Schedule change

Over many years I donated over 4 gallons of blood, stopping when the first hints of an immune problem appeared. Donating just seemed like a good thing to do, and I never expected to need any blood transfusions myself. But I have needed 6 units so far, and might need more, possibly during this transplant procedure. Now, I need stem cells from a donor. Of course I’m very thankful for the many

DAY 46

HI EVERYONE,
WELL HERE I AM AT DAY 46 –THINGS ARE GETTING BETTER AND BETTER –I CAN DRIVE AND DO ALOT THINGS LIKE I DID BEFORE BUT I DON’T THINK MY BODY HAS FULLY RECOVERED. THE DOCTOR SAYS IN 3 MONTHS I SHOULD HAVE 75 OR 80% PERCENT OF MY STRENGTH BACK. THAT IS MUST OF MY PROBLEM NOW EXCEPT FOR STILL SOME LINGERING EFFECTS OF MY ESOPHAGUS–I SEEM TO STILL GET ALOT OF HEARTBURN AND KINDA OF A TIGHTNESS THAT HURTS MY BACK AND SUCH BUT I GUESS THAT IS STILL SOME EFFECTS OF THE CHEMO. I HAVE TO BE CAREFUL NOT TO EAT TO MUCH OR NOT TO EAT SPICY FOODS AND CAFFEINE. I CAN HAVE SOME CAFFEINE BUT NOT A LOT. BUT I DO NOT NEED NAUSEA PILLS ANYMORE. ITS KINDA HARD TO EXERCISE BECAUSE IT IS STILL COOL OR COLD OUTSIDE SO I DO WHAT I CAN INSIDE THE HOUSE BUT THAT IS KINDA LIMITED SO
OVER ALL I AM SLOWLY BUT SURELY GETTING BETTER. AND MY HUSBAND DID BUY ME THAT WATCH FROM NEIMAN MARCUS SO I AM HAPPILY SPORTING MY NEW WATCH AS I WALK AROUND MY HOUSE. IT’S A GETTING BETTER AND VALENTINE’S GIFT IN ONE. I SURE DO LOVE IT. WELL THATS IT FOR NOW. WILL KEEP YOU POSTED INA FEW DAYS. SUSAN

Day 40

Hi everyone,
Well i am doing alot better. I still do not have all of my strength back but i can do alot more very slowly–of course i do take a nap and sit down if i feel tierd but over all i continue to get better. Each day is a new challenge. Henk i hope you are doing okay what did your oncologist have to say? I find that my head is extremely sensitive to the cold air or just in general i can’t wait to get my hair back. But my appetite has fully come back and Don i quess that man you talked to is right your appetite is back before the energy level but i have not gained to much weight. i try to do alittle something every day even if it’s just a little house work. i don’t feel back to normal but this is much better then before i can eat and enjoy my food and not throw it up and i am adjusting to the smells its getting better not every thing makes me sick now. i can tolerate the smell of my dog and such when i couldn’t before every thing made me sick. So for now i just rest and i go to see my regular oncologist on Feb 23 to see how my blood counts are and such. will keep you posted.
Susan

DAY 35

HI EVERYONE,
WELL I CONTINUE TO GET STRONGER EVERY DAY. I AM NOT HAVING TO TAKE MY NAUSEA PILLS IN THE MORNING AND I AM GETTING BY –HOWEVER I DO STILL GET SOME STOMACH DISCOMFORT AND I HAVE HEARTBURN WITH JUST ABOUT EVERYTHING I EAT AND THE BURPS BUT OTHER THEN THAT I AM DOING FAIRLY WELL. I DROVE FOR THE FIRST TIME YESTERDAY JUST A SHORT TIME TO MY SISTERS HOUSE AND BACK. I AM STILL JUST ABOUT I’D SAY 55% ENERGY WISE BUT HOPEFULLY WITH TIME THAT WILL GET BETTER ALSO.THANK YOU ALL FOR YOUR COMMENTS AND WELL WISHES I WILL CONTINUE TO POST. SUSAN

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.

Categories Uncategorized

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.

Categories Uncategorized

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

Categories Uncategorized