About a year ago I wrote a blog called “The Practical Guide to Beating Cancer.” I wrote this as a response to the many questions I received on how I managed to deal with a life-threatening disease and stay joyful though it all. It’s been a year since I wrote that and although I still agree 100% with the advice I gave, I decided that it was time for a part two. So, without further adieu, part two to “The Practical, Non-Spiritual Guide to Beating Cancer.”
1. Guarding Emotions, Empowering Your Mind
I first got diagnosed with cancer in 2010 and in that first year, I avoided the internet as much as possible. I didn’t want to research, I didn’t want to read about it & I certainly didn’t want to see the statistics. Doing so was just asking for an emotional meltdown and a journey down “what if” lane. However, as my journey beating melanoma continues, I’ve become a bit more immune to the shock of it all. Don’t get me wrong, I don’t peruse the net looking for random melanoma stories. However, I have realized that if I can control my emotions, I can actually become very empowered by reading about the latest treatments and encouraging stories of others overcoming this awful disease.
One way I’m able to do this is by asking others that I really trust to do some preliminary research on my behalf. If you have a close friend or professional who is internet savvy, have them do a little looking for you. Set some parameters. Tell them you are looking for sites that are trustworthy, medically-supported, and most important, positive & full of hope. In the midst of a internet garbage land, there actually are some helpful sites out there. Just be careful. Guard your heart & know all information is not power.
2. Be Your Own Advocate
I hate to say it but I really did use to think doctors knew it all. Reality check: they don’t. I mean no disrespect to medical professionals, in fact, it’s just the opposite. In reality, there’s just not enough hours in the day to know everything that’s happening in the world fighting cancer. My oncologist is one of the best in the country but good grief, he is busy. If he could go everywhere & know everyone, I’m sure he would…but it’s just impossible. Fortunately, there’s no rule saying that I am limited to one physician.
Last summer I went through a four-month treatment that had positive & what we had hoped were long-lasting results. Unfortunately, it was only about two months after treatment ended that I found another lump…and then another. Scans revealed that the cancer had spread. As frustrating as it was, I was still hopeful that I would leave my upcoming oncology appointment confident in a treatment plan and ready to embark on whatever it might look like. Instead, what happened was that I left feeling alone, as if no one really knew what to do and I was left to fend for myself. The reality of melanoma is that there is no one, set treatment plan. With many [most] other cancers, the treatment plan is pretty straightforward: chemo + radiation & maybe something else in the mix. With melanoma, treatment options are much more complicated. Five years ago, stage 4 patients had no treatment options. Now, we have quite a few. However, they are all relatively new and no doctor can have a set plan that is an obvious answer. They can give information but ultimately, the decision is left to us. To me. At first the gravity of making these decisions left me somewhat paralyzed but I soon abandoned the temptation to become a victim and decided to become my own advocate.
3. Don’t Accept “No”
About a day or so after I left that doctor’s visit, I decided to take action. I called and made appointments with the best oncologists specializing in melanoma in the South. I wanted to talk to the best doctors & get them on my team. Even if I didn’t become one of their regular patients, once you have that initial visit, they are able to weigh in on your treatment plan and offer their own opinion. As I traveled around, I realized that each individual doctor has their own special interest which in turn, influences the way they practice. For example, one oncologist I visited had an incredible bedside manner and really focused on the patient quality of life. He was conservative in his use of new treatments and seemed to encourage the older, more trusted options instead of trying something new. He made me feel like a person instead of a patient, which is rare in the cancer world. The next week I visited this young guy whose patient interaction was pretty awful. He threw out numbers (which I hate) but he said them in the context of how much hope there is with new treatments being researched. When talking about patients, he seemed somewhat unemotional…but when talking about new treatments being tested, his eyes lit up like a kid tasting chocolate for the first time. He was a science guy. And while he wasn’t great with patients (actually, he was terrible), he was great when it came to being a risk taker and convincing the big drug companies that his facility was best for their new clinical trials (I’ll post more on clinical trials later.) Consequently, he was one of few in the country who had access to the newest immunotherapy drug that could be potentially groundbreaking in beating deadly cancers like melanoma. After meeting me & hearing my story, he put me at the top of the list to get this treatment. Unfortunately, I was disqualified later because a previous treatment I had taken but that was completely out of his control. Regardless, now he’s on my team & I know that if he sees an opportunity to get me in, he’ll do it. This never would have happened had I not taken the initiative and made that appointment.
Keep in mind, there is fine line when it comes to consuming research & medical knowledge. We are not doctors (unless you are and then, please take all I write knowing I’m limited in knowledge). However, we are like doctors in the fact that we don’t know what we don’t know. There is no one, overarching organization that disseminates information on the latest treatments for disease. There are groups that try and doctors that know each other will & do communicate about what their own practices are doing but still, we must not simply hand ourselves over to one person thinking they know everything and have everything they need in order to fight the disease in the best possible way. If you have a good one (like I do), they’ll direct you on who else you should talk to and what other resources are available to complement what they’re already prescribing. However, if a doctor ever says “no” or “there are no options,” just make sure you’re doing your homework to ensure that there really are no other options. No one should be as motivated to fight for your life more than you.
4. Empower Your Body
I am hesitant to even broach the subject but because it’s one of the first questions people ask when they find out that I am beating melanoma. Yes, I’ve tried special diets. And no, I don’t think one special diet will cure cancer. I’ve been told to try everything from guzzling Welch’s grape juice to eating all protein to juicing only. I consider myself extremely health conscious. In fact, I was a vegetarian for almost ten years before I got diagnosed and only started eating organic meat when I was pregnant (my “morning” sickness last 24 hours a day for 9 months so I ate anything I didn’t throw up) so I obviously don’t think cutting out meat is key. However, no one can deny the importance of nutrition and overall health when beating disease.
When it comes to food, my general philosophy is simple. Every bite of food is either empowering or harming your body. If you’re not sure which is happening, avoid it. If you want to eat something bad for you, just make sure it’s worth it. If I want a piece of chocolate cake, do I eat it? Well, it depends. If I make good choices on a regular basis and I’m in a place of both physical and emotional strength, then sure, I’ll have a small piece. However, it is extremely important that my food choices are not a result of my emotional state but of a desire to be healthy, fuel my body, and every once in awhile, pure enjoyment (have you had that Talenti gelato?!?). As long as my decision-making process is my focus and food is not, I stay healthy and am creating the best possible environment for God to continue to work, as well as any traditional medical treatments.
5. Know When to Rest
I wish I could say I have mastered this one but I have not. Most of the time, true rest comes as a result of something happening. Prime example: for the past two weeks, I have had swollen feet. My lymphatic system is weak because of my eight surgeries on my leg and on top of that, one of the side effects of my medicine affects my joints. It’s not rocket science to know what sparks the issue: lack of rest. What’s the cure? Rest. I’m supposed to sit with my feet above my heart as much as possible but seriously, who has time for that? I’ve got a toddler to chase around, a non-profit organization to run, a household to manage, friendships to maintain, etc;. Sitting down (especially with my feet up) just isn’t going to happen for more than 15 minutes here or there.
What I constantly have to remind myself is is that my body is my vehicle to actually do everything that I want to do. Literally. Just last month we had to buy new tires for my car and my husband reminded me 2 or 3 times that week to get an alignment. Naturally, I could care less about getting my car aligned. Don’t know what that even means, really. Knowing this, my husband told me sternly, “I need you to make this important to you.” Oddly enough, that was all it took. I realized in that moment that just because something wasn’t naturally important to me didn’t mean that it couldn’t become important to me through my own will & decisions. The next day was Monday and like most Mondays, it was busy. However, I cancelled my morning plans and took my car to get an alignment…not because I wanted to but because I was choosing to make this a priority.
If I really want to be a great mother, a great wife, a great friend, & a great leader, I have to rest, whatever that looks like. Right now, it looks like me putting my feet up (literally). Other times it might look like getting some alone time or a evening out with my girlfriends. Resting isn’t selfish…it’s understanding that in order to accomplish everything we desire, we must care for ourselves the way we would care for the one we love the most. Rested people are happier, more productive, and all-around, better.
I hate, hate, hate cancer. I hate everything about it. I hate the way it kills, steals, and destroys life. However, every day I remind myself that my choices are more powerful than this disease and 99% of the time, I can control my day by the choices I make. I don’t pretend to always have it figured out & some days are definitely better than others. However, today is a good day…and for now, that’s all I need. 🙂