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. 

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: 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