My Moments to Breathe

Saturday, February 6, 2016

Shortribs, Wine, and the CFF



Lastnight I got to do one of my favorite things, help raise money for the Cystic Fibrosis Foundation. And the food and drinks were out of this world!

It was the Milwaukee Wineopener and I was asked to be the speaker. There really isn't too many things that humble me more. I open up about my story of CF patient turned transplant survivor. To this day all the emotions run high when I talk about it, and at events were everyone there is her to support people like you...wow, tears and smiles both flow pretty steadily. 

The feelings of pre-transplant come flooding back. The getting ready to die feeling that my brain pushes back are now brought up to the foreground and I need to take to minute to remember that, yes, I am breathing. Yes, that is cool air coming in and out of my lungs. Yes, dying has been put on hold. Deep breathing, expand those beauties and show everyone what donations can do. 

I said it lastnight, and I will say it again and again. Without people like those who were there lastnight, and people like you who have supported, donated, and helped out...I wouldn't be here as long as I have. I wouldn't have been a sister, daughter, wive, and mom as long as I have. Isn't that crazy!? Thank you all and give yourself a hug from me (and my family.)

Bid for a cure set a new record for the event, and that money and donations from other events help make a cure something that could happen. The cure for CF may be too late for this girl, but if it means that there are little girls and boys out there right not don't have to worry about what CF will rob them off, of hurting them, then I will forever speak (or volunteer) and the Foundation. I will forever do my part and make CF stand for Cure Found. 

I meet incredible people with some incredible stories at events. I get to catch up with so many I have met in the past. I hear from parents how well their own children are doing. All from putting skis out and going in the snow, to moving on to the next big chapter in ones lives....and the best part if these things are huge for CFers, for their families. I talk to parents about how they feel about their child, about the accomplishments. I really have no words for the feelings I get when I have conversations with them. No words. I not only understand a little more the thoughts  and feelings of my parents when I was young, but can understand the scared hope in their eyes. 

Keep on fighting CF warrior and caregivers, keep on fighting!!!

Wednesday, January 27, 2016

I did another Random 25
















25 things you may not know about me. Its been awhile and sometimes stuff like this is just interesting. 

1. I eat a bowl of cereal every night before I go to sleep.

2. I sing and dance like a crazy person whenever I get the chance.

3. ...even as I type this I am singing in my head.

4. If we are driving anywhere for more than 30 minutes I am fast asleep.

5. I was on homecoming court my Junior year of highschool.

6. Jeremy and I worked in the same place at the same time, but when he went back to school I stole his job so I could get a raise. And honestly, I was better at it than him.

7. When I was drugged up after transplant, I was mad at my computer so I popped the "S" and "W" off the keyboard. I realize that didn't fix my problem.

8. I named my cell phone after the PA who pulled most chest tubes out.

9. I am painfully shy.

10. I wear a necklace with my transplant date on it.

11. I had a few miscarriages before we had Laila. And named each child.

12. I use to play the piano, and when i say "play" I mean I can do alto/soprano line once in awhile. But have a thing for the cello...swoon.

13. One of my favorite things to do with Laila is sit on the couch and read to her.

14. I look forward to going to bed every night.

15. I love to cook. And eat. And cook to eat.

16. I spell for crud (I am sure you have gathered that!)

17. School supplies items are a weakness of mine, especially pens, pencils, and notebooks. I am sure its so I can make all those lists.

18. I have always wanted to smell like peppermint. My soap is peppermint. My lip gloss. I want more peppermint.

19. "Son of a Preacher Man" was always ad-libbed as "DAUGHTER of a Preacher Man" while sung by the Zell girls.

20. I hate unloading the dishwasher. Like loathe it. Its the worst household chore.

21. I can speak the Lords Prayer in German, but thats about if after 1 1/2 years of German (don't ask about that other half I didn't do!!)

22. I have broken my medical ID 2 times...and its currently broken and I need to fix it so I can wear it.

23. I was friends with Jeremys best friend before he was. Well, I knew him..."friends" is a loose term. (FREY!)

24. My eyes are all sorts of messed up. One is Atonic and the other is Neutonic. Because I can't have anything quite normal HA! (Although I just tired to google the second and found nothing...I'm super intrigued now!)

25. Jeremy bought our wedding rings from a pirate...at a bar...in WI. (And I pass this place whenever I go to work)

Saturday, January 16, 2016

The Rundown





























Can we avoid the fact that I haven't written in 3 months? NO?...well, just consider it all as "no news is good news." I do have the guilt of not keeping up on it, not for the sake of thinking everyone is so interested in my life. But the fact that this is all suppose to be for something Laila can go back on in years to come and read about the journey we went through. (HI, LAILA!)

Ok lets go back to in a nutshell: 



We all dressed up to spoil Laila (surprise, surprise!) for Halloween. But to be honest I think we all had more fun than she did! I mean, I got to dress as the MAD HATTER!! 

I celebrated two years since my transplant! Two whole years and things are going so well. So well! I feel so blessed with my story, a Cinderella story...true fairy-tale. 

This year I wanted to celebrate as a family, the 3 of us. And because I love watching, more than most things, my child smile ad get excited we went and watched the Peanuts movie in 3D (and super fun because we had the entire theater to ourselves so we could just talk and giggle the whole time! Followed by an awesome dinner to a nice restaurant. We got all dressed up, Laila in high heels and everything. We talked to our girl out how this is the place that you use every manner you know and oh my goodness was she cute! And I think Jeremy smiled pretty much all day, and I cried all my emotions all day. I wonder if those two things will ever change. 

SIDE NOTE: I once again had Jeremy write something to post about that day. I have it still and I will post it in a separate blog in a few days!



































Jeremy's oldest brother and his wife had a son (oh my word people this boy is so sweet!) and we were blessed to be his Godparents. And Jeremy preformed the baptism, such a wonderful thing! I love that our families are continuing to grow!



We went back for Thanksgiving and Christmas this years as well. Both holidays were filled with family, food, and the Lord. We were beyond spoiled again this year. Some of my favorite gifts were: my makeup (girl can never have too much), my 2 necklaces, my purse, trash can (long story here folks, but go with my excitement here!!) Jeremy's Avett brother CD.



I also celebrated another year I beat CF, and rocking new lungs while I did it. I was till home in Michigan and this birthday was so much fun! Started out with church and family brunch, then ice skating, and dinner out. I don't think my family have laughed as hard as we did that afternoon and evening. Even dinner was well done (get it Mom, Dad, Jer and Ang...GET IT!!) I got a new coat and comfy scarf, star wars shirt, planner for lists...just to name a few. I also got a carrot cake because its my dads favorite and the next day pork roast. Ever since we were little we got to pick a birthday meal that mom and dad would cook us...might be one of my fav traditions!

The beginning of January I started a job. I am very excited because this means I am feeling healthy enough to do so, and I can help my family out for awhile. I do miss being a stay at home wife and mother, but seeing as Laila is at school I get the chance to work while she is there. I have been enjoying the days that I have been able to go! With that said, germs have hit our house. Sunday and Monday the stomach bug grabbed a hold of the littlest one. And as of Tuesday I have strep and who knows what else, I have been on meds and can't seem to quite shake whatever this is. But hoping to go back to work next week.

That brings us up to speed, up to right now where I am sitting at my computer drinking my morning cream and sugar with coffee, out of my Choose Happy coffee mug wondering if its too late to eat the Chinese food in the fridge or if I should go for the normal cereal. Prepping myself to get in the shower and maybe do something before the day starts. Laila is at a sleepover. Jeremy is of course all ready getting his day started. 

I hope you all had a great few months. That you are keeping warm in this weather. Staying away from the nasty bugs going around. And have a good Saturday, no matter how you spend it. 

Wednesday, October 14, 2015

Numbers



I had a doctors appointment last week and I am still blown away with this whole breathing thing.

Every single number on all my tests went up. Although my oxygen "was only" at 98% on my walk, not the 100% I love to see. But Dr. Sonetti wasn't worried, especially because I walked an extra 100 steps from last time. I gained 2 pounds, my lung function went up 1% (for a total of 117%) and my chest Xray was clear. I learned I didn't need a bronc anytime soon, don't have to go to clinic for another 6 months, and am still a star transplant recipient. Such beautiful glitter.

I did have to gain two more doctors to the already long existing list. One is a skin doctor, just to check over everything since skin cancer is more prominent in transplanted people, and the longer I am out the more likely it can be. So, yes, I am a pale person all year round and when I do sit in the sun, I SPF up...and often. Its OK, pale is beautiful. A porcelain princess. 

The other doctor, unfortunately, isn't for preventative reasons. My hearing has been pretty bad lately. I have to ask what about a million times, and ask the same question over again because I don't hear that a person responds. I can imagine thats pretty annoying, if you want that answer for sure...just ask Jeremy. There is always a low tone in my ears and a full feeling. I am hoping it can all be fixed. Plus its odd because I am not on any meds that should give alarm for this. But hopefully in a few months that will all be answered. So, in the mean time, just talk loudly around me HA HA!

On Sunday, September 27, Jeremy got a divine call to in Sun Prairie, WI. This is also where Jeremy served as Vicar. So many emotions have gone into the last few weeks. Please pray for Jeremy as he deliberates where best he can serve his Lord.

I am coming up on my second lungiversary and trying to figure out how to exactly celebrate. I feel it will be pretty low key this year, which is fine. Maybe we will finally go out to eat, like we were going to that night we got that call or eat the steak that we left thawing in the fridge. Its always fun to just be able to be normal, and do all those things healthy people do...so maybe I will celebrate by drinking coffee and running errands. Oh the normal life!!

Wednesday, September 9, 2015

Not sure of a good title...



Its September and it seems like time is flying. 

Laila started school as a first grader, and I wish I could time freeze everything. She is just a funny, artistic, energetic, dramatic, stubborn, beautiful, too smart for her own good, little girl. She gives me reasons to laugh ALL the time. Her sense of humor in not missing. Her patience maybe, but not her sense of humor. She is in piano and ballet this year, and loving both. It goes with her artistic and dramatic side. She loves dresses, glitter, hair pretties, riding her bike (which she just learned to do before school started), horses, crayons, singing, cooking, Yahtzee, baseball, and just being a free spirit.

Jeremy is working hard, whether it be at his office and church, or his temporary office on our new patio. He also started the fall routine, of teaching classes, and classes, and meetings, with a side of meetings. He has been enjoying listening to the Tigers, having people over on the weekend, sweating this summer since it will be chilly out soon, getting caught up on Dr. Who (which he and Laila both really like, I just think it looks like Power Rangers for adults. Those 2 are just crazy) and peace and quiet while Laila is at school! Right now he is working on the service for Christ the King...and singing hymns while he does it (and getting a tad upset because his computer just closed his program!)

I have been feeling very good lately! My lungs feel great, and all tests I do at home are high...good lung function. My energy comes and goes, as well as my shakes, but I have been pretty good about just listening to what my body tells me. Hence the 8 hours of bing watching Greys Anatomy on the couch yesterday. But other days, I don't stop until I hit the pillow. I actually have really been enjoying this normal life. I have been meal planning, cleaning (TONS), sitting on the new patio reading, cooking, enjoying the company we have, and always trying to plan the next month out. 

I am still learning that my body is different. YAY, I can breathe! But, man, it was a long road to get here. I am often reminded of that road when I see my scars, hear the stories, or when my hand rubs against the wire in my chest.  YAY, I can breathe! But man, again, that road was hard. I was close to death. And even though, like I have said before, I didn't see it at the time, but yes...I was in fact dying. 

I just said to Jeremy the other day, its weird to think if I would not have been blessed with those lungs at that time, I wouldn't be here right now. And I know what you are thinking..."you don't know that, Cassie!"...but let me tell you I do know that. I understand that everything is/was in God's hands, so if he wanted me to live on 18% lung function for years, that I could have. But I remember that feeling of not breathing. I remember the feeling of dying. 

The transplant, the dry run, the almost dying. They have all changed every part of who I am. And I am not just talking about physically changing which lungs I had. I am talking about mentally too. I can say that all of it is behind me, I can. I can say I think more about living now, than dying. And I am. I can say that all that doesn't matter now, and I guess it doesn't. But it all shaped me into the Cassie I am today. The one sitting here writing this blog. 

She is so different than who I was. And I think that's ok, right? Sometimes I wonder. I wonder who I was, and if I ever liked that person. Or if I like this person. They are honestly so different. he strange thing is, I am not sure when it all changed, it was so gradually fast, that I blinked and missed it. 

But I will save all that for another time, another blog. 

Sunday, August 16, 2015

Last bit of summer vacation



Its August and that weird empty feeling hits yet again. Summer ends, school begins. I just don't like August and really never have.

Laila starts school in a week and again this mother is not ready. I'm enjoying the late nights, lazy mornings, and just the freedom that summer always brings. This week, the last week, is full of all the last minute things. Home visit from Lailas teacher, ballet try-outs, Lailas doctor appointment, last bit of school supplies, trying to finish as much as our summer list as possible. Oh, I want to start all over again.

We just got back from our almost 2 week vacation, and like everybody else our vacation was anything but relaxing. Cramming everything we could in, and still not getting everything in due to lack of time. 

We hit up a Tigers games at Comerica (Lailas first home game), birthdayparty for our niece, meeting the newest member of the family (gah Benji...so cute! Just look at the pic), deck party, and FAMILY FEUD.



The Zell Family flew down to Atlanta and taped the show! Oh my word! Steve Harvey had me rolling, I had tear in my eyes. The whole experience was crazy and awesome and exhausting..so many emotions in so little days. We will air sometime in May or June...so stay tuned! 



My health has been so amazing, I have no complaints. My lungs are working better than ever and I say a thankful prayer at least 2 times a day. I am so blessed to have this blinged out gift. I really hope one day I can thank my donor as best as I can. I hope that one day I will hear from them. This part is hard. I always imagined I would hear from them, that I would meet my family. Get to hear stories of my donor. Still praying that they find comfort, and that one day they will want to hear from me and know how grateful I really am...words honestly will never be enough, never give justice to how grateful we all are!

The rest of my family is doing great too. Mom and I are both trying to tweak a few things in order to feel the best possible, but we will get there. My dad is enjoying having a semi healthy family. My sister is having a ball with her new condo and growing her own veggies...her cucumbers are tasty! Jeremy is starting to get ready for the school year and planning the next few months, he loved Atlanta and has some funny stories! Laila is, well, Laila. She is growing like a weed and has some pretty good lines...not sure where she comes from (ok, I know, I know, she acts just like me!)

I hope you are all doing as well as I am. Keeping my chin up, nails polished, and house semi-clean. I finally after months got my medical id bracelet fixed...big news for me. Also excited that I have been grabbing my camera and clicking away, and still have some more "appointments" to come...

Enjoy the last bit of summer!

Tuesday, July 14, 2015

Summer, Summer Time



Happy Summer everyone.

Has it really been 2 months since I blogged?

Anyway, I hope you all are having a good summer, full of nice weather, fun times, and lots of relaxing. Ours has been so crazy.

We made a list of thirty things to do before summer, and we are more than half way through. Hoping to do a few more this week. Summer is flying by so I am trying to make sure everything gets done, without a rushed "must do" feeling. Tomorrow: a simple picnic.

We have had a lot of people visit this summer. Its such a fun thing. And I am excited to say my mom and DAD are coming over later this month. I am excited to have them here and just be with them.

Laila and I have made it back to Michigan for 2 baby showers and some fun. Crossed off KAYAK from out r summer list while we were there. And we are headed back in the begging of next month. BECAUSE...

We are headed to Atlanta for Family Feud! Hoping the Zell family makes it on, and then keeps making it on! We have been practicing our "Good Answers" a ton, so much so that Laila even says it to just about everyone. The whole experience seems like a dream, its crazy and everyday we seem to get more information on the next step. Once in a lifetime thing right here, and very excited to help Mom cross something off her cancer list.

The last few months have been a little tough for me. My lungs are doing awesome! But my body just hates everything I do. My lungs love my medicine, the rest of my body could leave it. I feel like I am abusing every other organ I have. I am tired all the time, my self image has been low and keeps getting lower...I hate what I see in the mirror (and NO I dont want you all to say Im pretty, so please don't.) I cant get motivated to do too much around the house, so putting shoes on during the day helps me get moving, until I crash on the bed. My body seems to not want to do anything, including my body. I am anemic now, so I had to add iron to my pill box. I had a little scare so they biopsied my uterus...thank God it all came back normal.

 I found out I do have Polycystic Ovarian Syndrome. This hit me hard. Just another thing that I can't control. I am not aloud to take hormones with the rest of my medicine, so to get any relief or "cure" would be to have more organs taken out. I can't even think about this.

I keep telling myself this is all mind over matter. Just as I did when I was recovering from transplant. Set my mind to it and I can make it all better. Its scary. 

But with it all said, I am still trying to make sure we have a good summer. I don't want school to start without that list complete!! So here is to the rest of summer with a smile on!