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We had to be in Chapel Hill at 8:30 am today for blood work and a visit with my doc.  Instead of getting up BEFORE the sun was even up {YAWN}, Jackie asked me if I would be willing to go to Chapel Hill Sunday night and stay over in a hotel, and get there bright eyed and bushy-tailed.  I think I had already planned on what to pack before he even finished the sentence.  Our support system with our church is Uh-MAZING.  I believe I've mentioned it a time or twenty; dear friends of ours took our girls in for the night and we were off right after church!

 

Wanna know where we stayed?! No?! Oh well, Imma tell ya anyway because I was so stoked.  Yes.  Stoked. Don't judge.

We stayed here:

The Carolina Inn

This place is GORGEOUS.  It's rated 4 stars!  My dear, sweet husband got a room for $65! 

We couldn't stay at a Days Inn, Holiday Inn..etc. for that price! 





I felt so spoiled by him.  And, so grateful he is such a good bargain hunter! ha!

This was also a strange event because I have slept on the couch since being home from the hospital, so sleeping in a bed was so weird!  But, the bed and sheets were OH SO COMFY!  It was very difficult to get out of bed in the morning! Since I have a wig to wear, I don't have to "do" my hair, so I can literally get out of bed, get dressed and put my hair on and walk out the door.  Well, and put on make-up.  Let's not kid ourselves, here. 

They have a restaurant there in the Inn, and let me tell you, delish! You can order off the menu or get the breakfast buffet.  Because I am still cautious, I need to avoid buffets, so I ordered off the menu and Jackie got the buffet.  I ordered an omelet with spinach, tomatoes, mushrooms, onions and goat cheese.  I discovered I am not a fan of goat cheese. Bummer.  It was very easy to scrape it out, so I could still thoroughly enjoy the rest of my omelet.  I also had a side of grits and 2 biscuits. They were oh, so good! 

Man, now I am hungry again.

After breakfast we drove the long 2 miles to the hospital.  {I jest.  It really was quick}

The nurse that drew my blood was very sweet and very talkative.  And, plus she laughed at my "jokes".  I liked her. 

She sent me out after she flushed both my lumens {sp?} to wait for them to call me back to see my doctor.  He looks like Abraham Lincoln, but younger.  I guess at one point Ole Abe was a young lad, but, anyway.  I just thought y'all should know. I think I may even have mentioned that before.  Oh well. I don't want y'all to forget.  If you ever go to Chapel Hill and see Abe in a white doctor's coat...that's him. But, I hope y'all never have to see him.  Cause he's a cancer doc. {I am sorry.  I am tired and rambling is just WORSE for me when I am sleepy}

They called me back and took my vitals.  All things were good.  My blood pressure was a tad low but not abnormal.

We got to a room and the nurse asked if she could get us anything, coffee, perhaps.  No, thanks, but I'd adore a hot chocolate!? And, just like that, it appeared in my hand just 5 minutes later! 

About the time the piping hot chocolate was placed into my shivering cold hands, my doctor came in! That was SUPER fast.  He is super Abe. 

We chatted about how things were going and what was on the agenda from here on out.  Which basically consisted of me listing and forgetting and remembering again everything that I felt needed mentioning.  My catheter stitches had come unhinged, my slight cough, when do I need to go back to my local doc for blood checks for here on out?! And, a few other things that I can't recall at the moment.  I'm not surprised. 

I am getting brazen and kind of crazy the longer I have this AML.  I didn't want to hear in the beginning my "chances" of beating it into remission and curing it.  But, lately, I want to know.  I wish I had kept my mouth shut.  Medically speaking.  I KNOW God can cure me completely of this here on earth.  I KNOW He can.  But, medically speaking, they say 30-40% chance.  Gulp. That stinks.  It's better than 10% or 0%.  But that's not a GREAT number.  Jackie, bless his heart.  He tried to encourage me by saying..someone has to be in that 30%-40%...it might as well be you.  Bless.

It's okay though.  I am too far into to go back now. Ha! I have to keep pushing forward and look towards the cross.  I can't look at the numbers. MY GOD can move mountains.  The winds and seas obey Him.  And, so will my leukemia. 

Back to my day, today:

I did remember to mention my stitches coming undone.  He called Becky, my nurse navigator {she's like the go between and in charge of my case with clinical trial I am on}  She also happens to be amazing.

She called the people in VIR.  Which means...the people who put catheters in, as far as I am concerned.  I can't remember what the full spelled out name.  Again, not surprised.

Before we went there, we had to meet with the dietician {a meeting I didn't know about until I got to the hospital} So, we went downstairs and waited for her.  She came and we only spoke for about 3 minutes. She just wanted to check in and see how things were going.  They want to fatten me up.  Good luck.  I've been trying for 25 years.

We went back upstairs and waited for a very long time. Not complaining. Just stating facts. Ha!

I finished the book I had begun a week before and I hadn't had time to pick it back up again. {Melanie Shankle's, of the Big Mama blog, book: Girl with the Sparkly Green Earrings; it's hilarious and very honest.  LOVED IT.} so, waiting for a long time wasn't a complete waste of my time.

When they finally called me back, I was put in a "room" with a curtain for a door and prompted to change into a hospital gown. And, waited. A while. Again, not complaining, just facts. :-)

A new nurse {this seemed to be the 4th one I had seen that day}, came in and we talked about what needed to be done and she took a look at my site.  She called the doctor {not MINE, the surgery one...gulp, again.} and asked him to come look at it to make sure everything was still in place because she thought maybe it had slid out a teeny bit.  My first thought was SURGERY! YAY!

Again, I jest.

My first thought was actually, oh crap.  Surgery.

He came in and took a look.  THANKFULLY it said it wouldn't be worth the trouble to replace it.  Thanks, mister.  No, but, I was thankful.  It was still in the right place and if it had slid out any, it wasn't enough that the cuff was coming out, so that was good news. 

Then came the big decision.  Where do we put the stitches? Normally, at Chapel Hill, they put a stitch right where the tunnel goes into my skin. {GULP}.  The stitches that had come out were further down, kind of anchoring, rather anchorED, the whole of the catheter down. Unfortunately, it didn't give my skin breathing room and I had a little sore under it.  So after debating within myself and with the nurse of the pros and cons of placement {yes, apparently I am THAT patient} I decided that they do this every day. And, hey, those other ones didn't stay in, so let's just do it their way.

She got the necessary items for the procedure.  Lidocaine  was injected through a needle...almost in the same spot of the entry site.  Ouch.  Then, she started lightly tapping the area with the end of her scissors to see if I could feel it.  I could. Thanks.  Stop it.

So, she had to give me another shot.  I told her not to count down this time.  Just do it.  I didn't scream that time.  I was fully numb then.  We chit-chatted about TV and the common dislike for the trash they get away with putting on the screen these days.  She finished and it was painless. She then had to clean the area again so she could put the dressing on. Then, I orated her a full on instruction manual with placement and the best way to actual putting it on so that it didn't pull down on my skin.  {again, I am THAT patient.  I hate being THAT one, but, I hate being in pain, more...so I win.}

I told her she was going to be so ready to get me out of here.  But, she assured me that it is my body and I know what works best for me and don't ever apologize for letting people know that, and that they were there to help ME.  I've seen that tree before.  I have heard that speech before, but I still apologize.  I don't want to seem like a nag.  I know I am not being one, but, you get my meaning.

So, I got dressed and booked it out of there.  I was so hungry! 

We had arrived at the hospital at 8:20 and left approximately at 2:20pm.  6 hours at the hospital. When it was only supposed to be an hour, 2 at the most.  I don't want y'all to think anything negative about this place, though.  It was just a long day that I wasn't expecting.  I still love pretty much everything about Chapel Hill's facilities.  I would recommend them to anyone needing a top notch hospital.

We stopped for our lunch and I convinced Jackie to let me go into Nordstrom Rack!  I had never been in it and I wanted to see if I could find anything cheap I needed. Ha! I walked in and my jaw dropped.  I wanted everything.  I am a marketers dream consumer.  Set up a pretty display and I am

sold.

 

I picked out a birthday present for a dear friend, and half tempted to keep it myself.  Or atleast go back and get another one for me...ha!

Jackie didn't want to stay because we really don't need to be shopping.  But, I love browsing.  It's part of the fun.  And, if I find something I like, I keep it in mind when I go shopping at cheaper places.  Anywho, he finally broke down and went to browse the men's department.  I went to the shoes.  BIIIIIG MISTAKE.  I am a shoe girl.  I LOVE shoes.  Heels, flats, wedges.  I love shoes.  And, there were not a shortage of cute shoes in my size.  Actually a surplus.  Most were in the 40-60 dollar range.  But, I did run across a few pairs in the CLEARANCE section that were $100+ !!!  I was flabberghasted.  Of course, I had to try on a few of those.  What do $102.95 shoes feel like.  Like butta.  I had to get them off before I slipped them into my purse.  I wouldn't have gotten more than the heel in there, so, I would have been arrested and that would have just been embarrassing. 

I left the shoes aisle coveting all the shoes I left behind, but happy with the fact that I was able to buy a solid color maxi skirt and the gift for a friend.  I was fine with that.  I wouldn't think twice, though, if Jackie told me to go back and get a pair or two. ;-)

 

We got on the road and it was pouring down rain pretty much the whole way home.  I was exhausted so I fell asleep.  I woke up when we reached Kinston and Jackie got a phone call from a lady on my transplant team.  I held my breath.  They talked for a few minutes and he hung up.  He told me she called to talk about our insurance and the donor testing.  Then, he said they think they have 11 possible  matches!!!  That is awesome news! Praise the Lord!  These are not perfect matches, at least, I hope ONE is.  These are just preliminary matches.  The potential donors have to be contacted, they could say yes {PRAY!} or they could say no, not now.  Then, they have to go to their local doctors and get blood drawn and then, the donors will be narrowed down.  The closer the match, the more testing they will do to make sure it is a perfect match.  But, starting with 11 is amazing and so much more than I ever expected!  So, please pray with me that as many people as possible will be willing to continue on with testing to be my match!  They have some that are here, stateside and some that are even international.  I wonder if one is Australian, I'd love to have Aussie blood! haha.  Unfortunately, I don't think the accent is in the stem cells, so, I suppose, anywhere would be fine. ;-p

 

So, praying that I can be in that 30-40% and that the perfect match will be found soon!

 

Psalm 103:1-6

 

Bless the Lord, O my soul; and all that is within me, Bless His Holy Name.  Bless the Lord, O my soul, and forget not all His benefits; Who forgiveth all thine inquities; Who healeth all thy diseases; Who redeemeth thy life from destruction; Who crowneth thee with lovingkindness and tender mercies; Who satisfieth thy mouth with good things; so that thy youth is renewed like the eagles'. The Lord executeth righteousness and judgement for all that are oppressed. 

 

 

Psalm 138:3

 

In the day when I cried, You answeredst me, and strengthenedst me with strength in my soul.

 

 

Ephesians 6:10

 

Finally, my brethren, be strong in the Lord, and in the power of His might.