGE AND OF COURSE MY DEB-EVEN THOUGH IM NOT THERE I AM STILL PROUD OF WHAT A GREAT JOB YOU GUYS DO!!!

MISS YOUS

CONTEST FUN!

RAY~

AHHHHH

SEE YOUNS LATER
BYE.........................

FRENCH DIP BRISKET

2011-08-01T19:31:00.000-07:00

SPENCER RAIDING KITCHEN FOR SANDWICHES

YUMMMMM

BRISKET-CAN YOU SAY FRENCH DIP?

MUSHROOMS, ONIONS FRENCH DIP

SO WE MADE FRENCH DIP BRISKET SANDWICHES. EVERYONE SHOWED UP. I HAVE TO ADMIT THEY WERE SO GOOD EVEN I SHOWED UP FOR MEAT. SO IN THE MEANTIME I WENT TO THE DR. SO HE COULD LOOK AT MY FEET AND WEIGH ME AGAIN! HE SAID MY FEET LOOKED BETTER AND THEY DO BUT ARE STILL SWOLLEN BELLOW ANKLES. HE SAID OH THEY LOOK MANAGEABLE-WHAT DOES THAT MEAN? WELL I GUESS THEY DO BUT OOHWW YUCK. SO HERE I AM SHOWING OFF ALL THIS STANDING BETWEEN THE DOCTOR AND NURSE HAH. KATIE IS LIKE SHE GAINED A POUND DR OBARA WHAT DO YOU WANT TO DO? ARE YOU KIDDING-A POUND? THEY ARE LUCKY I HAVENT EATEN THEM!! HAH. SOMETIMES IM STARVING SOMETIMES NOT. ANYWAY THEY WERE LAUGHING AND I HAVE TO GO BACK TOMORROW FOR NO APPARENT REASON OTHER THAN TO WEIGH ME AGAIN. I AM NOT DRINKING STARBUCKS ON THE WAY THERE TOMORROW.
SAW THE WORST MOVIE EVER AND I MEAN EVER!!
COWBOYS AND ALIENS-REALLY.....
WHO MADE THIS AND WHO WAS STUPID ENOUGH TO PAY TO SEE IT-ME.
REALLY-WHAT WAS I THINKING.
WEIGH IN WITH YOUR OPINION BECAUSE I CANT BELIEVE I PAID TO SEE THIS.
SPEND YOUR MONEY ON SOMETHING BETTER.
SO MORE DOCTORS AND SWOLLEN FEET.
GOING TO LA NEXT WEEK FOR 2 DAYS FOR TESTS AND DOCTORS VISIT-MORE ON THAT LATER.
I GUESS THE HOTEL LOST US AS THEIR GUEST AND NOW WE WILL BE STAYING AT THE DOUBLETREE INSTEAD. THE COURTYARD JACKED THEIR PRICES UP AND IM NOT PAYING THOSE PRICES IN CULVER CITY--I DONT KNOW WHAT THEY ARE THINKING. BUT THE DOUBLETREE IS REALLY NICE AND ABOUT 70 LESS A NIGHT.
SO THE FOOT SAGA CONTINUES TOMORROW....

SPENCER LEAVING WITH MY FOOD!!!

BYE..................................

SATURDAY AGAIN!!! CHICKEN PARMA

2011-07-30T20:32:00.000-07:00

CHICKEN PARMA INGREDIENTS

1 PD CHICKEN
2 PINTS TOMATOES
COUPLE HANDFULS OF BASIL CHOPPED
ABOUT 3 CUPS CHOPPED ARUGULA
1 PD PASTA COOKED- 1 CUP STARCHY WATER RESERVED
CUP OF CHOPPED FRESH MOZZARELA IN CUT IN SMALL CUBES
1 ONION CHOPPED
1 CUP OF PARMIGIANO REGGIANO
3 CLOVES GARLIC GRATED

CUT UP CHICKEN IN SMALL DICE SEASON AND BROWN IN OLIVE OIL
ONCE BROWNED ADD ONION AND SAUTE UNITL SOFTENED, ADD GARLIC, SAUTE
ADD TOMATOES COVER PAN WITH LID FOR 6- 10 MINUTES UNTIL BURSTING CRUSH ANY TOMATOES THAT DONT BURST ON THEIR OWN-SEASON WITH SALT N PEPPA
ADD DRAINED PASTA WITH STARCHY WATER AND TOSS FOR A MINUTE
ADD ARUGULA, BASIL, PARMIGIANO AND MOZZARELLA AND TOSS
SPOON INTO SHALLOW BOWLS-----YUMMMMMM

OKAY YUMMM.
HERE IS A QUICK IDEA FOR DINNER TOMORROW AND IT IS GOOOOD!!!!!
TAKES ABOUT 15 MINUTES I SWEAR.

WENT TO THE MALL TODAY-BAD IDEA
COULDNT REALLY WALK THAT GREAT AND REALLY WANTED TO SHOP SO THAT DIDNT WORK OUT SO WELL. SO INSTEAD SPENCER AND I ORDERED JOHNNY ROCKETS AND ATE CHEESEBURGERS AT HOME-HAH
THEN SPENCER FINALLY GOT HIS TV SO HE WORKED ON THAT AND IT LOOKS GOOD.
HE SLEPT HALF THE DAY I GUESS HE HAD A LONG NIGHT-HA
SO FOR NOW SHOPPING IS ON HOLD-CANT REMEMBER LAST TIME SHOPPING WAS THAT TAXING. ITS BECAUSE OF THE SWELLING AND LASIX MAKES IT UNCOMFORTABLE AS HELL-DUH. BUT IM THINKING IM BORED WELL TO BAD I NEED TO STAY HOME I GUESS.
THINGS WERE CALLING MY NAME BUT ALL I COULD THINK WAS HOW FAST CAN I GET OUTTA HERE!?
THEN I LOST MY CAR. OH YEAH I HIT SOME GUY AT STARBUCKS THE OTHER DAY BACKING UP-HE THOUGHT THE COPS WERE GONNA COME OUT TO PRIVATE PROPERTY AND TAKE OUR INFO-HAHA-I TOLD HIM THAT WASNT GONNA HAPPEN AND MY CAR WAS FINE. SO HE FINALLY GAVE IN AND I SAID HE COULD WAIT ALL DAY IF HE WANTED TO. HE DIDNT WANT TO-OF COURSE. SO WE LEFT GOOD LUCK.
RON CALLED FROM COSTA RICA AND SAID HE SENT COFFEE OUT TO US. HE SOUNDS GOOD AND HE SOUNDS SETTLED IN. IT DOES SOUND LIKE ITS THE RAINY SEASON OR SOMETHING-YUCK BUT HE SOUNDS CONTENT. IT WAS NICE TO TALK TO HIM AND KEEP IN TOUCH. ANYWAY I AM JUST RAMBLING ON-NOTHING MUCH HAPPENED TODAY INTERESTING. STILL TIRED ALOT AND SLEEPING WHEN I AM NOT EATING-OINK-JUST KIDDING. JOIN ME FOR BREAKFAST AT 6AM TOMORROW!!!

SPENCES NEW TV

JOES BIG HEAD

PEACE OUT!!!!

BYEEEEEE NOW

HAHA OVER 100-JOKES ON ME

2011-07-29T06:01:00.000-07:00

BIG GIRLS DONT HEAT UP WELL
OVER 100 HERE TODAY-REALLY
LASIX AND OVER 100
SWOLLEN LEGS AND ASS!!!!!

GOOD STRONG PEOPLE GET CANCER AND SOMETIMES THEY CANT JUST BEAT IT.
SOMETIMES YOU LEARN THIS THE HARD WAY .THEY JUST STILL DIE. THIS IS THE ESSENTIAL TRUTH THAT YOU LEARN. AND AFTER YOU LEARN IT ALL OTHER MATTERS ARE IRRELEVANT. THEY JUST SEEM SO SMALL.

LANCE ARMSTRONG

PALE SKIN IS IN

PHOTOS/NEW DISHWASHER

2011-07-28T22:55:00.000-07:00

new posts ha

NEW DISHWASHER FOR TIM----YES TIM. HE BOUGHT A DISHWASHER!! paper plates no way. IM GLAD BUT YOU KNOW ME I AM THE THROW AWAY QUEEN!!! SO THE DISHWASHER COMES AND NOW I HAVE TO WASH DISHES--REALLY-NO-IM GONNA KEEP BUYING PAPER PLATES OH YES. REALLY NICE GUY TAKES ABOUT AN HOUR ---CHILI IS COOKING -DELIVERIES FROM SAN FRANCISCO AND SOURDOUGH BREAD-THE GUY IS LIKE WHAT SMELLS SO GOOD-SO TIM TIPS HIM 20 INSTEAD OF FEEDING HIM.. EVERYONE IS ON THE CHILI THE MINUTE THE GUY IS OUT THE DOOR. SPENCER, ME , TIM JOE, THE FED EX GUY IS DELIVERING MORE BREAD??? GEEZ HOW MUCH SOURDOUGH HAVE I ORDERED FOR THIS FIASCO. PEOPLE JUST KEEP DELIVERING STUFF AND I HAVENT EVEN ORDERED ANYTHING IN A WEEK--CAN YOU SAY DO YOU HAVE A PROBLEM. I CANT REMEMBER THE LAST TIME I ORDERED ANYTHING--OH WELL AT LEAST IT WAS EDIBLE PRESENTS. IM OFF OF QVC AND HSN NO MORE FOOD ==SPENCER HAS A TV-REALLY-JOE HAS A BEAN BAG-REALLY- PUT IN YOUR ORDERS BECAUSE OBVIOUSLY IM PAYING-HAHA.PEOPLE ARE GAINING WEIGHT AROUND HERE AT AN ALARMING RATE-HAH.OKAY WE ALSO GOT CLAM CHOWDER-4ORDERS SOURDOUGH-CHILI-CHOCOLATE BREAKFAST BREAD, CROISSANTS,TOMATOES FOR CHILI, OMFG.I HAVE LOST MY MIND!!!! I GUESS I THOUGHT I WAS DYING TOMORROW. WELL NOW I HAVE TO EAT!! I DONT KNOW WHERE I THOUGHT I WAS GONNA WEAR THESE CLOTHES?? I HAVE BEEN BASICALLY WEARING 2 SHIRTS FOR 2 WEEKS OMG.OK TIME TO HAVE A GARAGE SALE BUT HIGH PRICE ONE. COME OVER FOR DIBS. SERIOUSLY PEOPLE-IM BURNT OUT. WE HAVE 3 BEAN BAGS CUZ THEY GOT THE ORDER WRONG-THEY STILL CANT GET IT RIGHT HELP...................
AT LEAST EVERYONE IS BEING FED NOW-THAT IS MY FIRST THING I AM DOING IN THE MORNING EVERYONE IS LIKE WHATS FOR DINNER??TNIGHT???ITS FUN THOUGH--OKAY GONNA GO GET RID OF SOME MORE LASIX--HAS. AND I DONT MAKE UP MY OWN RULES JOE--MY LEG IS UP!!! BUT NOT FOR 24 HOURS A DAY-YOU TRY IT 2 LASIX 1 WATER PILL AND NO EXTA POTASSIUM NOW--GEEZZZUS. LOVE YOUNS

WHO IS THAT GUY

BYEEEEEEEEEEEEEEEEEEE

LASIX--REALLY-GEEZ

2011-07-27T17:10:00.000-07:00

REALLY-LASIX
IM A HORSE NOW

LASIX REGIMINE-HAH

NOW I AM TAKING 40 MG LASIX AND POTASSIUM AND i HAVE TO TAKE ANOTHER WATER PILL 50 MG OF SOME OTHER WATER PEEING DRUG!! THE NURSE SAYS GOOD LUCK HAH i AM PEEING THOUGH!! HOPEFULLY IT HAS STARTED TO WORK. HOW IS CRABCAKES AND LASIX SOUND--YUMMO!!

I WENT TO DOCS AND THEY ARE LIKE POOR THING-HERE ARE PRESCRIPTIONS. GO HOME LAY DOWN PEE AND PRAY. iTS NOT AS BAD AS YESTERDAY. I ACTUALLY FOUND MYSELF DRIVING TO EMERGENCY ROOM MY ANKELES HURT SO BAD BUT ONCE THE PAIN MEDS KICKED IN i THOUGHT BETTER OF IT. SO LIKE IN LIFE I HAVE BECOME A HORSE.HAH. CAN YOU BELIEVE THIS!! IT COULD BE ALOT WORSE BELIEVE ME.

crab cakes YUMMMMMMYYYYYY!!!!

PHARMACIST AT SAVON THINKS IM CRAZY

IM GETTING ALL THESE DRUGS AND COBRA HASNT KICKED IN--BE READY PEEPS FEDERAL LAW SUCKS GOOD LUCK. EVERYTHING IS LATE IN THE MAIL AND YOU HAVE TO PAY PRESCRIPTIONS UP FRONT!! GOOD LUCK!!
200 dollars in up front money I need to be Secratariat. Just wait until this happens to you and you say oh yeah randi was talking about this hah--you think it is a joke hah-just wait until you are shelling out all this money or you cant get the prescription because YOU don't have the money HAH

GOODBYEEEEEEEE!!!!!

BYEBYEBYEBYE ADIOS!

TUESDAY?BACK TO WORK FOR TIM!!

2011-07-26T06:33:00.000-07:00

BEST TACOS EVER!!!

OMG-ASK MY HOUSE PEOPLE-BEST TACOS EVER!!!!!

WELL TIM GOES BACK TO SP TODAY!! CAN I GET A PARLAY WILL HAVE ALL NEW MEANING!!!

WEIRD HAVING HIM GONE BUT IT WILL BE FINE.

IM GONNA STAY HOME AND TAKE CARE OF MY KNEES!

SWELLING BE GONE---

NOTHING TO DO BUT CHILLAX TODAY. BORING TUESDAYS AND LOOK AT THE OVERCAST SKIES!! WHAT SHOULD I COOK TODAY SOMETHING GOOD!! NO NFL LOCKOUT HERE COMES THE PEEPS! EVERYONE IS SLEEPING EVEN MR NOODLES! NOTHIN MUCH TO UPDATE NOW MAYBE LATER?

WHO IS THIS?

SAY HELLO TO TIMS LITTLE FRIEND-HAH

2011-07-25T06:07:00.000-07:00

SAY HELLO TO MY LITTLE TURTLE FRIEND
HAH

say hello to my little noodle friend.......

seriously noodle

OUTTA CONTROL!

SO MONDAY-CHARITY COMING TO PICK UP STUFF FOR NON PROFIT. FOOD BEING EVALUATED FOR TONIGHTS EVENTS AND SILLY STUFF FOR BLOG!! Tim going back to work tomorrow-interesting. It will be good though give us a little more space. Gonna be weird. One minute Im dying then Im not. Have a long road ahead and dont know what else to do but soldier on from here.Stay tuned today. Spencer driving all over scary.... time for permit but he is doin better...Dont have much to work with here people!!

QUIET HOUSE-SWOLLEN LEGS GETTING ME DOWN THOUGH-THIS STEROID IS HORRIBLE!! MY JOINTS R KILLIN ME AND FORGET ABOUT MOON FACE! SAUSAGE FEET ARE THE PROBLEM NOW!!!! CAN HARDLY WALK BY LATE AFTERNOON. ALMOST WEANED THOUGH BUT THIS PART IS A BITCH!!

CROCK POT TONIGHT ANYONE!!!

3 SKINLESS CHICKEN BREASTS -CUT UP THROW IN CROCK

MOJO SAUCE-GREEN SAUCE JUICE OF 1 OF OF EACH-ORANGE,LEMON,LIME JUICE-POUR OVER CHICKEND WITH CAN OF GREEN CHILI AND CILANTRO WITH LIME
SMALL CANS OR 2 CANS OF TOMATOES WITH CILANTRO LIME WITH TOMATOES INSTEAD OF MOJO SAUCE-SAME THING YOU CAN ADD SOME ROASTED TOMATILLO TOO
COOK ON LOW 6 HOURS
SHREDD WITH FORK
USE FAVORITE TORTILLAS OR MAKE ENCHILADAS
GARNISH-SOUR CREAM, AVOCADO, TOMATILLO SALSA, CHIPS YUMMMOOO
PICTURES FOLLOW......

KIDS LOVE IT===LET THE MAKE THEIR OWN OR ROLL UP!!

EVERYTHING FRIDGE

BYEBYE.....................................

MOJO TACOS!!!

ADIOS SPENCER!!!!

haha ur drunk

2011-07-23T17:14:00.000-07:00

UR DRUNK
HAHA
TIM AFTER 3 BEERS!!

Vote for recipe?hot guy for Janene? SATURDAYS GUYS

2011-07-22T23:46:00.001-07:00

RYAN HOWARD
PHILLIES!!!

COBB SALAD? BALSAMIC VINIGRAITTE
WITH CHICKEN

GOODBYE,,,,,,,,,,,,,,,,,

GOODBYEYYYEEEE..
CANT GET OUTTA HERE!!

YUMMO-GUY RECIPES

WHO IS THAT GUY????

THE NOODLE!

CHINA TOWN
MOM AM I MEXICAN?

HOW EASY
GO PHILLIES (GEORGE, MICHELLE)??

RECIPE

VINAIGRETTE WITH SHALLOT AND BALSAMIC

1/4 C BALSAMIC

1/2 TSP SALT

1/4 TSP PEPPA

3/4 C EVOO

2 TBLS MINCED SHALLOT

CHICKEN

(POACH 2 BREAST IN BROTH 30 MIN WITH LID ON LET COOL IN LIQUID THEN SLICE UP BREASTS-EASY

2 ROMAINE HEADS CHOPPED UP OR PREMIX BUT THIS IS EASY FOR HEADS OF LETTUCE

2 RIPE TOMATOES-CHOPPED

2 RIPE AVOCADOS-CHOPPED

8 STRIPS TURKEY BACON CHOPPED OR i MICROWAVE AND CRUMBLE ON PAPER PLATE

2 HARD BOILED EGGS CHOPPED

1 CUP CRUMBLED BLUE CHEESE --I USE MAYTAG-REALLY NO SUBSITUTE ONCE YOU TASTE!!!

OKAY HOW EASY RIGHT-MADE IT IN 20 MINUTES WITH DRESSING. GO PHILLIES!!!!!! DISCIPLINE, CONFIDENCE AND RESPECT HE COMMANDS--LADIES?STARTED2001 PHILLIES. 2008 CHAMPION FOR PHILLIES--GO RYAN!!!

SIDE NOTE

ETHIERS-CHERRY PIE-BIG HIT AT MY HOUSE!!

MUSROOM RAGU EVEN BIGGER-AWESOME!!!!

SO I SPENT ALL DAY ON LASIX YESTERDAY!!! CAN YOU BELIEVE IT?? FEET SWOLLEN FROM HELL FROM STEROID! SO IT HELPED BUT THIS SUCKS AND i HAVE ABOUT ANOTHER WEEK LEFT TO GO TO WEAN FROM THIS MISERABLE DRUG. I HAD SAUSAGE FEET LIKE LITTLE BOATS IN MY SHOES--REALLY, REALLYY!! THIS SUCKS.
BE CAREFUL OF COBRA-WENT TO GET PRESCRIPTION AND EVERYTHING BEHIND-REALLY???
200 FOR PRESCRIPTION REALLY NOT DIFFERENT $7 TO $200 HELLOOOO--NOT!!! SERIOUSLY THEN I GOT PITCHED THE CHOICE PLAN-HAHAHHAAHHAHAHHAH. SERIOUSLY, SERIOUSLY!!!!I MUST HAVE STUPID MORON ON MY FOREHEAD-GOOD LUCK WITH THAT!
I HAD TO LAUGH RIGHT AT THE DIRECTOR-THERE IS NO DIFFERENCE HE SAYS--REALLY,REALLY.
COFFEE IS GOOOD THIS MORNING, EGG WHITES, YOGURT WITH GRANOLA AND BLUEBERRIES-YUM

THINGS ARE QUIET EXCEPT FOR FEET. GOIN TO DEBS OR MAKING AN EFFORT TO BRING COFFEE FOR GARAGE SALE. CRAZY BUY COOL ENOUGH TO START THIS MORNING. SO COME BUY DEBS AND BUY STUFF!!!! HAH.
THEY ARE SELLING CHRISTMAS TREES ON QVC TODAY--ITS GONNA BE A SLOW DAY!!
START VOLUNTEER WORK TUESDAY CANT WAIT
TIM LOOKS LIKE HE IS GOING BACK TO WORK A FEW DAYS A WORK NEXT WEEK (CAN YOU BELIEVE)
SO THINGS ARE MOVING ALONG.

SEE YOUNS!!!!!!!!!!!!!!!!!!!!!!!!1
RM

FRIDAY ALREADY!

2011-07-22T06:53:00.000-07:00

EVAN LONGORIA
TAMPA BAY
HOLUBTSI
SPENCERS FAVORITE!!!

OKAY-HERES A GO AT SPENCERS FAVORITE POLISH STUFFED CABBAGE THAT HIS GRANDMOTHER MAKES!!
TAMPA BAY GUY CAN DO IT!! AND HE DOES GOOD JOB!

Ingredients:
2 Large Green cabbage cored-put in microwave 8 minutes with a little water and steam. cool until you can handle. Then peel leaves about 8 each from heads.

1/3 c long grain rice
1 pound ground round n ground chicked ( i mix the two)
1 med onion chopped
1/2 c golden raisins optional(does make it good though)
                                                     1 tsp salt
                                                     1/2 tsp pepper
                                                     2 10 oz can tomatoes soup
                                                     2 Tbls brown sugar
                                                     1 Kielbasa cut up on top of Crock Pot!!

Line large Crock with outer cooked cabbage leaves. Mix ground chicken rice 2 eggs onion raisins salt n peppa Use about a small ice cream scoop and start from bottom of leaves-tuck in and roll. Pile in crock pot pour tomato soup and a little chickent broth over all cabbage and cut up Kielbasa on top. I use beef Keilbasa from
Whole Foods-Delish
Cook on Low with love for 6 to 8 hours----WALLAA
MY SONS ALL TIME FAVORITE MEAL!!!!!!!!!!!!!!!!!!!!

Went shopping and got my hair cut-OMG-what a hair day. explanations but not to many -my hair girl did a great job. My house looks so much different-new stuff everywhere geez. Hey people did you forget my number Janene(just wondering)haha. Hey Deb- Catholic Charities coming okay. Getting to go to smiles for toys on Tuesday to supervise making toys for volunteer work!! Cant wait-they supply children with toys-hospitals-and things like that. While you are dealing with dirty money and hot dog spit I will be making kids smile :)

So how are things?? Oh right-should of known-thanks for the notes guys-some of you have sent notes all the time and I really appreciate the thoughts-I am healing but being bored is part of that I guess.
Need more coffee already!! Anyone hear from Ron?? Hope he is having fun. Deb, Susan Graver no
good yesteday really!!
Almost done with the steriod but my feet are swollen because of this-yuck-but that should go away along with moon face-looks like I ate a sandwich like 100 times-hahah

Any more recipe requests from baseball??? E-mail me rmbuggirl@gmail.com and as always.
Goodbyeeeee.......

ahhhhhh

you guessed it
stuffed cabbage-haa

Tampa bay lookin good
Lets move there Tim
Making cabbage--yummooo

BYE BYE............................................
SO FN CUTE!
:)"

DODGER FANS!!ON CALL-ANDRE ETHIER RECIPE FOR TODAY!!

2011-07-21T05:26:00.000-07:00

Andre Ethier-he can cook too!!

Go Andre=Lazy enchiladas and mango and cucumber salsa salad.------
Easy recipe from mr hot stuff for our blog!!!

2 MANGOS-CUT AWAY SKIN AND SCORE SKIN TO CUT AWAY FRUIT
1 MED CUCUMBER
3 TBLS LIME JUICE'
HOT PEPPER SAUCE

MIX SET ASIDE

LAZY ENCHILADAS (ETHIER STYLE_)

1Can enchilada sauce (BIg)reserve
3 8oz chicken breast skinless bonelss
10 corn tortillasgood green salsa maybe roasted

put chickn in crock pot low with little chicken broth and on can green chopped chilis
Cook on low a few hours or until easy to shred with forks. I put some chipotle chili powder in too.

Once chicken is cooked--dip each tortilla in red enchilada sauce put shredded chicken in about 2 to 3 TBLS roll up and put seem side down. Roll until gone. Spread rest of enchilada y sauce and lots cheese until all rolled. then add green sauce. Bake in oven 350 till melted. Add sour cream. SO EASY
Go ANDRE!!!!

nothing else cooking here-andre is running is own farm kinda on off season-geez
Making mushroom ragu sauce for dinner around here later-check back.
all in all things were quiet today except for some shopping and little Johnny was the best at whole foods. He snuck up and paid for all my groceries!!! He is the best!!
Went to bookstore and volunteered for smile for kids today. Hopefully the volunteer work will be interesting. There is alot of interation and newsletters and coordinatin (pick me). It will be good.

Okay check back for Ethiers Cherry Pie!!!! And Randi''s Ragu=HAH

mango salsa
go andre

Andre
ENCHILADAS

GO DODGERS-COME ON ETHIER

GOODBYEEEEEEEEEEEEEEEEEEE

LAST BUT NOT LEAST --CHERRY PIE
FORGET CRUST-REST IS EASY!!!

ADIOS!!!!!!!!!!!!!!!!!

CHERRY PIE--GIRLS????

Wednesday!!Doctors Over

2011-07-20T06:56:00.000-07:00

even better this morning
made with all egg whites!!

No more DOctors this week-thank god!!!

Dr. Obara-update-can't feel any swollen lymph nodes-all spots are gone on chest and under arms.----REALLY,REALLY,REALLY.

Is all I could think was OMG!! He said that is what the study drugs are doing~~

My BRACA test also came back negative-no family gene-Yaye!

So no trace of tumors on outside now we have to do inside in 3 weeks. WOW

So he has given me a reprieve for 2 weeks since I am doing so well according to him. He was genuinely smiling at me yesterday. This is what Oncologists want to see!! No stress, no tumors and a good attitude. So instead I COOK----fun fun fun.
Do you know what it is like to see your tumors dispappear before your eyes. UNBELIEVABLE---you hear about this stuff but it doesn't really happen. Well it has and it is a miracle or believe what you want. But there is always hope if said the right way to you.

Time to go get that volunteer job. Concentrating on someone else. Anyone have any good ideas.\?
Spencer comes home tomorrow from San Diego-been quiet around here-need some noise. Cant wait to go back to Del Mar with him or San Diego after Santa Monica. It's funny we can just get up and go wherever now. Strange.

WHATS FOR DINNER TONIGHT

WELL
MUSHROOM RAGU SAUCE OF COURSE
RECIPE TO FOLLOW-EASY

1 1/2 OZ DRIED MUSHROOMS STEEPED 30 MIN HOT WATER 2 CUPS
2 TBLS BUTTER
2 TBLS OLIVE OIL(GREAT NEW GADGET RACHAEL RAY0
1 MED ONION (CHOPPED)
2 MED CARROTS (CHOPPED)
2 MED CELERY (CHOPPED)
1/2 PD CREMINI CHOPPED
3 GARLIC CLOVES GRATED ON MINI PLANE
1 PD GROUND CHUCK OR CHICKEN
3 SWEET ITALIAN SAUSAGES CASINGS REMOVED
RED WINE OR MARSALA

MELT BUTTER, OLIVE OIL ADD ALL CHOPPED VEGGIES, SAUTE UNTIL SOFTENED WITH GARLC. ADD MEAT AND SAUSAGE UNTIL DONE WITH MUSHROOMS. SCRAPE UP BITS WITH SOME WINE.
PUT MIXTURE INTO SLOW COOKER WITH RECONSTITUTED MUSHROOM AND MOST OF LIQUID NOT BOTTOM GRITTY STUFF ADD SALT AND PEPPER COOK ON LOW 6 HOURS. SERVE OVER PASTA (PAPPARDELLE IS GREAT) !!!

yummo

OKAY PICS

WHAT-WHOS THERE?

SPENCE HANGING

NOW THATS FUN!

GIRAHDELLI
NOT REALLY FUN
GOODBYE.........................

See youns!!!

Tuesday? Frittata -Doctors-sun sensitivity

2011-07-19T05:43:00.000-07:00

TRUE

OKAY=FRITTATA COOKING IN SLOW COOKER!!!

HOUR AND 30 MIN ABOUT=12 EGGS, BASIL, SALT, PEPPER, DOLLOPS OF RICOTTA AND HALVED BABY GRAPE TOMATOES ON TOP. 1 CUP PARMES. MIXED IN

SMELL GREAT=CUT INTO WEDGES=DONT FORGET TO BUTTER THE INSIDE=NOTHING TO IT. BREAKFAST DONE 6AM.

Doctors today-3:15 as usual=blood, rash check, yayada
Some sun sensitivity yesterday in 106 degrees. Feels like your skin is gonna fall off even wth sunblock. It was so hot here in Vegas, honestly my skin was burning from store to car.
Long sleeves in sun till I get into store today=yuck. It literally feels like you are on fire. But, this is the first time the sun bothered me. OH WELL-
Lets see=breakfast made, toast, coffee, yogurt!!! Coffee tastes good this morning!! Ordered sourdough from Boudin in San Fran so we will be eating with breakfast too.

Colored my hair again!! Looks the same to me! Cut it also,, had Janenes techique==works.
Working on short term=all paperwork should be in today.???
Went to volunteer for the Caring Place-they werent very receptive though. Didnt seem to be very caring to me. They have a nice center but didnt really have time to talk==whatever on to the next volunteering experience. I dont want to work for anyone like that anyway=I am gonna be picky myself!! They are getting experience even for just volunteering. f.... it. Seriously people!!

Went to see Bad Teacher!!! So funny-you gotta go see it with Cameron Diaz=literally laughed through the whole movie-REALLY. Funniest thing I have seen in months!! Red Rock was dead good day to see it on Monday. Spencer still in San Diego--must be nice!! Sea World?? Padres??? and beach of course. Deb are you wearing the friendship bracelet==so cute!!
So life is going on=leg a little swollen but the decadron is wearing down and hopefully that will be that now. going down another quarter this morning=so much easier to wean like this now--what were they thinking. Oh and for you people that think you can just get off of it so easy you are lunatics!! Its surprising grown as adults you don't understand what drugs you are taking. Oh well===What do you think I was just being mean. You need to go crawl in your holes and suck your thumbs=dont worry someday you will have an experience and say-oh this must be what Randi was feeling. Cancer drugs are tough cookies and I don't care how old you are there is just no excuse for you. There is to much research out there to not understand!!
Rant over==
Okay-back to breakfast-yum
Also, new place in Tivoli Village for Bakery and Breakfast--Excellent-big plattes of food
And, charming charlies-Deb and I could outfit ourselves for days in there. How could nothing fit me-REALLY
Everything fit us-cute shirts and jewelry-maybe it was the 30 price--oooohhhhhh, scary for something that fits.

Goodbye...................

S0 GOOD-REALLY-CUT UP PERFECT-YUMM

DONE 1 1/2 HOURS

YUM-COFFEE

TOAST-HAH

BYEBYE..................................................

FRITTATA FOR BREAKFAST?STAY TUNED/TUES

2011-07-18T22:43:00.001-07:00

MONDAYS? Dr's tomorrow

2011-07-18T05:24:00.000-07:00

NO HELP........
THE WIZARD IS HERE

MONDAYS=ANOTHER DAY

SLEPT OFF N ON YESTERDAY=WAS BEAT FROM THE WEEK AND REDUCING DECADRON. KILLING ME!

Doctors tomorrow-Dr. Obara my once a week! Need my short term insurance today. Hope katie is there! She needs to do it today. What a nightmare this short term long term crap is.

Decadron and meth-new comparison study==hahahha-seriously

Doing much better with it but still cant stay still.

My food blog=best Chicken and Rigs ever!!
Excellent yestereday PEOPLE
If you made the recipe you would have been pleasantly surprised!!!
Enough leftover for the week!!

Deb and I went shopping yesterday and the pancake house-YUMMO!
We went to charming charlies in the new place across the Suncoast. This shop had everything!! Right Deb. French cafes there we are gonna try that next time for sure.

Knick knacks galore but great jewelry and shirts. We found so much crap to buy and everything was like 12dollars or less. Fun, Fun.Gave Deb other half of friendship bracelet so cute on her and gonna color my hair like her daughter=cant wait.

Girls you have to go there-ask Deb how much stuff there was in that store!

What food Blog today?

Italian Crock Pot-simple

Turkey, Meatball and Escarole soup

3 Large carrots chopped
10 cups chicken broth (i use rachael ray faithfully) best broth in a box
1/2 pd escarole half a head=washed and cut into bite size pieces
1 pd ground chicken or turkey
a small onion minced
2 lg eggs beaten
1/2 cp plain bread crumbs
1/2 cp fresh parm grated
1 tsp salt
1/4 pepper

In large slow cooker, combine carrots,and broth. Stir in escarole. Cover and cook on low 4 hours.
In a med bowl, combine the ground turkey, onion, eggs, bread crumbs, cheese,salt and pepper. Mix well and shape into 1 inch balls, Carefully drop in crock pot with escarole.Cover and cook on low 4 more hours. Serve hot with more parmesan and bread for dipping.!!!!
Another CROCK POT WONDER MEAL!

Okay Canada you could definitely make this up there --nothing heats up the house its great. Crocpot best invention ever except coffee pot-Haha

Mr Noodles is upside down on my pillow this morning--really mr noods

HEY YOU KNOW THAT GUY?

BUGGED EYE BEN? ANYONE?

POP POP N SPENCE HAMMING IT UP

BLONDE STILL

BYE EVERYBODY..........

SUNDAYS BLAH/WORSE THAN SATURDAY

2011-07-17T06:29:00.000-07:00

Who is voting for this?

Sundays-Boring-Shopped Out
Gonna finish bedroom-looks great already!!!
what a difference the house is lived in again!!

Spencer and Joe left for San Diego-Now what? No kid to boss around!! He deserves it. He worked his butt off for me this week! Going to Padres and Beach.ajhhhhhhhh

Maybe some football I here???

Going out to breakfast with Deb=Pancake House anyone??? Give us time to relax and eeaaattt. Study Drug than pancakes--yummo.
Still feel great! I havent felt this good in along time. Prayer chains anyone??? Watch the stress at work girls and guys. Get your personal life in order. Cancer doesn't just happen it is brewing there waiting for your immune system to take a hike!!! Think I am kidding=not kidding watch your body drowning in stress.

So gonna relax today and focus on only good stuff,, lots of stuff=hahhh, If anything else comes ups my family is gonna kill me=hahah.\\

Time to stop eating!! Morning food over: egg white, toast yogurt, blueberries.with granola n honey m coffee
YUM

Dinner Blog
Chicken n Rigs (rigatoni)
Cook rigs
1 pd Chicken breast sauteed, cooked and cut up in olive oil
take chicken out of pan reserve
2 red frying peppers or red pepper from oil or jar (thats what I use) then chop-much easier
Add 2 chopped cubanello (italian frying peppers) 1 onoin chopped, 4 cloves garlic, grated
1 pd cremini mushrooms sliced, 2 fresno peppers chopped(look like red jalapenos) yyum but milder

When cooked off hit it with some sherry or marsala or wine about 1/3 cup get bits of bottom

Add 28 oz can san marzano tomatoes break up

Cook 20 mina Add 1/2 and half to smooth out=bout eyeball it how smooth you like it

Add chicken and veggies back and add to rigatonis
Add lots of fresh basil and parmigians
stir

Fresh Bread

Okay who likes dinner? VOTE FOR DINNER--HOW ABOUT NOW?

Lots of pics
randi

Gnome in garden-hah

LOVE THIS!

MESSY

WHERE ARE YOO NOW??

IS THAT MR NOODLES?
WHERE IS ALL THE STUFF MR
NOODS

GOOOODDDBYEEEEE.......................RANDI

SATURDAY//AGAIN??/

2011-07-16T08:23:00.000-07:00

HOUSE UPGRADES
JOE N SPENCE DID THIS ONE!

Good Job-Tim-new bedroom, spence and Joe
REALLY REDECORATING NOW!
NEW STUFF-SO IT LOOKS LIKE WE HAVE A HOME NOW.
BACHELOR PAD DAYS GONE!

TOOK DOWN WHOLE BEDROOM SET TO MAKE ROOM FOR NEW BEDROOM STUFF=EVEN BOUGHT A DRILL FOR CURTAIN HANGINGS-SERIOUS STUFF!!! TOOK TIM AND SPENCE 3 HOURS TO TAKE THAT CRAZY OLD BED APART.

FORGOT WHAT IT IS LIKE TO ACTUALLY HAVE A NICE SPACE TO LIVE IN AGAIN.

So now-took some pics of new sturff but more to come. Spencer is going to the pancake house with Ranymond this morning-yum. And he was such a big help yesterday. We had an axe-courtesy of Joe and drill from Tim but the bed NIGHTMARE! So more of the same today!!! Feeling better-ankle a little swollen from walking to much but you gotta get out and movin. Really can do so much more now.
Yard is fantastic-bought lots of fun stuff for that too. Guess I will get to cookin also. Yesterday we had turkey sausages w peppers and onions. And today it crockpot chili with chicken and sourdough bread from Boudin bakery straight from San Francisco!! Yes, we had it shipped. Spence, Tim and I love it. Yaye.

Other than that I don't know --planning meals is great-maybe I will include a recipe for each day girls--cook with randi???

Chicken Chili (ground-whole foods best) 1 pound ground
1 24oz can strained tomato (san marzano)
1 14 1/2 can dices tomato (san Marzano) this was in glass OR DELMONTE STEWED(they are sweet)
3 cups water or broth (your preferance

Spread chicken in slow cooker
sort beans (kidney) spread over meat
sprinkle contents of spice and vegetable packet over both ( I put chipotle chili powder and onion and peppers with regular chili powder_
Top evenely with all tomatoes
Slowly pour broth or water over--do not stir
Cook on low 8-10 hours
HOUSE NOT EVEN HOT!!!

Serve with Boudin Sourdough Bowls!!!

YUMMO

okay some pics

new lamps

COMING TOGETHER-NEED THE HEADBOARD

BIRDHOWSE--AIRSTREAM BIRDHOWSE HAH

NEW CUSHIONS-YAYE

NEW FROG

BYE EVERYBODY!!!!.....

CUTE STUFF

BUDDHA!!

SPENCERS HANDYWORK
UPSIDE DOWN
BIRDHOUSE!!

Friday? Home and Happy

2011-07-15T04:14:00.000-07:00

WOW-SANTA MONICA

FRIDAY-BACK HOME AND HAPPY!!

DOCTORS-COULDN'T BE ANY BETTER!!!

I HAVE HAD A COMPLETE RESPONSE TO STUDY DRUG PRETTY MUCH!!

NO MORE TUMORS!!

LDH TUMOR MARKERS WERE 375 NOW 250

DOCTORS CANNOT BELIEVE HOW WELL I AM DOING WITH NO SIDE EFFECTS AT ALL.

We cannot believe how well I am doing!!!! Dr. Hamid is happy and working with Dr. Obara is so positive he says what a help he has been. The research clinic is the best!! He said he doesn't ever want me to be scared and Yervoy wont be a choice for me because of the side effects I had with the Interferon!!! He does not like the response and depression it caused 6 years ago. There are no more tumors detectable outside on my body at all and the swollen lymph nodes are gone that were all over!!!!!!!!!!!!!! Doctor is like where did they go. But Dr. Obara saw the response on Tuesday so he already knew this!!! Fingers crossed. If you do not think this is a small miracle than nothing is. 2 Brain Surgeries down, 1 Craniotomy down, 1 Bleeding brain tumor that I could not have lived through possibly, down, where do I put the toilet paper, down, Recovery 6 weeks down, Cyberknife radiation, down, facial seizures, down, more hospital visits down, 2 more cat scans, headaches, down, 1 catheter hahah, down, peeing fine now by the way. 1 GREAT REPORT--ALL WORTH IT. MADE MY OWN WAY TO LA TO SEEK OUT THE BEST CARE, DOWN. GO RANDI!!

HOW DOES THIS HAPPEN! SHOWS YOU HAVE TO GET OFF YOUR ASS AND GET HELP NOW. I WOULD HAVE DIED HERE IN ABOUT 6 WEEKS GUYS. CHOICE PLAN--HAHAHAHA. CANT BELIEVE CIGNA ABOUT INSURANCE---EVER!!!

So this just goes to show you what the human spirit is capable of accomplishing if there is a will.
How fruitful was that?? (stupidest saying ever_)

Santa Monica-if you gotta be there then why not beautiful LA

Have another 29 supply study drug
Gotta go back for mri and scans in 4 weeks easy
Joe and Spencer are going with us this time!!! Umbrellas, beach, sand , ocean anyone???

Cant Wait for 4 weeks for more good news-this isn't luck it is destiny!!

who is that guy

GREAT VIEWS

YARD REDO

HAH-JAIL
THE ROCK
PRISON SPRING VALLEY

GOODBYE..............................

CARMAGEDDON/LA STYLE

2011-07-14T06:45:00.000-07:00

CARMAGEDDON\ONLY LA
WHO IS THE JOCKEY??

ONLY IN LA
CARMAGEDDON/LA STYLE
405 FREEWAY CLOSED ALL WEEKEND
AND JET BLUE REROUTED FOR 4 DOLLARS

Gotta get outa LA because of 405 freeway!!!
Come on people!!!
It is like a major ordeal! NO FREEWAY ACCESS-HAHA

Okay-so we went to Santa Monica yesterday! So nice out! I couldn't even do that last time I was here. Went to Oceans seafood how much fun was that!! Then we went to Whitey Bolgers house and took pics for Blog. He was 1 street away the whole time! Out in the open what a place to live-ha. Tim had a Lobster Roll!!! I had soft shell crab and oysters Rockefeller and salad-more on food blog-YUMMO!! Then we went across the street for some pictures. How fun.

We were driving around looking for Whiteys house so Tim could take pictures then he wouldn't get out so I just started taking pics. Going to Docs at 9am cant wait for more study drugs and check up. Up getting ready for breakfast at 6am cause they don't serve at 5:30am. E-mail me I am bored. Gonna get pretty for him so I look more normal.

Down to 3mg Decadron in morning again and Dr Obara said to wean very slowly so this is working great now. 1/2mg a week! Meth Central rotting teeth geez.

Steroids Suck!!

So if you are awake so am I!

WHITEY BOLGERS
SANTA MONICA

LOBSTER ROLL
OCEANS SEAFOOD

TIM LOOKING CONFUSED

BEAUTIFUL
BEACH SANTA MONICA

GOODBYE............................
RANDI............

WERE OUTTA HERE AGAIN!

2011-07-13T04:02:00.000-07:00

WE ARE OUTTA HERE AGAIN!!

WEDNESDAY, JULY 13TH

WE ARE OUTTA HERE AGAIN
HERE WE COME SANTA MONICA LOOK OUT!!

IM BACK AND MADE IT!! THE DOCTORS ARE GONNA BE AMAZED!

Thursday morning 9am appt. at The Angeles Clinic for the study drug!! Thats it then drive home hopefully because who wants to stay this trip.

Gonna take Spencer and Joe in August hopefully that trip will be better and we can do some relaxing. Well Spencer and joe can. So be back Fri or Sat cause the 405 freeway is closing for the weekend=NICE, get there and get outta there fast.

I feel very lucky or is it luck=I dont think so=I willed this myself my brain, body, mind and soul feel better. I just cant explain all that has been lifted from my shoulders. I am ready to keep fighting no matter what it takes. With my friends and family who have been so supportive it helps.

Spencer has done so much work with me this week-hah
Redecorating nightmare=but he secretly likes IT
ITS BEEN FUN FUN FUN

love you Spencer!!!!

See everyone in a couple of days.

Peace out

Goodbyeeeee!
Hey whos that guy in the background

Tuesdays/Doctors and packing

2011-07-12T03:12:00.000-07:00

WHO'S CAT DOES THIS!

TUESDAYS--

Doctors Appt 3:15
Dr Obara is Back!!!

So Glad-This other doctor decided he wanted to test another gene. He is a researcher also but REALLY-Now. Something that runs in family's but only my grandmother had and none of her sisters or my mother. He is just looking for something that isn't there. And that is how I feel.

So I cooperated because I only saw him twice.. Anyway, been shoppppingg..... When you haven't really lived in your house for 5 years and you look around-where was I. Working 6 days a week=joke=My house was a mess!!! So new stuff for house and Spencer and Tim putting together lamps and upstairs bedroom and chachkis and lots of NEW things=throw out the old. It's been fun and given me a chance to excercise my legs. Even though I am getting stronger it's still building strength that matters now.

Spencer was the muscle even moved the sofa bed out yesterday with Tim. What a piece of crap!!! Spare bedroom already looking better. My room-totally different also. Get back to that later.

LA=will be in Santa Monica Thursday for study drug. 9am appt. with Dr. Hamid. Can't wait until he sees the progress. It is so noticeable there is really nothing to say but Wow. So many tumors gone~~~ Cant wait until he sees the way the drug worked on me. Hopefully we will drive back after appt because why stay this time=thats how I feel. 405 being closed Friday=what a pain.

My friends in LA-I will see them next time. Just to much with freeway closures.

So 4 weeks in and amazing. Things I couldn't do last week I can do this week. The progress is noticeable in shower and walking and everything. Of course I am always pushing carts at Whole foods. I know who is there every morning getting his fruit=Haha. People actually shop for fresh food daily. GREAT.

So 2 Doctors this week keeps be busy and traveling!! Can't wait for car ride! Just kidding. No sunburns=no reaction at all to sun so far. No throwing up. No nothing. Just fatigue a little..... Pretty boring-Good!

Thats It. Have a good Tuesday whatever that means to YOU!!!

TALK ABOUT FATIGUE

GEEZ MESSY

REALLY MR NOODLES=WHATS IN THAT BAG

GOOODDBBYYEEE.....................
STUFFING HIS FACE=CUTE FACE

I PAD 2 NEW GADGETS

Sunday yaye/Spencer drives in the driveway!!ha

2011-07-10T07:34:00.000-07:00

SPENCER WITH LAWN MOWER
JOB DONE!!

SUNDAYS-AT THE MUNIZ HOUSE!!

Lawn mower, yes!!

Good Job Spencer!

Learned how to drive up the driveway! Almost peed my pants laughing with Spencer because of the brakes. Tim was watching out the window and thought we were going up the hill. He tried the brakes a few times to get used to them.

Anyone have any suggestions for driving for me for boys??
Ha ha-Seriously we were laughing so hard we couldn't drive!!
And that was just the driveway. No way could he have parked Joe's car next to Tim's ha ha. Now we need
his permit. Any ins on that for test? Start studying? Can't wait for today. Everyone is sleeping as usual. I get up at 5am for breakfast and study drugs and play around 8am. Started going to store so bored or writing blog that disappeared yesterday. So Things are kinda normal this week(fingers crossed) can you believe it. We go back to Santa Monica on Thursday it has been a MONTH! How amazing!! We are going down for the day because appt. is at 9am why stay this time. Next time Spencer and Joe are going with us. I have to stay for a few days and Spencer can go to the beach in Santa Monica. We will get 2 rooms they are adjoining down there and near elevator. That way we get a small vacation too. Anyone else on board. Courtyard Marriott in Culver City-20 min from beach really nice. All you bloggers dates later. School doesn't start until August 29th here in hell from the heat. Or Del Mar but cant really walk that good so I think we will stay up in LA.

Umbrella and UV skinz and sunblock great. Gonna try and have Spencer's moles mapped at the Dermatologist in LA. He is great and is gentle. I am not taking him here. That way he is close to a research facility if needed. It is painless they take pictures and this Dermatologist was by far the nicest and most caring Doctor I saw in 3 days there of testing. He was amazing and in Beverly Hills. But, worth it. Spencer has insurance so what. He will definitely take it and said what a big family he has. Dr. Behroozan is his name can't say enough about how comfortable he made me that day. He said he wouldn't even touch me and that means a lot to a kid.

Brown as a Berry is not in our repertoire anymore-understand, there is no such safe thing. Do not say that to my son!!!

So Sunblock-Target brand the best-up and up-doesn't smell at all -amazing-chapstick #30 and make sure you do your feet, hands neck, ears. I haven't been burnt once. It is easier.

Really haven't had any side effects yet. But only 10% of study gets them-I guess its the scare factor. Some fatigue after 6pm so I usually lay down but that's it. OMG

look at the fatty noodle

Seriously Mr Noodles

TRUE STORY GIRLS

GOODBYEEEEEEEEEEEEEEEE.....
WHERE R WE???
HEY WHO IS THE STALKER AGAIN?