Waiting, and more waiting

Well, it maybe more than 6 to 8 weeks now before I go in, we are now waiting on the final approval for my SCT from the insurance co.  Once they finally approve it, then my brother has to come out for his physical, and then we wait for the results for that, then they have to schedule him to come out for the actual harvest of his cells. Once the Dr has definitive dates I will get admitted the week before he does the harvest, I will be getting the Cells immediately upon harvesting, no deep freeze like they did with my cells last year.  So its a waiting game now, and you  all know what I think of waiting,,, I hate it. Waiting only gives me more time to think and worry, and worry some more.

I don’t want to have to do this to begin with, but as that I have no choice, I want to get it over and done with. I had been prepping myself to face this headon, but geez with all the delays its rubbing my nerves to a frazzle.

Anyway, the counts are still in the basement, I am still getting transfusions twice weekly, which is another PITA but nothing I can do about that.

Its hot, humid and sticky outside I wish it were spring or fall. sigh..

TGIF

Thank goodness another week is finally rolling to an end.  This hasn’t been a good week as I  allowed crap to get to me which put me into a major funk.. I am still trying to get my disability retirement crap straightened out, I have voice mail and unresponded emails, its so frustrating to not be given the courtesy of a email or return phone call acknowledging your questions and concerns, even if it were to tell me..” we are just screwing around with this because we can”.  It makes me feel like I am invisible and that my concerns are not important.

Other than that I am alive and kicking, my elbow from last weeks episode is extremely bruised and sore as all get out, I just have to deal with it for now. its not a pretty sight.

Have a great weekend

Time is flying

Hello world, I am still here.

I had my pulmunary (lung) and mugascan (heart test) on Friday. The technician that did the lung test had to draw blood from the artery in my wrist, as she could not access it, she has to go for the one in the crook of my arm. she then put gauze on it with the medical stretchy tape that sticks to itself.. Can you say Torniquet?  By the time Stuart and I got home, my arm was swollen to the size of a soft ball at the elbow and was quickly spreading upwards.  I called my dr and was advised to keep ice on it all night to bring the swelling down.. I will not gross you all out with pictures but right now I am bruised an assortment of yellows, greens, purples and black from below my elbow to my shoulder.

So with Fridays adventure it left for a miserable weekend for me as it hurt to do anything.

I had to get platelets and whole blood on Monday and I saw my Dr for the results of all the tests. Everything looks good, except the PET scan still shows a trace of the lymphoma in the groin area, but the Dr said that between the High dose chemo and my Brothers immune system, it will wipe that out.

Now we wait for the Insurance Co to give its okay for the SCT and we can get this ball rolling, I see my Dr again on the 25th and they are going to try to see if they can get my brother out here on the same day for his physical.  Again this all depends on the final approval from the Ins Co.  From there its just a matter of getting the results from his physical and scheduling with the  Transplant Floor, and the Unit that will harvest his Cells. and I will be admitted on or right before he begins the harvest to start my chemo. This time is really sneaking up on me.

I am ready to get this over and done with and to begin the journey back to health and life. (in all honesty I am shaking in my shoes and scared to hell)  But I can do this, because of all the love and support that I have from my family and friends.

Thats all for now.

BTW

HAPPY BIRTHDAY GINNY, I didn’t forget, I just don’t have your email addy and I didn’t save your phone number to my phone.

I figure I had better write something as I haven’t been too good about posting lately,

 The most exciting thing to happen this week is I scratched off an instant lottery ticket and won 75.00 woohoo.  I want to win the big money but I will settle for what ever I get.  I will have Stuart cash it in and keep it for him pocket money next week to cover parking expenses and lunch.

I don’t know if I told you but I have a new laptop courtsey of Stuart. my other one kept screwing up and Stu didn’t want me going without especially with me going into the hospital soon, and then the computer tech guy was able to fix and restore the other one, so now I have 2 lappy’s. So I will always have a backup to use if this one screws up.  Though I don’t have everyone’s email that has my main email address, I need those of you that haven’t yet to drop an email to my charter account. (just remembered that I did talk about this already, but I am not deleting what I just wrote)

My roses this year took off like crazy, they were absolutely beautiful this year til a couple of days of high winds beat the heck out of them.  Stu got me a trellis thingy for my one climbing rose bush its over 6 ft tall already and its only 2 yrs old.

I snuck in a manicure and pedicure last week, my nails had gotten so long they were getting on my nerves. I am going to get one last one in right before I go in, so that business will be taken care of.

I am up to 120 pounds now, I still need to put on a few more pounds in the next few weeks, I have been drinking Ensure with 8 ounces of milk and a banana every night before I go to sleep, and I have been eating a lot better than I was, sometimes my appetite surprises me.

Well I can’t think of too much more, I go for more tests tomorrow and I see my Dr on Monday, so I will post what he has to say when I get home.

Love ya

Update

Okay here is an update. I have to have a pulmunary and kidney function test and a mugascan (heart scan) in the next week or so for my Insurance Company to give the final Okay for the SCT. From there they will get my brother out here to do his physical and then within 30 days of the physical, it will be time for me to be admitted to start the chemo, and have my brother come out to harvest his Stem Cells. So I will probably be going in sometime in July.  Hopefully we won’t have the storms that we did last July that knocked out electric throughout the St Louis are.  I was finally allowed to eat real food and not a restaurant open for miles around, except for a Rally’s up the street and they are not my favorite.

I had to get platelets and whole blood today, it was a long and boring and frustrating day. Which is nothing new in that area.

I am here, I am alive, and starting to get nervous as time passes. but thats to be expected.

Love you guys and gals

BIG NEWS!!!!

It is with excitement and relief that I share the news that my Brother #1 is a perfect 10/10 match.  The better the match for my transplant the better the survival rates and success rates are, Thank You Bro. See we are more alike than we want to admit,,,heheheheh

In other news, I have COOKIES and COCONUT Junior Cupcakes thanks to the kindness and love of my Mom and Ginny (bff) Ginny and I go way back we have been friends since we were little kids and she is an amazing friend, its a shame she lives so far away. Love You Ginny.

And my dear laptop has bit the dust, without warning so I am getting a new one hopefully by tonight or tomorrow, depending on the Geek Squad and how fast they can put together the new one. My computer tech guy is going to try to salvage the old one if he can but with the hospital stay looming closer I just can’t take a chance of not having a working computer with me when I go in.

Thats all folks….

Oh yeah, anyone who has my main email address, please send me an email I have no address’s on stu’s and when I get the new laptop I am going to have to start from stratch. TY

Donating

I can’t donate, blood, stem cells, major organs, what do I have to give?????   How about 75% of the clothes in my closet?  I won’t be wearing any Business Attire for another year or so and if left in my closet they

1.  Won’t fit me anymore

2.  Will have gone wayyyy out of style

3.  Will dry rot on the hangers in the closet.

So for the  past few days when I had the energy, I sorted through a ton of Dresses, Pant Suits, Blouses, Skirts,Slack, Shoes and got them all organized on hangers and bagged up and tomorrow morning they are on their way to a Abused Womens Resource Center, where Women who have been in abusive relationships and are just entering the Professional World can pick and choose what they want or need to look good for that new job. Some of these outfits brought so many memories back from when I was working and all the people I worked with.  I needed to do something for someone else, I have had this desire to do so for a while and just needed to do it when I was mentally ready.

So to the  Women that get to pick through these goodies, I wish them all the sucess in the World and please wear them with pride that you all deserve.

So though I was not able to make a donation of time or money , or bodily goods. I just hope that I helped someone with this small token to the world.

Computers are a royal pain

Hi 

No I didn’t leave the country, I have be impatiently waiting for my computer to come back home from a reformat. what ever was wrong with the damn thing couldn’t be figured out, so I said reformate and reinstall, so now I have to move stuff that was backed up back to where it belongs. This is so much fun.

Nothing new on the Health issue, counts are still down, though my platelets jumped all the way to 20,000 Saturday, but were down to 6,000 on Tuesday, so I get to go back for more on Friday. damn it, the Dr said once they reached 10,000 he was going to back off of the transfusions and I thought I had finally started that recovery.

My rose bushes are budding like crazy, I have a Golden Medal bush that  has over 40 buds on it already. 4 of which have bloomed already, This bush is going to be awesome when they all bloom, will take a pic of it when it does.

Otherwise life is normal, well normal for me, I missed blogging, and I could have gotten on Stu’s pc but Ihate his keyboard, I have  gotten so use to the laptop , that the desktop gives me a pain.

Love you all

I hate incompetence

I hate when people can’t do their jobs properly. When I as the patient know what needs to be done and I relay what I need , and the Dr’s orders confirm it,  it turns into a total circle jerk it just pisses me off to no end.I have been getting platelets and whole blood on a pretty regular basis for the past month. my counts as of Thursday look like they are finally, but slowly recovering.
I had to go to the Onc Floor on Sunday as an out patient for Platelets, I had just gotten 2 units of whole blood this past Monday.

My orders stated 1 unit of Plateles wirh a Complete CBC before and after. They have me in the Library room, rather than a regular room, I over hear the one Nurse tell the Nurse that will be taking care of me that I get 1 unit of platelets and 1 unit of whole blood, I dash out and correct her and she reviews the orders again, oops her mistake. I have the blood draw before I get the platelets and my nurse comes back 5 minutes later stating she need to draw anothe tube for a Cross and Type, I remind her that I am not getting whole blood, she states the lab will not release the product without the C&T. geez. I finally get the platelets and request a copy of my pre counts, she hands me a paper with only the pre platelet counts, no wbc,rbc, hemoglobin counts. What the hell?

I call my Dr’s assistant on Monday and tell her the tale of what transpired the day before, when they did the post counts all they did was the platelet counts again. She was very frustrated as we need that information to see if things are still rising.
She told me that she would contact the Head Nurse of the unit and have it investigated. Oh hell I am going to be in that place for at least 3 weeks and I am pissing off the Nurses already.

Here is a list of screwups
No Tylenol or Benadryl before the transfusion
No Complete CBC before the transfusion
No Blood pressure check before the transfusion
No Blood pressure/vitals taken during the transfusion
No Post Transfusion Complete CBC taken after the transfusion.

My ANC is in the basement, was told no plants/flowers etc yet I was sat in a room that was filled with flowers and plants for patients in isolation. and on top of it all is where visitors sit and make a general mess. nothing clean or steril in that room whatso ever.

Needless to say I am not a happy camper,
ok enough of my ranting, I go for platelets in the Ashperesis unit tomorrow, those girls have their act together.
I will post the counts tomorrow, my platelets were 6,000 on Sunday morning, Dr says once I reach 10,000 he is going to back off of the transfusions and see if I am recovering my counts on my own.
_________________

You could save a Life

Starting May 7th the National Marrow Donor Program is typing people for free!In an effort to help all patients in need, the National Marrow Donor Program kicks off its national Thanks Mom Marrow Donor Drive on Monday, May 7, with a goal of adding 20,000 new donors to the National Marrow Donor Program Registry in two weeks. Thanks Mom will run May 7-21 and sponsor free marrow donor drives online at marrow.org and in more than 350 cities nationwide.Anyone between the ages of 18 and 60, in good health and willing to help any patient is eligible to join, free of charge, from May 7 – 21, at a donor drive in their city or by registering online.

Visit http://www.marrow.org/HELP/Join_the_Registry/Join_in_Person/Find_A_Drive/index.html to find a donor drive.
Or Visit: http://www.marrow.org/NEWS/Events/Thanks_Mom/index.html for more information about the drive.This is really easy and completely painless!! So get typed and save a life!!PLEASE pass this on! The more people we type the more people we save

If you are willing to be tested and be put on the National Registry, please do so.

My platelets were 6,000 today, they were 4,000 on Thursday,, this might be a good sign, got my fingers crossed,