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!  

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!

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!

Dex

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

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!)