Tuesday, March 11, 2014

Getting Up To Date

Since I last posted a lot has happened. September 12, 2013 I had a seizure, or a series of several small ones, I think. One of the meds had built up on my brain and bang. All I remember is big headache then bang, nothing. I ended up at Indy for 5 days and do not remember 3 of those at all. Do you know how hard that is to deal with. NO Memory of what I did or said. I barely remember the last 2. Really scrambled brain for a while. I was afraid I might be ready for “the home”. Then the GVHD(graft vs. host disease) hit. I won't go into that. Just know that it is not good. I still have bouts of it but it is getting less and less. I am now at +262 days old. I am in remission.

The worse part of all of this has been the loss of passion, identity and the exhaustion. Short term memory is a problem but that could be related to the meds. I hope that improves as I get off of them. I've forgotten what normal is. Maybe it is not important.

My brother is my hero.

My cousin, Mike and my Aunt Pauline died in November. She had cancer too. I could not go to her funeral. I still cry about it.

Sunday, September 8, 2013

It's been quite a while since I've felt like writing. I don't think I'd have been very nice.  I was covered in a rash that itched insanely.  After a skin biopsy it was found to be an allergy to one of my meds, one that protects me from getting a type of pneumonia.  I am allergic to all the meds for it, so now I have to go to pulmonary function to breathe in this foul tasting antibiotic that coats my lungs and protects me for a month at a time.  After the rash went away I still itch and my entire body is pealing off.  The bottoms of my feet are nice and soft, but my hands and a few other places are still pealing.  For a while I looked like I had the mange.  On a good note, my hair is coming back in.  It's about a quarter inch long in some places and stands straight up. I'm a little prickly.Otherwise I'm exhausted most days, I shake like crazy and I freeze all the time.  Apparently my system is changing.

I haven't been able to get passionate about anything I did before.  I'm going to try to get interested in my genealogy again. I can hardly remember how to do that.

I am 76 days old now.  On my 100th day I should hit a mile-stone.  I hope I am fully grafted.  I also hope I no longer have to wear the mask when outside.  Looking forward to that!

It's embarrassing but I am very forgetful so I hope this posting is not to bad.  I can check spelling but not grammar or readability. I will apologize now.

Friday, July 26, 2013

I am at day +32. I am feeling much better, though I am still weak. I'm not good at this weak stuff, but everyone keeps saying that it takes time. I got to leave the hospital July 10. I've done really well, but it is now a waiting game. My numbers were really great last Monday.

Whites: 3.8
Hemoglobin:  9.2
Platelets:  107

I haven't seen those kinds of numbers for at least 8 months.  It makes me smile when I look at them.  I have lost a bit since the hospital.  Let's see, a little weight, my strength, my color, my mind and my hair.  I'm just not so worried about my hair as it is the loss of strength and my mind that worries me daily.  After all there are wigs that could replace my hair, or hats.  How do you replace a mind?

My brother is my hero.  He doesn't like to hear himself referred to in that way.  He laid very still for hours while they removed his blood from one arm, run it through a machine to take out what I needed, then put it back in his other arm.  They did all his blood several times until they had enough of what I needed.  He had to take shots before hand that made his bones hurt terribly.  He went back to his work, which is running a local food pantry, in just a couple of days from the time of the transplant.  Our coordinator said she had not seen someone so eager and joyful about giving. Turned out we were a perfect match which made the whole thing easier for me. Oh yes, he was going to have his poor knees replaced but will have to wait a year now because, he was my donor.  He knew that but I just learned about it lately.

Thursday, June 20, 2013

Home Away From Home

My home away from home for a while.

Hope more later.  Feeling better today.  It was a good day.

Wednesday, June 19, 2013

Day-3 and Counting

So, third day into the chemo process. Not feeling so good and very tired. The nausea gets worse each day. I am on day-5 so I still have a long way to go.

This is not my favorite thing to do. My limit is 2 days in hospital then I lose my mind and they let me out. I have to be calm. I also hate to take meds. That seems to be all I do now.

Nice people working here. Everyone is clear about what is going on and I appreciate that a great deal.

Saturday, June 15, 2013


Well, I got the news Thursday that it is a go! All my paperwork is done. I am mentally ready for this. I know it is going to be horrible. I do have a problem with how long this process of healing will really take. But they are very clear how it goes each step of the way. The weeks in hospital, the months of trying to get stronger and the long time of watching for rejection.

They call your day of transplant Day 0 and the will be your new birthday. My Day 0, new birthday, is on the 24th of June which is my donors actual birthday. How much more poetic could that be?

Monday, June 10, 2013

Ready, Set, Go?

I know, it's been a while.  There has been a lot happening here and my energy level is just 0. I won't go over my numbers since mid-May, mostly because it is the same old thing.  I was transfused on Sunday but do not feel better, stronger or refreshed. Just exhausted.  I will be getting a CBC in the morning.  I know I will need platelets as I am becoming covered in ugly petechiae (tiny purple/red pinpoint bruises).  I won't stay to see what the numbers are as I won't have time. so they will have to let me know by phone. I have another appointment in Indy.

My sister was tested to be my donor but was not a match. My brother was then tested and matched!  What is even better he wanted to be the one to match so bad. I worry about if he will be ok.  I have been assured he will but you never know what is just around the corner.  He is worrying about me. He says are you sure you're ready to do this? They are very honest about everything from the beginning so he knows all the risks.

Today I only had 4 appointments. Last week I had 7 tests in one day. Today it was easy and tomorrow there is only one, a class.  I will be getting a POA and a living will done, too. After tomorrow I will not have to go back until admission, unless something crops up to reschedule it. So far my brother and myself have passed all the tests.  Everything is ready.  If there is a reschedule, it will be only days or a week.

I am ready.