Saturday....

It's nice that no matter what is going on in your life, there is just this feeling about Saturday right? It just feels like the day where nothing HAS to happen. You can just chill and all is well. That is how I felt today on the whole. It was mostly an even-keel uneventful day. Minus about an hour.

There was this one period of time today that I had the bestest opportunity to chat with a few of my favorite people on the face of the earth. It was so nice just to hear their voices and to hear some quick updates on what is up with them. I love my friends. Yes I do.

Other than that.... the day has been both rough and just plain boring. Again, a candid moment. So, now that I have been a month through all this crazy chemo and transplant it's time again for my "cycle". Sorry boys, I gotta talk about it. Come to find out, my body will go through the signs of a cycle without the actual cycle. Cramps, hot flashes, all the good stuff, but no relief. Just my body going through the motions without anything to release. OK, that was very candid, but I was in some major pain today. I tell ya, ladies be grateful for your cycle. I finally got to take some Tylenol and it quieted down. But not till after I threw everything up I had ever eaten. Which of course was like a fruit cup and a jello cup. ugh.

Gentlemen, you can now read on...... Speaking of the food. This is getting ridiculous. Were I ten, I would be in heaven living off of jello, pudding and fruit cups. Really. But I consider myself a type of a "foodie" and boy do I miss food. My stomach churns when I think about food (and not in a good way), but I sure miss food. This mucositis couldn't go away faster.

Last night was fun hanging out with B&B. We played Phase 10 and even though I could only manage about 8 phases before I needed to lie down, I kicked some booty. That's right, Phase 10 Queen! It was Super fabulous just to see those two. They are SO great. Love them. AND they brought me this awesome book called "The Book of Awesome". I'm not kidding. You should all check it out. Thus far I'm loving it. :)

K, well, My momsy and I are off to acquire more pudding and jello cups so I should be off. Love you all heaps.

Um....I am such a slacker.... yes I know

So, really there was this thing that happened yesterday that is called a brain lapse............ Hence no blab. Sorry. But, here's a twofer for today. Twofer.... ha ha... remember when burger joints had "twofer" deals. like they actually called them that... awesome.

Anyhooo.... your twofer today is just two days in one blab entry. yay for fun.

So, yesterday was my first day back at the clinic. Not too busy, just a blood draw and then a meeting with my "team" so they could check me over and make sure that I was really ready to be out and about. Full clearance. I am apparently doing SO SO good. Wish that would manifest more in the way I feel all the time, but patience is key I'm being told. One bright spot of the team meeting was that Dr. F, who was my practitioner at the hospital for the good majority of my time there, is now my Dr. here. I think I wrote about him before, or maybe my madre did. He is the one from Costa Rica. He's hilarious. So, that was fun to have the same practitioner. Consistency is a good thing. Anyway, they tell me that I have great "numbers". 

Numbers...... Let me esplain. Everyone has a certain number of blood cells in there body. Thousands of white and red blood cells, platelets, etc...... Going in to this whole process I had high numbers just like every other healthy human being. What happens is, during chemo and such your numbers fall. Now, for the reasons of transplant, they WANT your numbers to fall to zero. Cause then the new stem cells they give you will not have to fight for space. They can move in with their little suitcases and dress bags without too much argument. So, my numbers dropped down to zero and I had to have a couple platelet transfusions, but that is all and well, totally the purpose. Then, after the transplant, my numbers actually got larger and larger quite quickly.  My white blood cells (specifically my neutrophils, which are a type of white blood cell) are back up to the point that I am fully engrafted. Engraftment is when the stem cells you are transplanted with start creating blood cells. So long story short, my numbers are awesome and my body seems to be accepting my transplant quite nicely at this point.

Now there was some mention in one of my mother's blogs about GVHD. This is a diseases called Graft Versus Host Disease. This happens after a transplant when your body fights the new cells. I mean really, like your body isn't going to notice when they transplant a new person into you..... Dr. F. called my Neutrophils my Marines. It's a good thing that I have so many since my transplant so if my body decides to fight the new stem cells, the new stem cells will so win. Well, we can hope. I have not gotten GVHD yet, but they say that 75% of transplant patients do get it. Whether bad cases or mild cases. So, that's one thing we are watching out for right now. We can always pray that I will stay in the "unique" realm of the world and just skip right over that part of the transplant process... Yes? Yes. That would be nice.

Anyway, enough of that. If there are questions, let me know. After the meeting at the clinic my mom and I chilled for a bit, checked out the roof top gardens here at PGH, ran to a few stores and then home to crash and burn for the night. I get SO worn out SO quickly these days. Today we had an early blood draw and then we came home. I do have to still be hooked up to IV Fluids once a day for four hours every day, but it is easy. We just hook me up here at home and put my infusion pump and the fluids bag in a backpack so I can run around and do whatever while I am hooked up. It is much nicer than being hooked up to that big tall tower of metal like the one at the hospital. So, I was hooked up today for four hours and now momsy and I are watching My Fair Lady. Love. B&B are coming over tonight to play some games and just generally chill, that will be fun. Other than that today is just a hang out day. That's enough for today don't ya think? yes. k.... buh bye.

Freedom Freedom, yes I got a lot of Freedom!!!!!

That little ditty was sung to to the theme song of "Beat it" from the great MJ. I thought since I had "beat it" from the hospital today it appropriate.  Yup, you read that right. I'm OUT!!!! Around two pm today they unhooked my last tubing and said goodbye and that they don't want me to come back. They meant that is the nicest way possible, meaning that they hope nothing goes wrong enough that I would have to go back to the hospital. I tend to agree on that point. No desire here to have to return any time soon. Can you believe that I just spent some odd three weeks in a hospital. That just makes me gag just thinking about it. Tonight will be the first night in so long that I won't be woken up 15 times for vitals, or blood draws and medications......... I mean really. They say that rest is the best medicine and yet..........

OK, so now for some pictures. I received SO many wonderful notes and cards throughout my hospital stay that we had to hang them up all around my room. Well, since I left today all those cards and notes had to come back with me and my mother decorated my bedroom here. So, here are a couple lovely pics.

This one is of the window in the wall of my bedroom here at Pete Gross House.  Lots of cards and notes and one giant fantastic banner made by my J&H Family. And since I cannot have real flowers, my loving mother got me  a GIANT tulip balloon. I wish you could really see it up close. It is the coolest thing and HUGE!!!!! So perty.:).

And here are more cards and notes around my closet here are PG. I can't tell you all the difference it made in my hospital room to have all these notes and kind words all over the walls surrounding me. I certainly was better off for it. And I am SURE, if you WANT to send more happy notes and such, They would just add to the joy. 

Well, even though I'm out of the hospital I am still a LONG way from recovered. For example, just the ordeal of leaving the hospital and a small trip to the clinic for a few minutes was too much for me. So, that being said, I am hanging up my lappy top for the night. I know I know.... It's way early, but hey, I'm wiped..... Love you all so much. Honestly could NOT have made it through that hospital stay without each and everyone of you. Just know, I won't be able to do the next 3 months without you as well,,,, So, till tomorrow. I'm sure we will have more fun updates. :)

So, what is this thing that I'm writing on again? A Blab...????? Hmmmm.

like it has been forever since  I wrote on here. My momsy has been doing such a magnanimous job that I was thinking of retiring all together. Just kidding. She has been a blog lifesaver, but to tell you the truth I have missed it a bit. So, on with my entry today.

Biggest news ever, there is a HIGH possibility that they are releasing me from this medical facility TOMORROW...... Yup, you read that right. Now, I'm trying to not get my hopes up tooooooo mucho because it still could be a couple more days. But as soon as one of the doccas said that this morning, I told her that I was gonna hold her to it. Tomorrow or bust right? Nah, I will be OK if it a day or so later I suppose, but how much would I love to exit this place?. YES. Not to say that everyone hasn't been amazing, seriously, I think that I have lucked out with nurses and providers. They are all so upbeat and nice.

Next thing I gotta say. There were a few things that saved my sanity while here in the medically large and spacious building. Of course, all of the cards and greetings and notes and gift boxes have been immensely appreciated. I can't say that difference that have made on the walls of my hospital room. My mom has been diligently taping every card or note to my wall. Everyone comments on it when they come into the room.

Then, there's my Kindle. My co-workers all banded together a gave me  a Kindle as a "go-away" gift. and yes, I meant to say go-away gift. :) nah, but this little book reader has been amazing. when reading was too much It would read to me. Kinda like having even more company in the room with me.

I'm exhausted. Really, I could just sleep the day away, but then there would no sleeping at night and that is the worst. I have taken a couple naps today, but I'm done. Its too late, I won't sleep later. Well, I know I didn't write a whole ton, but I'm done now, I going to go stroll through the halls. Love you guys. thanks again for everything.

Sleep, sleep, sleep

Dani slept 8 hours last night!  She was so refreshed this morning.  The doctors are very pleased with her progress.  Apparently she had a very severe case of mucositis and it did extend from her mouth clear to her b
um, so they think the discomfort she is experiencing now is just that still hanging on.  They say her taste buds have been damaged and it will take a few weeks for them to start to work properly again.  So she is to steer clear of her favorite foods for a while, so that she won't hate them later.   

They say we may get to go back to the apartment sometime this week.  Keep all your fingers and toes crossed!  She is very excited and we even talked about some things we plan to do when she feels like it.  She said "Can you believe we're making plans?" 

We have visitors today! M and S from Tacoma have come to see us here at the hospital.  It is so good to see them.  M's baby is due on the 28th and we will have 20 grandchilldren!  What a wonderful  blessing! 

She had applesauce and grape juice for breakfast this morning, and mashed potatoes and gravy this evening.  They have taken away lots of her IV stuff and changed her to oral medicines.  That is progress toward leaving here.  She thinks 3 weeks is plenty of hospital time!  

That is All for now,

MOM

Good Day! Good Night?

Today has been a GOOD DAY!  Dani has felt pretty well, ate about half a bowl of cream of wheat, drank a swallow or two or cranberry juice, and ate half a banana in the morning part of the day.  There's only one problem.  Apparently everything tastes like DIRT!  Yep, you heard me.  DIRT!  Oh, well, we are hearing now that the mucositis that we thought was gone, lingers on to cause these fun developments.

We walked 7 times today, and she rode the bike for a few minutes.  She was determined not to sleep a lot so that hopefully she will sleep tonight, so she only took two short (30 minute) naps during the day to rest up from all that exercise.  Later in the day she ate a few spoonfuls of chicken noodle dirt and worms, along with a saltine cracker that about sent her into upchucking.  But she got some down and it stayed there.

It it now 10 p.m. and the time she has decided to go to bed.  So here I sit, typing along as she settles in for the night.  Hopefully it will be a peaceful one.  Her numbers are wonderful, she is actually fully engrafted, not to say that lots of her blood numbers have a long way to go, but the new blood is taking hold and doing its job.  In fact, part of the distress that she is feeling may just be GVHD.  Probably there will tests tomorrow to determine that for sure.    Today we are satisfied and on the road to recovery. 

More later

Bye for now

MOM

New Pictures!

It has been a LONG time since yesterday mid-afternoon.  I left the hospital to take the shuttle at 6:30 pm and Dani seemed to want me to stay so I asked if she wanted me to get the car and come back.  She said "Only come back if you want to come back."  So, guess what I did.  I came back.  I arrived back at the hospital about 9:30 pm and by then she had had diarrehea and vomiting at the same time, THREE TIMES!  She was miserable!  I had come back with the intention of staying until she was settled then heading back to the apartment, but that was not to be.  She asked me to stay so I did.  Needless to say, neither of us got much sleep.  She was not running a fever, and about 2 a.m. she discovered that she could swallow and took some medicine by mouth with some ice water.  That should have been cause for celebration, but she felt so badly that we just got a quiet HOORAY. 

Today has not been as bad.  No throwing up and the diarrehea seems to be under control.  In fact she has had two walks, and even rode the stationary bicycle in the hallway!  She also has eaten a small container of jello and had some 7-up.  So we are doing well now.  The nurses have been diligent about bringing in nausea meds every 2 hours.

The doctors came in all excited this morning to tell her how good her numbers were and they felt really badly that she felt so miserable.  So blood numbers are great, there is a chance this was the GVHD that we have been expecting, but they could not be sure because there is usually a skin rash that accompanies it.  They will do a test in the next few days to find out for sure, and if it is GVHD, they will treat her with steroids.

When she felt better this afternoon, we shaved her head again because the hair was falling out, so I am attaching a picture for you all.  I picked out a cute knitted hat for her from the basket of them that volunteers make for the patients so she has that on because her head was cold.

Hopefully tomorrow will be a more pleasant day for Dani.  If she can begin to eat food (food being jello, popsicles, water, etc.)  she will be closer to being released.  She is currently taking a nap, her first in several days.  That's all for now

Bye for now

MOM