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!
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
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!!!!
Wednesday, August 6, 2014
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!
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!)
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
Crazy
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
Ttyl,
Anna
Friday, July 11, 2014
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!
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
Cancer?
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!!!
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