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: Infusion Center Diaries

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. 

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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Crohn's Story here

Initial Cancer post here 

Cancer FAQ here

Last health update here

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