Start praying

I have a 1 in 4 chance of a sibling match, I have 3 siblings being tested, unfortunately one does not match, so now I am down to 2. Start up the praying that one of them match, because otherwise I have to look into the donor registry and hope that someone out there in the world matches me and if I have to use an unrelated donor, the risks will be much greater.

I am grateful as can be that my siblings volunteered to be tested ,they are wonderful people who deserve a pat on the back for doing that for me. Something magical, has to happen I need a miracle.

THIS SUCKS

Oh Lucky Me

Well another transfusion today platelets were at 4,000, so they went up just a smidge.

 Guess what I get to do on Sunday.. I get to spend the whole day at SLU getting whole blood transfusions (2 bags at least) and more platelets, I am still dropping on the RBC and Hemoglobin and of course the WBC is still at 0.5 so I guess he is a bit concerned now. As far as I know I only have to be there for the time that it takes to give me the transfusions, not overnight, god I hope not. Just the thought of having to spend the night makes me cringe.

This throws off Stu’s plans for this weekend, he is going to work Saturday to make up for loosing today then he was going to spend Sunday shopping and laundry, thats all blown to hell now. Maybe we can do the shopping next wednesday after my appointment, that is IF we get out of there at a  decent time

Well thats all folks

The Cold is almost gone!!!

Finally I can breathe and hold a conversation without having to grab for the tissues ever 6 seconds.  I haven’t been sick like this in a long time and I don’t like it.

I go to get blood drawn again tomorrow and probably  another transfusion, but on a good note Virgie is back from her vacation so maybe I will get Virgie Platelets and they will kick my systems ass to start producing themselves.

Work is scheduling a Retirement walkthrough for me, they were going to do it next Wednesday, but with this being the busy season they have to postpone it a week or 2 which is kind of a good thing as it wil allow me to get a bit more healthy before hand.  I look forward to seeing alot of people and not quite looking forward to others. One in particular because before I relapsed in 05 she bugged the living crap out of me to have a Home party (won’t mention the Co name) lets just say cookware. she called and called to get me to agree to host a party, I broke down and had it. I relapsed and you want to know how many times she has called me since the party… absolutely -0- times. some friend huh? I use to buy Girl Scout Cookies from her daughter and candy fund raisers from her son. not anymore, no way, no how, I have even told people that at this point if she were to call me I would probably hang up on her. So I can imagine her actions at the walk through, treating me as a long lost friend,,not.  I hate feeling this way towards some people, but hell I have been to hell and back and getting ready to take that same trip all over again, and I heard zip from some so called friends, no phone calls, not even a hello emails. And Emails are another subject in its own right. People asked Stu for my email address, so they could keep in touch with me,, ok that is cool, but how about nothing from them but forwarded,forwarded emails than threaten 5,7 10 years of bad things will happen if you don’t forward the email to 10 of your friends, There are a few that do that continuously even after Stu talked to them about it. How about a personal email, give me some office gossip, what did you do on vacation, I have actually put a few people on my spam list,  when you get the same 10 emails from the same 6 people it gets old fast.  There is only one person that sends me the joke and inspriational emails that I read and accept on a regular basis and those are from Virgie.  but then she keeps in touch via, phone, personal visits, emails and yahoo IM. I love that woman, she knows what I need before I know I need it. We musta been sisters in another life.

Of course my blogging buddies send me stuff to keep or put a smile on my face and I hope those never stop.  You give me a kick in the butt when its needed or give me a virtual hug when needed too.

blood counts keep falling on my head

ok this is getting ridicuous,,

WBC     0.5

RBC       2.70

Platelets  1,000

Yup another platelet transfusion this morning. And my ANC is so low that if I am going to be around any other human beings I have to wear a mask, no food bars or salad bars, no gardening.. Its like when I was in lock down in the hospital all over again..damnnnnnnnn it.

And to think that I will be in these same shoes again in a few months is pissing me off. Only nature can bring my counts up and hopefully they will do a turn around soon.. I need Virgie Platelets, but Virgie is on a cruise and won’t be home til this weekend..

I met a man at the clinic today that had AML it is a form of Luekemia, he is 47 days out from his SCT and he looked good. we talked for just a few minutes, but it gave be back that CAN DO attitude.  I hope I get a chance to talk to him again.

Thats all for now. love ya

Another Saturday

Hi all, I think that maybe, just maybe this cold might be finally be breaking up, its about time.

I posted a new link>>>>> Zoe’s donation page, Zoe’s Mom Deb is a fighter of Leukemia, she recently celebrated her 1 year Birthday having an ALLO transplant, and her goal is to raise a million dollars for finding a cure for blood cancers, Zoe is working with her mom to obtain this goal she is going to participate in the Light the Night for the LLS society. She is a great kid and loves her mom dearly. If you have a few bucks to spare, please click on the link and make a donation to  sponsor her.  If you can’t don’t feel bad, I want to but can’t afford to right now, but I can share the site with more people. Zoe’s goal is to raise 3,200.00.

Other wise I am here, I am alive and working on shaking this cold so that I can resume my fight.

I love  you !

This is getting old

Hell another transfusion yesterday, this is getting frustrating now.  My WBC is 0.5, platelets were 3,000. RBC 4.0 and I still have this stinking cold. I look and fell like chit. I hate even looking in a mirror anymore, I am so thin and washed out looking that it makes me want to cry, which I did do before they transfused me yesterday.  I don’t look like me, I don’t feel like me, I want hair that doesn’t look like a fright wig, I want to put on weight I want normal back.

 On a good note,, I have chocolate chip cookies and tastykakes, thank You Ginny and Mom, and I ordered some goodies from an Italian deli place in Brooklyn New York, that I saw on the Food Network,  I got 2 pizza’s and 2 packages of Sausage and Peppers, yum. It cost as much for the shipping as the food itself cost, but it was worth every penny.

The Dr now has my sister and brothers test kits for testing for a match for me, it should be about 2 weeks before I know whether any of them are going to be a match for me. I will let you all know once I get the word from the DR.

Well thats all for now. I hope everyone is doing well

Arrrrgh

I, had a blood draw yesterday morning and my Platelets were down to 6,000, and WBC is like .4 so I have developed a bitch of a chest cold and had to go and get a transfusion of Platelets yesterday.

So I am just plain miserable right now. Nothing new here I have been visiting my blog buddy’s pages, but don’t have the brain cells to comment.

Any one that has any good home remedy’s for clearing up a crappy chest cold please let me know. I am going nuts here with the constant coughing.

The Funky Chicken

I am in a Funk, I feel like CRAP,

I am a chicken, and I found out yesterday that there is no option not to do the SCT, its a do it or the lymphoma is gonna kill me kinda thing. This so totally sucks. I have been so  discouraged by all of this crap not to mention that my self removal from the LLS has not even been noticed. I pop in to keep up with some people and on the threads that I had started, no one questions my absence. its like some of my so called friends in real, its like I stopped existing.

I am here, I live and breathe like everyone else, I am just so isolated by this, if it weren’t for my few friends in real and my dear blogging buddies and Stu of course I feel so totally alone in this.

I had blood work done yesterday and my counts were low my white’s were 1.4 , the reds were low but still in normal range and the biggy was my platelets they were 11, normal platelets are between 150,000-300,000. so I had to get a transfusion of platelets, I am at a high risk of bruising and can’t cut myself for fear of bleeding to death. So now I have to go get bloodwork done 2 times a week incase they drop further or stay low. So the low WBC is the reason that I physically feel like shit, and the overall frustration well that comes with the whole package.

Being officially retired now bums the hell out of me, before I relapsed in December 05, I was really beginning to make my mark at work. I had been chosen to do some instructing, and was called on to act as a Lead for not only my group, but another group as well. I had built up my confidence in myself that I could do anything where work was concerned, if and when I ever get to go back I have to start from scratch and I don’t know if I can get that belief in myself back again.   Damn it this SUCKS.

Thank you for listening, reading my rants, if I didn’t have this space to vent and rant I do believe that I would loose my mind

Love you!!!

Update 3:30pm

 If I weren’t so beat, I would be doing a HAPPY DANCE,,, after many years of being over looked Stuart FINALLY got the Promotion that He so richly deserves and has worked so hard to achieve.  Its about time they recognized what an asset they have.  Hell he has dealt with all the Bullshit with me and my health for the last 3 years and has not allowed it to affect his job in any way shape or form,, Congratulations to the love of my life,

I need a kick in the butt

Any volunteers?  When I get through to the other end of this journey, who wants to be the first in line to kick me and tell me that you told me I would be just fine.  This damn emotional rollercoaster ride is frustrating the hell out of me. One minute I am fine, feeling the strength of the fight. other times its just so damn depressing.  That is one of the reasons I removed myself from the LLS boards. When I have posted questions or responses, I almost feel that I never wrote a thing. if it wasn’t for Way and WillieB I get no response, no encouragement I am not part of the crowd and its frustrating. Way got the same treatment that I did the Zevalin/Rituxan about 4 weeks ahead of me so we have been comparing notes, and WillieB is getting set to go in for an Allo SCT pretty soon, I am rooting for both of them, they have been great to me and I want to be there for them as much as I can.  If they can do this so can I.

At least the weather is taking a turn for the better, so I can get outside for a bit here and there. I think the winter blues and cabin fever are/were getting to me a bit.  I like taking a cup of coffee outside sitting on the patio as the sun is shining, and just breathing in the fresh air.

I miss so much of everyday life, I am really going to miss work, now that I am recognised as officially being retired from my job. before this got to the point that it has at least I had a job to go back to.  When the time comes I will have to reapply for employment and my prior service will give me a bit of a boost to get back in. but there are no guarentee that I will get back in. 

Love you guys!

Opps

Sometimes I wonder where my head is at. I have been meaning to post all week and as quickly as the thought hits my brain, it poofs on me.

My counts weren’t too bad from the first blood test, my white blood cell count was low, but thats due to the sinus infection I have, I am waiting for the results of this pasts weeks test, the letter is probably in the mail box but I am to lazy to check the mail today, Will get it tomorrow,

 I am weaning myself off of the Luekemia/Lymphoma Society website Bulletin Boards, its been very sad and discouraging lately, alot of people have lost their battle with this crap and the complications of the SCT’s.  It literally has me 2nd guessing this whole thing. I see my Dr this Tuesday, hopefully he can reassure me on this, if not I might not go thru with it.  If there is a good chance that the complications will kill me in the next year, then I want to know how much time would I have without it. I would rather get 2 or 3 years feeling somewhat normal, that to be sick as a dog and loose the battle anyway. I am so frustrated and confused, Its like I am damned if I do, damned if I don’t.

Life is the same boring mundane thing that it has been, Stu is wonderful in case I haven’t told you lately.  How he puts up with me I will never understand.

Oh yeah, my disability from work FINALLY got approved, its only been a year since I applied.

I hope every one is doing good,