Tuesday, December 30, 2014

New Year at last!

As the new year approaches I am planning on making a few big changes!  I'm finally getting back to school!  Pepper and I will be ditching this chilly snow filled land for a more cactusy landscape!  

Things with her are going great.  She has begun to alert me!  Although she doesn't know the nudge signal attached to the alert yet,she gets my attention and promptly picks the correct hand.  So far she has done 3 alerts and all were correct!  Last night she even warned of an impending low early enough that I never had symptoms!  It's a good thing she's alerting too because, ironically, she chewed up the cord to my monitor(dex) and I haven't gotten a replacement yet.  I guess that was her way of telling me she is up for the task!  

I am very excited about this next year!  Let's hope it's a little less medicalie, and much more friendie and fun!

Until next time
Ttfn blogollowers!

Tuesday, December 16, 2014


As promised here is the story about what I have been up to lately!

This all started last January when I came across a site that advertised diabetic alert dogs.  I am thinking I was doing some sort of search on service dogs but I can't really remember.  Anyway, I knew that this would be a perfect thing for me.  I really love dogs and have been wanting on for, well... forever, and my diabetes has gotten very dangerous since my transplant.  Dangerous because as I have mentioned in previous posts (see here)  I don't notice when I get low until I am super low, which could lead to me passing out.  If no one is around when this happens I could die because I don't get sugar to my body soon enough.  At the time I did't know about continuous glucose monitors.  The dog seemed like the best solution.  Unfortunately these dogs can run many many thousands of dollars, in fact a low priced dog is around 20,000.  YIKES!!!!  After learning the cost I moved on realizing that this life saving pal was beyond my reach.

Enter October:
I began searching again for a Diabetic Alert Dog (DAD).  This time I came across some information about how you can train your own, which greatly reduces the cost!!!!  What this meant for me: I could actually afford one!  Although I had gotten my CGM (check my blood sugar and warns me when it is going low)  I was finding I still had lows that went unnoticed for a long time.  My alarm might go off, but I would either sleep through it or not hear it.  It was then that I realized that a dog would help me live independently which is what I have been wanting to do.  I began looking for a dog to begin training and came across my little Pepper!

She was the last dog left from a litter of Aussiedoodles (australian shepherd poodle mix) and best of all she was being tested for her service dog (specifically a DAD) potential.  How perfect!  One thing lead to another.  The papers were signed and Pepper became mine!

I picked her up the day after learning my fate.  She is awesome!  Very well behaved and learns quickly.  She is super sweet and loves to snuggle.  I am enjoying the training and am so glad that a service dog was a possibility for me!

What is a DAD?
A diabetic alert dog is a dog that can smell the changes in blood sugar a person goes through.  They are trained to give an alert to the handler when their (the person's) blood sugar either rises too high or drops too low.  These dogs can also be trained to do additional tasks ranging from getting juice for a low to alerting others of the danger.  What is awesome about these dogs is that they often pick up on the blood sugar change 15 minutes or more before it is picked up on the monitor.  This allows the person to deal with their blood sugar and fix it before it becomes a problem.  In my case Pepper will be able to alert me to a low, much earlier than I would feel it, preventing my sugar level from getting low enough to be dangerous!

Wednesday, December 3, 2014

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!

Monday, November 24, 2014

The Sickness Paradox

A very interesting thing happens when you are sick, or really in a hard situation.  If you choose to allow people into your situation you begin to experience the immense care individuals are able to have for our fellow human beings.  I have noticed this in my own life and in my cousins.  Recently my cousin was diagnosed with leukemia.  Both of us have been amazed by the amount of people who reach out to us when disaster strikes.  The paradox is that in the worst time of our lives we get to experience some of the best things.  

We tend to keep to ourselves most of the time.  Sure we seem friendly but our enthusiastic "hi how are you"s are really just formalities.  The honest truth is most of the time we don't actually want to know how you are.  We are usually too busy with our own lives to take the time to care.  We are constantly dropping the "let's hang out sometimes", but these are thrown about with little care as to whether we really have the intentions of planning a time to actually get together.  This is the sad truth of our society.  We have become so busy and wrapped up in our own lives we have lost a sense of true community.  

When you a sick however, it all changes.  Suddenly people are calling actually wanting to know how you are.  People come out of the wood work taking the time to let us know they are thinking and/or praying for us.  Friends show up out of the blue to spend time with us or help us out.  Our neighbors or coworkers who we rarely communicate with are suddenly offering to make us food or help us take care of daily life tasks.  

It is a truly wonderful experience to feel so loved and connected to so many.  It is a shame however, that such an amazing way to live only tends to happen when disaster strikes.  It is time we stop having to face hard times to simply feel the love from fellow humans.  We were made to love each other.  Let's put an end to the isolation our culture has created.  

Next time you are about to ask a person how they are, ask yourself if you really want to know, if you do then proceed with the questions.  You may get a simple fine, try to follow up if this is the case. (What's happening in your life?, Fine good or fine just okay?,  How come?, Etc.). If you answer this question be honest share how you really are.  The next time you made too much food for dinner rather than simply freezing it see if a neighbor want some or better yet invite them over.  Ditch the "we need to hang out" saying and instead be more specific, " want to get coffee on Tuesday?"  
It will be tough at first but I believe that slowly we can change our lives to be more connected with others.  Who knows it could even end up changing our world!  (Yes I know that's kind of Cheesie but if we each focus on doing our part it may just happen!) Plus sharing life with others, even if it is just a few people, is an amazing feeling! You might just get addicted!

Saturday, October 18, 2014

A Message from Bubble Girl

Dear Fellow Humans!
  The weather is starting to turn cold, the trees are bursting with color and pumpkin everything fills shop shelves and bakery counters.  It is fall once again and with this lovely time of year comes the not so lovely flu.  Unfortunately for my fellow immunocompromised peeps and me, this time of year often becomes the time we retreat back into our safe cocoons of sick-free-ness.  This year lets change that!

We can all do our part to not only help to keep immunocompromised people safe but to also help reduce the spread of flu to everyone.  (not to mention all the stuff about Ebola in the news)  It is time to make a few simple changes to our habits to help make everyone healthier.

All it takes are three easy steps!
1.  Get your flu shot. 
    Yes I know there is all sorts of controversy about vaccines but the thing is we are healthier now    then before them and many disease have been almost eliminated because of vaccines.  So go get your flu shot to help protect yourself and people you may come in contact with that can't get a flu shot.  (people like me with such a low immune system)  Some people claim (my old self included) that the flu shot gives them the flu.  This is not actually true, what happens is if your body is fighting something when you get the shot, that bacteria that is alive is able to grow slightly out of control while your body fights off the dead flu virus.  To prevent this get your shot when you are totally healthy and not fighting anything off.

2. Wash you hands!
   This is the number one way to prevent the spread of disease.  Every time you go to the bathroom be sure to wash those hands!  (It seems like I shouldn't need to say this but go check out a public restroom its amazing how many people don't wash their hands!)  Also wash those digits anytime you cough or sneeze or blow your nose.  And please throw that used tissue away, it is nothing but a germ fest and a box of tissues is much cheeper than a hospital stay, there is no need to save it.  

3. Stay home when you are sick!
   This is probably the hardest to follow.  In our society you are expected to go go go, well lets work together and change this.  Not only will staying home and resting help you get better faster it will also help prevent you from giving your sick to someone else.  If you are a boss, don't make it so hard for employees to take a sick day.  A teacher?  Help your students to catch up when they get back rather than making them feel like they can't miss a day.  We really need some serious overhaul in this department!  If you must go out when you are sick be sure to follow rule number 2 (wash your hands a lot) and wear a mask if you are coughing or sneezing.  

Lets all do our part this winter to make this winter the best one yet!  Until things start to change I'll be in my bubble, avoiding crowds and groups of notoriously sick people (kids, college students etc.)

Thursday, September 18, 2014

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.

Monday, September 15, 2014

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!

Thursday, September 4, 2014

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!  

Wednesday, August 20, 2014

Not Going Anywhere

Well today marks one year since mom and I left for Durham and as the title suggests I'm not going anywhere.  This fall is looking like a whole lot of Colorado for me.  Now don't get me wrong I love Colorado, but I do wish it was looking a little more Phoenixie for me.  Today has been especially hard knowing that if it wasn't for the stinky cancer I would be packing my things preparing to leave on yet another adventure, though this time with a little more fun and much less pain.  Instead I am home... unpacking.  At least I am home, that is one thing I can be thankful for!  I could be stuck in Durham still, or moving there again to treat this cancer.  It is times like this when it is sooooo important to remind myself of what I do have and to be thankful for it and enjoy it while it is there.  So for now I will sit in my house, with my family near by and be thankful that I at least have that much!

Wednesday, August 13, 2014

Pumpie, and Dex

It has finally happened!!!
I have my insulin pump and my continuous glucose monitor (CGM) hooked up and working!  I love them.  The CGM is great since I don't notice when my blood sugar is low until it is REALLY low (we're talking in the 30s or lower here :O )  For those lucky readers who know nothing about diabetes, your blood sugar is supposed to be from about 70 or 80 to about 140.  You may have experienced what I like to call hungry feeling.  If you experience this you often get hot, unable to think hard or focus, shaky, and of course super hungry, usually for sugary foods.  This feeling means your body is experiencing a low blood sugar.  Your body can usually correct this and most healthy people would not pass out or die from this, however a person with diabetes takes insulin to bring blood sugar down, which when too much is taken can result in an extreme low causing the person to pass out and even die.  In fact we (diabetics) have to carry a special syringe with us incase we pass out from a low, kind of like an EPI pen only ours gives our body the quick burst of energy it needs.  I have never passed out (knock on wood!) though I have been as low as 27 :O (yikes!)   Like I mentioned above I don't notice my lows until I am really low, this feels awful and isn't good either.  Enter Dex, my continuous glucose meter.  This handy little invention goes under my skin and sends a blood sugar reading to a hand held device every 5 minutes.  It shows me trends which are helpful in adjusting my insulin doses as well as to know when I must eat.  Twice my CGM has alerted me of an impending low before the symptoms hit, allowing me to eat some quick carbs and fix the problem before I started to feel like crap!


My next new "toy" is pumpie, my lovely insulin pump.  The pump has a little tube that goes into me and stays there, hooked up to a little device that has insulin in it and can give me insulin throughout the day without any pokes!  I also have the ability to enter my carbs that I eat to get insulin for my food.  Before my pump I used to have to give myself a shot every time I ate, this tended to drive me away from food.  For instance with dinner say we are having pasta, I would have to decide at the beginning how much I would eat and then give myself the insulin needed.  inevitably I would wind up still hungry and want another serving or "surprise" there is super yummie chocolate cake for desert.  When this would happen I would either have to deny myself the delicious food (not a great idea when you are trying to gain weight) or give myself yet another shot. (not a whole lot of fun)   With the pump all of that is gone, I can now eat and eat and eat without a single shot, just a few pushes of buttons on pumpie and boom more insulin is sent right into me!

Chocolate cake you say?  Bring it on!!!!

My lovely pump

How my pump hooks into me

Wednesday, August 6, 2014


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!

Wednesday, July 30, 2014

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!)

Wednesday, July 23, 2014


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

Friday, July 11, 2014


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!

Wednesday, July 2, 2014


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!!!

Thursday, June 26, 2014

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

Saturday, June 21, 2014

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! 

Tuesday, June 10, 2014

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!

Saturday, June 7, 2014

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!

Wednesday, May 14, 2014

Heatin up!

I am in Mexico!!!!!
I have been here since Sunday, which turned out to be perfect timing as it began snowing at home right as we left.  So far I am having an awesome time here.  It is amazing how much being able to breathe can change an experience.  Today we went to a place where the waves are really big. (there is a barrier island off shore from our hotel preventing the huge waves there). I was able to stay out in the waves with everyone for 2 entire hours!  We body surfed, dove through and floated enjoying our working lungs (though I may have appreciated my lungs a bit more then the others!)  I have also been able to run along the dock, walk a ways along the beach and even participate in volleyball (I'm not so good at this last one, but maybe by the end of the week).  
   There are of course a few challenges, (what's life without challenges anyway?) but overall it's way better being here with good lungs than without!

Wednesday, May 7, 2014

all that...in one meal?

'Ello lovelies!
I have started a new tube feeding regimen and decided to put it out there in cyberland!  For those who do not know, I have what is called a gastrojejunostomy tube or GJ-tube.  This is a tube that is placed through a whole in my skin on my belly into my stomach.  It then has a part that goes down into the top part of my small intestines.  This tube replaces my g-tube (just the stomach part) that I had before my transplant.  I have had a g-tube for 9 years.  They put GJs into people after transplant because it helps cut back on acid reflux (can cause rejection).  Anyway, I haven't really talked much about it, mostly because it isn't really a big deal to me.  I have been doing it so long its like taking enzymes...oh wait thats weird too, um.... its like brushing your teeth.  After transplant it is common for people who previously needed a g-tube (I may use g synonymously with gj) to maintain/gain weight, to no longer need it.  Unfortunately so far that is not the case for me.  I am almost 7 months out and still using my tube.  People typically put a formula into the tube through a pump overnight, its similar to ensure or those other breakfast drink things.  For the past 9 years I have been one of those people, but not anymore!

I have known for quiet sometime that the formula really doesn't agree with me, but I needed the calories and it helped so I stuck with it.  Since my transplant I have been going periods without doing tube feeds hopping to be able to maintain my weight.  So far I have been able to maintain without tube feeds but I am needing to gain some and am struggling. (no I'm not lucky its the same as struggling to lose weight, its hard and you just want to be able to eat what you want without having to care or think about it)  Well anyway, after my appointment last week we decided I should try and gain 10-15 more pounds, enter the tube feeds.

I did my first tube feed in about a month Saturday night.  It went okay, I woke up early in the morning with a horrible pain inside and felt kinda crappy the whole next day.  I had researched in the past healthier options for tube feeds (the cans are full of chemicals and fake stuff) but hadn't really found anything that great, plus nothing could quiet compare to the amount of calories I was getting with the cans.  Well in November I had switched to a lower calorie product because I was not tolerating the old one I did, that mixed with my lower calorie need and ability to eat a fair amount by mouth made this the perfect time to be able to sacrifice some calories in the name of healthy food and feeling better.  

I began researching blenderized diets and set out to make my own.

My first attempt was a bit of a failure.  Despite choosing soft foods to begin with, our blender was just not up to the task of pulverizing the food in order to get it through the tube.  The first batch I made had: avocado, tuna, coconut milk, olive oil, garbanzo beans and kale, cabbage, carrot juice.  As I began priming my tubing the pump clogged.  I then strained the mixture and tried again.  This time it was able to run but would get clogged every hour or so and start beeping.  I would then have to pull the tubing out of the pump work it with my fingers to try to break up the clog and then start it again, leading to a very poor night of sleep.

Many of the blogs and websites I had found about a blenderized diet talked about getting a high end blender. (vitamix or blendtec type)  Luckily my aunts have both of them and we were able to borrow the blenders to try them out!  I had some of my first batch left so I put it though the blender to see if it would get it better.  It did.  I poured the newly blended food through the strainer and it went right through, not one clump at all!  It also ran through my pump just fine, no waking up for me all night!

For my second batch I made what I have labeled The Green Blend (it sounds so fancy that way)
avacado, garbanzo beans, coconut milk, olive oil, 2 hard boiled eggs, kale, red cabbage and carrots (the whole vegetable this time not just the juice!) plus a little water to thin it up.  I made this batch very unscientifically, throwing some of this and a bunch of that into it, pretty much just using up what we had.  It ended up filling 3 of my feeding bags and once calculated out averaged about 1000 cals per bag.  

My third and final batch so far is called The Red Blend
After seeing the fun color of the green blend I realized that I could probably choose the color of each batch, which would make it a little more fun, both to make and to do (no more blah yellow/white formula for me!)  I decided to try a pink one.  For this I used 1 beet (greens and all), 1/4 red cabbage, 1 C coconut milk, 1 C garbanzo beans, 1 C peanuts and 2 eggs (hardboiled), also a little water to thin it.  I got much more precise with this batch and made one bags worth at a time.  It turned out great, the color is awesome and its a whopping 1,900 cals!

I am still very much in the learning phase of the whole blenderized diet for tube feeding but I am liking it and will definitely get better as time goes on.  The first step now is to buy my own good blender (this is a must if you are going to do this yourself as I found out the hard way!)  I am really enjoying making the blended food though.  I get to go to the store and pick out whatever I want to go in it, all those pretty looking veggies that I want but I don't actually like get to go right into my cart now!  Plus you can get all kinds of good things without having to think about if they actually would taste good together (and with the j tube there is no after burp so I never have to taste it!) I mean would you really want to eat coconut milk, kale, eggs and peanuts all together?  It is also kind of fun making them.  I am trying to get more into cooking and this is a great way to learn and practice my skills (especially chopping) without too much pressure since no one is actually going to taste it.  If I way overcook my eggs, oh well as long as they will blend we are good! 

I wanted to share this not only to update people as to what I am up to but also to share with others who are tired of formula.  You can make the switch!  I have a GJ tube and must have my blended food through a pump (it goes into the J part) and it is working just fine for me!  I take my enzymes throughout the feed (basically anytime I wake up in the night, I pop a few in).  My pump is the enteralite infinity pump and it is able to handle the food.  Like I mentioned it just needs to be well blended (no tiny clumps) and thinned out a little bit, it can handle the thicker smooth blend but it struggles a bit and goes a little slower.

Welp thats all for now folks!

My food ready for freezing!

Friday, May 2, 2014

There's a fungus among us!

Well the results are finally in and I am rejection clear for the time being!  I did however grow a fungus in my lungs.  Luckily the treatment for this is an oral antifungle medication.  After many calls to the pharmacy I was finally able to get ahold of it and get it started so my trip can go as planned.  I need to get blood tests a week after starting this medicine meaning I needed to start it today in order to get the test done before my trip. With this doctors appointment safely behind me I can get ready for my trip!!!! 
Peace out for now homies! 

Thursday, May 1, 2014


I have returned to Durham for yet another bronch and an appointment.  I told my dad last night that it's crazy to me to think that ONLY 6 people have ever bronched me.  He replied that it's crazy I used the word only considering most people haven't even had one person bronch them.  I guess I get a bunch of those.  Anyway I had my bronch yesterday and am currently waiting for the results.  I feel similar, I imagine, to how a person waiting to see if they have cancer or not might feel.  Usually I'm not that nervous about the results but this time my plans are contingent on the results.  I am hopefully going to Mexico with my grandparents and friend from school (who I haven't seen since November) but if I have rejection it might mean I can't go.  I have been reluctantly checking my e-mail all day.  I want to know the results but I also would rather not if there is rejection, it's better living in the world with the possibility of Mexico than the world that it won't happen.  I guess I never know it could happen even with rejection I'll just have to wait and see.  I am also a little nervous about the treatment for rejection.  If I have it this time they are going to treat me with RATG.  This is an IV treatments made from rabbits and people sometimes have bad reactions to it.  I have two friends who recently had it and had a bad reaction.  The thing they have in common, they both have had pet rabbits.  I have too, in fact I have had 7 pet rabbits throughout my life 😁.  Again we will just have to wait and see what happens.

The rest of my check up went well.  The doctor even told me I have beautiful lungs, to which I replied "thank you"! I have never had someone tell me that before and had no idea how to reply to that comment! 😛

In other news: the rest of our Europe trip went well.  We got home on Sunday.  Our last stop was Norway and it was one of my favorites.  We stayed with Sebastian (our exchange student from last year).  His family took us aroud and we got to see the town of Bergen.  It was really nice and pretty.  The area really reminded me of the mountains in Colorado if Colorado flooded!  We took a tram ride (a Pinterest success!) up the mountain and we could look out all over the town.  It was beautiful (just like my lungs 😜, er Freddie Joe's(what I call my donor) lungs). We also got to ride on Sebastian's Grandpa's boat which was really fun too!  I love the water and going on boat rides!  Overall despite the challenges my transplant brought it was an enjoyable trip.  I am glad I was able to go, which was definitely due to my transplant. There is no way I would have survived all that walking with my old lungs!
Talk to you later peeps! (Hopefully from the beaches of Mexico!)

 A view of Bergen from the top of the mountain.

My Norwegian troll boyfriend!

A view from the boat!

Sunday, April 20, 2014

Travel on

See I've picked up a little French! ...okay maybe not.  It has been over a week since we left home and we have exactly a week left of our trip.  So far we have been to Paris, Normandy beach, Bruges, Haarlem and tonight we are in Calais.  We also made an afternoon trip to Amsterdam.  So far my favorite place would be Bruges.  I like the smallness of the town.  All the streets are tiny!  I also like all the canals and old buildings.  It felt like I was back in time!  It also helped that pretty much everyone spoke English. 

My other favorite place we have been is Normandy Beach.  This is where D-Day took place.  We went to an area where there were still remains of bunkers and tunnels.  The land there was covered in craters from land mines and bombs.  It was really neat to see the remnants of the battle fought there.  I enjoyed getting to explore the bunkers and climb along the craters, a reminder to me how different my life is with these awesome used lungs!  (Pre-tx I wouldn't have had the energy or air to explore).

We also went to Keukenhof gardens.  This is a huge bulb garden in the Netherlands.  It was so beautiful.  The colors were so vibrant! There seemed to be an endless mix of flower combinations each just as spectacular as the next.  I took soooooooo many pictures, but you really have to see it in person to get the true beauty of it.  It's an early night for us tonight as we leave early tomorrow to catch the ferry over to London!
Nighty night

A real French Macaron! (not as tasty as mine but looks correct)

Enjoying pommes frites in Bruges

One of a million awesome buildings in Bruges

Baby ducks in the canal!

Rest are from Keukenhof Gardens