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!