Chronic Graft vs Host Disease :(

Hello a year and half post transplant! I can't believe it's been 6 months since my last update! And so it is, LIFE GOES ON AFTER CANCER. A quick update; I have moved back to Austin, TX just like I always said I would. I DID go back to work full time in a pediatric clinic, I am a full time MOTHER again to Ryan and Rachel who started first and second grades this year! I really dove right back into life. Big move, full time job, full time mom (including Martial Arts and Baseball for Ryan, and Gymnastics for Rachel)! I go from 5:45 am to usually 11:45 pm. Since being back with the kids we've been to Sea World with Aunt Jenn and Uncle Adam, many days spent at the pool or water parks around town, the circus, back to Arlington to visit and so on. I will NOT ever lay in a hospital bed again fighting for my life and question "why didn't I do that when I had the chance?" If I want to do something, I'm going to do it now and not wait; wait for what anyway? I have a completely different attitude about this life now. I try to do every last thing I can with Ryan and Rachel NOW! It's all about making lasting memories today, because that's all I'm really guaranteed. Having said all that, this just wouldn't be a cancer blog without COMPLICATIONS FROM THE CANCER TREATMENT right! LOL. That complication is coming in the form of chronic graft vs host disease of the musculoskeletal system. It sucks. It's very difficult to describe how it feels to have someone else's immune system attacking your joints and muscles but this guy's cells are wreaking havoc on mine! My hands and feet will cramp into weird positions and stay there for a few MINUTES...like getting a charlie horse only you can't stretch it out...AT ALL. In the last few weeks it's been happening in the top of my feet like in between the small bones in there and there is no way physically possible to "stretch" it out, it stops me dead in my tracks, it happens in my calves, behind my knees, my hips and the hands. IT'S A NIGHTMARE! It happens unexpectedly, it happens at work, it happens just sitting on the couch, it happens while writing, it happens ALL night sometimes! I'm very frustrated at the moment. About two weeks ago my doctors decided to start the steroids again. 60 mgs of Prednisone, my nemesis. Also, back on the anti-rejection medicine Prograf. Prednisone makes you crazy. I haven't slept good in days now, mood up and down as they take me down off the steroid and then back up as the pain gets worse when I go down. UGH. They say this will be life long but "manageable". Awesome, can't wait to start managing! I will be going to Dallas on Thursday evening to be up bright and early for...wait for it...A BONE MARROW BIOPSY! Yes, another one of those. I'm focusing on seeing the family, I really need some good family time this weekend! Just being there laughing, eating and enjoying what families do. Mom's making a roast with all the fixins. Mmm. I've considered not working full time anymore. I can't imaging being ONLY 30 (Lorenzo) ;) and NOT working. Maybe I'll become a room mom for one of the kids' teachers, or take a cooking class, go back to school and do something completely out of the medical field that would be less stress (and pain) on my poor body, I just don't have any ideas yet. But I do feel this may be a good road to consider given the new circumstances. Any and all ideas for a new career path are welcomed! I need to(and will)update this more often. I have recently found someone new that has been recently diagnosed with this awful disease process. She too is a young mother with a husband and son. She has started her first round of chemo this week and has NOT been feeling well. Rita, I lift you up through this round and pray your body does what it needs to FIGHT the cancer and may your counts recover quickly so you can get home and rest. Still Fighting, Katie 18 Months post transplant....I'M FINALLY GETTING SOME HAIR!

ONE YEAR POST TRANSPLANT

Wow, where to even start?! It's kind of difficult for me to look back at this last year. I've read my entire blog over this week. It really puts into perspective just how much not only I, but we as a family went through. There were many occasions I was ready to throw in the towel and give up (the easy thing to do anyway), but you all simply weren't going to let that happen. There came a point where I had to make a decision; I was either going to fight through it all or I wasn't and if the latter then why bother at all? When I was diagnosed they laid it out to me in very simple terms; you will endure 6-8 rounds of chemotherapy, WE will find you a bone marrow donor, then you will have a transplant. Never in a million years did it cross my mind that I may not ever find a donor...it was never presented that way so why would I? Today I know exactly how lucky I am to have not only found a donor, but one perfectly matched to me 100%. Some people never get a donor at all. And so it was, I went through my rounds of chemotherapy, they did find me a donor and I had my transplant just like they said. Not without complications of course, I mean what kind of cancer treatment would that be? HaHa! But, I fought through it all, and when I say I fought through it what that really means to me is I put up with all the pain, vomiting, rashes, taking an obscene amount of medicine, infusion after infusion of magnesium, potassium, IVIG, bone marrow biopsies, spinal taps, pneumonia...twice, shingles, muscular atrophy, difficulty walking, emotional pain, anxiety...need I go on? What a roller coaster ride of a year it has been! There were ABSOLUTELY days I prayed the good Lord would take me home, days I thought I'd never make it through another day, days I thought to myself, "well, yes I made it through transplant but at what cost? To live crippled by these multiple symptoms I endure on a daily basis that were pure HELL!?" Those feelings were very real to me. My Mom and I were sitting in an ICU room while we waited for a regular room to be ready for me that my transplant would take place in and I remember saying "Mom, I'm terrified and don't think I can do this" and she said "Katie, don't you ever give up on me!" Probably the most heart wrenching thing you could ever hear your parent say to you. And that has stuck with me throughout my journey. Mom, I will NEVER give up on you! I was constantly reminded by MANY people to "take it ONE day at a time". Truer words have never been spoken! I'm proud of myself most of all. HERE I AM! ONE YEAR LATER! And I can tell you all IT DOES GET BETTER! Wow, never thought I'd ever say that! I feel great too! I'm down to one pill a day, I have joint pain but I can deal with that! All the burning I used to have in my gut and esophagus is completely gone. I do get heartburn occasionally but NORMAL people get that too! My CONSTANT nausea is no longer constant but occasionally now, I still vomit if my stomach doesn't like something I eat but at least I can eat "almost" anything I want now! I'm a healthy weight, my skin looks great (no graft vs host disease) and I'm ready to go back to work full time and back to being a full time mommy to RYAN AND RACHEL! They are beyond ready to have mommy back too! I wrote this blog to hopefully help someone else in this situation that thinks they can't do it or thinks "this will never get better". It does and it will...one day at a time. I'm sure I'll still have hiccups along the way but I know if I lived through this last year, I can LIVE through anything! Still Fighting, Katie

LORENZO and KIM

Wow, Where do I even start. A day or two after I was diagnosed w/ Leukemia my sister Kim went on a mission to find someone I could relate to and draw inspiration and a positive outlook from. We knew my diagnosis came with a grim prognosis from what we were told and then even worse when when we found out I was Philadelphia chromosome positive. Kim went on to do her research which I actually knew nothing about at this time. And I remember her coming into my hospital room one day, probably one week after my initial diagnosis and she sat down on my bed and said, "I just wanted you to know that I have found someone with your exact diagnosis and he has a blog I'd like you to read". At this point I was pretty sure I was going to die. My doctor at the time didn't have a single patient with my cancer, didn't know of any doctors that did and there were no support groups in my area with my cancer because obviously you need patients or survivors for that...there were none. So while my family and I were set to "give this our best shot" I must say in the back of my mind I was thinking "I'll put up with this until I cannot physically do it any more". I had heard and read horror stories about going through chemotherapy and quite frankly, I wasn't interested in "being sick". Kim knew how sad I was; sad I had dropped my children off at school and two hours later I was diagnosed with cancer, sad arrangements had to be made for them to be picked up from school because they told me my life hung in the balance and I must stay to start chemo the very next day, sad someone else had to explain to them that mommy is very sick, sad (and grateful) their father came to pick them up, sad I didn't know if I would ever see them again etc...I think you get the idea...I was sad, depressed however you can identify. But Kim also knew that reading this mans blog would change my outlook completely because she had already read the entire blog before telling me about it for the obvious reasons. You can read and have a good understanding of illness usually with no problem but there isn't as much on ours. I read the blog. My Mom read the blog. Jennifer read the blog. Aunt Sherry read the blog. We all had a better understanding of what was to come after reading "THE BLOG". (except for Jenn, she was my guru in the medical sense). It was a man in New York named Lorenzo Fortunato. Reading it immediately changed some of the feelings I had. He still lived his life to the fullest extent he was able given his situation. Talk about turning lemons into lemonade! This guy did it! But after reading it a deep dark feeling came over me again. I said "Kim, did you realize his last post was June 27th? This is October. (Yes, we did think he probably passed away and no one updated his blog). It's was still so inspirational that I read it daily. I would research terms I didn't know and came to know quite a bit about my cancer through his blog. It was maybe a week or two later that Kim came to me again and this time she didn't even sit down but couldn't wait to tell me that she found him! Yes folks, she facebook stalked him and found that not only is he alive AND well, but that he is pretty active on facebook, so she sent him a message...(Kim would NEVER send a random person a message on facebook, but she did this solely for me! She needed her sister to have that "FIGHT" in her and she was determined to give it to me)! When I learned that he had responded, it's weird to explain, but it was like Christmas to me. I would finally have ONE person that I could relate to! It's not like breast cancer (raise your hand if you know someone with it, who has had it, a family member with it, a friend of a friend etc..) everybody knows someone...Susan Komen has made sure of that. I needed this one person....badly! And God picked the perfect person. He has been a huge part of my treatment and recovery. He certainly knows when I'm having a bad day, and why I have some of the feelings I do when others don't...what human being doesn't need that? He's been a great mentor and friend and I need him to know that! His staple is "HOW U DOIN"....hello, he is a New Yorker haha. I bring that up because the day before my transplant he called the hospital and the note I got said "Hi you're doing"...yes, well not everyone in Texas understands a New Yorker I guess lol. But it felt great knowing he was there cheering me on! Kim recently got to meet him in person in New York, she had the best time and I was excited for her! Ten months post transplant. Lorenzo is 5 years! This gives me new hope and inspiration on a daily basis. How u doin!