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