Happy New Year! 2020 has had a much better start for me than I thought it would. Getting a cancer diagnosis at the end of 2019 tossed me for a major loop and changed my life forever. But by the grace of some force much larger than me, and after learning a heck of a lot and making some pretty good decisions, it’s looking like life as I knew it isn’t so far away after all.
Believe me, folks, I’d much rather be writing about road trips and adventures in Sri Lanka right now and not having to worry about this cancer stuff. And I will be getting back to those posts and those travels. But after taking a three month road trip to hell and back, I have to share the knowledge that I’ve gleaned, and I must use it in a positive and helpful way. I swore from the beginning of this journey that I was going to make good things come of it, that I was going to find the silver lining, and I have, in more ways than one. So allow me to share what I’ve learned. If you can’t use my advice for you, please use it for a friend or loved one. Everyone is touched by cancer in some way, even if they don’t have it. And one other thing: I am no expert, but the learning curve has been extreme.
Gather the Troops
Don’t fight the battle alone, and don’t push people away who want to pray for you, send “positive vibes,” or stand by you, even if you might not have the same beliefs they do. Likewise, if someone thinks they know what you’re feeling, claims to know you were ill before you did, wants to tell you what to do, or, heaven forbid, is jealous of the attention you’re getting, say good-bye. (Yes, all the above happened to me!) More people will stick by you than you can possibly imagine, and there will be surprises. Whatever you do, don’t underestimate the sheer power of a whole bunch of positive energy coming your way.
Do Your Research
This should be a no-brainer, but take my word, it isn’t. I’ve met too many men and women in the past three months that put their lives into the hands of doctors and believe everything they’re told. I’m not saying that doctors lie. No one becomes an oncologist without studying long and hard. But we’re talking about your life here, this is serious business, and you owe it to yourself and your loved ones to get any knowledge you can about your condition. Some good places to start are the American Cancer Society and the National Cancer Institute. Read, take notes, start a binder of information, and bring it to every appointment that you attend. There will be a lot of them. Arm yourself with useful information, weed out the bull. Learn the difference.
Don’t Place Too Much On Statistics
Of course you’re going to read them. I couldn’t get enough of them, and believe me, the stats for lung cancer are not encouraging. But understand this: current statistics are old, and they don’t reflect breakthroughs in treatments. They don’t even take into account the fact that a particular patient may have died of something else other than cancer, only that they died, and so are included in the number. Furthermore, if you look five different places you’ll come up with five different percentages. If you have to believe one, believe the highest one! Better yet, think of your case this way: you are an individual, you are different than everyone else. Your journey is going to be unique and cannot be represented by a number on a piece of paper. Move on.
Advocate, Advocate, Advocate
This one goes hand in hand with research. Once you’ve learned the facts, don’t be afraid to use them. If your medical team doesn’t want to answer your questions or hear your voice, get a new medical team. If you find they aren’t telling you everything, get a new medical team. If you feel they aren’t working hard enough for you, get a new medical team. If they aren’t spending enough time with you…you get it. No one is going to advocate as hard for you as you are for yourself. Unless you are physically unable to, find your voice and use it. If you are physically unable, find the strongest person you know with the biggest mouth and the most common sense and let them front your business for you.
Know Every Option
Especially when it comes to treatment, you must research and know every option. If you think that chemo and radiation are the only choices when it comes to killing cancer, you have a big surprise coming to you. Do yourself a tremendous favor and ask your oncology team about biomarker testing, as well as immunotherapy. If you have specific mutations in your tumors, you could be in line to receive targeted therapy, a pill, to potentially shrink your cancer or even eliminate it without destroying healthy cells. Or, you could receive immunotherapy, which trains your immune system to attack cancer cells. If you choose to believe that “Big Pharma” has made no advances with cancer treatment, think again. I’m receiving targeted therapy, and within a few days I saw a staggering change in my visible tumors. Thanks to my magic orange pills, I have been able to resume hiking and will soon start traveling again…three months after a diagnosis of advanced lung cancer!
Get a Second Opinion
And don’t go just anywhere, get it at a comprehensive cancer center, as seen on this map provided by National Comprehensive Cancer Network. These facilities have all the latest, cutting edge treatment and technology, as well as access to clinical trials, any and all of which have the potential to extend, or even save, your life. If you think that your local hospital is your only choice, or that traveling to one of these centers is too much of a burden, take it from me: the day my sisters drove me to Dana Farber Cancer Center in Boston, eighty miles from home, may turn out to be the most important day of my life. The second opinion turned my world around in ways I need a separate blog to describe. Particularly if you’re in an advanced stage of cancer, working with the best in the country must be an option.
I hope that what I have learned is of assistance to at least one person. The silver lining grows!
Oh, and one other thing: NEVER ask a person with lung cancer how long they smoked for. For many of us, that isn’t what caused our disease. THANKS!!