Rosie was such a pleasure to talk to that it felt like a mutual therapy session at times. I felt a great sense of kindred spirit-ness. In part, because she is the first (other) stage IV colon cancer survivor I’ve spoken to directly (and the hour long conversation was rather cathartic, I must say), but also because 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 to offer hope to others through real life accounts of the growing numbers of us late stage cancer survivors out there.
I had to pare down quite a bit to fit it in here, but suffice to say there was a lot of exuberant expressions of “Exactly” and “omg, me too” along with a couple “no…well, yes, but I don’t like to admit it” moments.
Go fill up your mug and then come back and enjoy this inspiring QnA with the lovely, lively and charming Rosie Painter…
Me: When you were diagnosed and what was your diagnosis?
Rosie: I was diagnosed back in December of 2010 with stage IV colon cancer.
Me: 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 attributed them to stress and with losing weight well, I was never considered a “thin” girl, so losing weight didn’t seem like a problem to me at all <laughter>.
What symptoms did you experience and for how long before you got your colonoscopy?
Rosie: I had blood in my stool and when I talked about it there were plenty of people that helped me to not be afraid of it. I thought it wasn’t normal, but maybe it was just a sign of colitis or leaky gut. No weight loss, but I didn’t feel good a lot of the time after eating. I had a colonoscopy five years before. At that time they told me it was “cloudy”, but because of my good health, they told me not to worry about it and come back again in five years.
Rosie: Yeah… Had I thought about it, I would’ve thought; you can’t feel polyps, you can only see them. If there’s one thing I’d put an asterisk by, it would be that you don’t feel colon cancer. By the time you feel it, it’s late in the game.
Me: When they say “cloudy” do you mean they had trouble seeing anything in there?
Rosie: Yes. They had trouble seeing things, but they didn’t say it that way and I didn’t think about let’s do it again in a year. To jump ahead and answer one of your questions for later I’d say that this is the one thing I’d hope people would take away from this. I’d say to them that if a test is ever inconclusive, where they can’t say it is or it isn’t, don’t settle for that. Ask to be tested again until the result is clear.
Me: Is there a family history of cancer?
Rosie: Family history of no colon cancer, never.
Me: Yup, same here~ What about cancer itself. Was there a family history of any cancer?
Rosie: Pancreatic cancer, yes. My mother, when she was 82. Heavy smoker, and I’d read that it can be connected.
Me: Where you ever a smoker? I was, so that’s why I’m asking.
Rosie: Never. Smell was always a big thing to me, so no.
Me: In the series, I was trying to address the fact that though smoking can be an attributing factor, you can still get colon cancer even if you’ve never smoked and eat healthy.
Rosie: and you could get lung cancer.
Me: Yes, exactly~
Rosie: I think definitely in your research, in your detective research that it is a clue, however in defining why you have colon cancer, there are so many things we are subjected to in our lifetimes and then there is just aging itself.
Me: So, what type of treatment did you undergo then? Did you say it spread to your liver?
Rosie: Yes, it spread to my liver. I was diagnosed in Colorado and went for a second opinion in Arizona.
Me: You were treated in Colorado, but also went to Arizona, is that correct?
Rosie: The hospital in Arizona presented a program with integrated medicine. We sent them my information and when we arrived they had a suggested plan in place. They answered questions we didn’t know we had!
So, to answer your question, I had 2 surgeries, one on my colon and liver (at the same time), laparoscopically, radiation on the liver for the difficult to reach area and a year later, surgery again in a different area of the liver. I went through 12 cycles of chemo in total (2 rounds), and it’s now been a year and a half since my last chemo treatment. Everything was interspersed with breaks in-between which gave my body a chance to recover. Everything was interspersed with breaks in-between which gave my body a chance to recover.
Me: I didn’t have to travel other than moving 30 miles north to be closer to the treatment center and friends. That must’ve been a hardship.
Rosie: Actually, it wasn’t hard. The traveling gave me something to look forward to. By the time I’d recover from the cycle and starting to feel better, we’d hop on a plane, get treatment and back before I got a chance to get sick. it kept me focused on other things, which was good. Thinking about it, it’s been a year now since the last surgery and a year and a half since my last chemo session.
Me: What are some common misconceptions you had about cancer that you figured out through your experience?
Rosie: Well first would be, never go online and read those MD sites, because they’ll tell you, you have like five years, if you’re lucky, especially at stage IV. When I did, I was so devastated that I think the emotions could’ve killed me. It’s like telling someone exactly what their experience is going to be like having a baby. They don’t know, because every body and situation is different. Like that, Chemo works differently for every body (and there are now many more types of chemo drugs these days) and even though it’s at stage IV, it really depends on where it’s located, how strong your body is…there are so many variances that it would do you a very great injustice to just go on line and accept that information.
Me: Well said, and you know that’s a big part of why I’m pushing to do this “Stage IV cancer survivor’s” series, because of all the disheartening information I’ve read by so-called experts stating that in the cases of stage IV cancer, especially colon and lung, that you might as well start writing up your will and getting your affairs in order and I think we are living proof, along with many others that, that kind of thinking and those grim statistics you see quoted out there are outdated.
In what ways did it alter your life (during treatment-today)?
Rosie: For me…I didn’t turn into anything different career wise, but it was kind of like a water color painting, I just didn’t stay on the surface. I totally absorbed my life.
Me: I love that. For me there were mental changes. I had to accept that my brain wasn’t working the same way it used and may never. I did 18 cycles of chemo.
Rosie: Oh, gosh
Me: Yeah, and that last round was the one that I didn’t really quite bounce back from. That was a challenge for me to accept that there was a new norm for me. That my brain wasn’t going to be able to do the kind of work it used to, which I think is good, because I don’t think that proved to be a very healthy way to live anyway. So I was wondering if there were any long standing side effects from the chemo or radiation that you’ve experienced and learned to adapt to?
Rosie: No and yes. Some people tease me and well, we’re all getting old, but it’s a different kind of thing and they wouldn’t understand unless they’ve been through it. I think I used to be a much better multi-tasker and at times, if information comes at me too quickly it can be overwhelming.
Me: How about your ability to remain focused, has that been affected?
Rosie: Uhuh. I don’t want to admit it <laughter>. I’m still working at it, but what came easily before is more of a challenge now. I’ve learned to work around it, but it’s there.
Me: Yup, and I think it’s good to admit it, because others out there (myself included) who are frustratingly trying to go back to who they were and what they did before, and unfortunately they think they can’t or shouldn’t be happy until they can be that person again. I think I finally was happy when I accepted there was a new norm for me.
Rosie: Yes, that and I wanted to say about the challenge of trying to resume your life after being away from it all for a year and a half and having grown so accustomed to a life with your treatment staff in it. I didn’t know where to start. My husband and family were very helpful.
Me: Do you feel like there some survivors guilt there?
Rosie: Yes. You mean that I survived while others didn’t? Yes, Ali Yes. Even when I go back and I love going back to visit, but when I’m there and all dressed up and my clothes fit, well actually they fit me better then when I was thinner, I’m pretty fluffy now. I love food, I’m such an Italian <laughter>. This is another thing, but I would see food and I wanted to eat it, but I couldn’t get it passed my lips, because it was horrible. I always tell people that the greatest gift in life is your desire to eat, an appetite. That, is such a gift and you don’t know it until you lose it. It feels so good to be hungry, to go out and eat and drink with my friends. I didn’t have that and I really missed that when I was sick.
Me: The National Cancer Institute (NCI) maintains a database of cancer statistics called Surveillance Epidemiology and End Results (SEER). Based on a sampling of 120,000 people diagnosed with colon cancer between 1991 and 2000, the five-year survival rates based on the stage of the disease are below. Stage I is considered the least serious form of colon cancer, and stage IV is the most advanced.
Stage I Survival Rates – 93%.
Stage II Survival Rates – 72-85%
Stage III Survival Rates – 44-83%
Stage IV Survival Rates – 8%.
Do you believe the odds of surviving colorectal cancer have improved since then? If so, why?
Rosie: Yes, our knowledge and science has come such a long way. The ability to identify which drugs work better, drugs that help improve appetite, frame of mind, keeping the mind occupied and a sense of well being. Integrating complimentary medicine like acupuncture and treating the whole body have all made a difference.
Me: Do you think your cancer could’ve been prevented? If so, how?
Rosie: Possibly – prevented through thorough screening, but when it did happen I never said “Why me.” I said “What can I do, what’s next?”
Me: If you knew then what you know now, what would you do differently?
Rosie: I would be more discerning in my approach.
Me: If there is just one point that will sink in when someone reads this, what do you hope it will be?
Rosie: The things that seem so routine, are probably in place for a reason. I know this is going to sound cliche, but be true to yourself. When you sense something, slow down and listen. That’s the very person that we rarely listen to, but the one who knows us best.
– Rosie lives in Colorado with her husband and daughter. She is a dental hygienist and instructor. Rosie received her cancer treatment at CTCofA’s Western Regional Medical Center in Arizona.