Interesting/Boring day

Today had been a real bust for me, last evening about 5:30 my new cell phone was taken from the tray in my room.  Now there is no where to lock up valuables in this room and I felt like it was always very secure before yesterday.  Kim and boys were hear and say my phone on the tray, I picked it up and was going to calll Jim but decided it was too early he would still be at work.  So I put the phone back on my bedside table, where I always keep it. decided to go down to the lounge and talk with other patients.  Was gone about 10 min.  Meantime my tray arrives and they leave it at the front desk, they have always put it on my table me there or not .  Almost immediately, I discovered that the phone was missing. Went out and reported it to front deak and security but don't have warm and fuzzy feeling about anyone fessing up about the phone.  Just sick about the whole thing as I had waited until I was due an upgrade on my old phone before I bought this one.
Then everynight the light above the bed will not go out when I want it to, have tried the switch, remote on Nurses call lite and it will not go out, only to wake up a few hours latere tofind the light is working.  Handle is broken on the dresser of room i"m in.  And God only knows what kind of price we will be paying for all this mistakes,
It just has been a long boreing day and I am letting out some frustrations.  Last nite I was very upset about my phone and today I am furious, how could anyone take a phone from anyone but especially me who is 4 hrs. from home and needing it to keep up the communication, this is supposed to be a lock-down very s  Today I am so mad at this person, get a job.  Hospital seems to be of no help,

Back To My Concrete Home

Yesterday I arrived back at Barnes Jewish for my 8 days of Chemo to totally wipe out my bone marrow to get my body ready to recieve my new bone marrow next Monday.  It has not been bad so far.  I have received 5 doses of 16 of one drug and then will get 12 doses of another drug later in the week.  By Sunday my body will be back to "0".  They tell me that I will become very sick next week and they seem to have this down to a science so I should believe them.  Mostly right now I am trying to get used to the boredom and the concrete buildings.  This floor is not like the 6th floor where I was in April, it is very quiet and there is almost no one out in the halls or down the the family lounge.  I think that everyone is very ill and in there rooms for protection.  Just makes it very hard to pass the time and I have thanked God for computer, telephones and technology today.  It is so very hard to go from doing just what you want when you want to stuck in a very small hospital room and no one to talk to, there is only so much reading and crosswords that a person can do.
I will try to update everyday which I am able.

LindaPublish Post

5/23/11 People Are Helping Me Float

I am still in shock over what happen yesterday.  Lots of very wonderful, kind and caring people got together and put on one of the best Benefits I have ever attended or even been a part of.  I found myself wishing today that someone had vidoed the whole thing because it will forever be a dream in my head, oh but what a dream.  I will never be able to repay all the acts of kindness displayed yesterday.  People coming together and working together to make my life easier, how do you ever get past this.  I know that if I live long enough I will try my hardest to pay it forward because unless you are on my end of this you cannot understand the maginatude of what this means to me.  It's not the money, although this will ease up a lot of the worrying about the bills, but the positive thoughts this has given me about people in general.
I spent a very lonely winter, very few people knew the seriousness of my illness, and I was beginning to loose my faith and my belief in the human race, I felt so lonely.  This benefit has let me know that there are so..........many people in this with me.  They want and pray for this Transplant to work just because they care.   I now know that I have to try my hardest to get well so that I can help these people in return.  I want to get well and return home to the greatest place on earth.

5/10/11 Choppy Waters

Feel like I have been around the world in last 3 days.  Sunday road over to St. Louis, had Mother's Day dinner with Jeremy and Family. Spent the night, had to be at Dr.'s office by 11:00 a.m., Dr. Office for 3 hrs. trying to decide which way they were going to treat me to keep this in remission.  Finally decided that I would have 4 more Chemo Treatments.  Left Dr. Office and had 1st of Treatments over at Barnes yesterday, 3 others to be done at Vincennes over next 3 days, them Friday have growth factor shot with blood work at Vincennes, may have to have Blood and Platelets by Friday.  Then yesterday after the Treatment at Barnes saw a Dermotoligist and had Skin Cancer removed from Right Hand.  Not so pleasant experience.  We left Barnes at 7:00 p.m. arrived home around 11:00 p.m.  Long, long day and then an almost all day experience at Vincennes getting Treatment.  I am pooped, and I feel like I live out of the car. I just want a day to veg out at home, no where to be and no one to poke and prod me.  What little strength I was gaining seems to be going backwards this week.  I just want to get done and be able to spend some time at home.  Shouldn't complain, I am still able to do it all and stay upright.  This will get better, soon hopefully God.

5/7/11 Dry Inside Wet Outside

Today was a rainy day and I decided to run to Bloomington with Jim.  It was very busy and with the rain everything seemed to take longer to get there.  Business done I slept all the way home, now it's 12 mid-night and I can't seem to sleep.  Was a good day generally, didn't have to get up early and felt good not to have to get up and start the rat-race of getting ready to be somewhere.  Megan brought Mosby over and went out running, fixed breakfast for him and enjoyed watching him play in the food and eat very little, funny how the older I get the less the mess bothers me and the more I enjoy watching him making the mess.
Jim and I finally shaved off the remaining stubbles of hair on my head.  You can't imagine how uncomfortable little stubbles are to sleep on.  Jim thought it was already growing back some but I think it was just never shaved close enough in places.  Anyway, tonight it is much more comfortable to sleep on, I just can't seem to sleep.
Tomorrow is Mother's Day, spending the first half with Megan, Jim's Mother, and Me and then we leave for St. Louis around 1 p.m. We are having dinner with Jeremy, Kim and Boys for Mothers Day.  See the Dr. on Monday for what is supposed to be final planning for from now to Transplant.  Last week's Bone Marrow Biopsy results will be back and they are supposed to tell me if I will need another boost of Chemo between now and 15th of June, to keep Leukemia in remission.  Prayers needed once again that no additional Chemo will be needed before Transplant Admission.
Guess I should try and get some sleep, seems I can fall asleep any time during the day but nights are different story.  I am so much stronger this week than last, lets hope this continues.

5/5/11 Great Day on Dry Land

Today, I did a load of laundry, made dinner, sat out on the porch in the rocker in the sun.  Finally felt like life is going to continue.  Just the simplicity of doing laundry and making dinner made me feel human.  I sat outside for about 1/2 hour and just marveled at the sunshine and how good it felt.  Funny how the simplest things can make you feel like a million dollars.  For everyone out there who is going too fast, slow down and just enjoy the peace, I have been going way too fast for way to long, God is making me slow down, I get frustrated but realize that is exactly what he wants me to do, enjoy the sunshine and time.  There was a day when I would have felt so guilty for wasting even a  minute of the day getting as much done as possible, today I did so very little but it was SO rewarding.  

5/4/11 - Lost Sight of Land for A While

Sorry, all who have followed this blog, blogger was DOWN and I do mean down.  Came home on Sat. went to bed and did not get back up until Monday evening whenever we had to return to St. Louis for a scheduled App't on Tues.  I just was wiped out and they gave me a bag of fluids, switched some meds, had another Bone Marrow Biopsy. long day.  Today I do feel some better.  My blood counts are better than they have been in a year and it's funny to look at normal counts whenever I have been so hating blood work for a year.  Looks like it doesn't belong to me.  Nurse Practioner said this is your blood work and it looks great, confirmed it was mine and proved it was mine by showing me it was my birthdate.  Now we just have to keep it there until the Transplant on 20th of June when Transplant is planned.  I will be admitted on the 15th and Transplanted on 20th.  Go back on next Monday for final planning of Transplant, another long day as last app't is 3:30 St. Louis Time. It feels so good to be home, if I can't move I don't move and if I feel like doing something I can.  Just feels so good to roam the house.  The Donor is doing his final work up right now and all final tests on him are being completed.  We think he is a teacher as he was unavailable until week of 15th of June.  I may need a little Chemo to maintain remission until Transplant but that should be all and won't take weeks or wipe me out totally like last round.  So, I'm home, can blog and enjoy my own bed and home for about 5 weeks.  Please continue to pray as we have not hit home base yet and prayers are my best medicine.

Love everyone,
Linda

4/29/11 - Jitters Something Will Happen

They say tomorrow is the day but I still have those jitters that something will go wrong.  Everyone has sacrificed so much for me to be over here.  This effects everyone.  Everyone just takes it and goes on, somehow it works.  Hope I am worth it.  Not sad this is last night, can't wait to be home.  Have had excellent medical help but ready for my cornfields and a sense that the waters are not choaking me at all times.  See You All AT Home!!!!!!!!!!!!!

4/28/11 - More Rumors of Going Home.

Dr. This morning said maybe Saturday for Home Coming.  Day to day basis.  Most all persons that came in the week that I did are already gone.  So I must be close.
I cannot imagine my own bed, I have been gone way too long.  Seeing the grass and being able to able to walk any where I want.   Holding Jim's Hand any time I want, getting warm.  Gosh you don't know what you have until it's gone.  Not having to look out at the windows at concrete buildings.  Most of all looking out at my cornfield's and enjoying just seeing the open land.  we may be plain people but plain is great.  It may take a tow truck to get my stuff out of here but I'll Bet we get it done.

4/27/11 - Words of going home.

Wow, the days just keep going upward.  Blood Numbers are doing great, another great jump in the over all status. YEA!!!! Even had some rumors that discharge is getting closer, can't be soon enough for me.  I will miss this place but not badly enough to want to stay.  The staff here is wonderful and they tell me  the staff on the 5th floor(TRANSPLANT FLOOR) is even nicer.  I couldn't imagine because every single person is exceptional here.
Am so grateful to see the blood numbers going up, been a long three weeks waiting on any good news, guess I should talk the small and the big will seem so much better.
Time to start to thank the tons of persons who have been here either in person, prayers, monetary, everyone and you all know whom you are.
First, my family Jim, Jeremy, Kim, Megan, Matt, Grandkids they have been there from the beginning and I do mean the first cries, the worries the hopes the what to to do's and let's get it done.  I have a great family and know I am blessed.
Second, my brothers Pat, Danny, David, and sisters, Judy, Nancy, and Marlene whom this horrible diseases has brought us very much closer.  I am still amazed that not one refused to be tested for Donor and were as disappointed as myself when it didn't happen.
Third, 3 very good and loyal best friends who knew from early on and I could always talk to them, Thank YOU.
Forth, Anyone who has sent a card, an email or made a phone call they mean so much to receive everyday.
Fifth, anyone involved in any way with with this Benefit Dinner, you will never know how much stress this has taken off of us financially,  no matter what the amount.  I still am in awe that anyone would do this for us.  Takes tons of load off.
Sixth, all the prayers, this cannot happen without the power of prayer and look how much we have on our side.
I know there are some individuals I may have left out but I know you and I know what you've done, it takes us all as a mountain to chip away at this thing.  Love you All. Keep Praying, we are about 1/2 way through and there's land out there.

4/26/11- I have been strung.

Today was much improved, levels are slowly creeping up and I had about 1/2 day which I could actually say I felt good.  Such an improvement over the last 3 weeks.   Plus added bonus , after work Jeremy came with a wheelchair and proceeded to take me outside for about 1/2 hour of the outside of this place. My first time outside in 21 days, was just like heaven.  Fresh Air, new trees, flowers, they weren't like this when I came in.  Made me look at things differently.  Sure will enjoy  just being able to go out the  door on  my own.   Time and patience another no so great quality of an control freak.

4/25/11 Good Day

This has been one of those uneventful days when just the usual went on.  Still having fevers, up and down, but am assured I am right where I should be.  Today we had our first slight increase of the blood levels. Every little gain is what we want right now.
I'v been thinking about the meaningless stuff that comes out of our mouths.  While I was first diagnoised I started to notice how most people never know what comes out their mouths.  Most everyone will ask "How Are You" but do they ever really want to know?  I would find myself looking at them and wondering if  the realized what just came out their mouth.  I wanted to say just once, I'm not fine in fact I am very Ill, but no on has the time to really listen.  Next time someone asks "How are You", try and put some meaning in your response. Start watching what words spill out of our mouth.

4/24/11 Easter Sunday

There has always been something amazing about the celebration of Easter, but this one's comes with extra special meanings.  I really feel I have experienced several miracle in my life.  I have learned to slow down and take it sometimes one minute at a time.  I've learned my family and friends , and God are all that matter in this life.  I've seen medical miracles,  money miracles, and impossible things come true.  I am a Believer.
Today was by far my best day here, slept in , ate breakfast, showered, walked, than went the Church Chapel on first floor.  Was all done in by this time and back to room for rest while the rest of family put together the best food i've ever eaten.  I enjoyed it so much, first real food I've eaten.  Clean-up was by everyone.  What a day, that is what Easter is all about, my not having cooked for a 3 weeks, with everything perfect around me.  Making sure we ate a a precise time, like the food would disappear at straight up 2:00 p.m. Just a relaxing Sunday with no deadlines.  Afterwords, we did not have dished to do.
I'm about 1/2 way through this part of the Chemo to achieve Remission, am considered in remission, my counts are still at dangeriously, too low to survive outside of here.  So we wait until this hapens .  Right now we are in hurray up and wait mode.  So midway point of beginning round and today went well.  We're getting there.
Love ,
Linda

Riding the Waves

This post is from Megan.  Today has been an OK day.  Last night was a rough one and I am not talking about the tornadoes that hit the area.  Those at the hospital were spared from the storm at least.  Mom had to have blood last night, as part of the normal routine.  The blood started some sort of reaction that caused a rash, and was accompanied by a fever, catheter clog, and all sorts of little things going wrong at the same time.  This morning was significantly better, but then one of the antibiotics started causing some hallucinations.  Nothing big, but still not fun.  Mom is still a little confused about what day it is, but the antibiotic is slowly going out of her system.  Hopefully, tomorrow is a much better day.  White blood cell counts are not going up, but that is expected for this stage in the game with the fevers.  Those numbers should climb in the next week and the fevers should subside.  As I type, fever is going up, as it does when the sun goes down.  So for now, she is just riding the waves, watching for the next tsunami to come.  Let's hope it's a small one! Happy Easter!

Friday, April 22, 2011

Good Friday
Good Friday is the Friday of Holy Week, and commemorates the crucifixion and death of Jesus. Good Friday is a fast day in the Catholic Church, and falls within the Paschal Triduum.
Linda also wants you to know that she is having a good Friday.  She's had a week of her own good news after finding that she has a bone marrow donor, and after getting a good report yesterday of being in remission after the first round of chemo.  She had a good time seeing Sisters Nancy, Judy, and Marlene when they visited today and brought new wigs and hats to try.
Once again, thank you for your prayers and sending cards; more were taped to her room wall today. She's back in the first room she had on the corner and back to getting some wall decorating done.

Linda was delivered a special gift today, a huge bunny, and wants to have a contest to name her bunny. Here's the bunny; along with an awesome doll that Matty made with her own hands, and a Clydesdale & pink chick Bryce picked out for her. So, take a minute and leave your idea for a name in the comments. She's looking forward to the suggestions.

Peace, Love, and Blessings,
Kimberly

4/21/11 NOT SO GOOD BUT NOT SO BAD

STARTED OUT TO BE ONE OF THOSE JUST REGULAR DAYS, EXCEPT IT WAS JIM'S BIRTHDAY.  NOW WITH ALL OF THIS GOING ON I DID NOT HAVE TIME TO GO OUT AND FIND THE PERFECT GIFT.  FIGURED I WOULD MAKE IT UP TO HIM SOMETIME LATER.  HOWEVER HIS BIRTHDAY PRESENT WAS DELIVERED RIGHT HERE AT THE FOOT OF MY BED,  IN WALKED THIS LITTLE BITTY DR, I  KNOW THAT SOME OF YOU OUT THERE DON'T BELIEVE IN ANGELS, BUT I SURE DO.  SHE SAID MRS. NOLAN YOU ARE IN REMISSION.  NOW I JUST HAVE TO TELL YOU THAT I LOST IT NOT SOBBING BUT I THOUGHT I WOULD STOP BREATHING.  SINCE THE BEGINNING OF ALL OF THIS I TOLD YOU THERE HAS BEEN NO PEACE.  ALWAYS FELT LIKE SOMETHING WAS NEEDING TO BE DONE, OR PAPERWORK, OR JUST WORRYING, A HUGH PART OF THAT LIFTED TONIGHT, I KNOW I HAVE MOUNTAINS TO CROSS BUT THAT LITTLE ANGEK LIFTED ME UP AND MADE THE JOURNEY EASIER.

4/20/11 - Semi-soft waters

Well morning has gone well, Megan, Matt, and Mosby have been here and ran back out to do some errands.  I was glad to see them come but didn't take long to realize that little baby boy has so much more energy than this poor old grandma right now.  1st time have know for sure that I cannot handle him, he's all boy plus.
We are in this prayer mode once again, as if I have not asked enough, Bone Marrow Biopsy results will be coming in any time and maybe not until tomorrow.  Cross all fingers and toes that we get very low numbers of Blasts or "0" would be nice.  This would mean that remission has been achieved and we are ready to go on to the next step of prepping for Transplant. If it's bad news I get hooked back up to another round of the chemo.
With the news of a Donor, (I call him mine), somethings in my mine have been eased,  I feel like I'm still in  the water but I may be able to catch a glimpse of land every once in awhile.  Don't get me wrong, we have mountains to cross and hills to climb but the map is here.  I have not had the map in all these months and it is like someone has thrown me a lifeline and I don't have to swim so hard.  One more control issue off my plate.

Flood, famine, what's next, bugs?

First of all, this is Megan, blogging for my mom today. Today started out bright and somewhat cheery, even though it was storming outside. Mom got up and put a fresh coat of makeup on with her new hair. Her hair looks EXACTLY the same as her old hair, maybe even better! She said that she likes it and it's comfortable too! The day continued with another bone marrow biopsy in the afternoon. She said this was probably one of the most painful ones that she has ever had. I told her, let's hope that means it will be the best results that she ever had with one. We will know the results on Thursday, probably in the afternoon. Please pray for no blasts in the blood, which means that the treatment has worked. If it worked, then she will go towards the transplant. This was another source of good news today. The donor has been matched perfectly to mom and has completed all of the blood work. So if everything goes as planned, she will have the transplant in early June. She was fever free until this evening, when it spiked again. They continue to say all of this is perfectly normal.
Today many people have crossed our paths. In the face of dying, each of them was positive. One mother was there with her son, who was 19 and had leukemia. She told us about how they had been there since December 14 and came to tears as she told me that she would pray for my mom. When Matt and I left the parking garage today, another mother payed for our parking. She even waited on us and even paid for our next park. Another woman was a patient there, just like mom. She was going through similar treatments. She came to talk to mom and all of us in the waiting room. She kept telling my mom that she would get better, that she would sleep well tonight because God would hear her prayers for my mom. This woman, on her 7 th round of chemo, stood there, bald head and all telling mom, she would be fine. Wow, people are so good! This brings me to the title of the post. This same woman told mom that she had been through a flood(Her first room was flooded with a plumbing problem. So she had to move.), famine(The chemo has caused everything to taste like tar. So she hasn't been eating.), and then she said, what's next for you, bugs? With a huge laugh, she said, you can handle them, hahaha. As irony would be, shortly after this conversation, all the patients were put in the inner hallways, as a tornado warning was issued for the city. This all turned out fine, no tornado, and mom was back in her room shortly after.
She's right, mom can handle anything.

4/18/11 - Serious rough waters

Tomorrow is big day, have a Bone Marrow Biopsy to decide if all this misery is working.  Please asking for lots of extra prayers that BMB shows complete remission.  Today was a big one, started out with shaving of my head, very traumatic but ready it was falling out everywhere.  Jim and Kim went out and found me a wig and if you didn't know you wouldn't know it was not my own.  I cut it some and amazing no one knows hair is gone.   It is very cold with nothing on my head. Thank God everyday for Kim she is the best and we are so happy that she makes Jeremy just as happy.
Heard from Bone Marrow Coordinator and match is coming along very nicely and date will be around the 8th of June.  Pray again for all to go well with this process.
This whole process has changed my entire look on life, If I come out of this, there will not be a moment I do not thank God for the simplest of things, breathing, watching flowers grow, telling my family I love them, any number of things, just be grateful for the best of everything.
I continue to have a temperature, and they cannot figure out why, they are staying of top of the infections but have yet to identify the source of the infection.  I think they just don't understand the Arvin's Normal High Fevers. Once again they did not ask me and don't need another opinion.  Should have the results of BMB by Thurs. Jim's Birthday.  he said it would be best present ever, I agree.

Good Night all and hope tomorrow brings on better waters.
Linda

Sunday, April 17, 2011

Well, today Linda had to relocate out of her room for a few hours as they worked on some plumbing issues. Jim walked back in to her room to find a bit of flooding on the floor. After everything was taken care of, she was able to get back to her big room in the corner, which was good because she has plenty of her things in the space.

Nancy brought Linda a prayer shawl that she loves so much. She had us stop and get a new crochet hook and some new yarn so she can make another one. She already had it started by the time we left to get her a turkey burger and some cheesecake for dinner. Hopefully, we can find something she likes the taste of to eat besides Sprite Zero.

Love and Blessings,
Kimberly

4/16/11 - Bad rising Waters - Chocking!!!!

They tell me here that everything is right on Schedule, Fever continues  24/7, Nose Bleeds continuesly, Tylenol to break the fever, fever breaks and goes right backup.  And this is perfectly normal.  I am sick of normal.  Guess today it finally all came to head and I just got tired of all this.  I am rediculiously homesick, don't see water receding anyway soon, and I am just generally in a real bad mood.  They try to kill you and I feel they just might.   Then I talk to a man in Waiting Room whose 21 year old  daughter  diagnosed in Feb.  on here 21st Birthday, Had to drop out of 3rd college and take care of this disease.  Felt so sorry for him and her, this Cancer does not care the age, situation, race, nothing about the person
Do we do bad things in life that store us up for this hell later in life.  I have tried to be a good person all my life and this is what you get.  I am really  in a bad mood this evening.  I want to be home and able to see the  kids and Grandkids, I am so afraid Mosby will forget me, and poor Brian Chase, Bryce, Matty you can see the fear in their eyes and Grandma looks terrible.  I would like to crawl into a hole and come out when this is over. They tell me I will  fell better when it is over and I won't realize how great I will feel.  Poopy, poopy mood today, better stop while I am ahead.

Good nite all,
Grouchy, Linda

4/15/11 -fighting the waters

Today was not so good once again, I would spike a fever then it would break, I would sweat profusly, this has continued for days and they tell me it can continue for some time to come. Sometimes I think I must have been terribly bad to deserve this punishment, I truly have tried to be honest, and do God's will my entire life. I guess it's all about the hand we are dealt in life. Funny thing I don't like to play cards, never did. This is nasty scary stuff and I would like to stop playing

Thursday, April 14, 2011

Today was a good day for Linda.  Her fever is gone and she looked and sounded like her normal self. She said she doesn't remember much of the last two days, which is probably a good thing.  She got platlets today as planned.  Counts should be up tomorrow.  Jim left to go home for a couple of days to get some work done and Nancy arrived this morning to stay for the weekend.   That's about it for the day.

Special thanks to Megan for sending all of the Amish goodies!

Love and Blessings,
Kimberly

Wednesday, April 13, 2011

The last twenty four hours have been a new challenge of fever up- fever down. Currently Linda's fever is down, but she really didn't feel like blogging again today. The Dr.'s are telling us that the fever is expected at this point. Her white blood cell count reached zero today which is on schedule. This will make her very tired for the next week or so while she builds them back up.

It was nice that Jim had a stack of get well cards to open and read to Linda today after lunch. She always enjoys hearing from everyone. All of your comments, cards, letters, emails, and prayers are so very appreciated. Please, keep them coming. We've been decorating her walls with colorful pictures and drawings from the kids and now we'll have a bunch of cards to add. Thank you. 

Love and Blessings,

Kimberly

Tuesday, April 12, 2011

Hello, everyone.
Linda requested that someone continue her blog today while she takes the time to get some extra rest. This will be a bit different as it isn't in her own words.
Linda is an amazing woman. I was sitting in the room as she was coming back from brushing her teeth. She looked out the window and said, "It's a beautiful day." Even today she could see the beauty in something. She saves her extra snacks just to give to her grandchildren and family; and is working on a beautiful, quilted blanket for her newest grandson, Mosby.  She sent us out today to do some shopping for her while she rested. As we were in the store, I couldn't help but think about shopping with her and how much I wished she could be shopping right now. I hope she's proud that we found something on sale. :)
I love her so much.
I'm not going to go into details of her complete day as I will leave it to her as to what she would like to say.
As your reading this, please, say a special prayer for her strength and healing.

Peace, Love, & Blessings,
Kimberly

4/11/11-Semi-Soft Waters

Today was was a in-between day.  Started out sick in the night and didn't get a whole lot better from there. Breakfast, Shower, Walk  went ok and then lunch arrived.  Guess just so much hospital food is enough cause couple of bites and up it came.  Trouble was it I thought it was tasting pretth good for a change.  Anyway, that was it end of hospital food for today and maybe a while.  Kind of took the fun right out of dinnertime.  Dr. DiPersio was in, 1st time I have seen  the head dog since being admitted and he said that the 10/10 match was really good thing however to be very cautious as we are long way from having are ducks  in a row.  Got to bring that blood in and do some pretty sufficicated testing along side of mine before it can be called a perfect match.  So, we are here but not there as I used to tell me kids on a long trip.  However, he did say we are planning on going straight from induction Chemo to Transplant.  Good news to me I am not wanting to think about all the possibilities that could come up in between another wait.  I am so ready to get this show on the road and get toward the upside of well.  I want to be looking at life on the other side and that is the side of full life.  I want to get to Dry Ground, never was much of a swimmer.  I like to look at waters and enjoy from afar.  I will do this one day soon, very soon.  Keep up the posts and notes with prayers they mean the world to me.  Love to all.  Linda

4/10/11 - Rising Waters

Today started out with a big blast, 1st  injection, Sick.  Don't like days like this  one.  Otherwise, all turned out rather well.  Kids all came and visited, went to Zoo later on, had refreshments and left about 1 hr. ago to return home.  Think they had a good weekend here getting away from home and seeing Grandma and reassuring themselves that I am alive and well this weekend.
Got two messages from Priests last night in the night, one from Father Ken Walker and other from Fr. Leo. One came in at 1 a.m. and one at 4:30 a.m.   Have decided God is up all night. HA HA.  No really appreciated the notes from both, good to know I have people in powerful places praying for me and so much needed.
Two weeks ago in Church the Priest spoke about a little Brother and Sister, Little Brother was acting out and being really nasty to his sister.  Sister proceeded to tell Little Brother about how if he didn't start to behave he might have to go to Hell whenever he died and he would not like that place as it was very HOt and not so nice.  However If he were good he could expect to go to Heaven whenever he died and it was a  soft beautiful place to be.  Then she asked him which place he would prefer to go whenever he died and he said "I just want to stay here".  I had to laugh and cry cause that is exactly how I felt.  I just want to stay right here!!!  With the help of some very good Dr.s, poweful prayers and God's help I want to do just that for a very long time.   Keep up the reading and praying, I love, love, love to hear from all, makes my days go so much faster.   Love to all, Linda

4/9/11 - Chemo Day 4

Day 4 of the big blast Chemo, 1 accomplishment 3 days of Red Devil Complete and now just on to the rest of it.  Today I have had my shower, Breakfast and Lunch, only sick on little while, walked the halls and visited with Megan, Matty, Matt, Mosby, and Johnathan.  Was nice but can feel myself tiring more daily, to be expected according to nurses.  Mosby thinks Grandma has a great room and loves my mobile cart which goes everywhere with me.  Nice to have them all but also nice to have quite time when they all went to hotel to rest. 

Yesterday we got some cautious but very good news, on wed of last week a very Good Potential Donor was located.  So far he is a 10/10 match for my blood.  Meaning he has already gone through some of this testing and it matches mine so far.  Next step is to actually get a sample of him blood in here to lab for final testing.  If he is indeed the match, hospital asked him if he was available for donation in the middle of May, he came back that that would not work, however when asked about the 5, 6, 7 or 8 of Jun he agreed.  This seems like it is a very good trail and please keep up the prayers that it will get completed with success.  I could use some really good news this week, in an otherwise nasty turn of events.  They have stressed to us that this is not a final so just please keep up the prayers and posts.  I love getting news from home.

Love to all,

Linda

4/8/11 Linda No Land/Floating Softly In The Water

Today has been so much better.  I only got sick once, had my shower, walked 1 mile in halls and feel so.....much better than this time yesterday.  A Communion Minister come in for daily Communion, was so nice.  We prayed the Our Father and so may things came to me during that.  "They Will Be Done", how true, his will will be done and I must accept this.  Also, "forgive us our traspassers, as we forgive them", I have realized for quite some time now that I must let go of about a dozen or so of my trespassers, maybe they didn't even intend to do wrong against me and I just took it that way, however, I have carried a bad spot in my heart for them for so long.  I wish I could name them so they would know what I consider to be their bad but I won't do that, God and I know.  And if they did do me wrong and don't repent the Devil will do my dirty work for me.  I certainly have done myself NO good to carry around bad feelings about them and it is not my job to decide if they feel badly about what went on.  I know that they will come to the place I am at someday and have to deal with their own demons.  Good luck to them, it is a wonderful place to be.
I told my husband on the way over here on Sunday, if I die tomorrow, I have had and done it all, I have wonderful kids and Grandkids and I wouldn't want to do anything differently with any other people.  What more is there in life.  If I get lots more time than I know to spend it wisely for any time is too.....short.  Can't  stress enough how you must tell your love one's how much you love them, even when you sometimes are so bad you could hit, just turn it around and hug them or tell them you love them, life's too short to wait.  I wish I had done more, but I'm alive today and none of us is promised tomorrow, so do it today.  Someone gave me this saying years ago and we all should live by it.  "Yesterday is a cancelled check, Tomorrow is a Promissory Note, Today is Cash, spend it wisely".   How true.   Have a good day, I intend to.

4/7/11 Linda No Land Water Rising

Not qood day, water is up between mouth and nose, got to get it down, very tired of treading water today.
What a day, started out to be repeat of yesterday and went way down hill from there.   Started getting nauseated about 11 a.m. and just kept getting worse, more medicine to counteract the medicine.  This is one of those days you should never try and get out of bed.  
Wanted to talk today about the Donor Search.  I had never heard of a Bone Marrow Registery before this all come up.  Anyone can try and Be The Match for another human in need.  I do not know any more rewarding feeling than knowing that you could be the one to save a life of someone else.  I as far a I read the donation process for the Donor has been simplified so much over the years.  the person donating is given cell growth shots for about a week before transplant and then on day of transplant they are hooked up to machine which takes blood out of one arm, filters out the cells, and blood is returned to donor.  Cells are given to recepient within 12 hrs. of collection.  My donor could be from anywhere in the world.  They fly the cells  in if from far enough away, I think that is interesting.  Another tidbit, my blood will be come to the type of the Donor.  If they are negative I will be negative even though I am positive now.  So many fascinating things about this.
I am very fuzzy tonight, will write more tomorrow.

Love,
Linda

The Beginning

For all who want to read and follow this not so very nice Journey, I have decided to do this blog.   From the very beginning I have described this Disease as having the feeling like I am in water, with No Land in sight.  The water is up to my chin and I am in panic mode because most of the time I am fighting the water.  Never, since the diagnosis, have I felt safe and secure.  Sometimes the water is up to my chin, and other times it's up between my mouth and nose, and always I am fighting for control, feeling out of control.
I have my entire life wanted control of every situation and have worked very hard at making everything be very much under my control.  I think that this started way back when my Mom was sick (and believe me when I tell you, my family life was OUT OF CONTROL), and I felt that If I could control the situation before it hurt me, then every situation and person around me would be fine. Can't answer for all my siblings but think they have probably operated in "Control the Situation Mode" all of their lives also.  It was is a survival trait.   So I set out, at a very young age to get CONTROL of everything, and some of you know that I have operated my entire life since making positively SURE that I would cover every situation.  I am still fighting for control of this, but I feel like I am getting very tired of treading water 24/7, never a day or moment off.   I will fight with everything in me for control of this thing, however, it will take the mountain of prayers, family and friends that I have to help.  I am not used to asking for help, and maybe it means I am giving up some control of this thing, but I have learned in the last two weeks that I cannot fight this one alone, and I have lots of help.  I have had a weight lifted off me recently by giving up some control of the money disaster, work worries, and giving decision making of so many things over to more qualified people.  My mind was in overload and it had ceased to function in just try and get well mode.
So that all out of the way, a little history, in July last year went to new Hematologist associated with Jasper Hospital, had been kind of tired, but was getting some age on me and working like a 20 year old, and noticed a lot of bruises.  He took blood, called me back week or so later and told me I needed to have Iron Infusions, (something I had had to have in the past) Anemia.  5 Iron infusions and another Breast Cancer Scare and many more visits and tests later, was called in early Nov. and told I needed to see Oncological Hematologist in Indy.  Diagnosis MDS, not good but manageable with watch and wait.  Dec. started getting very sickly, more tired, continuously catching colds/flu thing, blood tests worse, and more bruises.  Dr. in Indy was still taking the wait and watch mode while my blood work was taking a nose dive.  Late Dec. decided to consult with MDS Specialist in St. Louis, Barnes Jewish Hospital.  This Dr. did Bone Marrow Biopsy and $16,000 dollars of tests in one day at Barnes.  Re-visit January, not good news, was worst form of MDS and ready to go into Leukemia, I was going to need a Bone Marrow Transplant down the road to survive.  Ordered testing of my 3 brothers and 3 sisters for best of all Matches a Sibling.  February news, NO Sibling Matches, this was absolutely devastating news to all of us.  All Siblings stepped up to the plate, willing and ready to donate Bone Marrow, and not one match.  Back to Dr. in St. Louis late February, blood work getting worse so he was setting up plan to find Bone Marrow Unrelated Match, ( a process that takes 2 to 4 months.).  Next visit in March, plan of action to try Chemo that I would go to Barnes 5 days of each month, Out-Patient, and get this under control before planning of Bone Marrow Transplant down to the road.  He preformed my 4th Bone Marrow Biopsy and scheduled 1 week a month Treatments to begin 4/4/11.  April 1, called and told that this had progress into full blown Leukemia and must come on Monday 4th to decide new plan of action.
So, this gets to Monday this week 4/4/11 and most of you know the story from there.  I was admitted, told I will be here at minimum of 4 weeks and possible right through to Transplant.  Donor Search has been expedited cause I need a Match yesterday.  Yesterday was tests and lots of planning for the correct  Chemo combinations and today the Big Blast, kill out the bad guys began.  Today was busy as they took blood every 15 min. first hour, every hour next 2 hours, then a total of 8 more at intervals so often I lost track of just when they took them.  Sounds silly to me that if you need blood so badly why do they take so much, they have assured Miss Hard To Let Go Control here that they know exactly what they are doing.   I am getting a combination of 4 Chemo Drugs for 7 days and then I will be at "0" immune system.  I will have to stay until my counts get back in the safe zone, not good but safe to survive outside of this controlled world.  If we don't get to safe zone, I stay here.  That is where it may go from this to Transplant.  Plan is to have me get into remission, build immune system, maybe release for 4 - 6 additional weeks and back for transplant.  All so dependent upon The Donor and when/if one can be located.
So this covers July to present day.  Plan of action is set in place, just needs to work, and if it does I get to live many more years.  Sounds pretty reasonable, don't you think, and added bonus, I learned to give up my little world of CONTROL.
Goal is to place my feet firmly on solid ground, looking out at the ever distant waters, and Love EVERY minute with my Dear, Dear Family and Friends.