My 'VIP' Approach to Beating Rectal Cancer
In July 2016, I was diagnosed with stage 3 rectal cancer. I was 39 years old. Single, no children, working and dating and volunteering for the Clinton campaign. And now, here I was on the eve of my 40th birthday, faced with a year of daily chemoradiation, my first major surgery and first hospitalization, biweekly chemo infusions, and another surgery. The possibility I would have a permanent ostomy bag – and the certainty I would have at least a temporary one. The decision of whether or not to freeze my eggs before the radiation killed my ovaries. And that’s just the stuff I knew was coming!
Thankfully, the doctors said from the get-go my cancer was very curable. And today, I am cancer-free, stoma-free, rectum-free… happier and more complete than I was before cancer, thanks to the amazing doctors at the Lurie Cancer Center of Northwestern Medicine in Chicago and what I call the VIP Approach to Beating Cancer.
So, here’s how I did it.
First, the V in VIP stands for Voice. You are an essential member of your health care team, and it is absolutely imperative that you speak up when something is wrong.
I had visited a doctor a year before my diagnosis, in August 2015, because I had blood in my stool. She said I was too young for colon cancer, and it was probably just an internal hemorrhoid that would go away.
I have a family history of colon cancer, and she sent me away without even doing a test. I believed her. We are raised to believe doctors are smart, all knowing – and this is a premier medical center. I believed her.
I waited six months and the bleeding didn’t get better. So in March I used my voice, I saw another doctor who said I was too young for colon cancer, but I demanded a test. My bleeding got worse before the test, and I used my voice again to see a specialist. She said I was too young for colon cancer, but she moved up the test. And thank God she did. I was a ticking time bomb.
My voice saved my life.
I used my voice again during treatment. It was important for me to keep working and feel as good as possible, so every time I experienced a side effect, I asked my doctors for a solution. My voice helped my fabulous care team keep me stocked in anti-nausea pills, pain patches, burn creams, pain suppositories, IV fluids, and ostomy supplies. Not only did I work through that year – I interviewed for and got a new job. You deserve to feel as good as you possibly can – use your voice to make it happen!
I’m still having to use my voice. Now this is where it gets a little graphic, so bear with me. After all my treatments were done, I was experiencing unexplained pain and bleeding in my lady parts. From the beginning, the docs had talked about late effects like neuropathy and fecal incontinence and my inability to reproduce, but even with all the commercials we see for Viagra, nobody had discussed how radiation and the impending menopause impacts female sexuality.
It wasn’t until I complained to a few docs that my oncologist suggested I consult a sexual health specialist. It turns out, between menopause and the damage from radiation, your pelvic region and associated muscles, tissues and hormones sustain a whole bunch of damage. Nobody talks about it, but there’s actually something you can do about it. And the miracle here is, with this platform today, I can bring awareness to a taboo issue. Northwestern Medicine has a brand new Center for Menopause and Sexual Health, and it’s fabulous. Please spread the word.
Next comes the I in the VIP Approach to Beating Cancer. And that I stands for I, the patient; you, the patient. You are the most important person in this equation.
I decided to be semi-public about my diagnosis, and from the beginning, my darling family and friends all wanted to know how they could help. The requests were honestly a little overwhelming. So I used my blog to suggest useful tasks, for anyone who was really serious about contributing. Just by asking, I got house guests in Chicago winter to help keep the blues away. I got a cat sitter for when I was recovering from surgery. I got chemo buddies to keep me company during infusion days. I got freezers full of soup, and enough girly soaps and lotions to carry me through the year and beyond.
By putting myself first in this experience, I focused all the energy on, and only on, things that would help me get better. Miraculously, so many people showed up in so many amazing ways. And I am here today as living proof that it worked.
And finally, the P in the VIP Approach to Beating Cancer: Be present. Coming in to this battle, I had already been a mental health patient since 2008. Over the years, my yoga practice – and many therapists and even the Dalai Lama – have taught me we cannot go back and change the past, nor can we control the future, no matter how much we worry. The only thing you can do is your very best, right now, one day at a time.
This, more than anything, helped me survive what should have been the worst year of my life. Beating cancer became my part-time job, and every day, I would set a modest goal, do my best to feel my best, and do whatever treatment related thing I needed to do. That’s it. I didn’t try to figure out how this happened to me, and with a few notable breakdowns, I didn’t stew about what I had endured. I also didn’t spend much time agonizing about whether they would get all the cancer or if I would die. That was kind of irrelevant in the main goal of being happy today.
I often say it’s a miracle I got this cancer when I did; I was old enough to have the wisdom and character to tackle a beast of a year, but I was young enough to be physically resilient. So I did my best to be happy. I was alive, after all. The only other young colon cancer patient I knew had died because they found his cancer too late. I was at least given a chance.
Furthermore, I had my fierce family who was determined to beat this. I had a million friends stepping up to help. I had a job that was supportive and let me work a reduced schedule so I had something else to do besides be a 24/7 cancer patient. I could have spiraled into a black hole of unhappiness, and I did briefly a couple times, but that wasn’t going to help me get better, and it certainly wasn’t going to help me live each precious day to its fullest.
So I made the choice to be present and positive, and the miracle here is I’ve carried that beyond cancer. I now know what a real problem is. Work drama, traffic stress, long lines at the post office, political fights on Facebook: I just don’t let any of it bother me anymore. And I must say it’s a much happier existence. My only regret is I didn’t figure this out sooner.
There are many more stories to tell, but I will stop there and wrap up my story and the VIP Approach to Beating Cancer. I am honored to have your time and attention and wish you health and joy.