DAY 32 AND A VISIT TO TRANSPLANT DOCTOR

HI EVERYONE,
TODAY I WENT TO SEE MY TRANSPLANT DOCTOR AND HE SAYS I WON'T SEE HIM UNTILL DAY IOO BUT HE DID GIVE ME TWO NEW PRESCRIPTIONS- ONE IS ACYLOVIR FOR SHINGLES SINCE I HAVE HAD THEM BEFORE AND BACTRIM FOR ANY THING LIKE PNEUMONIA OR ANY THING LIKE THAT. HE SAYS I WILL TAKE THE BACTRIM 3 TIMES A WEEK FOR MAYBE 6 MONTHS AND HE SAYS IT IS USUALLY WELL TOLERATED BUT IF IT BOTHERS ME WE WILL HAVE TO STOP AS I AM SENSITIVE TO EVERY THING. AS FAR AS FEELING BETTER --YES SOME WHAT I STILL GET WEAK AND TIRED BUT I AM BETTER THAN I WAS. I HAVE MY UPS AND DOWNS. I AM A LITTLE AFRAID TO LET GO OF THE ANZEMET PILLS FOR NAUSEA BECAUSE I WANT TO BE ABLE TO EAT. BUT I MAY
TRY TOMORROW AND NOT TAKE ONE AND SEE WHAT HAPPENS.
MY WEIGHT ACTUALLY HAS GONE DOWN I LOST ABOUT 15 POUNDS. I STILL HAVE A FEW TASTE BUDS PROBLEMS LIKE A COKE STILL DOES NOT TASTE RIGHT TO ME BUT OTHER THINGS DO. BUT I LONG FOR A BIG TALL COKE --ITS JUST NOT HAPPENING YET AND I SEEM TO GET HEARTBURN ALOT. SWEETS DON'T TASTE RIGHT EITHER. BUT I AM EATING THE ALL IMPORTANT FACTOR. I WOULD SAY ENERGY WISE I AM STILL 50 PERCENT. BUT I CAN TELL YOU IT DOES GET BETTER AND I HAVE MET ALOT OF PEOPLE THAT HAVE HAD TRANSPLANTS AUTO AND ALLEOGENIC. IT SEEMS LIKE WE DON'T GET OUR HAIR BACK FOR MAYBE 4 MONTHS. SO MAYBE I WILL HAVE MY SCALP COVERED BY APRIL. IT GETS REALLY COLD WITHOUT HAIR. I HAVE TO WEAR MY BEANIES TO BED EVEN. BUT EACH DAY GETS BETTER. UNTILL NEXT POST. SUSAN

FEELING BETTER

WELL HERE I AM ON DAY 29 AND I CAN ACTUALLY SAY I FEEL BETTER --OF COURSE I AM STILL TAKING MY DAILY ANZEMET PILL FOR NAUSEA AND I AM STILL SOMEWHAT WEAK BUT I AM BETTER!!! I WENT TO THE GROCERY STORE FOR THE FIRST TIME IN A MONTH TODAY. I AM EATING PRETTY WELL AND FEELING LIKE I AM JUST GONNA GET BETTER AND BETTER. I SAW MY REGULAR ONCOLOGIST YESTERDAY AND HE SEEMS PLEASED ON HOW I AM DOING MY BLOOD COUNTS ARE A BIT DOWN BUT HE SAYS THEY WILL FLUCTUATE FOR A WHILE. HE ASKED IF I WANTED PROCRIT BUT I DECLINED FOR NOW I WANT TO SEE IF I CAN GET BETTER ON MY OWN HOWEVER HES SAYS THEY ARE THERE FOR ME IF I NEED THEM. Monday WILL BE A FULL MONTH SINCE I HAD MY TRANSPLANT. I DON'T KNOW ABOUT TANDEM TRANSPLANT RIGHT NOW. I JUST WANT TO GET BETTER AND BETTER AND THEN MAYBE BUT I AM THINKING NOT MAYBE SOME MAINTENANCE PILLS LIKE REVLIMID. MY DOC SAYS WE'LL TALK ABOUT IT AT 100 DAYS AND AFTER ANOTHER BONE MARROW BIOPSY. BUT FOR NOW FOLKS I THINK I AM GETTING BETTER.

OOPPS I QUESS IT IS DAY 27 I LOST TRACK FOR A MOMENT

DAY 26

HI EVERYONE,
FIRST A BIG YEAH!!!!!!!!!--I GOT THE CATHETER OUT --MINE WOULD NOT COME OUT ON IT'S OWN SO THE DOCTOR HAD TO NUMB IT UP AND MAKE A SMALL INCISION AND THEN HE WAS ABLE TO GET IT OUT. THAT IS A SMALL STEP BACK TO NORMALCY FOR ME. I AM DOING OKAY --I GO TO SEE MY REGULAR ONCOLOGIST TOMORROW --I AM STILL TAKING THE ANZMET NAUSEA PILLS FIRST THING IN THE MORNING AND THEY DO HELP I CAN EAT--SO THATS ONE GOOD THING.I AM STILL WEAK --HOWEVER I DID HAVE TO WALK ALOT YESTERDAY TO SEE THE DOC TO GET THE CATHETER OUT WE PARKED IN THE WRONG PLACE SO THAT GOT ME A LITTLE EXERCISE BUT I AM TIERD TODAY. THEY SAY I WILL PROBABLY NOT BE 75 TO 100 PERCENT FOR MAYBE 2 MORE MONTHS TO COME --SO FOR NOW I WILL JUST HANG IN THERE AND YOU'RE RIGHT DON -- I BELIEVE THE NURSES.

DAY 26

HELLO EVERYONE,
FIRST OF ALL THANK YOU ALL FOR YOUR WELL WISHES AND PRAYERS IT KEEPS ME GOING. TO BETH MY COUNTS ARE ALL GOOD BUT I AM STILL WEAK AND HAVING SOME WHAT STOMACH PROBLEMS. THEY SAY IT CAN TAKE MONTHS TO GET MY TASTE BUDS BACK OR AT LEAST THATS WHAT SOME OF THE NURSES TELL ME THE NURSES STORIES ARE ALWAYS DIFFERENT FROM THE DOCTOR-SO NOW WHOS TELLING THE TRUTH. I AM WAITING TO SEE IF I CAN GET MY CATHETER OUT TODAY OR IF THE DOCTOR CAN FIT ME IN. HOPEFULLY EITHER TODAY OR TOMORROW. MAYBE I WILL FEEL ALITTLE BETTER WITH THIS THING OUT. WELL RIGHT NOW I AM JUST TAKING ONE DAY AT A TIME. I QUESS I AM SOME WHAT BETTER BUT NOT 100 OR EVEN 75 PERCENT. I WOULD SAY A STEP INTO 50 PERCENT.

DAY 25

WELL FOLKS,
YESTERDAY WAS NOT SO GOOD I GOT UP TO GET READY TO GO TO THE CLINIC AND I WENT TO BRUSH MY TEETH AND IT GAGGED ME SO I THREW UP AND THAT STARTED THE NAUSEA AGAIN SO I WENT INTO CLINIC AND GOT SOME ANTI-NAUSEA THRU THE IV. THE DOCTOR IS TRYING TO SEND ME BACK TO MY ORIGINAL ONCOLOGIST --I HAVE AN APPOINTMENT WITH HIM ON FRIDAY AND I DON'T GO SEE THE TRANSPLANT DOCTOR TILL MONDAY. I GUESS HE IS TRYING TO WEEN ME OFF OF THE CLINIC. I AM STILL HAVING STOMACH PROBLEMS I GUESS THAT WILL COME WITH TIME. I MAY JUST BE ABLE TO GET MY CATHETER OUT ON WED. OR THURSDAY. I AM HOPING AND PRAYING FOR THAT. I'VE HAD ENOUGH OF THIS THING. TODAY I AM OKAY THE DOCTOR GAVE ME THE PILL FORM OF THE IV VERSION OF THE ANTI-NAUSEA STUFF SO WE'LL SEE HOW TODAY GOES. I AM ALITTLE STRONGER EACH DAY IF MY STOMACH PROBLEMS WOULD JUST LET UP . WELL THEY SAY IT JUST TAKES TIME SO ONLY TIME WILL TELL. --SUSAN

DAY 23

HI EVERYONE,
I DIDN'T GO TO CLINIC TODAY-THIS IS MY DAY OFF AND I ACTUALLY THINK MAYBE JUST MAYBE I MAY BE ON THE UP SWING OF THINGS. I DIDN'T GET ANY ANTI NAUSEA MEDS TODAY AND I WAS ABLE TO EAT. MY STOMACH STILL GETS UPSET ALITTLE AND I AM STILL SOME WHAT WEAK. I CAN;T DO ALOT OF THINGS BUT THEN I CAN DO ALITTLE MORE THEN I USE TO . TODAY I WASHED SOME CLOTHES AND ACTUALLY WAS ABLE TO SWEEP ALITTLE. THE WEATHER HAS BEEN RAINY AND I HAVEN'T BEEN ABLE TO GET OUTSIDE MUCH BUT TODAY IT IS SUPPOSE TO BE IN THE 60'S AND IT IS SUNNY I HAVEN'T SEEN THE SUN IN A WHILE SO IT WAS NICE TO GO OUT ON MY PORCH AND FEEL THE SUN A BIT.I JUST PRAY AND HOPE I REPORT THE SAME TOMORROW THAT I AM STILL GETTING BETTER. WISH ME LUCK. THANKS TO EVERYONE WHO HAS BEEN PRAYING FOR ME IT MEANS ALOT TO ME. UNTILL TOMORROW--SUSAN