Lesson from a transplant

Hi Guys!
Well first off I had yet another doctors appointment this past week.  I met with both the transplant docs and my cancer doc.  Both reports were pretty good.  It's funny because I have had such a change in how I view doctors appointments.  I used to dread going to the doctor, pretty much every doctors appointment meant another hospital stay.  Now I almost like going.  Don't get me wrong it's not that I enjoy spending hours siting in waiting rooms and wasting two days at the airport just to have a doctor look at me for five minutes, but going to the doctor has become an enjoyable experience.  It is a chance for me to see how much I have improved and to show the doctors how good I'm doing!  This visit in particular was met with raving reviews from my cancer doc and his student.  Much to my grandmother's delight, who was with us this trip, he called me the poster child for PTLD!  I also got to see my beautiful X-ray.  I unfortunately did not get a copy of it but let me just tell you it was so big and black!  Those lungs have really expanded and cleared out!  I have a couple more appointments to go before my doc month is over (I see all my docs every 3 months and they all seem to occur at the same time), this time these are here so much less time consuming!  After that I'm a free woman until September!

Few!  With that update out of the way we can get on to bigger and better things.  The real reason for this bolg.  Transplant is a very intense process and it is impossible for a person to go through it without having their life completely change and not just in the obvious ways.  Yes I have a huge scare across my chest and a few more along my neck and stomach but those are a small change in comparison to how it has change me as a person.  In fact their are so many changes that I am going to spare you the novel post and break it up into smaller chunks!  Thats right I'm back on the blog wagon!  Lets buckle up (are there seatbelts in wagons?  Maybe these days!) hold on and dive into our journey of LESSONS FROM A TRANSPLANT:


Lesson 1: Patience
How to Wait

I am no expert in this field, in fact I still kind of suck at waiting for some things.  However I have had a LOT of experience waiting for big things to happen.  Besides the obvious, waiting on the list for lungs, I have spent time waiting to get listed, waiting to go home, waiting to go back to school, waiting to feel better, waiting, waiting and more waiting.  I have spent the good part of the past two years simply waiting.

What I have learned is that waiting just happens.  It's one of the hardest and easiest things to do.  Like time the wait will pass whether you pay attention to it or not and that is the key, to not pay attention to it.  As anyone who has spent time in a waiting room, on a plane or on a car ride knows, the time passes faster when you have something to do, ideally something interesting or fun.  As a person who has spent long periods waiting (were talking months here)  I know that life doesn't stop when you wait and the time waiting is still time.  You can sit around miserable waiting for the time to pass or find something to do.

Definitely the hardest wait for me was the seemingly endless 19 days I waited on the list.  Now I know that sounds super short, and it was, but keep in mind I had already been waiting for about a month after we moved just to get listed.  I was not the greatest at this wait especially at first.  When the call came in that I was on the list I half expected to get lungs that night.  I even shoveled in my food (and by shovel I mean maybe eat at a barely normal speed, I was pre- transplant people I couldn't eat fast remember this X-Ray!  My esophagus was way over on my right there was no eating fast for this girl!), thinking I wouldn't have time to finish before the call came.  Well I did, as hours turned into days I realized the call wasn't coming anytime soon.  As I waited I began my first intense steps down the path for the waiting lesson.  These steps showed me to find something else to do.  I spent my days at rehab, napping, seeing friends and of course at our pitty dinners!  Pretty soon this chunk of the path was over and the next chunk began.

This is a path we all travel all life long but for the next two years my path would change from a fairly flat easy road to a steep mountain pass, covered in a jungle making it impossible to see the end.
As I climbed along I learned some tips along the way.

Another way I have learned to be content with waiting it to change the moment from being one you want to pass to one you want to remember and even possibly enjoy.  As I am currently waiting for my hair to grow back this lesson has been very clear.  My hair is super short and curly and although this is not a style I would have ever chosen on my own I am learning to enjoy it.  There are perks to short hair, its easy to deal with and never gets in the way.  I do have my moments when I really just want to pull it up in a ponytail or braid it but I have to remember that one day it will be long again and this period of short hair will be gone.

I still have a long way to go on this path, as I still struggle to wait for school to start, to be done with school and start my "adult" life, a relationship, my hair, but I have also come a long way!   

Kaelyn and I waiting for our appointments last week

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!

A letter to the Show Biz Peeps

Dear creators of Red Band Society,
   I watched the show and I was kept entertained.  It has a fun group of characters and is interesting to watch.  I also agree with the message that you can still have fun and be happy despite having an illness.  However it is completely unrealistic and that is a huge problem.      
     Please make your show realistic or please take it off the air.  As a Cystic Fibrosis and Cancer patient, who has also been kept in a coma after my lung transplant, and who as a child stayed on the same floor as (and even sometimes shared a bathroom with) the eating disorder patients I beg you to make a change.  You are doing a huge disservice to the medical community especial that of Cystic Fibrosis(CF).
    Cystic fibrosis is a disease that does not get a lot of air time.  The CF community has been very excited about what this show could mean for us.  Unfortunately I do not think anyone thought it would be bad, but it is.  Before CF was brought into the main stream when I told people I had cf they would be curious and ask what it was.  I then would have an opportunity to educate them on  this horrible childhood disease.  However, since the show people have heard of CF and think they know what it is.  Well thanks to the poor portrayal people will now assume it's not really a big deal, I mean Dash seems fine and he's at his worst since he's in a hospital, right?   Wrong so very very wrong.
     Having CF is horrible, you can't breath, you can hardly eat and you certainly aren't running around a hospital stealing cars and throwing helicopter pad parties.  If you are one of the "lucky" cfers to not have bad symptoms, you aren't in a hospital.  A real cfer in the hospital is weak, very thin, tired, struggling to breath and has a productive cough pretty much all the time.  Most are also on oxygen and all are on iv medications around the clock.  We have what is called a PICC line inserted in our arms for medication or a port if our hospital stays are long enough.  Hospitalized cfers also do neublizer treatments, which was shown slightly, and vest treatments several times a day, 4 in my case,  these treatments can last an hour or more and are given by respiratory therapists.  Many of us also have feeding tubes and are fed a special formula by a pump at night to help us gain weight (like I said we are super skinny).  In most cases hospitals have strict infection control rules for CF patients we are often not aloud to leave our room and in the cases where patients can leave they definitely must be wearing a mask.  This goes for cancer patients as well.  Both of these diseases allow a person to catch illnesses easily, cancer from the chemo and CF from all the mucous in the lungs, and hospital are basically one giant petri dish.
     I understand what this world (hospital life) is like and I know it would not make very good tv.  That being said it is still possible to have an entertaining show while portraying some realistic aspects of the disease.  First of all the patients need to dress down a little bit, this is not high school, it's a hospital.  We don't do our hair or wear make-up and nice clothes.  More like hospital gowns, pajamas and sweats and a messy pony tail (if we have hair, I now where hats!).  Yes we hospital kids often decorate our rooms but not as excessively as the one on the show.  Coma kids are definitely in a hospital gown and hooked up to a few more monitors.  Also hospital patients are there for a reason, meaning they get treatment, ivs, oral medications, monitoring vitals etc.  And last but not least (and probably not really the last problem either)  Sick kids wear masks, kids who can get sick easily also wear masks.
   So please help all of the children who actually live in hospitals by portraying their life a little more accurately.  Without some changes kids will be jealous of those of us who "get" to go to the hospital.  Having a chronic illness is nothing to be jealous of.    
                     Thank you Very Much,
                         Anna the lemon
       Cystic Fibrosis, Lung Transplant, Diabetes and Lymphoma
P.S. Leo's eyebrows are pretty much the bushiest eyebrows I've ever seen.  If he is that bald on his head you bet his eyebrows are at least somewhat thinned.

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!  

Hair

Its funny,

As I lose my hair, I seem to become more and more obsessed with it.  I am constantly looking at other peoples' hair noticing it, sometimes wishing my hair could be like that.  I then realize it can (hello wigs!).  I have been doing a pretty good job at accepting my hair loss and I am enjoying my wigs a lot.  I do however miss the ability to put my hair up.  This is not an easy task with a wig as it kind of shows the hair line.  I can get a full lace wig which has the bonus of being able to be put up anyway I want, they tend to be a little pricy so I will hold off for now, but I'm sure eventually the mood will strike and I will have to have my signature bun back.

One interesting thing I have discovered with this hair loss is just how amazing it is when God says he knows the number of hairs on our heads.  You never realize just how many hairs there truly are until they all start falling out.  My hair comes out by the brushful and then by the handful and I still have tons left.    I had even lost at least 2/3 of my hair prior to this whole Cancer and Chemo thing due to my transplant meds and the stress of the surgery.  I keep brushing my hair out each day expecting it to be the end of it and yet it just keeps going.  I have what seems like 10 pieces left and yet I still don't think any human would be capable of actually counting each hair I have.  Not just time wise.  Hair is so complex.  I figured you just had all the hair you see growing out, you know the long pieces (well on a long haired person) well you don't.  All those little baby hairs you see around your hair line.... you have them everywhere!  I keep finding all these little hairs in my sink and I'm like who the heck does this belong to, cuz it's certainly not long enough to be mine, but I have my own bathroom so it definitely is my hair.  CRAZY right, who knew our heads were covered in all these ity bitty baby hairs, there are probably thousands or even millions of those and no one ever sees them.  Add that to all the hair we do see and we truly have an amazing God just to be able to know all the hairs down to the very last one on each of our very unique heads!

Just an interesting thought to leave you with!  Enjoy the pondering and feel free to comment your thoughts on this!

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!)

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!

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