DUST TO GOLD
I close my eyes, only for a moment, and the moment’s gone
All my dreams, pass before my eyes, a curiosity
Dust in the wind, all they are is dust in the wind
– Dust in the Wind, Kansas
If you’ve been reading this blog, you may remember that immediately following my brain biopsy in late June, my surgeon told me I had a malignant fast-growing inoperable brain tumor with no cure and I had only a few short months to live.
Turns out that was wrong, but for six days that’s the information we were trying to digest.
During that initial time, there were some things that were mighty helpful as we oiled the guns and sharpened the daggers preparing for the fight of my life.
TOP 10 THINGS THAT HELPED WHEN WE GOT ‘THE NEWS’
Get a second opinion: As we learned, that first deadly prognosis was wrong. My particular tumor has a 70 percent cure rate among adults. That’s a fair shot better than a 0 percent cure rate! But for six days, I looked into the Canyon of Doom and I literally began to feel my soul pulling from the Earth. Honest to god, if they had just let me live with that information a couple more weeks, I think I would have just died like I’d been told I was doing.
Follow the light: Along those lines, learn to filter information. Studies show that maintaining a positive outlook improves your chances of survival and I do believe that your spirit and your mental approach are an important part of your treatment. When you receive bad news, register it – then throw it away. Focus, meditate, obsess on a healthy future. I figure the less you stress out, the more your body can work on getting better.
Reach out: I don’t care how stoic or strong or independent you are, this is a tough game and you’re gonna need all the help you can get. Call your friends and family as soon as you can speak coherently on the diagnosis and see how they can assist you, from crying with you to setting up a meal train to walking your dog. (See some ideas here.) Don’t be embarrassed to ask for help, really. Then you can gratefully tell your friends, “I hope you get cancer some day so I can help you the way you’ve helped me!” They’ll appreciate that.
Pick your team: Do not for a second think you have to stick with the first oncologist you’re referred to. Yes, go to him or her because that’s your launching point. But many doctors specialize in certain cancers and you may want to find that team, especially if you have something rare and complicated. Cancer professionals can also take completely different approaches or use completely different drugs or radiation therapies than each other, which might be important for you (for example, I used proton radiation, which reportedly does less damage to your organs than photons in more traditional radiation – that was important for me since my whole brain and spine were getting zapped, which meant every vital organ I currently own could have been damaged by exit rays). I’m serious. Go shopping.
Tap a medical escort: It’s also really important that you and someone in your life researches your ailment and goes to all your appointments. It’s amazing how I’ll obsess on something a doctor or nurse tells me like, “Your hair will never grow back,” and then I don’t hear anything else they say during that appointment. Your helper can take notes for you and keep track of what your team is saying. You know, I usually take two or three people (Jack – because he’s going to have to pick up my meds and follow through with daily instructions, my brother Don, who has studied neurophysiology and is just a genius, and a girlfriend who can sit there and snap her fingers and really get how much I’m suffering!).
Educate thyself: It’s also really important that you and said helper(s) go in with some basic knowledge of your cancer and that you have questions prepared for your medical team. Fortunately (I guess), we live in an era that is completely gripped with cancer and there is no shortage of books, blogs, websites and organizations that are all about Candyland. If you go into battle blindly, you have only yourself to blame. This really is a situation where the only dumb question is the one you don’t ask.
Play the cancer card: Go on be shameless. In the beginning, I was embarrassed to ask for help carrying my groceries or getting to appointments. Boy howdy you should see me now! I practically start every new interaction with, “Hi, I have brain cancer, so I’ll need you to carry this for me, pay for it, then feed it to me with a golden fork.” It works damn near every time. If someone doesn’t jump high enough to satisfy me, I use the words, “inoperable and malignant and brain.” Gets ‘em every time.
Dream on: Okaaaay, so when we got the big death knoll, I was just launching my next project, a musical film, and Jack was in the throes of trying to launch a barbecue business. He immediately said he would stop pursuing his dream to help me and I was all, “Wha? If I die, then you’ll need something positive to focus on, and if I live, then you’ll be kicking yourself for not starting the restaurant.” So, while I did have to put my movie on the backburner, Jack’s BBQ is becoming a more and more tenable project as we buy a place, wrangle investors and plan plan plan.
Go East: While I fancy myself as Zsa Zsa Gabor in Green Acres whenever I walk into a tincture joint or a healing center or a medical marijuana branch, I can’t deny that I fare better when I take my tinctures and herbs and go for acupuncture and massages and to a lesser extent, get reiki and lymphatic drains. Before I began radiation and chemo, I went to Dr. Puhky, an integrative health specialist in Canada. He recommended a holistic regime to follow BEFORE treatment began and during treatment. There are many integrative practitioners in Seattle who can assess your protocol and suggest exercises, treatments, diets, herbs and so much more to not only help you fight your cancer, but to help you survive the treatment too, which can sometimes be as destructive as the very disease it’s trying to kill. And because a lot of Eastern techniques are more about getting your body healthy enough to try to heal itself, it’s best to get on this regime immediately.
Order up: Oooh, this is a scary one, but get your affairs in order. Do you have a will? How about a living will? This is really morbid, but if you die, does anyone have your life story for an obit? Are your passwords to various email and online accounts recorded in case you go and someone needs to close down those accounts? Ever seen a Facebook account for someone who is long passed? It’s creepy. Do you have a medical and physical power of attorney (POA) in case you get so sick you can’t tend to your own healthcare or your bills? Even if you survive, it’s good to have all of this done.
We are just dust in the wind, all that. And we know – eventually – we have a 100 percent chance of mortality. But don’t forget, there’s always a healthy chance of survival with a light dusting of miracles.
Photo by Ylon.