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. 

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

When Life Gives You Lemons: Ileostomy Update #1

As promised, I wanted to do a follow up post on life with my new ileostomy bag. The response to my first picture (originally posted on Instagram) showing this lovely new accessory of mine was mind blowing. I read every single comment and message I received after posting, and I cannot put into words how great that support felt. I've received a lot of questions about this bad boy so I've broken this down into sections. And I also lied to you before, this is a another lengthy post, another semester's worth of reading if you will. But I have a lot to say and I want to cover everything I've been asked, so here we go.

How's my mental state? How did I feel before and how do I feel now?

This one is my favorite (and the longest). I touched on this in my last post, but the idea of this surgery was the end of the world. I said it before and I'll say it again, getting this surgery was worse than having cancer. I am WELL aware of how absolutely crazy that sounds, but it's how I felt. I mean let's break this down to the basics - I have a bag hanging off my stomach that fills up with you know what (and if you don't know what, it's digested food). You're welcome for just putting that out there, but that's the reality. I'm human and I care about what I look like. I didn't want to deal with it, I was scared about what people might think and didn't want to be looked at differently. The concept in general really scared and upset me. The day of my surgery, I was mad that dooms day finally arrived, but I was also oddly calm. Surgery doesn't scare me, and I was also just in a major state of denial about what was about to happen to me. It wasn't until the surgeon came in to mark where my lovely new bag would sit that I absolutely LOST IT. I mean, there have been a lot of tears this last year and a half of health hell, but this was serious can't catch your breath crying. We're talking hysterical tears, to the point where my surgeon more or less said he can't ethically operate on someone this upset and against the surgery. They gave me some magical IV drug to calm me down and in I went.

The first week with Gertrude (oh, I named the bag by the way. Why not right?) sucked. I was in SO much pain and seriously upset and depressed. I couldn't look at the bag at first, and then really lost it when I had to change the bag for the first time. Sorry to be graphic here, but looking down and seeing a little stump, if you will, of your intestine sticking out of your stomach is seriously weird. I still have trouble looking at it honestly. But it is what it is. 

I gave myself the first week at home to wallow and be sad and cry. You go through the grieving process with something like this. So those first few days were set aside for tears and sadness and anger. Then those days were up and it was time to pull up my bootstraps, as my mother would say, and get it together. It's so true though - what good would wallowing and crying do? I gave myself a pep talk and said, "You're stuck with this for now, it's saving your life, time to accept it and move forward." So I did. Yes, it freaking SUCKS and I hate this dumb thing so much and it makes me different, but so what. I forced myself to accept it. The people that love me don't care, and the people that care don't love me. Posting a photo on Instagram showing my bag so soon after surgery might seem crazy to some people, but it was my way of making myself accept it. And I'm SO glad I posted that photo. Like I said in that photo caption, we all have things that make us different. The sooner we accept and embrace what makes us different, the better off we'll all be. I get asked all the time how I'm so positive about it so soon, and that's kind of tough to answer, but honestly I just made myself be that way. I didn't feel like I had a choice to be anything but positive, and the sooner I started the better off I'd be. No one enjoys miserable people, and being miserable is miserable. So why be miserable, ya know?

Long story short for this section; I was in a much darker place before the surgery than I am now. Maybe I'm weird and maybe it's unhealthy to just force yourself to be ok with something so major, but so far it's working. 

What's the recovery been like? What's life like now?

I was in the hospital for three days recovering after surgery, but I honestly can't tell you a single detail about that stay (thank you pain meds). I don't remember a thing. It's like a bad three day black out, but honestly I'm fine with that. The days immediately following any surgery are never pretty. After my hospital stay, I spent a week at my parents letting them take extra good care of me (thanks mom & dad!). It was also nice to have the company and people around for that first week of transitioning. Going into this, I was expecting to be couch ridden and miserable for almost a month, but it really was only that first week that was really rough. Since then, I'm back at my apartment slowly getting back into my routine.

It's been three weeks since my surgery, and I've already gone to a few events, had dinner with friends and been social (as opposed to the hermit crab I was before). I'm still in pain, and sometimes the pain is pretty darn awful, but that's to be expected after major surgery. I'm doing a lot of resting still and being careful not to push it, but I've been able to do more in the last two weeks than I was months before this surgery. Don't tell my surgeon I said this, but it turns out this bag is not the end of the world like I thought it would be. I hate Gertrude, don't get me wrong here, but I can't tell you how nice it feels to grab a bite with friends and actually enjoy being there. Before I either didn't go out, or was miserable and constantly thinking about how miserable I was. That's no way to live. And side note here, I was considering continuing that terrible lonely life to avoid this surgery, that's how against this I was. I'm SO glad I didn't make that choice though. The other day I was dancing around my apartment cleaning and listening to music. It's easily been a year and a half since I felt good enough to do that. I went to brunch last weekend. Last time I went to brunch there was snow on the ground. These little occurrences are major victories to me. 

To anyone that has to have this surgery and is dreading it as much as I was - I get it. Oh do I get it. Every negative thought and end of the world scenario you're going through, I was there. Before I had the surgery I had plenty of people tell me it's not that bad and I'll feel better and it'll all be worth it. I thought I was different and there was no way in hell this bag would ever be worth it, etc. My advice to those of you in that boat - it really isn't the end of the world and life will go on after surgery. And I NEVER in a million years thought those words would come out of my mouth. I can't stress that enough. It's not awesome or ideal, but it's not the end of the world. I get it, but I also didn't believe that until I went through this and was on the other side. 

So do you feel better now? What's next?

I'm slowly starting to feel better. My Crohn's hasn't just gone away and is magically better because of this surgery. I still have active inflammation, but this surgery allows the inflamed part of my colon to have a break and heal. I started a new medicine, Cimzia, that is supposed to help put my Crohn's back into remission. I'm still in the recovery/healing stage, so there's still pain from time to time, but nothing compared to what I was dealing with before. The plan now is to give Cimzia some time to start working and the inflamed part of my colon time to rest. I'll do a follow up/status update with the docs in a few months and go from there. 

Ok, Mallory, wrap it up.

I've been dealt a crummy hand. There's no denying that dealing with cancer and Crohn's (not to mention serious cases of both) seriously sucks. However, I have the power to decide how I deal with these cards and how I move forward. I want to be a resource, a voice, an inspiration - anything I can be for people dealing with similar situations, or anything tough for that matter. To my ostomates - let's embrace these dumb bags of ours and not let them get the best of us. We are still the amazing people we were before the bag, now we just have an extra accessory and constant reminder of how STRONG we are. Same goes to my fellow spoonies, our diseases don't define us and you're all amazing. To my friends just having a bad day, ask yourself if what's upsetting you will matter in 5 hours or 5 days. If the answer is no, move on! Life is far too short to get hung up on the little things. 

I will do another Ileostomy update post again soon and address new questions, how I've adjusted to getting dressed with this thing (short answer, I bought this) and what life is like a month+ after surgery. Anything you want to know, send it my way!

I love you all! Thank you for following my story and supporting me along the way.

 Are we friends on Facebook, Instagram, Twitter, Bloglovin, Pinterest and Snapchat (@mallorysauer)? Let's connect! 

Crohn's Story here

Initial Cancer post here 

Cancer FAQ here

Last health update here

Go Fund Me here

When Life Gives You Lemons: The Crohn's Story

Photo by Brandon Hill

I reached out to my Facebook friends about a dilemma I was facing: do I start a new blog to talk strictly about health stuff, or do I keep posting updates periodically on Sweet & Sauer? Majority rule - keep the posts here. I don't ever want to oversaturate Sweet & Sauer with health posts, as I know some people only follow for the fashion related pieces. However, and thanks to my friends for pointing this out, it gives a glimpse into my life and really helps me connect to my readers.

So here we go, the next installment of 'When Life Gives You Lemons'. I'll preface by saying this is on the lengthy side and even has a rant portion. Consider yourself warned. 

I've mentioned that I have Crohn's disease in previous posts, however I haven't talked about it much because it feels like a taboo subject. I mean let's be honest, it deals with your digestive system and quite frankly, it's gross. It should be talked about though, because so many people are affected by Crohn's or some other type of digestive problem, and honestly, we're all human, right?

 Let me give you a little background on my Crohn's to bring you up to speed. I was diagnosed at 18 and it turned my world upside down. I was a freshman in college and just made my first professional dance team. When I was diagnosed I was told to leave college, quit the dance team, and move home so I could get better. I hope it's no surprise that I gave that idea the middle finger and kept plugging along. Long story short, I was put on a magical IV drug infusion that saved my life and put me into remission for 9 years. Up until I was diagnosed with cancer, I was saying, "What Crohn's disease?" I ate and drank whatever I wanted and had zero problems. 

The second I was slapped with the "You have cancer" label, I was off that magical drug that made life so easy and in came the problems. All the symptoms showed up (think debilitating stomach aches and the worst digestion problems you can imagine, then times by 100). And they won't go away. And I am SO mad about it. I mentioned this in my last post, but treating Cancer and treating Crohn's are polar opposite approaches. With Crohn's, you want to suppress the immune system. With Cancer, you want to rev it up. I have to find that magical middle ground where I'm treating both without unleashing either dragon. Good luck, doc's! 

It's been a nightmare. They took me off that magical drug (ok fine, it's called Remicade) because it suppresses your immune system and would have potentially made the cancer worse, and with that came all the awful symptoms of Crohn's disease. I've been battling them since October. We've tried all possible drug options and nothing has worked to put my Crohn's into remission. So what does that mean? The one thing I NEVER wanted to happen since the day I was diagnosed is now happening to me. I have to have surgery, aka the end of the world as I possibly know it. Cancer doesn't scare me, but an ileostomy surgery seems like the end for me. I know, insert eye roll, what-the-heck-how-can-you-say-that expression, here. I'll get back to you when I can actually explain the reasoning behind my feelings. **Side note: there are different type of 'ostomy' surgeries (colostomy, ileostomy, etc.), they differ in placement and disease location.

My surgery is this week and I can't tell you how many tears I've shed. It's the last thing I ever wanted to happen and it will be a big lifestyle adjustment that I'm not exactly looking forward to. Before I get the, "Oh, but I know someone who has an ostomy and they're doing great, its really not that bad!" comments, let me remind you that everyone's Crohn's experience is different, and everyone processes/handles things differently (not to mention I'm still in the mad/sad/angry/what in the actual F stage of the grieving process). This is something I knew could happen (not like the cancer where I was just invincible and it just happened) and I did everything in my power to avoid, yet here I am, days away from life changing surgery with no other possible alternatives. 

Enter rant portion of this post. I can't tell you how frustrating this flare has been. All I've wanted is to get out and do things - go out and party, work, workout, eat a salad, you know, normal things, but I can't because of the symptoms I deal with on a daily basis. Do you know how hard it is to sit at home by yourself every weekend while everyone you know is out having fun and you're watching Sex And The City for the 21st time? It's frustrating to have your mind there but your body won't let you do the things you want. Sometimes I don't even have enough energy to work on the computer. I have to be SO careful with what I eat. Every single food decision determines my next 24 hours. My energy level is so low. I have to be strategic about what I allow myself to do in a day. I certainly can't pack 25 activities into a 12+ hour day like I used to. I'm only allotted so much energy and I have to be careful on how I use it. If you're in a reading mood, I love this Spoon Theory and totally relate to the concept. Other people can just do things, but when you're sick you have to plan and be strategic. You have to think, you can't just 'do' anymore. Bottom line, it's so frustrating. If you know me well then you can attest to this, I HATE being limited.

Now for the positives. I know my quality of life will be better after surgery. I will have more energy, my food choices won't be as limited (hello salad and pizza and Mexican food!), I'll feel better in general, and be able to do all the things I've been missing out on for so long. My doctors, friends of friends, support groups and so on all say that people feel worlds better after this surgery, so there's that. I look forward to the days after recovery where I will feel like myself again. FINALLY. After almost a year of feeling like absolute blah, I can't wait to feel energetic and happy all the time, not just for a few hours where I'm feeling decent at best like I'm now used to. This is going to be an adjustment though. I'll have this bag attached to my stomach (should I name it for fun?) and that's going to be hard to become accustomed to, both emotionally and physically. I know things could be a lot worse though, and I'm thankful that's not the case. 

I'm forcing myself to share this story and talk about my ileostomy for a few reasons. 1. I can't let this define me or bring me down. Adjusting is going to be freaking hard and I'm going to have some really tough days, but I can't let the bag win. By sharing this with all of you, I'm beating the bag and staying in control of how it makes me feel (slash, no one will read my blog anymore if I just complain about this dumb thing, right?) 2. I want to share my experience with others for both their sake and mine. I find it helpful to hear how people deal with things, or tricks they've figured out when it comes to anything (aka the world of blogging). By sharing my experience, I'm hoping to help others through their ostomy experience, and also cope with mine. Let's figure out how the heck to dress with an ostomy bag together without everyone seeing what we have going on, right? 

I'm almost done I promise, and if you're still reading even, I thank you. I guess my point is this, it's not all rainbows and butterflies and "gee gosh golly this is tough but I can do it" over here. I mean yes I'm keeping a positive attitude and soaking up every single minute of good energy my body gives me. But it's hard. And this disease sucks. And I'm SO frustrated. I wanted to share that realness because that's reality sometimes. And I also want to talk about this disease a little more to break those taboo boundaries, and challenge myself to be honest about it and what I'm really dealing with. It is scary though. Putting this out there and opening myself up like this can be terrifying. I don't want people to think of me differently or judge. This stuff definitely isn't pretty.

It's so easy to make assumptions about people based on what we see on social media, or in person even. Someone can look perfectly fine, yet have some serious stuff going on. Would you have ever guessed I'm battling both Crohn's and Cancer by looking at me? Just because you can't see it, doesn't mean it's not there. Health issues are so real, and I envy those of you who don't have to deal with them. Continue to take care of yourself and be kind to everyone because you never know what someone is going through.

I'm so incredibly grateful for all the love and support I continue to receive. Before writing this post, I went back and read all the comments from my initial cancer post and they gave me the boost of strength and courage I needed. I want this surgery like I want black to go out of style (now THAT would be the end of the world as I know it), but I know I will get through it because I have so many people believing in me. And let's be honest, now that I've put all this out there it would be REAL embarrassing, and quite frankly lame, to let the health crap win. Time to put my money where my mouth is, right?

Have questions? Send them my way! Nothing is off limits here. I will continue to share updates as things progress, and maybe one day I'll even have the guts to share pictures. I promise not every post will be a college semester's worth of reading, and I assure you I will keep on fighting :)

Much love.

Initial Cancer post here 

Cancer FAQ here

Last health update here

Go Fund Me here