Saturday, November 30, 2013
So this is what breathing feels like.
New lungs. My new lungs. My shiny, blinged out, healthy, perfect NEW lungs.
I have so much to be thankful for this season. I have a new life to be thankful for. And even though at the moment I am still in this hard journey, and its quite the fight, I am thankful that I have this fight to do now. I have this beautiful gift, somebody else gave me a chance to be a mom, wife, daughter, sister, etc. again. I have a donor family that no matter if I ever hear from them or not, they are a part of my family. I literally carry there loved one next to my heart everyday. They gave me this new fresh air and lease on what I know will be a fabulous life.
Sorry it has been so log since I blogged, I am sure you can imagine between the emotions, drugs, and all that I have to do to stay fit in here...the time just hasn't been there. (Although I feel a few would have liked it a little more if I would have updated when I was a super fruit-loopy.) I thought that my dry run was an awesome story, but this one is a true fairy tale. I have found my fairy tale. The days have been filled with tears, laughs, food, insulin, trying to cough, chest tubes, fat legs, blood cots, walks and yes even a nail polish change. I will make sure I write down my story in the next week (with Jeremys help...I missed a good 36 hours in there someplace.) but for now I wanted to say how lucky and loved I feel. It is very overwhelming. It was so awesome to call back to Michigan on Thanksgiving to hear everyone with such a happy heart, it got me so choked up that I couldn't talk anymore.
I do feel like a minor pin cushion and get excited the more and more that things come off and out of my body. If you have never had chest tubes, please say a little prayer of thanksgiving right now. They don't just hurt your chest, they hurt your body. But as of this afternoon I am chest tube free. Which also means in 48 hours I can take my first shower since that Sunday night...as I am sure you can assume, it is well over due. Just another memory to write down...sponge baths. Never again. I will never complain about wanting or needing or being able to be clean again. I for sure went into this with the thoughts of..if you are gonna look bad you arent gonna look bad. So Thanks to Aunt Gwynn I have beautiful gowns. And thanks to a wonderful friend through Team Cassie I had a very special one I wore on Thanksgiving in memory of another Cyster gone too soon. My nails are done, my slippers are cute, my hair is rocking a headband, and my cheeks have tons of color in them now. I am a brand new girl.
I gained 20lbs in water weight, but carry nothing above the thighs...you can imagine 20 lb legs and feet, right? One day I will for sure laugh at the little sausages on the ends of my feet. My arm is finally down from the blood clot swelling. I have no more heart monitor. 1 PICC. 0 tubes. The list could go on. This warrior is fighting strong and I am no question about it...through all this pain/hassle/blah, I would sign up and do it all over again. There are a few things that will forever stick out in my memory bank...1 being Laila telling the cashier at the store that I got new lungs. My baby is so excited for me (and herself!) that listening to her happiness was well worth the things I will miss while staying strong in the beginning of this battle.
I want to once again send my thanks for everything you all have done for me and my family. For the thoughts, kind words, donations, prayers, cards, whatever it was...we thank you and appreciate it. We thank our donor and family of course too. Without them, we wouldn't have had this awesome reason to celebrate. I am sure there emotions are still running just as high as our are, just in a totally different way.
Now it is time to go strengthen my new gift....my lungs! I remembering how to breathe!!
Sunday, November 17, 2013
This is what I think my new lungs will look like!!!!
As most of you know by now...I GOT MY CALL! I am currently sitting in Madison hooked up to a few machines just waiting for an operating room to open up. This seems to be a forever wait.
We got the call about 4:30 and I saw that special word and just looked at Jeremy and said something that I can't believe I said. HAHA...oops. But Kelly my coordinator was on the other end just waiting to give me the good news. And boy was it good news, I had a set of lungs and they weren't even high risk.
I said my goodbyes to Laila (again this is something you can NOT be ready for...still not sure I was/am ready for it.) But she was such an amazing girl full of smiles and running around the house saying I was getting new lungs and was going to be able to run with her. Sweet cheeks, I sure hope you are right.
I am calm. I am scared. I am excited. I cry. I am hungry and thirsty. I am anxious. I am impatient. I am tired. I am overwhelmed with love. I am overwhelmed with thinking if this is real life. I am obviously so many things all wrapped into one.
For those people who have asked YES my nails were polished, but I took them off once I got here so they could monitor me better. But my toes still aren't painted, so on the way out the door I said WAIT and went back to grab a bottle of polish so I could get them done this week. But maybe will have Jeremy bring me a happier color...I wasn't thinking how sad the color I brought was!
I didn't cry much on the way up here this time, and really I can say that for some reason I have stayed rather calm this whole time. Granted, yes, my emotions come in full force and I let it out in a cry and an apology to Jeremy. But I pray, I look at my Breathe Smile Breathe bracelet, and I remember why the heck I am here...to gain a new life.
We are long at another 3 hour wait and I have already slept for an hour, that should tell you either how calm I am or how exhausted I am. I got a small nap in today. But sadly I didn't eat much and was about to get ready to go out to eat when m y phone rang. So I am hungry and very thirsty and a big glass of cool apple juice sounds so wonderful. I know exactly what my first wish will be for when I wake up and can drink something.
Jeremy and I have talked about all the little miracles that have happened this past week that was just perfect for a set up for the day (minus your ouchie MOM!) and thank the Lord that things are working out so far. Lets just hope this time when I wake up from the meds there will be new shiny lungs in me and a thumbs up from Jeremy and my Dad. I have already started a nice list of all the good coming from this...you know because a new life with new lungs isn't enough HAHA. But here are some good things I came up with: I will get to drink 2% milk now, I will get my GTube out soon, I will get to go back to MI to see family more often, I will be feeling pretty good for Christmas, I will push Laila on the swing, I will get to walk the Great Strides this May. These are just a few guys!!
I am also thinking about as happy as my friends and family are, somebody elses family and friends are mourning right now. They lost a loved one. They are overwhelmed and have mixed emotions for a totally different reason then we do. Please keep them in your prayers too. And thank God that a family gave such a precious gift to me and others.
Thank you all for the TONS of support I have had already on FB and texts these past few hours. I do plan on writing back and I want to thank all you personally, but right now the emotions have me and I can't sort fast enough. Hope you all understand! Next time I write I will hopefully, God willingly, have these new set of perfect lungs that will easily be able to push air in and out with no real effort.
I am now going to relax and try to get another round of some sleep.
My biggest battle is about to begin.
Dear Lord, please wrap me in your arms.
Thursday, November 14, 2013
As a kid, I never remember my parents need to sit down and explain what it was that made me different. They never said or did things that made me dwell on the fact that I was different. They were some kick butt parents and even though I am not sure at the time they knew it or not...they were doing the perfect thing for me, and for them. They were being stronger than the CF.
My mom, Jan, my comforter:
She never let me see her cry about my CF (so far I have only seen in twice in my life and they both have happened this year!) but she has seen and heard me cry, well, too many times to count. She is the person I call when I just need to vent out how sick I am of being sick. About how frustrated I am with everything that is going on, how I hate my port, how eating makes me want to throw up, how my skin broke out in a new rash, how the antibiotics are making me feel cruddy. She lends me her ear and just lets me know that she can understand how sick I am of all of it. Now that I am a mother I can not imagine the things she has had to endure with my (here is that nasty word) terminal illness. Think for a moment that you have a baby who is frustrated, hurting, screaming and literally wasting away to nothing and trying to just figure out a way to make her happy. Imagine watching your little girl have surgery at 6 for the first of many. Imagine watching your teenage daughter not grow properly. Imagine watching your adult daughter wait for lungs, which is the only chance she has to live longer...and you can do nothing for her but pray. Imagine that as a mother.
She always made sure things were a little special and also told me, "if you have to deal with the bad might as well get some good too." So on days that I would go to the doctors she would take me over to Grandmas for lunch and to watch the Price is Right before I had to go to school. After my first GTube, I didn't want to leave the house because I was in pain. So she told me that if I walked with my back straight in the mall she would buy me some new nail polish (Yes, it did work because the obsession with my nails started at a young age...I got purple and gold from bath and body works!) She would play Super Nintendo with me while I did my vest, just so the time would fly by. She would encourage me to talk about it in college and do many reports about it to help with my grades (it worked for ANY class in college...) She just always looked at the good things to come out of it. She still does.
Because of her being a mother who was scared, it has really made me be OK and WANT TO tell other mothers and fathers about my story. To show them that there is hope. I wasn't suppose to make it past 12 let alone graduate, get married and have a baby. There is hope for little ones with CF and although, yes, it is TERMINAL...it doesn't mean that is a death sentence as soon as you hear the words Cystic Fibrosis. You can still live and have a purpose, a great purpose. Heck, like I said this CF life made a new healthy lfie, and I can't even begin to explain how important that was to me for sooooo many reasons.
My Dad, Greg (Ed...hehe), my rock:
Now I have N.E.V.E.R seen my dad cry about my CF. Even when I told him I was getting lungs, he was a rock...my rock. He calmly said, "you got this." He is the one that gets the call when I need some sense knocked in to me. I won't tell you some of the names he calls me...but they are along the lines of, "you ding dong." He helps me get it together again and turn the cry back into that laughter and strength that I have deep down hiding. KNOCK IT OFF, but in a way that for some reason my dad knows how to say to me that I can listen to. I like to think that I am much like him, and can follow that motto he gave our family, "you gotta do what you gotta do when you gotta do it." I can talk myself out of pain and I can do the things I hate because he has hit me with some kind of words that strikes a cord.
My Dad will do pretty much anything to make sure that I keep up my fight with everything I can muster. (Check the blog out about my phone call from Kris Draper...) Whether it is a good home cooked meal...ok MEALS...when I come home; to a card sent in the mail with just the right message. He is the person that when I need a fresh perspective I can sit up late and talk with him and he can give me a new way to look at things...or really just a good reminder of what I had already known. I have this spot in my heart for my dad that just is there and I fight hard because he wants me to.
He was the one who would take me the the majority of my doctors appointments. We had some good bonding time (maybe this is why I feel like we still bond so well!) He taught me things, and how to listen, how to stand up for myself (which I am still working on.) and that I am my own boss in the hospital/dr office. Here is a story for you: so 1 of my doctors was known for his 3 hour wait in the waiting room. Well, I was old enough and knew things like softball practice that I could miss due to this wait. So needless to say I was getting pretty upset and since my dad was sitting there I was, like most girls do, taking it out on him. "Dad, you need to get things done so we can get out of here." "I'm getting ticked off." "This is so ridiculous." All said with MUCH attitude. So with a little chuckle Dad calmly said to me, "Cass, you need to be assertive with some besides me." HUMPH...I crossed my arms and pouted thinking how I would tell the dr (but knowing I never had before.) So when the Dr. finally came in and asked how we were Dad just smiled and said, "Ask Cassie." So as the Dr. turned around I said "Pretty crappy." Dr, "OH?" Me, "Yeah thanks to this 3 hour wait I could miss softball practice and may not start tomorrows game (big deal in high school, you know!) Needless to say, that was the last time we ever waited more than 2 minutes for him. To this day he still will quote "you need to be assertive with someone besides me." And I was, and he is a proud Dad! I have learned many lessons!
This Blog doesn't even begin to do my parents any justice for everything they have done for me and continue to do for me. If you want to know more stories, I will gladly share them with you...just ask.
They never held me back. They always told me to do whatever my heart and head told me to do and my body would tell me when my limits were met. I am positive that even though they didn't know it at the time, as an adult that very thing has kept me sane. I live life. I love life. I love the people in my life. I treat CF like its important but not that it is what should control my every move. Death was never a word used, time limit was never used, nothing to that sort was ever used. It was always LIFE. My LIFE.
Thanks Mom and Dad for EVERYTHING...let me say that again...EVERYTHING...you guys have done for me, Jeremy and Laila. Thank you for taking care of Laila when Jeremy is working and I am down. For dropping everything for the dry run. For making my childhood a perfect one. For making me look towards life more often than death. Most importantly, for just being YOU! God knew that I needed YOU as parents so that I could be strong, and live, and not back down when giving up is an easy option. He gave me YOU because YOU were the best ones for ME!!! I love you both so much!!!
Sunday, November 10, 2013
Things I do to help me with my fight:
...I sleep curled into a ball and facing down with my tummy on my knees with about 4 pillows propping me up just so my chest can expand without so much weight on it.
...I try and bottle up the negative feelings I have for as long as I can in hopes that they will turn around (and for the most part they do!)
...I take TONS of medication and do my therapies.
...I sit by my phone. Sometimes I even just stare at it in hope that I can will it to ring :)
...I have my support system that I can go to when I need to.
...I am learning how sick I am and listening to my body a little more.
...I sit on oxygen even when I don't want to, so that my whole body can stop aching.
...I write my blog so that I can get things off my chest and down on "paper."
...I have a port.
...I smile even when I don't feel like it.
...I try and find the good in something, even when it seems like everything is bad.
...I write lists.
...I speak out and often about my CF and story so that hopefully awareness become huge.
...I pray a lot
...I am accepting more and more help with things I can not do so easily.
...I eat just those extra few bites when I am able to. And I drink the chocolate shakes Jeremy brings home.
...I drink whole milk instead of my beloved 2%.
...I sit back and breathe deep just so the crackles can move for a while.
....I spit up blood and then relax.
...I laugh (when I am stronger than that cry!)
...I try and move on.
...I will go the extra week on antibiotics so that I can have a few weeks of feeling ok.
...I try and do as much as I can in my limits.
...I talk myself out of pain.
...I let my Dad tell me I am silly and that I am stronger than this.
...I daydream (ahhh oxygen in my lungs and sand under my feet!)
...I snuggle Laila instead of carrying her.
...I trust in my Lord. I have faith.
...try and live a normal life.
...I concentrate on how my nails look. If I am gonna feel bad, I am not gonna look bad!
...I think of things I want to get off my 100 things list.
...I repeat the motto "You gotta do what you gotta do when you gotta do it!"
...I accept that I am a CFer.
...I look at things in my life that wouldn't have happened if I had not had CF. I wouldn't have met Jeremy, had Laila, or gone to school with Tay.
...I look forward to something thats coming up.
...put on that brave face and tell CF where it can go :)
These are just a few things I do to help me with my fight. It may seem small, but all those things really do help when you just want to give up. Because I DO NOT WANT TO GIVE UP. I want to win this war, and the biggest battle in the one I am about to face. This is me and this is what I do. I am a CFer, but there is no way that I am CF itself! I am Cassie and I am a fighter!!
Tuesday, November 5, 2013
The dreams are starting to become a bi-weekly thing. I guess this transplant process is taking a bigger toll on me than I thought. Last night I even had one of those dreams you swear is real. I just want my phone to ring and the word LUNGS!! to come up again.
I can tell you all that I really did think by now that I would have my new lungs and fighting hard to be ready for the upcoming holidays. I thought for sure I was going to go back to MI for Dave and Trishs wedding. I thought for sure I was going to go back for Christmas. Now I am just praying that Christmas will come this way this year, just like Thanksgiving is.
I just don't think people understand how this whole process plays tricks on your mind...especially when you had a set and they weren't perfect. I would have been healed and on the road to a wonderful recovery and been gearing up for everything PLUS being able to breathe, sleep, walk, smile bigger, etc. Mind games for sure equal hard days with many tears. Poor Jeremy gets the brunt of it. What would it like to be able to do things and breathe better than I am?
I still forget how sick I really am. I wonder if I need to give in more and just decide that this is the life I have right now, dying. Should I surrender a little more, sit in the hospital more, realize that, yes, indeed my lungs HURT when I breathe? My lung function is not good, do I say I am ready for oxygen 24/7? A wheelchair when I go out for long spurts? Not going out without someone besides Laila with me? MIND GAMES.
I want to be the healthy girl that is so stuck inside ready to burst out every minute of the day. I want all this to go away. Just go away. I want the stress of it all GONE, the worry GONE, the sickness GONE, the fear GONE, the tears GONE, the dying GONE. Gone, gone, GONE! Just gone. More MIND GAMES.
What if I am one of many that I have heard about lately that have died while waiting for a shiny new pair of beautiful, well working, air goes in and out effortlessly, lungs. How can I do that? How can Laila be OK during and after that? How can Jer? How can my mom and dad? My family? Heck, How can I be OK with it...I am so scared. And knowing if that happens, I will just put a brave face on and look death straight in the eyes. Like I said not that I am worried about death, because I know for me it will be a gift of heaven and my saviors healing arms. But to watch everyone watch my die, and to make sure Laila learns as much as she can from me during that time is terrifying. To say goodbye and watch the hurt, blah. No words for these MIND GAMES.
Praying for that call as hard and often as I can. Please Lord...please.