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