When Life Gives You Lemons: Measured in Months

Hi friends. I've been pretty absent lately and this post is actually to explain why. Typically with health update posts, I have an idea of what I'm going to say and it's pretty easy to write it all out, but with this one I'm kind of stumped.

The last few weeks have been a whirlwind. I honestly don't even know where to begin. I don't want to get into a great deal of detail, but long story short, I had a really scary situation happen due to a mixup with one of my medicines. It was terrifying, warranted a panicked trip to the ER, and ended with a week long stay at the hospital. While in the hospital, the medicine situation got sorted out and I had both a CT scan and MRI on my brain done.

Good news, the tumors that are in my brain have not grown and no new tumors have developed. Bad news part 1, the melanoma in my lungs has come back and spread, meaning my body has started resisting the treatments I'm currently on. We're trying a new dosing approach to see if we can get my body to start responding again - fingers crossed that works. Unfortunately, the options for treating metastatic melanoma are extremely limited, and I'm already on the major treatments to fight this type of cancer. So, we flew out to UCLA and met with their melanoma specialist (he's world renowned and has access to studies and trials, etc. that my doctor here doesn't have full access to) and got a second opinion. There's one study that might be an option, but we won't know for sure yet for a little while longer. Also, this is just a study so there's no guarantee it would even work if I am eligible to participate. Bad news part 2, if I can't do the UCLA trial and my body continues to resist the treatment I'm currently on, my lifespan becomes measured in months and there's a chance I won't make it to the end of the year. I wish I could say that's just me being dramatic, but unfortunately those are words straight from two different doctor's mouths. 

Obviously this is extremely hard news to swallow, and honestly I think I'm still in shock and denial.  It's a weird thing to be told you only have months to live. I mean I'm still in shock and denial that I even have cancer in the first place so adding that I might only have months left to live just makes my head spin. Who knows, maybe I'll get lucky and my odds will change and I'll live to be 121. Here's hoping, right?

I get asked how I'm doing all the time and it honestly depends on the day. Some days are emotionally hard, others are physically hard. I'm definitely having a hard time physically - I guess that's bad news part 3. I've lost so much weight and can't gain any back to save my life. As a result, I feel weak and have little energy. The dumbest things are hard... like bending over to pick something up, or walk a block with a heavy purse. I'm just in a lot of pain all the time and never have energy. It sucks. I've been getting a lot of comments on Instagram from people saying I'm "too skinny" and shouldn't promote being so thin. To that I say, don't judge a book by its cover and be thankful for your good health :)

This whole experience - from diagnosis day to the news I just received, has been so eye opening. Life is short and it's fragile and it's definitely not guaranteed. People will show their true colors, in good ways and bad. The biggest and most important thing that I've felt is love and support. I can't even put into words how wonderful and amazing people have been. I could write an entire post gushing about how appreciative I am for all the love and support I've received and how amazing people are, but instead I'll keep it simple and say thank you. I've never felt so loved and supported in my entire life - and not just by friends and family members, but by complete strangers even. It's an incredible feeling. 

I wish this post were more positive and filled with better news, but cancer is a jerk and just doesn't work that way. Life is precious - don't ever take it for granted. 

When Life Gives You Lemons: Health Update 2

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. 

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

Love Yourself First

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.

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 Are we friends on FacebookInstagramTwitterBloglovinPinterest and Snapchat (@mallorysauer)? Let's connect! 

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Crohn's Story here

Initial Cancer post here 

Cancer FAQ here

Last health update here

Go Fund Me here

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