January 16, 2017

When Life Gives You Lemons: Infusion Center Diaries

January 16, 2017/ Mallory Sauer

The Infusion Center Diaries - is this a series I'll continue? Who knows. But for now, here is your long post alert and my latest thoughts on life.

This is a post I've been thinking about for a LONG time. I've gone back and forth so many times on writing it and posting it. I never want to come off bitter, rude or insensitive through wordy posts. Well, today I finally was tipped off and decided it's time to finally share this post. So here we go.

I'm going to preface, as always, I'm not sharing these details for pity, sympathy, or anything of that nature. I share my experiences and thoughts to help other people. With my very first post I said, "If this helps one person, then it's worth putting all this out there." I've accomplished that and it only motivates me to keep going. If my hardships can help inspire you, then this fight is worth it. Anyway.

In the last 14 months of my life, here is a general list of things that have happened:

Stage 4 [incurable] cancer diagnosis
Loss of the ability to ever carry children and harvest my eggs
MAJOR Crohn's flare
Ileostomy surgery (and adjusting to a very new lifestyle to accompany it)
Loss of my grandmother, to whom I was extremely close, and couldn't attend the funeral because of said cancer diagnosis
Laid off from a job that I LOVED
Lost my dog, love of my life (I know the dog people out there feel me on this one)
Heartbreak due to the end a wonderful four and a half year romantic relationship
Countless hospital stays
All the issues and defeats associated with my cancer and Crohn's flare (most of which have been documented in previous health posts)

I'm sorry, but at 27 that's a lot to deal with in a short period of time. And I hate to say this, but I feel like I'm forgetting something. Again, l'm not sharing this so you feel bad for me. Quite the opposite actually, which is why I call this post The Infusion Center Diaries.

None of this is fair, I think we all can agree on that. But the lesson I've learned is that it's all in how you handle things. Today I had my routine infusion at the cancer center (2x a week for fluids, among other infusion treatments), and the woman next to me would NOT. STOP. COMPLAINING. I've seen her before and this is pretty routine for her. Everything was wrong in her life, and she will tell anyone who will listen (whether you want to or not). I'm not kidding. In a 10 minute span she said so many 'glass half empty' comments I was about to lose my mind. And we're talking really trivial things - down to how far away she had to park (btw, there's free valet). Everything out of her mouth was so negative and "woe is me" and it was just exhausting to listen to. To help paint a picture, she has breast cancer and smokes like a chimney, so there's that. I get it, sometimes the smallest things can change your mood and ruin your day. Or you're just having one of those days where everything seems to go wrong. Really, I get it. I complained about some really dumb things before all of this. And at the time, those dumb things were a big deal, just like the things you might complain about are. I'm not saying any of this to diminish things going wrong in your life, or hers. Not at all. Not everyone is going to have to take on such big battles like me. The whole point is how you handle your troubles, no matter how big or small.

It's frustrating to have a bad day, or have bad things happen. But it's how you handle them that counts. You don't think I get mad when I see my friends going out and having fun, and I'm stuck at home or in the hospital, again, because I don't feel well? It frustrates me beyond belief that I'm held back so much because of my health issues. But you better believe that I use every ounce of good energy I have whenever I can. There are even times when I force myself to get out and do things, when all I want to do is lay in bed. I refuse to let my life pass me by like that. One thing my mom has said through all of this is that it's up to me to take my life back as much as I can. I've been robbed of so much that I'll never get back. It's up to me how much more I allow to be taken from me that's in my control.

That's my message to you with this post. It's ok to have a bad day and complain about everything, but don't let it become a habit. Your problems are just that, your problems. It's completely up to you how you handle them. My friends constantly say, "I feel so bad complaining about this to you" and I get so mad at that statement. I was complaining about similar things before all this. The size of the problem isn't the point. The point is that it's all in how you deal. You had a rough day at work? Fought with your significant other? Well cry it out, eat some ice cream and move on. Put your problem in a balloon and let it go. You decide whether a problem affects you for 5 minutes, 5 hours or 5 days. Make the call and commit.

I'm not going to sit here and act like I have a shiny attitude every single day. Are you kidding? I'm SO guilty of crying and complaining and getting mad. Sometimes I feel like I'm going to physically explode from frustration. But I allow myself to feel those feelings, recognize them, and then move forward. I take my life back.

It's up to you what you take away from this post, but I hope it at least inspires you to look at your troubles a little differently and make the most of every moment of your life.

As always, thank you for the unwavering support to all my health posts. Thank you for the love and positivity. Thank you for all of it, from the bottom of my heart.

December 28, 2016

When Life Gives You Lemons: Health Update 2

December 28, 2016/ Mallory Sauer

It's been a while since I've posted a health update on here, and a lot has happened lately so it feels like the right time to update you all on both my cancer and Crohn's. There have been a handful of hospital visits, tests, etc. because of both problems. Therefore, this post is on the lengthy side - get comfy.

LET'S START WITH CROHN'S

Oh Crohn's. You stupid evil disease. I don't think people realize how stressful this disease is. It just takes so much out of you, both physically and emotionally. This article does a great job explaining the struggles.

As you all know, I had an Ileostomy surgery back in August. At first it was great and I felt like I got a little bit of my life back. I hated (and still do) the bag more than anything, but it allowed me to go out and be social again. If you need a refresher, my first Ileostomy post is here. I really was feeling great at first, but things took a turn for the worse. My Crohn's sypmtoms just wouldn't calm down. Just because I had the surgery, doesn't mean my Crohn's is fixed. I still have active Crohn's, the Ileostomy essentially just gives the part of my colon where I have active disease a break. Without food passing through or any activity in the diseased part of my colon, it has time to heal. On top of cutting off activity to that area of my colon, I still take Crohn's medicine to put the disease itself into remission. Because my Crohn's is still active, I still have Crohn's symptoms and I can't have my Ileostomy reversed until my Crohn's is no longer so active. Needless to say I'm frustrated. I had this surgery to feel better, yet I still feel crummy pretty frequently - and have a bag hanging from my stomach which I don't exactly have positive feelings about. We've had some trouble finding a Crohn's medicine that works for me. I'm now on drug number 5 and feel very optimistic that this will be the one to solve the Crohn's problems (knock on wood). I'm adding in vitamins and supplements to help as well. I'm basically at the point where if you told me to stand on my head, sing the alphabet backwards while eating grasshoppers because it would cure my Crohn's, I would.

My Ileostomy is also causing problems now - mainly in terms of nutrition/absorption. My body isn't absorbing things the way it should. This includes both food and medicine. So I'm missing out on nutrients (hence the major weight loss), and not fully absorbing medicines, so I experience side effects and things I shouldn't be dealing with had my medicines been fully absorbed.

SO HOW'S THE CANCER THEN?

Well, there's some bad news on this subject as well. If you follow me on Snapchat (@mallorysauer), then you already know that I get weekly fluid infusions to stay hydrated. With an Ileostomy you have to drink twice as much water than normal, so these infusions help me stay hydrated. One day when I went in for my infusion, I told my nurse about some pain I was having. My back felt tight, it felt like my entire right side was severely bruised, and I was having trouble breathing. They sent me for an x-ray which showed a large amount of fluid built up around my right lung, completely compressing it, so I was only working with 1 and 1/4 lung capacity essentially.

Recent X-ray of my lung - all the white on the left side (my right lung) is fluid complressing my lung.

This X-ray resulted in a hospital stay where they drained 2 liters of fluid. Where did this fluid come from/why was it there, you ask? Well new melanomas were forming or my current tumors were resisting treatment, so my body produced this fluid as a way to fight these 'foreign objects'. Quick backstory - this is something I dealt with when I was in the process of diagnosing my cancer. Before they determined it was in fact melanoma, I had this fluid building up constantly - to the point where they placed a catheter in my back so I could drain the fluid at home. Once I started my cancer meds, the fluid dried right up and hasn't returned until now. So what this means is that I have new tumors forming, or my existing tumors are beginning to outsmart my meds and resisting that treatment.

While I was in the hospital for the fluid situation, they also sent me for a brain MRI to make sure the cancer hasn't spread to my brain (melanoma likes to form a cozy little home in the brain apparently). The bad news is, they found 4 tumors in my brain. They are small (talking centimeters) and we caught them early, which is the good news. You can see my brain scans below, I have circled the tumors in pink.

Knowing about these tumors explains a lot as to how I've been feeling lately. I was constantly nauseous, dizzy and light headed. Just random things that I wasn't used to feeling. Well it turns out, the tumors are to blame. Where they are located influenced some of the things I was experiencing..

WELL THAT'S TERRIFYING, HOW DO YOU TREAT THIS?

I'm adding a new med into the mix, called Keytruda. It's an immunotherapy drug and has great reviews and success rates. I'll continue my oral chemo, and then receive Keytruda infusions every three weeks. This will help treat both the lung and brain tumors. In addition to the Keytruda and oral chemo, I will undergo a procedure next week that zaps the tumors in my brain. It's called Gamma Knife - see how it works here. I'm a little nervous for that procedure - mainly because I'm extremely claustrophobic. Fingers and toes crossed they can give me something to knock me out! I literally feel queasy looking at the procedure images and thinking about being in that position. Oh well, could be worse right?

Another thing you may have noticed on my snapchat is that I was wearing an oxygen tube. I thought I'd try bringing them back in style! Kidding. Because my lung was so compressed with fluid, my oxygen level was dipping lower than it should be so I was put on oxygen to help me breathe and keep my levels where they need to be. Once the fluid stops producing (which will happen once all the meds kick in and do their job) I won't have to use the oxygen anymore.

I'M GETTING BORED, ARE YOU DONE YET?

Phew! That's everything. And I apologize for the lengthy post. Lot's of craziness and certainly lots of challenges, but I'm fighting through and keeping my head up. On the good days when i have energy I take advantage and get out and do whatever I can. On the bad days, I listen to my body and rest and give myself the rest I need. None of this is easy, but what doesn't kill you makes you stronger. I know I can get through it, especially when I'm surrounded by such great people supporting me.

I want to be clear, I don't share this because I'm looking for sympathy or special attention or for people to feel sorry for me. I've said that since day 1. Since I've put this story out there, and shown pictures of my ileostomy bag, and talk about these health issues in a way where I'm not ashamed - all of that has helped other people, and it also helps me deal with all this. I've had so many people reach out with kind words, and thanking me because now they have courage to embrace their situation. That was my whole goal and mission by sharing this story. I want to help others and encourage people in some way or another. I think I've accomplished that so far, and I just want to keep going. I'm not afraid to talk about any of this, or answer those weird questions, or even share pictures of my scans. I'll keep doing all of that if it helps someone get through something.

Please feel free to reach out to me with any questions, I'm happy to answer anything I can, or just be a pal to listen to you vent because I get it. I'm working on an 'end of the year' post, if you will, talking about the struggles I've faced, how I've overcome them and my plan for 2017 - stay tuned for that.

I love you all, thank you for reading and, as always, thank you for all your love and support.

Ileostomy Update #1 here

Crohn's Story here

Cancer Story here

Cancer FAQ here

April Health Update here

Go Fund Me here

September 09, 2016

Love Yourself First

September 09, 2016/ Mallory Sauer

Well hello there my friends. I come to you with a semi emotional post, but feel necessary for all my spoonie friends (and those who just want to know what life is like these days). I really wasn't trying to do two ostomy posts in a row, but I'm listening to my favorite John Mayer song and feeling all sorts of emotional, so here we go.

Let's get one thing out of the way - it SUCKS to be diagnosed with something bad, or anything for that matter (like a cold, because no one likes to be sick, right?). But diagnosed with something that really affects your daily life - that SUCKS. And I feel you because I got slapped with two crummy things - Cancer and Crohn's.

Crohn's SUCKS. Oh my gosh it SUCKS. I SO took my 8 years of remission for granted - so if you're in remission, do yourself a favor and CHERISH this time in your life. For my friends not there, my gosh I feel you. My remission ended when I got slapped with the C card (aka cancer, and unrelated to Crohn's). You can read in depth about my cancer struggle here, but long story short, cancer changed everything. In this post, you'll learn that I would have rather taken a hole in the head over an ostomy bag. I really am not exaggerating when I say that. I'm here to tell you I am eating my words SO HARD.

Here are some questions I had and have found the answers to so far:

Q: Will I be able to be social again after ostomy surgery?

A: Yes. Before my surgery (and I can only speak from my experience, but still) I never did anything. And by never did anything, I mean I the last time I was out and social was May 2015, It's now September 2016 and I've been more social post surgery than before. I'm now 5 weeks out of surgery and I've gone out, gone to events, and traveling next week. Quality of life is definitely better. And please, please PLEASE believe me when I say this, I never in a million years expected to be this ostomy positive. I had to be forced into this surgery BIG TIME by so many people and avoided it like the plague. I seriously CANNOT stress that enough.

Q: Will I ever feel normal?

A: Yes. It's going to take a minute, but I promise you'll feel normal after a while. I'm working on a post about clothes/getting dressed, etc. for those curious, FYI. Remember that every single person has a flaw. Seriously - NO ONE is perfect. I don't care how good they look on Instagram. The trick is accepting your new normal and owning it. Sometimes, the shadow/outline of my bag shows through my clothes. Ask me how much I care? The answer is I don't. Here's the attitude you need to accept (like yesterday), "I've got a bag, and it's saving my life. If you think it's weird then 'Bye Felicia', if not then let's party and be friends."

Q: Will anyone ever want to date me?

A: Yes. I went into this situation with a boyfriend, who has been nothing but understanding and supportive (and if he were anything but, I would have dropped him like a bad freaking habit). But if I had to jump into the dating pool now (and trust me, I've actually put a lot of thought on how to handle/approach this situation), I'd give him roughly 3 dates before laying the cards on the table (aka, "Hey, I have an ostomy bag, it's saving my life and it makes me awesome, if you find it weird then let's part ways now"). Here's the thing, an ostomy bag sucks and makes you stand out from the crowd, but you HAVE to own it. Seriously. The more you dwell, the more unhappy you'll make yourself. And yes, the situation is definitely not glamorous (especially in the bedroom), but I can say that the opposite sex finds confidence attractive no matter what (and if they seriously have an issue with your situation then BYE. Like seriously GOOD FREAKING BYE). Just own it, stay true to you, and know that the right person will accept you for EXACTLY who you are. Holy cow I sound cliche, but I mean it. And I say this with input from all the awesome men in my life (family, friends, etc.) and they all agree. Confidence = KEY.

This post came from a couple different emotions. I went to a football game last night and had SO much fun. But I was touching/checking my bag every 5 minutes. And that's SO annoying. And that sucks. I hate that I have to think about it so much when I'm out. Then I got home and had to take my handful of cancer pills. Now let's get one thing straight - I am SO FREAKING GRATEFUL that pills are saving my life. Seriously, I have stage 4 cancer and only have to take pills to treat it. It literally does't get better than that in my situation. But it's still hard to look at that handful each night. It's just a reminder of my reality. But a good reminder - things could be SO much worse. Yeah, this sucks, but it also proves that life is short and nothing should be taken for granted. Don't get me wrong, I totally have days where I'm like, "Bye world, I'm going to binge watch something on Netflix, ignore my phone and real life problems, hide in my bed and just be a slug." To be honest, I've done that more times than I'd like to admit. But everyone needs that. And if you need to do that, guess what, IT'S OK! Seriously. Never feel bad about taking some much needed 'you' time (unless you're like on a 20 day bender, then let's talk). Moral of the story, you have to take care of yourself, whatever that may be.

Enjoy the happy moments, embrace the sad, and accept every single second of your life. The highs, the lows and everything in-between make us who we are. You may not look like Gigi Hadid, but you probably have a much cooler story (sorry, Gig, no offense). Think about what's valuable and relish on that.

I love you all, I'm here for whatever you need (except for a million dollars, because I don't have that ;), and we're all in this life battle together.