My Moments to Breathe

Tuesday, July 29, 2014

2 Cities

By now most of you know the love I have for my home town...and really the whole state. But as I was driving around with my Dad today I really sort of missed it.

There was a ton of traffic, sirens blaring every hour, planes over head, a coffee shop or something convenient on every corner, and milk is about a $1 cheaper per gallon. It is full of life and great for people watching. It is where my most of my family is, the people who have cared for me my whole life. It is where my childhood bedroom is and where I can get the best night sleep. Ahhh, Ann Arbor. 

I grew up in an average size subdivision, Forestbrook. It has a pool, nice neighbors, and small cemetery which holds General Terhune from the Revolutionary War. I still drive into this neighborhood and just feel a bit of joy. I am back home and settle into a childhood state.

It is where most of my CF journey took place, they helped me stay as healthy as possible at the University of Michigan. That M mean on a lab coat is pretty awesome. My doctors, and even more so my nurses, were hard workers. The CF gene was discovered here in Ann Arbor, that's just huge. That hospital was like a second home, and I was fortunate enough to love only 15 minutes away from a place that helped me survive. 

I am proud to point to my hand and say Ann Arbor when people ask where I was from in Michigan. It is such a diverse city. All sorts of people live here. Heck, even the city itself goes from country land to huge city and everything in between. I have always felt like Ann Arbor was my own little world with everything I needed. 

I do like Hartford, and the longer I live there the longer it seems that I can fit in (besides my Maize and Blue shirts, Tigers gear, and my Amen in middle of the prayers....sorry you can take a girl out of Michigan but you can never take the Michigan out of the girl!) I enjoy trips to Walmart, the smaller city living, the walking to the local ice cream parlor, and wherever you go you run into at least one person you know. I remember telling Jeremy I always wanted to be in Cheers....where everyone knows your name, ba-da-da-da-da-da! Well, that was sure answered, and yes I do like it. 

I like being close to Milwaukee and Madison and the towns between. I love that we are so close to church and school. I love friends I have made and that I can hang out with them and act like myself, I am becoming more comfortable. I love that I am in the same state as the "Wisconsin Zells" now and since I am getting healthier I will be able to go up to the farm and laugh at all the funny stories and memories. I like that we are close to the SEM and Cedarburg. 

Wisconsin is where my life was saved through transplant. My two favorite doctors are from the University of Wisconsin, and I would not trade them for every one else. And really all my favorite (besides 2 from UM) are working in that hospital. They have a huge trust factor with me and y heath. And the plus if they are so patient as I learn how to be  transplant patient vs a CF patient. I know how to do CF and do it well, I am still growing in the whole transplant thing. 

I have been pretty blessed.

Two great cities I can call mine!

Monday, July 21, 2014

More 25 Things!

My brain has been a little foggy this past week, and seeing as I haven't done this in 2 years...I thought I would give everyone a tiny glimpse into Cassie. Not CF patient. Not transplant survivor. But me, Cassie.

So here is another random 25 things you may or may not know about me....

1) when my parents were picking my name my dad settled on Cassandra, but told my mom he would pretty much only call me Cassie. Even when he married Jeremy and I he used Cassie in the vows.

2) There are about 30 pictures of Laila hanging in my house. and I still feel I could hang about 30 more. (Yeah its 2 of my loves put daughter and photography...)

3) I was not a good student in school. I mean behaved pretty well, never had detention and the one time I did it was taken away. But I wasn't a studier.

4) I have low self esteem and I am a huge fan of self deprecating humor.

5) I miss wearing shorts. (way to self conscious to wear them cause some meds messed my skin up)

6) One of my favorite movies is The Sandlot, and love to quote it.

7) I want to go back to school but am too scared to do it.

8) I was on the yearbook committee in high school.

9) A few clever hashtags crack me up. Too many annoy me. #ilikehashtags #hashtag #toomanyhashtags #annoyinghashtags #doihaveenoughhashtags #guesswhatanotherhashtag #hashtagjusttohaveanotherhashtag

10) Since I love to eat and love my family...Thanksgiving is naturally one of my favorite holidays.

11) Give me a coloring book and crayons and I can be pretty entertained for some time (this makes me feel and sound like a child...but I honestly do not care!)

12) When I was younger I always wanted to be good at something (i.e. sports, class, singing, etc.) but never was. My mom used to tell me good at being nice matters. I never believed her until this year. Hey everyone, my mom was right, being nice really does matter!!!!

13) I love to dance. But my favorite place to dance is in my parents kitchen while getting ready for a meal. (And I passed this one on to my daughter)

14) I love the game of cribbage.

15) I hate sprinkles.

16) A piece of artwork I did in college was in a gallery at a few colleges in the Ann Arbor/Ypsi, MI area. I normally don't tell people this.

17) I like to play video games and watch marathons on Netflix (hello Game of Thrones and The Walking Dead...)

18) Pink is my favorite color. Its the girlie side of me coming out (yeah yeah yeah, I know im like all girlie.)

19) I was offered to be an assistant coach to a JV team at Ypsi but declined it to go to school and help my dad and Eric coach HVL that year

20) Blackbird by the Beatles is my favorite song (and if you look you will see Blackbirds on the Team Cassie shirts this year!)

21) I don't have a sense of smell. So when I try to pick a candle, lotion, or anything like that...I need someone else to tell me if its good or not. And if I wanna know what its like you have to describe it in words like "fresh, warm, cool, sweet...etc."

22) I don't have to use an alarm clock (besides for medicine) because my body always knows when to wake up in order to have enough time in the morning. This used to be better in my high school and college days.

23) Nicknames:  my mom calls me Babydoll, my dad calls my Cass-a-boo or Sport, my sis calls me Nitty, Laila calls me Mimi, Jer calls me Sandra, my bestie calls me Bestie...and I love them all

24) I was born in Oregon

25) My husband is a Pastor, my Dad is a pastor, my grandpa was a pastor, my Great Grandpa was a pastor, and a bunch of uncles/cousins/family are pastors too. Welcome to the WELS!

Friday, July 11, 2014

Its in the past

Tomorrow is 1 year "anniversary" of my dry run. Totally crazy, right?! I am feeling pretty blessed that a year from the date that was very dramatic in my life, I am sitting in a chair, breathing and watching TV with my little lady. BREATHING. AHHH!

I know I had told people that that day was hard on me. But I never really said how hard it was. It messed with me more mentally than physically, but the physical bruises, soreness and marks all over my body (including the marks were they were about to cut) just added to the mental mess up. 

But, YAY, I can say that that is in the past and I can truly just move on from that day. They weren't perfect but now I have these gorgeous set of lungs that blow out all the beautiful glitter they can store. I lived long enough to get those lungs, even if the first set were not meant to be.

What a huge sigh of relief!

Thats it. That is all I am going to say about it. It doesn't matter much anymore.

Everything is still going very well. My lung function is high and now that my prednisone is lower I am finally able to sleep again (say goodbye to dark circles and a puffy face!) Plus my anti-rejection meds are getting lowered each week. Less pills is just always a good feeling, it gives my body a little bit of a break! 

In order to celebrate my dryruniversary, I will spend all day running around doing errands and playing with my daughter, all while taking those deep breathes! Bring on the oxygen!

Wednesday, July 2, 2014


This is now how I look at life:

Before transplant, while I watched and felt myself fall farther into the end stage of cystic fibrosis, I was a sad and very exhausted person. I woke up everyday in order to take care of my family and fight for another day to live. I went to bed hoping the next day would be a little better and maybe I could squeeze in a few tasks that day. I was out of oxygen. I was tired. I fought hard and my job was to eat, take my meds, and breathe using only the 20% of my lungs that worked. I didn't take care of my house, husband or child very well. I held much of my thoughts and sickness close to me, not letting too many people really know how or what I was feeling both mentally and physically. Yes, I let people in to know some of it. Heck, pretty much this whole blog is all about it. But I didn't tell the whole truth. My lungs hurt. My body hurt. My emotions hurt. 

I wasn't living.
I was dying. 
I just didn't really get it...until now.

I am just grateful that at the time I didn't really know how bad I was. I am just so thankful that I didn't mull over it too much and just did what I had to do when I had to do it. I am glad I was stubborn and that didn't realize death was just a few steps away. I am glad my body was stubborn and wouldn't quit. It scares me when I think about it now. It scares me to know that in a very big reality, right now at this moment I would probably be dead. It smacks me in the face, hard. Dead. Leaving so many things undone. You all know that I was afraid to leave Laila motherless (and c'mon who would comb her hair, Jeremy would have just cut those beautiful curls.) Nobody would be here to fold Jeremys socks or flip his omelette. Not that I ever thought I, as in ME, was important in their lives, but the person I was was important. 

But that was then and this is now.

I can live now. I can breathe and get oxygen now. Do you hear that sound?! Me either, I am breathing and don't hear all the crackles, wheezing, and gurgling in every breath. I don't hear the oxygen machine pumping air in the next room. I can sleep flat on my back or any side, or my stomach...whatever I want (although I still use two pillows most night because my body is so used to being in that position.) I can run around all day and not be exhausted. And when I am tired, its not because I am not getting oxygen, it is because I am out of shape. I can walk on the treadmill for a long time on a good speed  and when I am finished I can walk off and continue on my day. I am enjoying exercise. 

I don't have to constantly have to worry about dying. I play with Laila, do crafts with her, take her places, run with her, laugh, dance, be a jolly kid myself. I am healthy and healing and life is a miracle. I look at things different. Why fight with people or let the little things they do bother me so much? I am living. Stop and smell the flowers, enjoy the sunshine, make rolls with dinner, people watch, help and smile at people. I am thrilled to be here enjoying this rainy day in Hartford. 

I wake up and the first thing I do is take sanitize my hands, check my temp and blood pressure, use my inhaler, check my lung function on my spiro, do my ONE neb, pop my pills and go do whatever it is until my cell phone alarms to take my next round of meds. 8, 12, 4, and 8 are my times to make sure Fran and Shannon stay happy in their new home. I don't count pills with every pop anymore. I smile when I have to chew my tums. I drink a glass of water to flush everything out of my body and keep it clean. Yes, this transplant will forever rule my life, as much as my CF does. The difference being that this transplant saved my life from this nasty disease which was killing me a little more everyday. CF consumed my life in a totally different way. I get lab work done at least once a month, I listen to my body (seeing as it has only been 7...almost 8...months since my life changed) and try to rest.  Life is just better when you can live.

I am not dying.
I am living.
I get that now.