SUSAN'S JOURNEY WITH MYELOMA

feeling good at day 220

2007-07-31T14:51:00.000-07:00

Hi to all,
well its been a long time since i posted and i just wanted to give you all an update--its now day 220 if i calculated right and i am doing great--as far as i know i am still in remission. i am just on aredia treatments every 2 months i go back for a complete check up in Oct. But i am basically back to normal. i still do not work as i wasn't before but i am pretty much able to do everything for myself as far as daily functions and such. It seems unreal that i am posting and still in remission. i had my SCT DEc 29th and i am doing good. My hair is still short but none the less its hair. It is all salt and pepper and i am thinking about coloring it as i always did before but am kinda reluctant. Has anyone ever colored their hair after new regrowth after chemo. My hair. started growing back in feb so i quess it has been6 months. it is pretty baby fine. so i am wondering if it would be good or okay. Well to all who are thinking about having a SCT just do it it is so worth it. i will admit its tough but you do get better and remmission is the altimate result hopefully for all. to all my myeloma friends hang in there ---there is hope.
Sincerely, Susan

DAY 105 AND VERY GOOD NEWS!!!

2007-04-12T18:52:00.000-07:00

Hi Everyone,
WEll its day 105 and i have very good news to report --I AM IN REMISSION__YEA,YEA,YEA!!!!!!!. i had a bone marrow biopsy on Monday and a skeletal survey and lots of blood work done and i got the results today. All are normal. The bone marrow biopsy shows 1% myeloma cells and the blood work is all in normal range and my skeletal survey was good but i have to have infusions of Aredia every two months to keep my bones Strong. So basically my doctor says i am in remission. He tried to contact my SCT doctor but he was unavailable--to discuss how to keep me in remission--what maintenance drugs to use so i will probably get a call on that tomorrow. Anyhow i will leave for LAs Vegas on April 22 to celebrate!!!! Thanks to all who wished me luck and got me thur this. i will continue to update you from time to time. feeling good ---Susan

DAY 91

2007-03-29T07:07:00.000-07:00

jUST A SHORT UPDATE. iT'S DAY NINETY ONE AND I AM FEELING PRETTY GOOD. I WENT TO MY ONCOLOGIST YESTERDAY FOR WHAT I THOUGHT WOULD BE A THIRD INJECTION FOR MY ANEMIA BUT I WAS TOLD BY THE NURSE I DID NOT NEED IT SO I AM VASTLY IMPROVING. i WILL GO ON APRIL 9TH TO GET ANOTHER BONE MARROW BIOPSY AND THEN GO TO SEE MY REGULAR ONCOLOGIST APRIL 12TH TO GET THE RESULTS. HOPEFULLY I WILL OF GOTTEN A COMPLETE REMISSION. WISH ME LUCK. ONE MORE NOTE MY HAIR CONTINUES TO GROW NOT FAST ENOUGH FOR MY LIKEING BUT ITS HAIR NONE THE LESS. WELL UPDATE YOU AFTER ALL TEST RESULTS ARE IN.
SUSAN

2007-03-13T12:58:00.000-07:00

HI EVERYONE,

I WENT TO MY REGULAR ONCOLOGIST TODAY AND GOT A SHOT OF ARANESP--ITS WORKS THE SAME AS PROCRIT. i HAD SOME BAD BONE PAIN WITH THE PROCIRT SO THEY GAVE ARANESP THIS TIME. THE PROCRIT HAS DONE ITS JOB BECAUSE MY ANEMIA IS NOT AS BAD. SO MAYBE WHEN I GO IN 2 MORE WEEKS I WILL NOT HAVE TO HAVE ANOTHER SHOT FOR ANEMIA. HAS ANYONE OUT THERE EVER HAD ARANESP FOR ANEMIA? ANYHOW I WAS FEELING PRETTY GOOD BUT AFTER SHOT I FEEL A BIT DIZZY. BUT OVER ALL I AM STILL FEELING FAIRLY DECENT. I AM STILL GROWING HAIR MOSTLY SALT AND PEPPER WHICH IS BETTER THEN NO HAIR AT ALL (HEY I'LL TAKE IT).

THATS ALL FOR NOW--SUSAN

DAY 68

2007-03-07T16:20:00.000-08:00

Hi Everyone,
It's hard to believe it's day 68--but here is. I am doing fairly okay. I did get my first injection of procrit about a week and a half ago--however i experienced some bone pain with it. Some of the nurses say it is normal and some of them say it is not so here i am again wondering which is true-however i indeed did get bone pain in my hips and lower part of my legs below the knee and my feet. I am just taking ibuprofen for the pain. But i have 2 more injections to go. Has anyone out there experienced bone pain with procrit? I have been feeling a bit unsteady on my feet and kinda like i have some sort of infection in my inner ear i think. But on the other hand i am growing some hair--not enough to feel comfortable without a hat yet but i am hoping that will be soon. My hair has come back sorta a salt & pepper look. WEll i see how long i can stand that. I am 48 but i don't want to look 60 but maybe i will like it after all.
Well thats all to report for now. Will keep you posted. Susan

DAY 56

2007-02-23T17:34:00.000-08:00

Hi Everyone,

I waited to post untill i saw my oncologist today. ALl seems good my blood counts are all good but he say i am a little anemic. SO Monday i will start on procrit injections every 2 weeks for six weeks and then i will have my bone marrow biopsy to see if i got a remission. If i did he says i will go on maintenance which will be revlimid. I will probably be on revlimid even if i didn't get a complete remisson. But all and all i am fairly well i can do most everything and the heartburn has seem to of gone away for now. Believe it or not My mother had promised me a trip to Las Vegas that was her way to give me a reason to get better. Well it worked because today i asked my doctor if he thought i would be able to go and his exact words were (i want you to go) We plan to go in April but that just goes to show that i feel better enough to think i will be in full force then and not doing bad now. My Hair has begin to some what grow back it is kinda like peach fuss now but i am hoping by April i will have my scalp covered.
Crissy tell your husband not to worry he will be okay and just tell him when he thinks it will never get better IT DOES GET BETTER . It is a little rough at first but you get better every day. I am living proof of that.
And i am hopeing he will get a complete remission from his also. IF you or he have any questions during his transplant i am here.
Susan

DAY 46

2007-02-13T12:26:00.000-08:00

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

2007-02-07T08:24:00.000-08:00

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

2007-02-02T06:31:00.000-08:00

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

2007-01-30T12:21:00.000-08:00

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

2007-01-27T15:35:00.000-08:00

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.

2007-01-25T06:20:00.000-08:00

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

DAY 26

2007-01-25T06:12:00.000-08:00

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

2007-01-24T05:56:00.000-08:00

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

2007-01-23T06:37:00.000-08:00

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

2007-01-21T11:31:00.000-08:00

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

DAY 22

2007-01-20T12:11:00.000-08:00

HI FOLKS,
AS EACH DAY GOES ON I GET A LITTLE STRONGER. I WENT TO CLINIC AGAIN YESTERDAY AND TODAY AND I HAVE TOMORROW OFF AND THEN GO AGAIN ON MONDAY. I AM JUST SO SENSITIVE TO EVERY DRUG THEY GIVE ME THE DECADRONE WORKS AS FAR AS ME WANTING TO EAT AND ALL BUT I FEEL SO JITTERY AND FEEL LIKE I WANT TO CLIMB THE WALLS. SO I HAVE TO PICK MY POISON DO I WANT TO BE SICK OR CLIMB THE WALLS. I HOPE THERE WILL BE A DAY I DON'T NEED ANY OF THAT ANY MORE. BETH YES THEY DID ADD ZOFRAN BUT I GET A TERRIBLE HEADACHE WITH IT SO I AM DAMMED IF I DO AND DAMMED IF I DON'T. ANYHOW I DO FEEL A BIT BETTER EVERY DAY THE MORNING KEEP ME WONDERING HOW I AM GONNA FEEL BUT IF I MAKE IT PASS THE MORNINGS WITHOUT BEING SICK I AM DOING GOOD. I THINK I HAVE MENTIONED THE SMELLS ALOT BUT I FEEL LIKE I HAVE A SUPER HERO NOSE. I CAN SMELL THINGS A MILE AWAY OR AT LEAST IT SEEMS THAT WAY. My HOUSE CAN NOT BE CLEAN ENOUGH(WHICH IS AN ISSUE TO MY HUSBAND)BECAUSE HE DOES NOT SMELL ANYTHING AND HE THINKS I AM CRAZY BUT WHO EVER GAVE ME THIS SUPER HERO NOSE TAKE IT BACK I DON'T WANT IT!!!!!
ANYHOW AUNT BLANCHE I AM NOT IN QUARANTINE BUT I AM NOT HERE ALOT I AM AT THE CLINIC MOST DAYS WHEN THEY GIVE ME A WEEK OR SO I'LL LET YOU KNOW. WE WOULD LOVE TO SEE YA'LL ALSO.

DAY 2O ALMOST 3 WEEKS OUT

2007-01-18T12:41:00.000-08:00

WELL TODAY WAS NOT GOOD I THREW UP ALL DAY YESTERDAY AND TWICE TODAY. I WENT TO CLINIC GOT SOME IV FLUIDS AND SOME ANZMET AND A STEROID PILL CALLED DECADRONE(I THINK THATS HOW YOU SPELL IT) ANY HOW THE SAME THING IS SCHEDULED FOR TOMORROW, THE DOC SAYS ITS ALL DUE TO MY TASTE BUDS. i CAN EAT TODAY BUT CAN'T TASTE IT THEY SAY I HAVE TO FORCE MYSELF TO EAT SO I DID. SO FAR SO GOOD. THE SMELLS THE SMELLS THE SMELLS (OH HOW I HATE THEM NOW) DON DID YOU HAVE A SCT? CAN SOMEONE TELL ME AT WHICH DAY OR WEEK DID THEY START TO FEEL BETTER? THE DOC SAYS IT WILL GET BETTER AND ALL MY COUNTS ARE GOOD AND HE SAYS MY BONE MARROW LOOKS GOOD. but I HAVE NOT YET RECOVERED(MEANING THE VOMITING AND SUCH) WHY I DON'T KNOW HE SAYS THEY WILL JUST KEEP SUPPORTING ME DURING THESE ROUGH DAYS. THATS ALL FOR NOW.

DAY 19

2007-01-17T09:14:00.000-08:00

LET ME START OUT BY ANSWERING SOME QUESTIONS--TO FRANCES-NO I DID NOT WORK BEFORE SCT--I HAVE NOT WORKED FOR ABOUT ALMOST 2 YRS NOW. I HAD AN OFFICE JOB BUT I COULDN.T WORK ANYMORE DUE TO BACK PAIN AND SUCH --I ACTUALLY GOT DISABILITY ABOUT A YEAR & A HALF AGO. MY CANCER STARTED OUT AS A SOLITARY PLASMACYTOMA AND I GOT 33 ROUNDS OF RADIATION AND WENT INTO REMISSION FOR 5 YRS AND THEN I GOT IT BACK IN 2004 MORE RADIATION AND THEN IN 2006 IT TURNED INTO MUTIPLE MYELOMA I GOT IT IN FIVE PLACES IN MY SPINE. THEN IN 2006 MY DOCTOR SUGGESTED THE STC. I WAS IN REMISSION GOING INTO THE SCT SO I SURELY HOPED IT WORKED AND ALL THIS WILL BE WORTH IT.IT WAS TO KEEP ME IN REMISSION LONGER. TO AUNT BLANCHE I HOPE THERE WILL BE A DAY I CAN NOT REMEMBER. TODAY WAS NOT SO GOOD I GOT UP EAT SOME TOAST AND TRHEW IT BACK UP --I THINK THE VOMITING AND STOMACH PROBLEMS SEEM TO BE MY BIGGEST ISSUE OTHER THEN I CAN'T STAND SMELLS. I AM HOPING TO FEEL BETTER SOON. I FEEL ALITTLE STRONGER BUT THE STOMACH ISSUES KEEP ME FROM MOVING AROUND IT SEEMS LIKE I JUST WANT TO CURL UP IN MY BED ALOT.MY TASTE BUDS ARE STILL NOT BACK. BY THE WAY THE CLINIC IS ON THE 10TH FLOOR OF METHODIST HOSPITAL. I WISH I COULD REPORT BETTER NEWS BUT RIGHT NOW THERE JUST ISN'T ANY I HOPE I AM NOT DEPRESSING SOME OF YOU=I LONG FOR THE DAYS I WILL FEEL SOME WHAT NORMAL AGAIN AND PUTT AROUND MY HOUSE LIKE I USE TO.

DAYS 17 AND 18

2007-01-16T05:43:00.000-08:00

HI EVERYONE,
DAY 17 WAS NOT SO BAD. I WENT TO CLINIC AND GOT MORE IV FLUIDS. I AM STILL NAUSEOUS AND HAVING STOMACH PROBLEMS. THEY GIVE ME ANZMET TRHU IV. BUT THEY TELL ME I CAN DO MORE AS FAR AS MOVE AROUND MORE AND MAYBE A TOUCH OF HOUSE WORK BUT EVERY TIME I DO I HURT ALL OVER ALOT OF ACHES AND PAINS. I HAVE BEEN ABLE TO EAT AND HAVE NOT THROWN UP IN 3 DAYS BUT MY STOMACH DOES HURT AFTER I EAT. TODAY IS DAY 18TH AND I FEEL THE ACHES AND PAINS TODAY. I DID EAT SOME TOAST AND KEEP IT DOWN --I QUESS TIME WILL HEAL --I DON'T KNOW--I AM SURE GETTING TIRED OF IT BUT I CAN SAY I FEEL A LITTLE STRONGER. I JUST WISH THE STOMACH PROBLEMS AND ACHES AND PAINS WOULD GO AWAY. I DON'T HAVE TO GO TO CLINIC UNTILL THURSDAY WHICH IS GOOD BECAUSE THE WEATHER IS SO BAD --I DON'T KNOW IF I COULD EVEN MAKE IT THERE TODAY BECAUSE OF WEATHER SO THURSDAY IS NOT BAD. WE WILL SEE WHAT TOMORROW BRINGS. IS THERE SOME ONE OUT THERE WHO CAN TELL ME WHEN THINGS GET BETTER. AS FAR AS THE STOMACH AND ACHES AND PAINS? THATS ALL FOR TODAY..

DAY 16 NOT SO GREAT

2007-01-14T15:35:00.000-08:00

WELL FOLKS,
I AM UNHAPPY TO REPORT THAT I WAS NOT SO GREAT TODAY --LAST NIGHT I HAD A TERRIBLE HEADACHE AND WOKE UP NAUSEOUS.I TOOK AN ATIVAN AND WENT BACK TO BED THEN FELT SOME WHAT BETTER. I EAT SOME LUNCH AND FELT NAUSEOUS AGAIN. MY TASTE BUDS ARE STILL AN ISSUE EVERYTHING TASTES GOOD WHEN I EAT IT BUT THEN LATER I HAVE A HORRIBLE TASTE IN MY MOUTH. THE SMELLS ARE STILL AN ISSUE TOO. I AM STILL WEAK--CAN BEARLY WALK AROUND MY HOUSE . TO DAVID --YES I AM FROM SAN ANTONIO AND I AM 48 MY ORIGINAL ONCOLOGIST IS DR KALTER ALSO FROM CTRC. HE SENT ME TO DR SHAUNGNESSY FOR MY TRANSPLANT. I HOPE I CAN BE OF HELP TO YOUR WIFE. THIS TRANSPLANT HAS BEEN ROUGH BUT THEY ALL TELL ME IT WILL BE WORTH IT. I AM SEEING ONLY 1/2 AN EYEBALL TODAY. I HAVE A FRIEND THAT LIVES HERE IN SAN ANTONIO THAT HAS HAD TWO TRANSPLANTS AND SHE IS DOING GREAT AND IN FULL REMISSION --I DON'T KNOW ABOUT A 2ND ONE FOR ME--AT LEAST I CAN'T STAND TO THINK OF THAT NOW. BUT I WISH FOR THAT DAY THAT I CAN BE LIKE MY FRIEND AND BE SOMEWHAT NORMAL AGAIN. I GO BACK TO THE CLINIC TOMORROW HOPEFULLY I WILL BE BETTER. WELL THATS ALL FOR TODAY. WILL TRY TO POST TOMORROW.

DAY 15 FEELING BETTER

2007-01-13T18:01:00.000-08:00

Hi everyone,
Well i am happy to report that i am actually feeling alittle bit better. i am somewhat still shaky and weak but i can EAT Yeah. today i felt like an actual person again. So i think i can say i see 3/4 of an eyeball to the light. i did go to the clinic which by the way is at the Methodist hospital today and get some more IV fluids and the doctor says that i can have the day off tomorrow but he does want to see me on Monday. My blood counts are good but the platletts are still a little low but coming up everyday. i just want to say to Don thank you so much for the prayers and comments and to Beth & Joseph who are awaiting up coming Transplants don't let my words be discouraging because it looks like it does get better and i am hoping the end result will be good. I will keep posting and hopefully i can report good news tomorrow also. Thank you to Aunt Blanche also for yours prayers. i can't wait to get this catheter out maybe next week if i don't have to have IV fluids anymore. the procedure for that dosen't sound good but it will be worth getting it out i have had it since end of Nov. Well thats it for now. Hopefully tomorrow i will be even better.

2007-01-12T14:50:00.000-08:00

HI EVERYONE,

ITS ME ---I FIND THAT THE MORNINGS ARE THE WORSE FOR ME. I GOT UP FEELING PRETTY BAD THIS MORNING. I EAT A BLUEBERRY MUFFIN AND DRANK SOME GATORADE AND YOU GUESSED IT THEY CAME RIGHT BACK UP. I FEEL SOMEWHAT SHAKY. I WENT TO CLINIC AND GOT SOME IV FLUIDS AND SOME NAUSEA MEDICINE THRU THE IV I THINK THEY CALL IT ANZEMET OR SOMETHING LIKE THAT I ALSO GOT IV STEROIDS TO HELP WITH NAUSEA. I ALSO GOT IV BENEDRYL. I SEE THE DOCTOR PRETTY MUCH EVERY DAY AND HE SAYS IT WILL GET BETTER. I CAN'T WAIT TILL THE DAY I CAN SAY YOU'RE RIGHT IT GOT BETTER BECAUSE RIGHT NOW I CAN ONLY SEE ABOUT 1/4 OF AN EYEBALL TO THE LIGHT. THE DOC ALSO SAY I MAY BE ABLE TO GET THE CATHETER OUT SOMETIME NEXT WEEK YEAHHHHH. WELL I CAN SOME WHAT EAT BUT MY TASTE BUDS ARE NOT BACK YET THE DOC SAYS MAYBE ANOTHER 2 WEEKS FOR THAT. I FIND THAT SMELLS BOTHER ME ALOT EVEN THE SMELL OF MY OWN HOUSE AND MY LITTLE DOG I CAN'T WAIT TILL THAT GOES AWAY. WELL THATS ABOUT ALL TO REPORT FOR NOW. HI AUNT BLANCHE--WISH ME LUCK.

DAYS 12 & 13

2007-01-11T23:54:00.000-08:00

Hi everyone,
it's me trying to keep you posted. On day 12 i did get out of the hospital but really don't think i was ready. When i got home i was so weak i could hardly walk around the house. I still have issues with eating. My stomach is so upset all the time. I always think i have to throw up i have gotten quite a habit of sticking my finger down my throat so i can throw up as bad as that may sound sometimes it works(my husband hates that) but you got to do what you got to do. i think i may have a bit of sinus or a touch of a cold because i have a lot of drainage and stuffiness. Anyhow day 13 i went to out patient clinic and i had to be taken up to 10th floor in a wheel chair. When i got there i saw the doctor and he says how i am feeling is normal for now but i should be getting better soon . My White blood count is good but my plateletts are still low but i did receive some IV fluids. My stomach issues are still there and they tell me to eat eat eat and drink drink drink)easier said then done but i have to force myself. i am still very tired and weak but getting a bit better. We will see what day 14 brings. will keep you posted.

DAY 11

2007-01-09T15:58:00.000-08:00

WELL IT;S ME POSTING SO THAT TELLS YOU I MUST BE FEELING A LITTLE BETTER- I HAVE BEEN GETTING DAILY NEUPOGEN SHOTS TO HELP INCREASE MY BLOOD COUNTS. MY DOCTOR CAME TO SEE ME TODay as well as every day.HE SAYS I MAY BE ABLE TO GO HOME TOMORROW.BUT I WILL STILL Have to go to the clinic every day for a while. the deal now is wacthing to see if i get a temp. so far so good. i was able to keep my food down today but nausea abd dierreA WILL STILL BE an issue for WHILE. I CAN ONLY Eat in baby steps. i did get some mouth sores but nothing severe.the main thing was my esophagous burning and dirrea dirrea dirrea. so hopefully i am on the up hill trend. wish me luck. hi to aunt blanche and extended family.thanks for all the prays. and thanks FOR all the phone calls and well wishes from the family. it has helped alot. well keep you posted.
susan & fAMILY

Days 9,10

2007-01-08T15:46:00.000-08:00

Hey Everyone,

Days Nine and Ten have not been so great for Mom. She still has the vomiting and tiredness and not feeling so great. She still has to take every pill under the sun which causes her to vomit because she can not eat right now. Her doctors have told her today that her blood count is going up and that she should be able to go home within the next few days. I think that Mom is on the back end of this process and she should start feeling better by tomorrow or Wednesday. She is being very strong and hanging in there really well. Thank you so much to all of our family being there for my mother. Stacy and Chris thanks for the visit the other day. Mom really liked her Teddy bear a lot. Once again, thanks to my grandparents for always being there and thanks to my father for being a great support and a great husband to my mother through all of this. Also, thanks for everyone posting and commenting on her site. It has been a big help for mom. Well that's it for now. We'll keep you posted.

8 Not So Great

2007-01-06T11:22:00.000-08:00

Hey Everyone,

I'm here in the hospital with mom and dad and it is day 8 from the transplant. Mom says that she is still feeling really week and tired. She can not hardly eat right now and she has had a lot of diarrhea. Her advice to anyone who will be staying in the hospital after their transplant would be to bring lots of pajamas and underwear. She has had to get depends because of the diarrhea. She is still getting every pill under the sun and every IV fluid you can think of. The doctors say the worst days are 7-10 and she is almost done with them. She says that she can not wait to get out of the hospital because her husband (my dad) has promised to buy her a nice watch from Nieman Marcus, the place to go. Her doctor has also reported that her blood counts should come up in the next couple of days and that she should start feeling better when they do. She is doing a great job and should be out of the hospital soon. My father is also doing a great job of taking care of her while she is in here. Well that is it for now and we'll update you tomorrow. Thanks!

7 DAYS OUT

2007-01-05T15:21:00.000-08:00

HELLO,
WELL I ENDED UP IN THE HOSPITAL. I GOT ADMITTED 2 DAYS AGO. I WAS JUST FEELING SO GRUMPY. MY DOCTOR JUST THOUGHT IT IN MY BEST INTEREST TO ADMIT ME. THEY ARE GIVING ME LOTS OS FLUID AND JUST ABOUT EVERY PILL UNDER THE SUN. THE FIRST Day IN THE HOSPITAL WAS NOT SO BAD. BUT THIS SECOND DAY HAS BEEN AW FULL. MY BLOOD COUNTS ARE DOWN TO ZERO AND I AM FEELING PRETTY WEAK. I AM RECEIVING A BLOOD TRANSFUSION AS WE SPEAK. I HATE THE LOOK OF THE BLOOD HANGING FROM THE POLE IT MAKES ME NAUSEOUS AND I HAVE ALREADY THROWN UP TODAY. MY HUSBAND ASKED DID I WANT HIM TO HANG MY ROBE OVER IT SO I DON'T HAVE TO SEE IT. ANYHOW I AM 7 DAYS OUT FROM THE SCT.SO I KNOW THINGS HAVE TO START GETTING BETTER SOON.LOOKS LIKE I WILL BE HERE STILL NEXT WED. WILL LET YOU KNOW MORE LATER. AGAIN THANKS FOR THE COMMENTS AND THANKS TO MY WONDERFUL SON WHO FILLS YOU IN WHEN I CAN.T YOU'RE AGOOD SON LOVE YOU MOM

A uneventful day

2007-01-02T21:34:00.000-08:00

Hey everyone,

This seems to be an up and down roller coaster of a ride. Today was a bad day for Mom. She can hardly eat because she has pain in her throat. When she eats it burns her throat and she cant seem to hold anything down today. She was at the docs office and he gave her some meds that are supposed to numb her body so that she can eat. We'll she how it goes, she is thinking about being admitted to the hospital so that the docs and nurses can monitor her until the chemo starts to wear off. Well that's it for now, she is hanging in there really well. Thanks everyone for the comments.

3rd Day After STC- New Year's Day

2007-01-01T18:50:00.000-08:00

Hey Everyone,

I am happy to report that Mom had a good day today. She was able to hold down everything that she ate so that it is a encouraging thing. She was up at the hospital today and the doctor told her that her blood count has dropped some. She received fluids and was monitored by the docs. She said she does feel tired and she took a nap after she got back from the hospital. Other than that, today was a lot better day than yesterday. Mom is at home resting at will be back up at the Docs office bright and early. Happy New Year's to everyone and their families.

2nd Day After SCT- Keeping the Chemo at Bay

2006-12-31T09:13:00.000-08:00

Hey Everyone,

It's Dennis III,

I just talked to mom and she is starting to feel the chemo working on her body. Last night she started feeling really nauseous and she threw up her food. Today has not been much better for her. She is up at the hospital receiving fluids and being monitored by her doctor. She is still doing Out-Patient and should be able to go home after a few more hours. She has tried to eat some toast and drink some Gatorade but she can't seem to hold anything down right now. She also tried to eat a biscuit this morning but could not hold that down either. Well that is about it for now. She is doing the best she can and hanging in there really well. Hopefully the Chemo will start to exit her body soon. MOM, keep fighting and understand that the good days will soon be here. LOVE YOU.

P.S. Thanks to everyone who has posted comments on her site. They are a big help to her and it helps her through this process. She also hopes this will help some others that may be going through this as well.

1ST DAY AFTER SCT

2006-12-30T17:31:00.000-08:00

TODAY I FEEL PRETTY TIRED. I CAN EAT SOME BUT MOSTLY DON'T WANT TO. THE ENDLESS PILL HUNDRUM IS AWFULL. I AM DOING MY SCT OUT PATIENT SO I DID MAKE IT UP TO THE HOSPITAL TODAY. AFTER BLOOD WORK AND ALL I WAS LET GO. MY DOCTOR SAYS MY BLOOD COUNTS STILL LOOK GOOD BUT I AM FEELING PRETTY PEAKED. THATS ABOUT ALL TO REPORT TODAY. WILL TRY TO POST TOMMORROW. THANKS FOR THE COMMENTS.

2006-12-29T12:44:00.001-08:00

Hi everyone,

This is Dennis III, Susan's son. I will post when mom isn't feeling good or can not get on here to post. Mom wanted everyone to know that she got her second dose of heavy chemo on Wednesday and that it went well. It made her feel tired and a little down. Today she received her Stem Cell Transplant and she said that it only took about 5 minutes to receive her stem cells back. She did report that it made her feel really heavy in the arms and chest. Also, doctors gave mom mints to eat while they were putting her stem cells back in because the process make your mouth taste like cream corn. The doctors also said that she would not be able to tell that she smells like cream corn but other people around her will smell cream corn when around her. Other than that the stem cell transplant went well and she is doing fine and does not seem to be feeling bad yet except for the drowsiness and feeling tired. She is a strong woman and is doing a fantastic job. Her and I would like to thank my grandparents for being very supportive and being there for her when she needs someone to be there. To MOM, hang in there and be optimistic, you are almost done with this process. Before you know it, you will be growing your hair back and you will be on your way to a Great recovery. To DAD, you'll do a great job of taking care of Mom next week. Love Y'all.

2006-12-29T12:44:00.000-08:00

ANOTHER DAY ON THE SCT JOURNEY

2006-12-27T17:53:00.000-08:00

today i got my first heavy dose of melphalan-it so far has been uneventfull. i got hydration and nausea premeds and ativan etc. I am kinda tired. And tomorrow i go for another heavy dose of melphalan again and then Friday i will receive my stem cells back. I know whats coming tho--hopefully i can fly through with not a great amount of side affects.but the next week will be the test. Will i pass or not--we'll see
big thanks to my son Dennis-he is truelly a god sent and to my parents who have should i say walked the line with me.and of course my neice who listens and also walks the line with me-My husband will be talking over Saturday--Boy does he know what hes getting in too. Just another day in SCT land.

HALF WAY THROUGH

2006-12-26T18:15:00.000-08:00

Hi everyone,
in case you don't know me yet -my name is Susan Schlueter and i am half way through my SCT. I begin my second half tomorrow with my first heavy dose chemo-to follow with a second day of heavy dose chemo and then SCT. As i await my day tomorrow i think i am SCT ready as far as house cleaning and mentally being prepared-i guess if you can be mentally prepared for a SCT. I still have my triple lumen catheter-which i hate and can,t wait to get out-so i await the inevitable-the SCT ride. Well lets see what it will bring for me -hopefully i can skip the mouth sores but i usually get what every unlucky soul gets so i probably will get them YUCK-Well i will try to keep up this blog thru the SCT ride-LETS SEE HOW FAR I GET!!!!