Rambling

Well Stu is off to work, to make up some of the time he has had to take off , because of my various Dr appointments, poor guy. Its supposed to be beautiful out all weekend and he is stuck in his office.  He is only putting the time in today, so we will still have this afternoon and all day tomorrow. We need to do some major spring cleaning today, as we are getting a new mattress and box spring delivered on Tuesday. The one we currently have sucks, we both wake up with our bodies aching , it has no support what so ever. We had a really good double pillow top but it was a full not a queen and we needed a bigger mattress, so we gave the full to his mom cause she needed a newer mattress and our “old one” was a good one and only a year and a half old.  We went to a local store and bought a queen thinking it was comparable to the old one,,,NOT. so here we are a year later getting another new one.  This one is either going in the dumpster or to a place that provides mattress’s to people who can’t afford one. But its outta here.

Once again it was Virgie to the rescue yesterday, Stu and I were on our way to SLU for my transfusion, we went through McDonalds drive thru for breakfast and there was a bit of steam coming from the front of the car, he had just topped off the anti freeze so he figured it was just over flow, (as we had just had the car inspected the day before).  We get on the highway and run into a major traffic jam due to an accident about a mile or so ahead, and all hell breaks loose, steam/smoke is pouring from the front of the car, so he high tails it to the exit that we would have passed in 4 minutes time, luck for us as a gas station with real mechanics there. The upper radiator hose had a nice 4 inch split in it.  Now I have to be at SLU in 20 minutes, the mechanics have no problem fixing it, but they had to order the hose from the supply house and there is no telling how soon it will be there.  Stu tries to call Virgie at work, no answer at her desk. then it dawns on me that I have her cell number in my cell phone, The Wonderful Virgie, leaves work, thereby giving up her parking space which I am sure was a good one too. She comes within 10 minutes and gets my butt where it was supposed to be in time and then she had to go back to work and find another parking space. I do believe I need to take her to lunch, think Lalawallawalla or what ever the name of the place is that she and her daughters had taken me to a few months ago, VIRGIE ROCKS.  She has been there in so many ways for both Stu and myself, I am indebted to her for her help and assistance thru this whole screwed up 3 years.  We love you Virgie!!!

I want, need, desire a manicure and pedicure soooooo bad, its been since the middle of February since I last had one, and I can’t have one again til my counts are back up to quasi normal, my finger nails are a nice really long length, to the point I am beginning to have difficulty typing without hitting the wrong keys. I would trim them down myself but I would end up screwing them up so hopefully in another week or 2 I might get my wish fulfilled.

My head is in a good place, I have chocolate, I have my Tai Chi book from Sherry, that Stuart is going to start to guide me thru, I have to do something physical to get this body ready for the next round and Tai is a good thing for both mind and body and it doesn’t involve lifting weights ( other than getting my butt off the couch) which I could not handle right now.  Speaking of Chocolate, we went to GNC and got this weight gain stuff XXX Max, its a powder that you add to milk or whatever and its thick and its too sweet and chocolately, BUT its 990 calories per service, and for me right now every calorie counts. I am a size 6 in pants right now where this time last year I was  a 10/12 and I had a booty,(which has disappeared on me)  I got 2 pair of jeans this past week that fit and thats all I plan on buying, I am determined to at least get back up to where some of the kazillion clothes that I have in my closet fit again.  I do not like looking in the mirror at all, Its not that I am vain its I am not happy with how I look right now, I see a different me, I look older I look worn out, but what I see inside of me is the me 3 years ago before this crap started, and I am going to get that back.  If you looked at the pic of Stu and I that I have posted here, I do not resemble that person right now at all and I will get that back, that is my goal to get back to normal, to get back to who I was before. This whole experience has changed me in so many ways, some things I can get back, some things will be changed forever and I can deal with that. I want to get back to contributing to the world, I want to be able to make a difference in someone else’s life who might face what I have/am going through.

Ok now I am rambling and I could go on forever, so for now I shall zip my lip or remove my hands from the keyboard, and go get some more coffee.

I need to start writing

I just have not had anything exciting going on, My counts are still low but holding steady, and my WBC (the infection fighters) was actually 1.2 they highest they have been in a month and a half was 0.9 so this is a major accomplishment for me. My platelets took a dive on Tuesday to 1000, but they were  up to 3000 today, so I got my little bag o platelets and came home I see my Dr Monday morning along with more platelets, hopefully this is the start of the UPRISING of my counts finally.

I saw Michele my transplant coordinator today and they have shipped off for further testing of Bro #1. I should know in another week or 2 whether we will need to further test Bro #2 or not at this point.

There are no goals or dreams that are unobtainable, reach for the stars, make it real

I found it,,,

I spent 2 days looking for the title to my car that the bank sent me in Sept of 05 after I finally paid it off. I went through boxes upon boxes and nothing,  I finally attacked my rolltop desk, I had an empty box and just started throwing papers in there til the box was full.  I sat on the floor , trash bag to my left and started sorting through all the junk (90% was credit card offers)  I am now at the last handful of papers in the box , as I looked and reached in,sitting on top of the last the little pile, was lo and behold the damn title, It was in the first handfuls of papers that I had thrown in the box, Needless to say I was a happy camper, so I put it with the registration papers, and took all the neat little piles of somewhat important papers that I had so carefully gone through and shoved them all back into the desk drawers.  I accomplised what I set out to do, and got rid of alot of junk in the process, but my job at that point was complete. at least what is in the desk now is a bit more organized, but not much.

I have been waiting to here from the Dr when he wants me to come back in for platelets, I spoke with his Nurse yesterday and she was supposed to call back, but she never did. So I am going to assume that its going to be Saturday or Sunday, it should be quick and only platelets as my hemoglobin was up on Wednesday.

My friend WillieB from the LLS Boards had his allo transplant around the first of the month his new cells (donor cells) are engrafting, but he is in ICU with some heart issues now, so say a prayer that the Dr’s can get it straightened out for him and he can go home soon.

Well it is early and I need more coffee and to wake up. I may post again later if my brain ever kicks into gear.

“Courage is the state of mind that allows one to face their darkest fears. It is the inner spirit  that allows one to stand back up, when life brutally strikes them down.  Courage is the resolution to move forward when obstacles obstruct the pathway and it is the strength to
take responsibility for ourselves and rise above it all.”

This is funny

This is funny, not all will find it amusing, so sorry no offense meant.

http://sjl.funnyordie.com/v1/landing.php

A Busy Day

Here are todays countsWBC 0.7 no change RBC 3.96 something normal for a change HGH 11.9 just under the normal low of 12 Plts 2 that doesn’t surprise me.Things were really screwed up this morning at the clinic, seems they decided to hold a meeting that ran until 9:30,, doesn’t matter that I have an appt at 8:30 for the Labs and an appt with the aphereisis unit for platelets at 8:40. sheesh, still got out of there by 10:30 I had to be at my former place of employment for a Retirement party at 11, they went all out for me and it blew me away how many people came through to say goodbye to me and wish me luck. I was presented with a plaque with my retirement certificate and I had to say a few words, at first I was speechless, then I just spoke from the heart, I worked with some really great people, many who inspired me to no end, and I love and respect them all, It was an honor and a pleasure to work with them and then I threatened to come back one day when my disease is gone . I told them this is only a speedbump in my life, it will slow me down, but it will not stop me. Its been a long and emotional day, but it was a good day Robbi

Another exciting day in the life of me

I received 3 units of whole blood yesterday and of course the good old platelets
WBC .07
RBC 1.89
HGH 5.68
and those darn platelets were at 2 again, sighhh I need a break.
And then to come home from being at the hospital all day to no connection to the internet it was just a horrible day. So that was my Sunday.

Monday morning still no internet, I spent an hour and a half with my local provider and then another hour and a half with my wireless router support line, I hate the phone. I think my local provider sends out signals that just screw with my router, they said ” We can come out with a modem that is set up for wireless networking there is a monthly charge of 10.00 per month and a fee for rewiring your home for wireless access,” My home doesn’t need to be rewired hell the router is in the next room, we live in a townhouse, so on rare occassions I take this thing downstairs all of 30 feet maybe. ITs YOUR SCREWED UP SERVICE.   Anyway, tomorrow is my retirement walk thru at work, that is after I go get platelets again.

I haven’t see my DR in over a month, first because he only sees me once a month anyway, he has been at conferences and such, I saw him on Sunday and he didn’t seem aware that my counts had nosedived as much as they had I was only supposed to get 2 units of whole blood, he threw in the 3rd as a precaution.  He also said that there could be issues with my matches with further testing that could turn around the option of using either of them, he didn’t make it seem like a big deal, but that planted a seed in my head that something is going to go wrong and I won’t be able to use them, I just have to be patient and wait and see. I have a call into my Transplant Coordinator as she is the one coordinating this whole thing and she may have information that He hasn’t gotten yet as he hasn’t been around.

I also have warned Stuart to not allow me to handle any important papers from here on out. I have misplaced the title to my car and the receipt that I just paid on the personal property tax on our cars.  The title we got back from the bank some time ago, I just can’t remember when or what I did with it, we have 2 file folders for important papers and it doesn’t seem to be in either of them. and the receipt that I thought I put with the registration renewal form is suddenly not there, I think I am loosing my mind, but then whats new about that.

Thats all Folks

Wet Rainy Saturday

Hi all

Its another April showers around here, and it stinks but what can you do, but deal with it.

I won’t be seeing much of Stuart for the next few days, its that time of year and he will be busy, busy, busy.

I got platelets on friday the pre numbers were WBC 0.7,  RBC 2.49, hemoglobin 7.6 and platelets were a whopping 9,000. woohoo

I get to go get another transfusion of Platelets and whole blood on Sunday, that is just a boring day, just watching the drip. sigh, the good side is the whole blood transfusion gives me about 3 days of almost feeling normal.

I have the lastest installment in the Left Behind series “Kingdom Come” by Jerry LaHaye and Jerry Jenkins, I got hooked on the series back in 2001 with the help of some co workers, this is supposed to be the last one.

Its about noon and it just dawned on me that I haven’t eaten anything yet,, thats not good, I need food and on a nutritional note, I am so determined to put on weight, I am resorting to drinking 2 ensures a day for the added calories, that stuff is sooooooo nasty, but I add 8 oz of milk to it so it helps some and the milk just adds a few more calories to the equation

Have a great weekend, will post tomorrows counts when I get home

Ok after this post I am going to bed..

An update on things I would like to do or persons I would like to meet in my life time..

1. Go back to the Grand Canyon with Stuart

2.  Walk along a sandy beach with Stuart

3.  Meet Steven Tyler

4.  Meet Bill Clinton ( I know that will piss off my Republican readers)

5.  Get together with all of my blog friends face to face  all at the same time and celebrate life.

Ok I challenge you to list  your 5 to do or who to meet  in your life time, (the person has to be alive) otherwise I would have included Mother Theresa and Princess Diana and maybe Elvis too)

You can post here in the comments or on your blog.

Nominated by THE DT

Wow, Dt thank you for the nomination, I see my blog as mindless bathering chemo brained rant and giant tissue, though I don’t blow my nose here.

Now I have to figure out how to do what I am supposed to do, ok I have the 5 blogs  part down, just have to figure out the rest,, okay DT send me detailed instructions on how to do this maimly how do I get just the name of the blog owner rather than the link HTTP, thingymabobber, and when I say detailed I mean that if i still can’t get it, I am gonna send you what I want to say and my passwork and let you post if for me.  I will send FUDGE in payment.

Did you ever?

Suddenly realize that you are walking around with your head up your butt and your foot just about to enter your mouth?  Its  a really uncomfortable position to find yourself in.  I started to again fall into that whole called the Pity Party, that place where you don’t want to be, that you have no business even venturing into and you are on the verge of lashing out on those that you are closest to.  Even though I had the good news of the match, there are other issues that are worrisome and of course me being me, I let it get to me and we all know that I need to be in contol of things, even if there is nothing that I can do,  I can at least worry and get myself frustrated and “bang” there I am falling again and seeing things as hopeless, when they aren’t as bad as I build up in my head. I think I am a Type A personality with some B and C thrown in there, and when you combine the 3 of them all hell breaks loose.

Like my dad said to me on Friday,, all I need to do is concentrate on the health and medical issues and the rest will take care of itself.   Stress is not doing me one bit of good.

Well that is my rant of the day. Counts are still in the basement, getting more platelets on Friday, and Sunday and next Wednesday, might be getting some whole blood thrown in on Sunday but won’t know til then.

Peace, Love and Rock and Roll

Love ya