Five years is not a lot in a grand scheme of things. But for a cancer survivor, reaching this magical number is a huge milestone and, at the beginning of the journey, it seems lightyears away.This month, I am reaching that magical number 5 (although the even more magical one will be in May 2021, marking five years - fingers crossed - of complete remission, called NED, “no evidence of disease”).
Today I’m looking back to reflect of the trek that this illness, treatment, and recovery has been, and hopefully to help someone who might find him or herself in a similar situation. I think, especially for younger (under 50) cancer patients, the diagnosis is a tremendous shock. It is difficult to find your bearings at first, one has no clue where to even start searching for advice. I certainly wish, I had had access to a health advocate or someone who has been there before me and who would have been able to take a bit of the fear away.
By no means do I want to claim to have all the answers, my goodness, I wish somebody did and we could wipe this disease off of the face of Earth. What I can offer is some insight into how it went for me and where I looked for help on my path to reach this point of five year cancerversary. In the future I will have more detailed posts on:
What I ate and keep eating, trying toward off the disease from recurring
What supplements I took during and after the treatments
What additional modalities (meditation, exercise, Eastern medicine) have helped me
Cancer is a word, not a sentence (Online source, anonymous)
I was 46, still under the recommended age for a colonoscopy. But I had a bit of rectal bleeding on and off, which my doctors thought was due to hemorrhoids following giving birth two years earlier. (Such misdiagnosis happens too often especially for females in child-bearing age, so please be vigilant!) I had no family history of CRC, I was healthy, I exercised, ate well, all seemed to be going really, really well. I had a great marriage, two wonderful kids, a job teaching college that I loved.
And then my life as I knew it came to a screeching halt. On November 13th, 2014 I woke up from a screening colonoscopy to the most devastating news. Large tumor, almost blocking middle rectum, later to be designated as stage II B colorectal cancer (CRC), upgraded to III B following the surgery.
INITIAL STAGES: SHOCK, PANIC, DEPRESSION
The next few weeks are a blur. Lots and lots has happened, I was just walking through it all like a zombie:
finding a host of doctors,
scheduling further testing,
awaiting additional pathology reports,
seeking second and third opinions,
deciding on the course of action,
learning to deal with the fear, at times debilitating fear (I remember staring at my two kids, at that time barely 3 and 12, and not even realizing that tears are flowing down my cheeks, and me unable to control them no matter what)
trying to keep working, at least until further course of action would be determined (I remember trying to teach my classes, and catching myself not hearing what the students are saying because my mind what on my imminent death and leaving my family behind to fend for themselves)
trying to figure out medical leave (crucial as my insurance to deal with this cancer was dependent on my job)
My husband was a rock throughout all this: we cried together and we clung to every little crumble of hope there was to find. Keeping up hope is one of the most important things a cancer patient can focus on. (I fired one oncologist who was constantly reminding me of the grim odds I was facing with my staging of the cancer). My parents and my mother-in-law were great source of unyielding hope and optimism. They never, ever, at least not to my face, doubted that I will ward off the worst. Thanks to all this support I never, ever gave up, and always kept up the glimmer of hope, even through the hardest treatments.
I was clinging to what I could be hopeful about:
the fact that the cancer has not spread anywhere else
the fact that the tumor was easily accessible for surgery
connecting with other patients and survivor and hearing their stories of hope and perseverance
gradually focusing on trying to save my life rather that thinking about dying
Don't look back, you are not going that way (Online source, anonymous)
SEEK ADVICE BUT DON'T TRUST EVERYTHING YOU READ OR HEAR
We all have met Dr. Google. That is often the triage for any ailment. But with cancer the stakes are so much higher: The horrifying statistics (for CRC stage III, 40% chance of survival beyond 5 years), the description of the course of treatments that were still ahead of me and that seemed way, way worse than the disease itself.
The worst is how contradictory the advice found online appears:
eat this, don’t eat that on one website (vegan, only vegan), and totally opposite on another (paleo or keto)
take this, don’t take that (on supplements, vitamins, minerals, and the like)
go with mainstream medicine; forget the doctors, go with alternative only, etc.
I had been vegan for several years prior to diagnosis, and now, all of a sudden I was told that I should go keto to starve the cancer. Asking doctors about lifestyle changes was leading nowhere. The answers regarding nutrition were usually: eat anything, just keep eating, so that you don’t weaken your body too much. (I will write a separate post about dietary recommendation that worked or didn’t work for me separately. For now it is enough to say that it took me a long time to find an optimal diet that seems best suited to my body’s needs).
WHAT HELPED ME FIND MY WAY
I am a researcher by profession, and so I decided to research my disease in reputable medical journals as much as I could and find out the best options to increase my chances of survival. The 40% odds were so ominous. I knew I had to actively try to do something or I would go crazy.
One thing I realized pretty quickly is that I wanted to combine the best from both world: traditional medicine and the alternative/complementary treatments. I found a naturopath who specialized in cancer care, I also made sure that my surgeon was board certified specifically in colorectal surgery, and that my oncologist was open to my choice of combining allopathic and naturopathic approaches.
The various treatments I underwent were hellish but effective:
30 sessions of pelvic radiation which threw me into immediate menopause, fried my bottom - I could barely sit for months on end, and going to the bathroom was utter horror - and stiffened my pelvic joints until just recently
Abdominal surgery which took one third of my colon and majority of the rectum out
Temporary ileostomy for four months (a tube to the outside with a bag attached from the end of small intestines to bypass the colon so that it could heal after the radiation and surgery)
Two series of chemotherapy with their awful side effects - nausea, diarrhea, weight loss, insomnia, extreme fatigue - and the forever gift of peripheral neuropathy in my feet: pins and needles, numbness and pain (I’m lucky to life in Southern California so that I can live in my Birkenstocks in the summer and my Uggs during cooler months, all other pretty shoes are collecting dust in the closet)
Four emergency hospital stays due to abdominal blockages.
Because I went through it all only this way, I can’t compare it to what if I had done it any different way. But I am here, so whatever worked, worked.
I had cancer, cancer never had me. (online source, anonymous)
I also found a cancer support center, which became my second home for a few months. I attended variety of classes and workshops there with like-minded people, all in the same boat as me, either patients or suvivors. The offerings of the center were great:
Guided Imagery Therapy
Last but not least, I quickly found my way back to exercise. As soon as my surgeries were over and my wounds healed, I went back to my favorite form of exercise, indoor cycling. I am so fortunate to have found an amazing studio called Beat Bike in Reseda, CA. Not only do I get to sweat and get my butt kicked during the amazing spinning classes, I also get motivated and inspired by the remarkable instructors there (Thank you Lisa, Julia, Abby, Nikkita, Paula, and Bailey <3) .
Spinning, as I see it, is a perfect metaphor for life in general, but even more so for a “life-interrupted” like mine in the last few years. At times you turn up the bike’s tension so much, it seems you are climbing an unsurmountable peak, and when you are almost ready to give up and let go, the instructor is right there to encourage you to get going. The peak is almost there, you can make it! And then you race downhill like crazy, the exhilaration of that wind you imagine pushing your back, you feel you could fly. Once you reach the bottom of that valley, you know what’s coming - another hill, another obstacle. But by now you are a little bit stronger, you can push a little more, you can reach that peak in a little better form, especially since you know the whole group has your back. Ups and down, in life, in love, in sickness and in health.
I don’t want anyone to go through what I went through. PLEASE be vigilant, get checked (colonoscopy) as soon as you feel something is off. Don’t wait till 50! Colorectal disease is on the rise among 30- and 40-year olds, and it often is very advanced by the time the symptoms are clearly perceptible. And yet, if found early, it is completely curable! Listen to your body and pay attention to you poop, yes, thats right! If it’s changed in form, consistency, frequency, observe and go get checked.
Drop me a line if you have questions, I’d love to help if I can.