Thursday, January 13, 2011

First day of school

I finally took a picture of the painting I did a couple of weeks ago!

Well, despite the continued icy road conditions, my evaluation day was still on!  Mom picked me up at 8:30 and we headed to the hospital.  I slept last night, thankfully, but my dreams were filled with stress dreams about the looming bone marrow biopsy.

Fortunately the biopsy was scheduled for early in the day so I wouldn't wait in anticipation for too long.  The nurses at the Bone Marrow Transplant of Georgia group are all really nice, and when I expressed my concern about this whole thing they said not to worry, they would give me something to take the edge off.  Take the edge off???!!!  I thought, hmmm...not cool.  I don't want to remember the edge, or anything near it.  They said they can't give me sedation because of risks, and recovery time.  They did calm my worries a bit saying that they do 5-6 a day, so they knew what they were doing.  I thought this is good....maybe we can avoid the 6 tries to get some marrow like last time.

So I really had no choice but to suck it up and do this.  I get on the table, mom holds my hand, and they give me some sort of calming drug.  I could feel it relaxing me, thankfully.  But I could also still feel the needles for the lidocaine injections, and I started to get pretty scared.  But by the grace of god, this wasn't torture.  Turns out what the previous nurse said about my bones being really hard IS true.  This nurse said of all of these she's done, I was number 2 in hardest bones.  My pelvis is also tilted a bit so she had to readjust her angle.  I felt the pressure, and I felt the marrow being sucked out, and it didn't feel great, but I didn't freak out, I didn't scream bloody murder coming from the bowels of the earth.  I was able to deal and the experience wasn't horrible.  Good thing too, because apparently I have to do these again over the next year.  I am so so so grateful that these nurses have made me less scared of this.  Now I am just sitting here with a pain in my ass, but I can also deal with that.  :)

Anyway, that was just a part of this big evaluation day.  I told mom as we were nearing our last appointment that it felt like the first day of college (without all the excitement though....).   We had a schedule and went from appointment to appointment and had to find our way around the maze of Northside Hospital.

So today I have been evaluated:
1.  Labs/Bloodwork 10 tubes, I counted!
2.  EKG
3.  Bacterial Infection swabs
4.  Bone marrow aspirate
5.  CT scan of the brain
6.  Echocardiogram
7.  Pulmonary Function tests
8.  Blood bank services
9.  Financial services
10.  Psychological evaluation had to be rescheduled due to weather.

This is real.  This is all real, and it is really happening.  It hit me like a ton of bricks as I was sitting on the table, getting my labs drawn. I was asking the nurse all kinds of questions.  I do have to get another port put in, it will be above the surface of the skin, and I have to leave it there for at least 30 days post-transplant.  My red blood cells are so low right now they are considering giving me a transfusion.  I have to be in everyday for up to 50 days to get labs, transfusions, IVs.  They say to expect being there 4-6 hours each time.

I also read in the little booklet that I got today that I really shouldn't be in public for 3 months post transplant.  3 MONTHS!!  I was thinking 30 days...this makes me sad.  But really, 3 months is nothing compared to a lifetime.  I get happier when I think of it that way.  I also get happier when I see that I can have more visitors than I thought (I thought it could only be two)...so silver linings :)

So I am sitting here on the couch, feeling exhausted. Michael is making dinner--he got me a nice good quality steak to help those little blood cells.  A lot is going through my mind and I realize this is a chance for growth.  A lot of people have done this and survived and are cured!!  I also read in the booklet today that for most people we can stop taking medications after a time and resume a normal lifestyle--I won't be tied to the medications for life.  This is a relief.  I am also very grateful that I can use my own stem cells.  This process is infinitely easier than those who have to get a donor.  So gratitude still is beaming bright despite my fears and trepidations.

Finally, as far as logistics...I won't go back again until January 25th for my "Education Day" where we discuss my results from today and the plan going forward.   So I won't be getting more chemo until at least after the 25th.  That is two more weekends of living!!

Thanks to you all who sent me love and prayers today for a good day.  You are the best!!

2 comments:

  1. First, love the painting! Excellent to finish it! Also, thanks for sharing this experience. You are very brave. I know each step is scary, but you evolve each time you walk through it. Bravo! Keep focusing on the journey.
    In my prayers,
    Kate :D

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  2. I will pray for you.When you have tolerated all this then now just a small bit is left.You can do that and you have to do that........

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