When bad things happen

      It is life, bad things will happen.  As much as we want to believe they won't, they will it is inevitable. I think one of the hardest things to understand about suffering is that there is nothing we can do to prevent it.  No amount of preparing, no amount of security, no amount of money, not even faith can prevent disaster from striking.  Yes, some people seem to get more then others but this could very well turn around and hit someone else.  
     I am sure that it is the same in any situation but since I am most familiar with the health world that is what I will focus on.  The world is filled with ideas and tips on how to prevent our health from failing.  In a single day we are often faced with adds and emails and well meaning friends telling us about, such and such pill, or drink, or fruit, or work out, or herb, or treatment, you name it, that will prevent our health from getting worse, prevent cancer, cure us.  I am sure that there are treatments out there that have great benefit but there is nothing that can 100% of the time prevent the bad from happening, it just does. 
     As a person who has Cystic Fibrosis and is post transplant I have come across my fair share of hardship and seen it in countless friends.  The question I am often left with is why, why me, why them, why not me.  This summer, and really the past year, has been especially hard it seems for my close friends.  One of my first ever friends with Cystic Fibrosis died a few weeks ago.  He had gotten his transplant not that long ago and was doing well until suddenly his lungs were having trouble, he ended up in the hospital and didn't make it out.  In the late spring another one of my CF transplant friends who I met at Duke learned that her lungs have quit on her and she is faced with having to have a second transplant a little less than 3 years after her first one.  The biggest shock of that situation to me is the fact that she doesn't even have rejection.  I had always thought that rejection was what to worry about and that was what would cause a person to need another transplant, yet here she is stuck in the ICU because she is doing so poorly with a new transplant as her only hope, simple because the lungs are done.  When I was going through my cancer treatment I met a guy who was a CF post transplanter who also had PTLD (my specific type of cancer)  Although his treatment went well and he beat the cancer, he ended up getting sick and did not make it.  Another girl I met who also has PTLD was diagnosed a few weeks after me, yet she is still battling it 2 years later.  Last summer out of the blue another one of my CF transplant friends died suddenly after having trouble breathing and being admitted to the hospital.  This past fall a similar thing happened to another friend when he got sick.  With all of these horrible things happening it is so easy to want to find a reason why them and not me.  But the truth is there isn't a reason, or at least not one we can know here on this earth.  
     Yet we all still try to do it, we try to find the answer, oh well they didn't wash their hands enough, or they went out in public too much, that is why they got sick.  They forgot their pills one too many times, or didn't follow the doctors orders.  Some times these answers are so simple we deceive ourselves into believing they are true and we find ourselves, almost crazy with the routines we follow in an attempt to prevent the inevitable.  Our routines give us the false sense of security that as long as we do XY and Z the bad will avoid us.  If I take my pills diligently and always get my labs done on time, I won't get rejection.  If I use enough hand sanitizer I can literally keep the germs away and will never get sick.  In reality infection can still strike no matter how careful one is and rejection can happen despite doing everything right.
      In may the year I got Cancer, I remember being in Mexico and slightly freaking out about using sunscreen and that I wasn't using it as much as I should be.  I remember thinking to myself "Oh no I'm going to get cancer because I haven't put this stuff on enough", then I read an article about how sunscreen may be linked to some types of skin cancer, which as you can imagine caused a real dilemma as it seemed I couldn't win either way.  Well I didn't get skin cancer but a few weeks later I found myself lying on a bed in the ER as life saving blood was slowly dripping back into my body while the doctors tossed around things like, Cancer, lymphoma and Chemo.  I ended up with cancer, which no amount of sunscreen (or lack of sunscreen) could have prevented and ironically was made worse (and sort of caused) by the drugs I  religiously took to avoid getting rejection.  Needless to say I was doing the best I could to do everything right and the storm still found its way in.  
     I think the important thing to remember when things go bad is that it is normal and it isn't the persons fault, sure there are some things that really can be prevented, but for the most part bad things happen despite our best efforts to prevent them.  In fact bad things happening to us is a promise found in the bible,   in John 16:33 Jesus says "In this world you will have trouble.  But take heart! I have overcome the world."   The only thing we really can do is cling to each other and if we believe in God cling to him. 
     This post has been formulating in my mind a good part of the summer.  When I first began writing it I was doing well.  My weight was the highest it has ever been in my entire life (a good thing for me), my appetite was awesome and my latest CF clinic visit produced my highest PFTs to date.  The thoughts on bad things happening were simply observations of friends lives and memories from my past.  Well at the end of May that all changed for me as I began getting sick again.  At first I thought it was any old infection that would be treated with a round of antibiotics, some water and rest.  Well that didn't help.  Two rounds of antibiotics later and I was still coughing a ton, my appetite had dropped and I was horribly out of breath with even slight activity (climbing the stairs to my room for example).  I felt almost like my old pre-transplant self.  To make matters worse my PFTs (the test that checks how well my lungs are doing) had dropped a significant amount.  Luckily all this began happening right around the time of my next transplant clinic visit, so we added an unplanned bronch onto my visit lineup to check my lungs out and get a better idea of what was going on.  As I kind of suspected I have rejection.  I also have (hopefully had, as I am doing much better) a virus.  The bummer about this is that there is no treatment for most viruses, which explains why the antibiotics did not work.  The presence of the virus delays the treatment for my rejection because the treatment involves lowering my immune system more than it already is to stop the attack on the lungs, which is not a good idea when there is a raging battle taking place between my body and the virus.  I don't know about you but I'd rather not take out half my soldiers while the other side is already in the lead.  The delay in treatment means that I will likely be dealing with the effects of the rejection mainly the lower PFTs and the shortness of breath, for most of the summer as I won't begin treatment until close to the end of July.  It also means that my return bronch to check if the rejection is gone will be right before I start school, which kind of messed with my plans to move back to Phoenix.  The good news is that I am doing alright for now, my rejection is mild and likely treatable, I will still be able to go back to school (just a little later than I had planned), and I should be back to my post transplant normal in a few weeks!

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!