New year, New Major and that's where the new things stop!

Hey blogollowers!  

Just a quick reminder before we get started, my health excitement of the past two? Three? (I don't even know anymore) years has finally become...well less exciting and with that comes much less postings.  I will try to post updates periodically but as you may have already noticed they will most likely be few and far between.  As sad as you might be please remember this is a good thing!  It means I am out in the world much too busy wrangling the bull of life to blog as often as I once did when I was hardly breathing or when I spent most of my days on the couch.  I still nap all the time but if i'm not napping I'm up, out and about enjoying everything this fabulous world has to offer.  And with less posts it means you guys can get out there and live your lives as well, you don't need to sit at home watching your computer waiting to see if I'll be okay (as if you really did that :p) I am okay! No news is good news , great news even. So let's all get back out there to the up close and personal, face to face experience of the real world.

 If you want more frequent updates then come on down to Phoenix and we can go grab lunch! (Like for real though!  I love going out for lunch, but maybe dinner or coffee, im busy at lunch!)

Alright enough of my rant lets get to the real reason you are here, why an update of course!

Early Decemeber brought the end of my first semester back (I passed all my classes!), a return back to freezing cold land I call home and yet another check up at Duke.  This time was one of my bigger ones, not for my lungs, but for cancer.  December marked one year since I was officially declared cancer free and my one year PET scan (a type of scan very similar to a ct where they can look and see if there is any evidence of cancer in your body.  Luckily for me the scan was normal!  Yippie!!!!!  Hopefully I will never have to have another PET scan ever, not that they are particularly bad or even unpleasant but my doctor feels that a PET scan is no longer necessary as long as I am having no cancer symptoms.

On the lung side everything is looking pink and cheery.  (Actually as this trip did not involve a bronch no one actually looked to see if my lungs are still pink, for all we know they could be a florecent shade of orange by now, seems likely with all the radiation I am exposed to). In fact my lung function test was the highest it has been since transplant.  (Well probably since almost ever, as let's be honest my pre transplant numbers weren't anything you wanted to post on the fridge, unless you were going by golf scores!)

My weight is also up, almost to the highest it has ever been (ironically my highest weight was right before transplant). Even if I don't graduate (don't worry I will but just in case), there is one thing college is good for, weight gain!!! With dinner alone tonight I ate almost 900 calories and it wasn't like I ate a crazy amount, I got a single entree bowl and an appetizer from Panda Express. (Transfer student 20 anyone?). That is the one up side of my schools fast food only dining options.  There are extra calories everywhere! (Good for me, terrible for everyone else)

The new semester started today and I am now officially a psychology major.  The classes seem like they will be much better for my poor memory, not so good for my lazy side as there are tons of assignments but at least my brain won't be crying as it was in chemistry!  Plus my laziness is one habit I really need to kick to the curb.

So anyway things just keep on keepin on which is fine by me!

Until next time 

Go get some fresh air!  :D

.

My Fate

Today was the day.  I had a PET scan yesterday which revealed to the doctors the next chapter of the story brewing inside of me.  And today we were told the next bit of it.  Well folks it's beginning to look a lot like normal life.  My plan of no more hospital stays could become real because this kid has no signs of cancer!!!!  Yes you read that right, my cancer has indeed hit the road! It finally took the eviction notice seriously and booked it!  What's next in the story of Anna, hopefully some fluffy snuggles, a few late nights, warmer weather and lots of laughs.  I'll post more soon!  There are about to be a few big changes and this time for good things!

Round 4 review

:o I may have fallen off the blogwagen a bit, but it is only Monday so I still could do two posts this week and then I'd be on track.  I finished my 4th round of chemo last week.  It was definitely the hardest.  Not so much physically but mentally.  I was so hoping to be done after 3 and sitting in the hospital hooked up to IVs 24/7 with 4 days of that in front of me really set in the reality that I still have cancer.  I spent all of my first day and most of my second laying into bed depressed and just wanting to go home.  I eventually snapped my self out of it realizing that being miserable the whole time would only make it worse than it actually was.  Plus my mom got some pretty flowers and stickers and we decorated my room.  Nothing like some bright colors to help you feel a little more cheery!  Also I had a nice visit with one of my mom's friends from high school and she also brought flowers! Two of my favorite things visitors and pretty flowers!

So now I am home, and have been for almost a week.  I'm doing fairly alright though I've been having pain the past few days. Hopefully this will improve so I can enjoy my time in the free world until I am locked up again, the day after my birthday :(, how suckie is that?  I guess at least it's not my birthday!   Until next time (Wednesday?) 

Tootle loo!

Seeing the shadow

The time has come to learn my fate for the next 9 weeks and unfortunately they will include three more hospital stays. Yes this cancer groundhog saw it's shadow. The good news is that my cancer is responding to my chemo, just not as much as I had hoped.  Its a bit frustrating because people (especially my mother) sees this as good news.  And it is, especially for them, I'm getting better.  It is not good news in my eyes.  I know I should be happy that I am getting better because it could just as easily be the other way around, but I am mostly disappointed because this whole 5 days in the hospital every 2 weeks has gotten old.  I guess my challenge for the next 9 weeks is to remain positive even though things aren't going my way, they could always be worse.  At least I am improving  and I feel pretty good.  Plus I get to do my chemo in CO so I can actually be at home between treatments.  That's all for now folks!  

A letter to my Stomach

Dear Stomach, belly, Tummie or whatever else I may call you or you may prefer to be called,
  
It's time we had a talk.  It has come to my attention recently (Well I've kind of know this for a while actually) that you are not wanting to get with the program and behave along with the rest of my body.  Well stomach I'm here to tell you that it is time to shape up.  First off, you have been quite bothersome in the food department.  We like food, we can eat food now, I've done what you asked and gotten you the oxygen and space you require.  It is time for you to do you part and actually hold food.  Yes I get the meds are annoying and not pleasant to keep in but it is the price we pay for space and air, so tough it up and keep the food in.  Also no complaining about food, like I said we like food and can eat it now so stop getting angry when I fill you up, or give you something I happen to think is delicious (um rice comes to mind)  I don't care if you don't like it, you work for me, not the other way around you hear!  Secondly, the time has also come to step it up.  I understand this has a lot to do with you pal pancreas but really the two of you have got to figure it out.  I give you the pills you need to digest the food and do your job so seriously start doing it.  This whole eat a ton yet having my weight go in the opposite direction is really getting old.  Again step it up bub!  Here is how it is going to work, I give you the food (I'll even be nice and leave out the rice....for now!) and the enzymes, you get to work, share the task with the intestines (no you are not off the hook either kiddos!) and digest this stinkin food I keep putting in you and turn it into something useful, some fat and muscle comes to mind.   Lastly, stomach there is this whole issue of cancer.  Excuse me!!!!! What is that????  You have been nothing but nasty to me since my transplant and then WHAM, BAM out of no where you let cancer come in and make a home in you, UM.... so not cool.  If this is a cry for help I hear it loud and clear, so it's time to tell your new buddie to hit the road.  It can leave the easy way or the hard way, but your guy cancer is SOOOOOOO not sticking around so I think we can agree it'd be better for all of us in this body to just kick the cancer to the curb and move on.  I'll try to be nicer to you, give you your enzymes all the time, maybe even eat some healthy things now and then and not so much, ice cream, and candy, and popsicles, and straight up brown sugar, and.....well you know.  

I think we can be in agreement that we need to work things out and like I said, I'm the boss so this is the way its going to be, I'm open for suggestions but seeing as you can't talk I think that will be a little hard, so lets just step it up and do our job, OK.
Good talk!
Keep on keeping on and remember we are only as strong as our weakest link (yes right now that is you!)
Love you (especially when you work!)
Anna (and really the rest of the body, yes this is an intervention!)

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