Wednesday, October 14, 2015
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
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
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
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!
Thursday, May 14, 2015
This one was is pure selfishness. It was for me to try to be OK with myself and everything imperfectly perfect about my body. I crossed this one off with a little bit of excitement and a whole lot of nervousness.
My scars. I had pictures of all my scars taken.
First, thank you to Twig and Olive for being as wonderful as ever and once again capturing a moment in our families lives. Courtney made me feel so beautiful. I am telling you, if you live in WI you should check them out, some of the most beautiful photography I am ever seen.
There isn't a part of my body that doesn't have a scar on it. I wear most of them with pride. A sacrifice made in order to keep beating Cystic Fibrosis. Looking at them, they are far from beautiful; yet the story behind them blows me away. I am a survivor, they tell the most detailed story of my war.
I am going to post a few pictures below. But as you can guess, the position of my transplant scar is going to hold me from putting that scar on the blog. I don't want to offend anyone by what they feel they would see. But I will put a few of my other scars.
This is, ummm, very scary for me to do. I have lived my life trying to cover up my battle wounds from the world. The reason? The world isn't ready for it, its human nature to stare and wonder. If I could stop everyone I see and explain it all to them and the reason I have each one, I would feel better, I could do it confidently. So I suppose I am not ready either, I am not ready to not care what people think when they see them. So I beg of you to understand my shyness in doing this, in unveiling yet another ugly result of this killer disease.
Lets start with my transplant scar. Its big, its about 20 inches long. It starts from 6 inches below my armpit, makes a clamshell shape through my ribcage, and ends 6 inches below my other armpit. I had 58 staples to close that bad boy up. It now looks pretty amazing, it healed very well. The interesting part is on my right side of my sternum, you can feel where they cracked me open. I am a little lopsided HAHA!
The chest tube scars. I had five chest tubes after transplant, each about the the size of your finger. I still am amazed that my body handled that many...honestly my body gets little woozy and sore when I talk about all this. I have 3 scars on my left side and 2 scars on my right. Each tube ran through a space in between my ribs and they were stiff, and I could feel it rub against my ribs. Those scars, although necessary, were a pain in my everything...
You all watched as I got my port, and now have it removed. Laila plays with this scar weekly. She likes talking about it, she remembers Mom having the "ball" in her chest and now its just a reminder that she can squeeze mom extra hard without having to worry about it.
My Gtube scar. I had a feeding tube when I was younger. I still remember my first week of high school basketball not sure how to address the thing coming out of my stomach. I could just quickly change with my back towards everyone. I could ignore it and just change in a stall. But it was my first step in just trying to be normal with battle wounds. So, I just got everyones attention and showed them, because I didn't want to have to worry about hiding. In college I had it removed and then as an adult got another one placed, and you were all with me as I got to get that removed too!
The battle wounds that make me the most anxious. I don't wear shorts, rarely wear shorter skirts, and goodness if you can get me into a bathing suit I will most likely have something covering me up! In my early 20s I was placed on an extremely high dose of prednisone and for way too long, and even though my lungs healed, my skin never could. It still is having problems (especially since I am on prednisone for life.)
You will see a few under my arms, and on my elbows, but the worst is my legs. I have stretch marks covering my entire thigh area, and now slowly going past my knees. A Zebra would be jealous of the markings. My skin is weak, and it hurts. I didn't wear jeans for years, and honestly, don't wear them too often now. I've tried to look at them as beautiful, but can never see anything but a disaster. Me telling you all this won't change my mind set although I pray that it would. Yes, I do hope it will help me with the worry of wearing shorts and skirts...I made a promise to myself after I wrote this I would start to do those things!
So this is me. This is my imperfectly perfect scared up warrior body.
|Stretch marks on my legs, many still hidden under the shorts|
|My GTube scar and if you look just toward the right of that you can see some of my chest tube scars|
Crossing off number 24. Get pictures of my transplant scars
Thursday, April 30, 2015
This house has had one crazy week.
We were able to spend a good chunk of time in Destin, FL for a family friends wedding. These are the type of family friends that you call "Aunt" and "Uncle" you the kids care share the same found memories of Shoneys with.
My sister, Angie, and our daughter, Laila, we both asked to be in the wedding. They all looked beautiful with the white sand and blue ways. It was so awesome to watch it all happen. One of those times you watch the father/daughter dance and tears come because you remember when you were 6 and vacationing with them, now we are all grown up.
The Tuesday before we left, Jeremy got a call (if you aren't sure this means, think of it, I guess, as a job offer) to a church in Norfolk, NE! Unreal. Exciting. Nerve raking. Plus many more emotions. The way he told we was actually kind of funny, the poor guy was getting so frustrating cause I was being my ditzy self. We have learned a ton about Norfolk, about Nebraska, and talk a ton about it during our 36 hours in the car. Please keep Jeremy and our family in your prayers while he deliberates. And thank you to everyone who has given us advice so far.
The last few days have caught up to me and I have been running a fever as high as 102. Thank goodness Jeremy could drive the entire way home because I kept falling asleep in the middle of a sentence. Today, I took a warm bath, medicated myself up, called the doctor, got on antibiotics, and the fever is down. Please pray that this will just take 10 days of pills, and I don't end up in the hospital again.
People may think I complain all the time, but I'm not. I'm just letting you know that even though I am blessed with a miracle in miracle with this gift. Transplant life is still very scary. One wrong cold, or pills not swallowed could mean a life...my life, and I fought too hard to be here. I can be fine today and in the hospital with pneumonia the next. I'm telling my story so that people can understand the real life behind it. The cold that Jer has, is a fever of 102 for me. There is no immune system, we transplant patients kill our in order to keep our organ happy where it is at. I'm not even that good of a patient, I try to live too much of a normal life.
Keep and eye out for a post tomorrow. I crossed off an awesome thing on my bucket list and have been thinking how to share it. But I am just going to do it! YAY!!
And I ask again to keep Jeremy in your prayers!
Tuesday, April 7, 2015
I hope that everybody had a great Easter. We had a relaxing one filled with jammies, steak, and peeps in our yard. Yeap, we got peeped. Ha, its actually pretty funny...Laila loved it! Church services where very nice, and it was great to sing in choir. Jeremy had sunrise service so during festival I was up and down the stairs so I could sit with the family.
I had a doctors appointment yesterday and it was probably the best yet. I once again blew all numbers out of the water. Jeremy actually laughed as I dusted my shoulder off on the way back from PFTs. 116%...so as I brag once again, my lungs are probably better than yours. My oxygen was 100% my entire 6 minute walk, which I managed to step over 2,000 steps. My XRay was clear. My weight could probably get better, but nothing was said. The only thing is that my BP is still a little high so they bumped up my meds again, and may need to add another "agent" to help lower it if this doesn't work. The Dr. pretty much said I was one of the best cases...blush.
My team is finally realizing that even though I am a great case, that I never do things easily...like weird blood in my throat, or asking for a dog, or getting sick on holidays. But, this has pretty much been me since I was a child, just ask my mom, dad or sister. I have great timing. So after a few more questions yesterday Dr. Sonetti smiled and said, "Anything else? You want to travel to a third world country? Live in a dirt house underground?" HA, no...I think I am pretty much done asking to break the rules.
It is April of 2015 and its the first time I have been feeling "healthy" this year. Praise the Lord for giving me all the necessary therapies, meds, team, loved ones to help me fight CF and become a transplant patient. But of course, also for my hero I will never know...my donor. For his/her family for giving my a more than awesome gift.
Transplant isn't easy, the road is difficult, both physically and mentally. I've fought all my life and now, today, I get to breathe a little easier. Relax my stressed out mind and body. I am doing well, very well. I get to clean, run errands, do laundry, pack, bath Laila, and get ready to catch a train to Michigan. And I won't run out of breath, I can do it all and still have energy to entertain my child on the train.
Praise the Lord, for wrapping me in his arms. That tiny prayer I said over and over before transplant, is still being answered.