Two of the top internet searches regarding cancer are “late stage cancer survival stories” and “cancer survival guide” and I suspect made by those recently diagnosed and/or their loved ones who are looking for late stage cancer survivors to connect to, to share their insights and give them hope for survival.
Rosie was the first stage IV colon cancer survivor I’d ever spoken to directly and the experience was rather cathartic I must say. I didn’t realize until we talked just how alone I’d felt. It was interesting to find we share a similar outlook on life. One that I believe is essential when facing adversity. She has inspired me to seek out the other stage IV cancer survivors and to offer hope to others through real life accounts of the growing numbers of us late stage cancer survivors out there.
It’s my turn to step up.
The following are questions I’ve received from readers like you. If you have any new questions to add, please feel free to either email them to: firstname.lastname@example.org or post them on The C Card and Me facebook page.
Reader: When you were diagnosed and what was your diagnosis?
Ali: I was diagnosed back in September of 2010 with stage IV colon cancer, but I was given the news I had a cancerous tumor right after my colonoscopy in July of 2010.
Reader: What symptoms did you experience and for how long before you got your colonoscopy?
Ali: According to the CDC, the 3 most common symptoms of colon cancer are:
- Blood in or on your stool (bowel movement).
- Stomach pain, aches, or cramps that don’t go away.
- Losing weight and you don’t know why.
I had the first two, but I thought it was all the stress I was under at work. My face also broke out in a bad way which I attributed to the stress as well. My weight would always go up and down throughout the seasons.
Reader: How long did you had the symptoms before you got a colonoscopy?
Ali: It was about a year.
Reader: What took so long?
Ali: I took so long. I went to see a GI specialist who pretty much dismissed the idea, because I was relatively young (well under 50) and because I did have so much stress, poor eating and exercise habits. He was glad to say I needed to face aging and I was glad to avoid a humiliating procedure and save the $300 copay it would’ve cost. In the end it was my body and my decision and I should’ve opted for the colonoscopy to rule out colon cancer. It was a stupid, stupid, asinine mistake. This is why I do my best to light a fire under others’ butts (so to speak), so they won’t make the same stupid, stupid, asinine mistake.
Reader: Is there a history of colon cancer in your family?
Ali: Yes to cancer. My mother had and survived stage III endometrial cancer and I have cousins who survived breast and pancreatic cancer, but no one we know of has ever had colon cancer.
Reader: Where you ever a smoker?
Ali: Yup. I smoked off an on since I was 21 (I was diagnosed at age 44). I was smoking about a pack a day just before I was diagnosed. I went on Welbutrin to quit them in the spring of 2010 when I knew something was seriously wrong with me and I knew I couldn’t keep hassling the docs to figure it out and fix it with a cigarette hanging out of my mouth…
Reader: So, what type of treatment did you undergo then? Did you say it spread to your lung?
Ali: To date I’ve gone through over 30 cycles of chemo, 2 surgeries and 2 sets of targeted radiation therapy on both lungs.
Reader: Where did you get your treatment?
Ali: In Encinitas (North San Diego), California. San Diego Cancer Center merged with UCSD, so it’s now called UCSD Cancer Center. Same doc and nurses though.
Reader: How long have you been in remission?
Ali: That’s a tough one to answer. I go in and out of remission. I think about 6-8 months is the longest, but when I go “out” of remission, in my case, it means a tiny spot has formed and so we attack it on first site, before it has a chance of becoming life threatening.
Reader: What are some common misconceptions you had about cancer that you figured out through your experience?
Ali: I didn’t realize that different cancers grow at different rates. I am lucky to have a cancer that grows slowly in comparison to say breast cancer. We actually watched a tiny dot take nearly a year to grow large enough for the scan to confirm it as a cancer cell. The other misconception is that stage IV is a death sentence (not so much anymore), that I would go bald and skinny (my hair thinned a bit and I gained 60 lbs in 2 years).
Reader: In what ways did it alter your life (during treatment vs today)?
Ali: I am definitely more assertive and outspoken about getting what I want out of life. I’m also fiercely protective of my positive energy and literally have stepped away from people who are determined to be unhappy, where I used to exhaust myself trying to help them “snap out of it.”
Reader: What side effects have lasted?
Ali: Lingering effects would be digestive issues, weight gain, stiff joints and chemo (fuzzy brain). The lack of short term memory and disconnect with time is the biggest challenge I’d say.
Reader: Do you ever feel survivors guilt?
Ali: Absolutely. I try to keep it in check by focusing my energy on helping others fight to win and by giving back to the charities who’ve helped me through it all. I sometimes joke about being super human, but as Marge Simspon put so well “Hrmmmmm no one likes a gloater Lisa.”
Reader: Do you think the odds of surviving colorectal cancer are really improving? If so, why?
Ali: Absolutely~ The advances in genetic research and treatment options has vastly improved. Ten years ago, targeted radiation therapy (which is incredibly non invasive compared to the old ways of radiation therapy) was considered radical and unaffordable. In the past two years it has saved first my left lung and then my right. Genetic testing now allows your doc to pick the best suited drug combination for your DNA, not just a blanket treatment for all.
Reader: Do you think your cancer could’ve been prevented? If so, how?
Ali: It’s tough to say and I grind my teeth when I admit that I think smoking did attribute to it. If anything it did speed it along. If I had a better diet and exercise regimen throughout my life. If I had paid more attention to my body maybe, just maybe the cancer could’ve been avoided. Getting to stage IV was definitely preventable if I had just gotten the damn colonoscopy when it was first offered.
Reader: Why doesn’t your book specifically address colon cancer?
Ali: Because it wasn’t about colon cancer. It was about someone I cared about finding out they were stage IV cancer. What’s in the book is about all the commonalities that people with cancer share, what we can all do to improve our chances of surviving it and how we can best help those fighting it.
Reader: If there is just one point that will sink in when someone reads this, what do you hope it will be?
Ali: I don’t think I’m capable of saying just “one” thing. You can’t honestly embrace life with a cig hanging out of your mouth. Wake up, smell the coffee and pour almond milk in it. Take in more fiber now, not when you’re 50 and your digestive tract is shot. A body in motion stays in motion, so get out of the chair and off the couch, go for a walk every morning and after dinner every evening. Look up from your cell phone or other device and engage with the people around you. Most importantly, do you what you love in life. Ask yourself “Will this be a great story to tell my grand kids one day?” If the answer is yes, go for it. And don’t forget to open your heart to someone who can enrich your life and you theirs. Someone who will make you proud to have the children who will produce the grandchildren you will regale with all the tales of all the amazing adventures of your carefree, cancer free life.
Oh, and get yourself some good, long term disability insurance (if you go cheap, so will they). Odds are very likely you will one day need it and it will save your bacon.