Crazy

Hello blogollowers, 

These past two weeks have been kind of crazy.  I got a fever and ended up in the hospital. It was quite the hospital stay, complete with a blown IV and swollen arm, pain meds, hallucinations and a change in plans.  By the way all this happened on the same day.  Saying it was overwhelming is a bit of an understatement.  

The best part of this hospital stay is that I met the oncologist here and am able to do my chemo treatments in Colorado!  It will be so nice to be around family and to not have to fly before and after going into the hospital.  I will

Start my next round tomorrow.

I have been home for a few days and am feeling pretty good.  I get tired pretty fast but for the most part I'm actually able to get off the couch!  My friend Jenna is in town visiting so it is great that I can do stuff with her!  

I have a lot more to tell you but as I mentioned before I am pretty tired so this will have to do for now

Ttyl,

Anna

Lemoney

As many of you may have seen I have begun referring to myself as a lemon.  My sister started it one day during a phone call, she mentioned that I am basically a human lemon.  I'm not sure if she really meant to call me that or if she was joking (probably the later) but either way I liked it, thought it was pretty hilarious, and described me perfectly.  

For those of you who are unfamiliar with the term a lemon, it is one often used in the car world.  You by this great new car, only to discover it has all kinds of problems.  First the air conditioner leaks, you fix it.  Then it starts making a weird noise and it turns out the timing belt broke, then the engine goes out, the windows won't open and so on (I really know very little about cars!)  Basically the car has nothing but problems and you end up fixing one thing just to discover something new.  The funny thing about lemons though is they don't completely die on you.  Oh no that would be too easy, they are fixable they just continue to drain you of your finances, until you finally decided enough is enough and move on.  Well in the human world, I'm a lemon! (okay so maybe thats not such a good thing, but hey I like typing !)  First my lungs and digestive system didn't work well, then we added on the fun of insulin and blood sugar issues.  Then the lungs got so bad that they were replaced, only to discover cancer.  Yup, I'm a Lemon.  Unfortunately there is no return policy on kids so my parents are stuck with this lemon, and in true lemon style I just keep plugging away.

This week brought the end of my first round of Chemo.  It was not that bad.  I was expecting it to be way worse but honestly it really wasn't any different from any of the other iv meds I have taken.  It was a different color, a lovely light pink, but that was about all.  It did make me very, very tired.  I literally slept all day and night, pretty much the whole time I was in the hospital, I just felt that tired.  As far as side effects go I haven't felt them very much.  One of the nurses told me that the side effects usually show up a week or so after.  The side effects also tend to build up as each round goes by (so by the last round they may be the worst).  So far I feel pretty tired still, but no where near as bad as it was in the hospital.  I also am having trouble with my blood counts I believe as I feel very similar to how I felt when this whole thing started and it was discovered that I basically had no blood in me.  I am trying to eat lots of steak to help my iron levels and keep my blood counts up.  Yesterday I had to get blood drawn and afterward I had a steak and it helped so much!  Interestingly there is also a lot of iron in Chocolate, so you can guess what two things I'll be eating a lot of in the coming weeks.

I have also been feeling overall a little crummy.  Its not horrible and it kind of comes and goes but I am definitely not 100%, I'd say Im more like 85%.

As I have been processing this whole cancer diagnosis I have realized a few things.  I don't think having cancer is going to be a huge deal for me as it seems like more of the same things I have been dealing with my whole life, (ivs, hospital stays, doc visits, meds etc)  I could see how this would be devastating and a huge change for someone who was previously healthy but for a person that has been a patient their whole life, it really isn't very different.  I also have realized that I had gotten used to not being sick.  I have for the most part been actually healthy for the past several months, which was amazing.  I would wake up most days and could expect to feel good, I had a few bumps in the road but nothing like my old life with my cf lungs.  Cancer has brought that back.  I now have no idea how I will feel from one day to the next, like with my cf lungs somedays were good and I had energy and felt like I could do things and others were bad.  I didn't realize how much I enjoy the usually having good days health status that my transplant gave me, until now when I am having to regress and go back to my old days (though my lungs are still doing fabulous and being able to breath and be sick is way better than dealing with hard breathing days)

So for now I will just take it one day at a time, doing what I can and letting go of what I can't.  This part gets very frustrating because for the most part when I am sitting or lying down I feel totally fine and my mind works well and can come up with all sorts of things I want to do but then when I go to do them I become very weak and dizzy and end up having to sit back down.

In other news my last bronch showed no rejection, which is two in a row, which cleared me from needing a bronch every 6 weeks.  If I didn't have this silly cancer I wouldn't have to go back to Duke until my annual visit in October.  Oh well, think of all the frequent flyer miles I'll have when this is done.  Yes that does mean I was able to come back to Colorado after I finished my first round of Chemo.  My doc is okay with me working with my local doctor here, so for now we will fly back and forth every 3 weeks or so.  If this starts being an issue then we will consider temporarily moving back to Durham, but psychologically it is soooooooooo nice to know that I can still come home and I'm not stuck out there.  Durham is alright but this is my home, this is where the people I know are and my life and it is nice to not have to completely put that on hold and move away.

In other other news, I got an insulin pump and continuous glucose monitor!  I start using it next week!  I have been looking into this for a few months now, but had yet to post about it, since the whole cancer thing kind of took over.  Anyway, I'm super excited about it and will post more later.  

Thats all for now folks, until next time!

Cancer?

Today is the day of my oncology appointment.  It's not really a day I have been dreading or anticipating, it just kind of is.  I was glad to finally be getting some answers but at the same time I already felt a little like we knew and all today would bring was conformation.  Well my appointment was this morning and we have learned that I do indeed have PTLD (post transplant lymphoproliferative disorder) a form of lymphoma.  It also is fairly aggressive and will need to be treated with full on chemo, which means I really will be needing a wig.  I have been kinda half joking with people for a few months now that I'm gonna need a wig in a few months because I'll be bald but now it looks like it will be a few weeks not months.  I've already lost about 2/3 of my hair since my transplant, which is apparently very common, now we will just speed things along!  I'm kinda looking forward to getting wigs actually, it seems fun to get to change not only how you style your hair, but even the cut and color any day.  I can have a short bob one day and long curls the next!

As far as treatment goes I will be admitted into the hospital for 5 day segments every 2 or 3 weeks.  While in they will pump me full of the lovely drugs.  I am hoping to be able to go back home in between treatments so hopefully that all works out.  I am currently waiting in admissions at the hospital and will get my first round of chemo tomorrow.  Wish me luck!!!

The Plane!

Well the move has happened.  I am currently sitting in a bed at Duke no longer looking at the mountains but at dense lush forest.  Yes folks Anna is back in the trees.  I was flown to Duke Tuesday afternoon.  An ambulance picked my mom and I up at the hospital and drove us to the airport (we flew out of centennial airport not DIA)  There we got on the med flight.  It was a tiny little plane, there was a paper inside that I think told about the plane (I never read it) but it was for a learjet so I am guessing that was what we were on.  It was not bad, I actually kind of preferred it to a regular flight.  It was a breeze getting to it and on the flight, no waiting around at the airport and no annoying security.  Plus since I was on a stretcher on the plane I got a great nap!  No wedging up against the window for me!  The flight took a little over 3 hours (same as a commercial flight).  They told us this jet can fly just as high and as fast as commercial planes and it sure did.  We got to Durham around 10.  We landed at the regular airport here and were again taken via ambulance to the hospital.

The whole crew at the airport

On the plane, the part you can't see had two seats one for my mom and the other for our stuff!

Since I have been here it has been more of the same, waiting, for the most part.  I had an endoscopy, where they look at your stomach, and biopsy done yesterday, a PET scan today and will hopefully get a bronch done tomorrow.  The tests aren't too bad so far, except that my appetite has returned again, only they keep not letting me eat!  Oh well it makes it that much better when I finally can.  The plan is, as long as things are still going well, to release me from the hospital tomorrow since I don't really need to be taking up hospital space waiting for results.  So now we just sit and wait around and we know how I do with that.  Bronch results have been like a person waiting to see if they have cancer to me, oh wait that is exactly what we are waiting for this time and it doesn't really feel the same as waiting for bronch results.  To tell you the truth, it is actually easier than waiting for bronch results.  With a bronch they have no idea if you have rejection or not, it can only be identified under the microscope, there isn't a "rejection look" or other signs like there is with cancer.  The docs here are fairly certain it is what I have and are really waiting to find out to what degree rather than if it is cancer or not.  To be honest I am kind of hoping it is cancer, not because I want that don't get me wrong, but cancer would be an answer with a treatment plan, so I could move on.  I would love it if the test shows some other definitive answer that is not cancer but is much simpler to treat, but the docs don't seem to have other ideas that are high up there in possibilities so I can't imagine what that might be.  If the results are negative and don't show something else then who knows the barrage of testing I will have to go through to discover the source of my pain and why I had so little blood. 

As far as possibly having cancer goes, like I have said, we are just waiting to find out and we will go from there.  The good news is the kind they suspect is very treatable and they have seen it a lot and had a lot of successful outcomes, I am sure I am in the right place.  They are guessing it is a type of lymphoma that appears after transplant, usually in the first year or about 10 years down the road.  Why those two times my doc has no idea.  Anyway it is called post transplant lymphoproliferative disorder.  Unfortunately there really isn't a pretty webmd version of what this disease is but apparently it is an over growth of b cells, since my t cells are being attacked by my anti-rejection meds.  The good news is it is usually fully treatable and doesn't tend to come back.  As far as what that treatment will be in my case, we will have to wait for the results and hopefully have some answers next week.  Until then we wait (and eat in the few hours I can each day!)

Thats all for now folks

White Water Rafting??....?

Hey bloggie friends! 
Okay so maybe I'm terrible at making blogollowers a thing, but changing nicknames is my thing (ask my poor dog, her nickname changes by the minute!)
Anyways I thought I would post a quick update.  I am currently in the hospital.  I am feeling a bit perkier this evening as this morning I was still pretty miserable, two weeks of feeling bad kinda does that to you, (especially when its pain).
I continued to feel sick into this week, which I was sort of expecting as we thought I was really dehydrated and it can take a while to rehydrate by mouth.  Unfortunately as the days when on I started to feel worse not better.  On wednesday we went to the doc and they did an x-ray believing my "drains" might be clogged.  It appeared that way on the x-ray so I was sent home with some human drainO and hoped to be better the next day.  I cleaned the pipes and still did not feel better.  On Friday I went to get labs drawn and noticed I was feeling even worse, plus my fogginess when standing was so bad I couldn't even see to get back to the car.  We called the doc and went to the ER. (at the right hospital, except its not but we'll get to that)  They drew labs again and found that my blood levels were SUPER low, my hemoglobin for you sciencie types was 4.  It should be between 12-15.  Its funny because I had just been thinking that morning or maybe the day before that I needed blood and boy was I right.  They gave me 3 units yesterday and BAM just like that my world came back into focus!  So I'm fixed right....nope

I still have the stomach pain and they are not sure why my blood count got so low which is concerning.  They have run a few tests and have discovered that I am likely having some sever complications of transplant, enter Duke.  It has been decided, this time not by me, that I need to be seen there, where they know my history and can treat me.  So come monday morning I'll be packed up and shipped off to Duke.  Its kind of a bummer because its so far away but it will be good to be where they can treat me best (and probably won't try to give me my prograf with my other meds!)

I'll post again in Durham, tell you about my trip! 

Rough waters

Warning: get your Kleenex ready, cuz it's about to go down, this post is real!!! Okay but in all seriousness this post may be harder to read for some.  Life has it's ups and downs no matter what the circumstances.  For those of you who want to continue to believe that I am happy all the time and always supper glad I have new lungs then click on by but for the rest of you here we go.....

So as it sounded above I'm kinda having a bad day.  I have been feeling nauseous a lot again lately and today/ last night my stomach has been hurting.  It was doing this last week too and frankly I'm kind of fed up with it.  For these past few days having new lungs hasn't really made a difference for me, I spend all my time on the couch with the heating pad not feeling good... But hey at least I can breath while I feel like puking! 

Anyway, it's just sort of annoying.  I think everyone hates it when they don't feel good and I've had a lot of bad days throughout my life.  I kinda wish I could get a get through life pain free card about now.  Its also frustrating because I can't eat and yet I want to but then as I go to eat something the nausea intensifies.  All I can get down are my pills, which ironically is probably the culprit of this crappy feeling.  I switched my tube feed mix today so hopefully that helps.  Anything can happen!  I know this will pass eventual and I will be back to living life and loving my lungs, but right now in this moment this whole transplant thing kinda sucks. :(  praying tomorrow is a better day!

Nighty night blogollowers!

A Picture's worth a thousand words

I don't have much news at the moment.  I'm doing well living my life.  Mexico was fantastic and I will post more about it later for today though I have a selection of pics from my Europe trip!  I finally uploaded them to my computer, Enjoy!

super cool looking duck, it had a candy corn beak!!!!

My stepdad, me, my sister, my brother at the D-day memorial in Normandy

American Cemetery at Normandy

Thanks to all the soldiers that fought!  This also reminded me of my donor since he/she is also known only to God (well and any family/friends but you get what I mean)

River ride in Bruges

cool drain I saw on the river ride (and managed to get a pic, prograf hands and all!!!)

Flowers in Keukenhof Garden in Holland

more flowers

super cute baby duck I saw and it got soooooo close to me!!!!!

My sister, me and my brother livin in a shoe!

and more pretty flowers (seriously I took over 100 pictures of just the flowers)

I got my big girl shoes on!

pretty self explanatory I hope!

another cute baby duck (we saw soooooo many of them in Keukenhof, I was dyeing a little bit inside from all the cuteness!)

Hope you enjoy the photos! Later Gators!
Anna