Everyday Life

Everyday Life
My peeps in San Fran last summer

Friday, December 30, 2011

At Peace













 
   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!

Friday, December 16, 2011

Fridays

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


Saturday, December 10, 2011

NEW DEVELOPMENTS

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

Thursday, December 8, 2011

Still here

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................................................


Tuesday, November 22, 2011

THANKSGIVING UPDATES

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!....
 

Thursday, November 17, 2011

BACK TO LA


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?........