What I Wish I Knew About Getting Cancer

Friday, June 20, 2014

There is so much to catch up on, I once again don't even know where to start. I have about ten different posts that I started and just never finished throughout my treatment. So I figured that I would start with those!

Before we go there though, I have to say, HOLY CRAP I'M DONE!!! I officially finished chemo on May 28th and it was probably the second most emotional day yet. I have so much more that I want to write about, but for now, I'll just say that it felt so good, like unexplainable kind of good, to cry those happy tears. Even throughout all of this, we have had a ton of fun that I can't wait to post about to, and we have some big changes coming up as well. We sold our home and bought a new one pretty much within the same two weeks of finishing treatment! I'm holding my breath until we get through settlement, which is one week from today!

One of the things I thought about a lot while going through surgery and treatment was what I would tell someone that was just about to go through this. That was a hard list to come up with. There's nothing in this world that can prepare you for hearing those words, "You have cancer". Absolutely nothing. Your mind goes right to the worst. The first few hours, days and weeks are a complete blur. Keeping your head above water during those first few weeks and months, seems to be the hardest thing out of it all. At least it was for me, so far. It's hard not to become paralyzed by those first few weeks. One day, you wake up and realize though, that life goes on. Life doesn't stop. Maybe yours changes, and maybe yours slows down and looks different. But it sure doesn't stop. At first, that's a hard pill to swallow. It was for me.

Sometimes it felt like becoming a parent for the first time, like, when you swear that the doctors forgot to give you the "How To Be A Parent" manual. There has to be one right?! How are you supposed to know what to do? The Internet just scares the living crap out of you, so you can't trust that. Surely there has to be a manual.

Surprise, surprise. There isn't.

When I think back on things that I wish I knew about getting cancer from day one, it seems like the list is never ending. There's nothing that will take that shock, that sting, that fear, away when you get your diagnosis. But it sure wouldn't hurt to have that manual. Here's what I would put in mine. 

This Sucks: There are probably a lot of better words to describe it, but what it comes down to is that it really sucks. And that's okay that you feel that way. It sucks that you can't take back what just happened. It sucks that no one can promise you anything. It sucks that it's happening to you. People are going to tell you immediately that everything is going to be okay. They don't know that, and you want to tell them that. Sometimes its to help them cope with hearing the news. But sometimes you just want to hear about how bad this sucks and it's okay to freak out about it.

You Might Not Ever Know Why: It gets very easy early on to fixate on how the heck this all happened. What in the world did you do that was wrong? How did you get it? How long has it been there? Depending on your situation, you may never get answers to those questions, and guess what, that sucks too. You will drive yourself crazy asking all these questions, and in the end, it doesn't really matter because it won't change anything, other then making it hard for you to stay positive, and that, is what ultimately helps you through it all. But trying to let go of all of the "Why's" is a hard thing to do. If you can do it though, it will make a world of difference.

The Worst Part Is Not Knowing The Plan: Do I need surgery? Do I need chemo? Do I need radiation? Is my hair going to fall out? What's next and why is it taking so long? The first couple of days and weeks are completely overwhelming. Appointments after appointments. Phone calls after phone calls. How do you tell your family? Who do you tell? Everyone has questions, and you don't have any answers, at least not yet. Little by little your plan will start to fall into place. But it can take a while. Some days you might get a couple pieces of the puzzle, but there might be some missing for months. Focus on the pieces that you have, get through those obstacles first, then concentrate on filling in the rest.
Find Your Dream Team and Know Who To Talk To: For me, after seeing the radiologist and being diagnosed, it was right to the surgeons. I was meeting with cancer surgeons and plastic surgeons before meeting an oncologist. Based on the facts and my situation, I was okay with that. I trusted every single one of my doctors. I was at one of the best hospitals in the country. I didn't get any second opinions because I felt that I didn't need to. But maybe that's not right for others. I felt like I was handed my dream team right from the get-go, but if you're not, make sure you go out and find it. There will be a pretty big team too. So make sure you know who to ask about what. I was very confused about it all, but I asked really stupid questions, just to understand who I needed to go to for what, who made the decisions, how they all worked together. 

 You're Going To Feel Guilty. I Know. Crazy: This one surprised me. Like big time. I'm the one that got cancer, so why do I feel guilty? I still have no idea why, but I did, and still do. I remember apologizing to Wes over and over in the tiny little room after being diagnosed. I was sorry that I got cancer. I was sorry that I was about to put him through everything that was about to happen. I felt guilty when I couldn't see the kids at night after chemo. I felt guilty for having a bad day after surgery, because when I had a bad day, my family had a bad day. I feel guilty that Emma and Jack watched more TV just so we could get through some days. I felt guilty that I can't do as much as I used to. I felt guilty if I didn't do enough for Christmas, or a Birthday Party. I felt guilty for all the pain I was causing both our families. Everyone else understands, but sometimes it's hard for you to. Life doesn't stop when you get cancer. But it sure makes you feel guilty when it's your cancer that changes things in life, or prevents your kids from going to a birthday party, or swim class.
Living Under A Microscope Is Hard: There are going to be a lot of people taking care of you, and you need all the help you can get. But it can make you feel like you are living under a microscope. It can make you feel like every move you make, even the little ones, is analyzed, and then analyzed again, then it's put on the front page of the family newspaper for everyone to see. Like, if you are too tired to shower for a day, then you take a shower the next day, its a big deal. If you nap everyday, then one day you feel like you don't need to nap, its a big deal. If you cough, it somehow has to be linked to your cancer. If you are tired one day, its because you have cancer. Everyone is going to tell you its okay to have bad days, but when you do, the news seems to spread like a wildfire. So then you feel like it's not okay to have bad days. I don't have any answers on how to deal with it, and it's not that anyone is doing anything wrong, it's just one of those things that you don't expect or see coming.
Let People Help You: Once the news starts to spread, you will probably be overwhelmed by your family and friends reaching out. Some people will have been through it and know exactly how to help. Some people won't know how to help, but they will guess. Some people will do things to help themselves feel better (and that's okay too). Some people will just ask you what help you need. All of those things are good. Don't be afraid to tell them exactly what you need help with. This was really hard for me. I had a really hard time getting to the point where I could tell my own mom, that the help I needed was for her to clean the bathrooms in our house. It was hard to admit that I couldn't do it. It was hard to admit that I couldn't handle it all. Everyone will probably tell you how amazed at how strong you are, so when you feel like you need help, it can feel like you aren't being that strong person everyone says you are. Let them help you. However you need it. It will seem easier to hide sometimes, and sometimes you might need to do that too. But when you need help, don't be afraid to ask for it.  Even for just random daily stuff. 

Lay Off The Google Searches - Most of the Time: I am a firm believer that the Internet can be your worst enemy. It happens all the time. You get a pimple on your arm and you google it and the next thing you know you have self diagnosed yourself with cancer. Multiple that by a thousand, and that's what happens when you Google about having cancer. I made a decision very early on, and it was probably one of the best decisions that I made, was to truly limit my Internet research. I didn't research how long it would take to lose my hair. I didn't research percentages, survival rates, surgery, chemo side effects, none of that stuff. Every singe person is different. Some people going through chemo is a walk in the park, some people have a much harder time with it. So you never know what your experience will be like, so don't spend time freaking yourself out. The only thing I would Google or research was test results that I didn't understand. After getting my full pathology report, I wanted to know more about the data. I'm an engineer. I like data. This made me feel better. This was specific to me. This helped me prepare for doctors appointments, I had a list of questions to help me understand what I was facing.
Find Your Meaning: This one is tricky because very early on, you are going to wonder what you did wrong to deserve this. I sure did. It might even take you a really long time to get through that, it took me months. But once I found my meaning, and for lack of better words, made peace with my diagnosis, it wasn't such a struggle to stay positive. I'm not going to lie. On the bad days, you are going to want to say "F-Off" to the meaning. When you are laying in bed trying not to move because you are afraid of barfing, the meaning isn't going to help. But just know that there is a lesson in everything. When you can, and when you are ready, look for your lesson or your meaning is. Everyone is different. My meaning might be completely different then yours. Once I found mine, I felt stronger. I stopped fighting with the "Why's", which helped me dedicate more energy to the positive. 

Don't Forget to Laugh: Again, there are going to be a lot of days where you wonder if you ever even smiled that day, let alone laughed. But as you get through those first awful days and weeks, remind yourself to laugh. Remind yourself that its okay to still have fun. You can stare cancer right in the eye, and still have fun. 

Change Your Expectations: Okay this one, I really stink at. But I'm learning and doing better every day with this one. During my first appointment with my oncologist, where we found out that chemo was the next step in my plan, we were talking about work and just how chemo was going to affect the things I do. I specifically remember him saying "You won't be able to do everything you are doing now." That statement struck me harder then I thought. I didn't like that. I didn't like that cancer was going to affect what I wanted to do. I didn't like asking for help. I didn't like thinking that I couldn't handle everything. I didn't like having to change my expectations because of cancer. I was determined to be the exception to the case. At least until my first AC treatment knocked me down and out for a week. It took me a long time to be okay with the fact that it was going to be a rough ride and despite me trying to live like I normally did, I couldn't. I think some of that determination was good, it got me through 12 weeks of Taxol, working full time. But it also got me in trouble sometimes. My last AC treatment was over, and I was thrilled. I did too much, and paid for it and barely avoided an ER visit. Barely. My expectations is what made me struggle to ask for help and why it took so long. Someone once told me to be open to a different version of a happy ending. It made the world of difference. 
Find Your Inspiration: Who knows where your inspiration will come from. It might be some of the cheesy quotes or pictures online. It might be from someone that you know that has been through it. It might be from inside you. It doesn't matter where it comes from, it just matters that you find your own inspiration. For me, it was my husband, my Emma Kathryn and my Jackson Douglas. They were my inspiration. They were what got me out of bed on the days where I just wanted to bury my head under my pillow. They are the ones that made me laugh, when I wanted to cry. They are the ones that I stayed positive for. They are the ones that gave me strength and hope. They are the ones that kept my mind away from the really bad stuff. They are the ones that made certain decisions for. They are the ones that made me okay with going through chemo. I would have taken gasoline if it meant I would be around for the long haul. A single mastectomy wasn't even an option in my mind, because of these three. Not doing chemo wasn't even an option in my mind, because of these three.   

It Will End. Eventually: It's not going to seem like it at first, but all of this will end, eventually. It will always be a part of you, it will always be something in the back of your mind, but it won't always seem to define you like it does in the beginning. It won't always be the first thing you think about when you wake up in the morning. The tunnel seems very long, and some days you can't even see the light at the end of it. But trust me, it's there. You will come out of that tunnel stronger, wiser, and you certainly won't take life for granted ever again. One of my absolutely amazing nurses, the one that led us through the Red Devil, once told me that one day, she realized that it was almost noon, and she hadn't thought about having cancer yet that day. That's how she knew she had started to truly live her life again. I can't wait for that day. I'm on my way.

1 comment :

  1. Incredibly fantastic Laura. No words to express how I felt reading this. So very proud of you and your family. Things can only go up from here.

    Love GiGi


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