Living with Cancer as a Chronic Illness -Diana Sloan

When you hear you have stage IV cancer, it is hard to wrap your head around the connotations that go with the news. Immediately your mind goes to this is the worst possible diagnosis. What do I do now? As you discuss options or the lack thereof with your doctor, the fear and uncertainty can be overwhelming. You just want it gone and, if your doctor says they cannot remove it, it is easy to fall into hopelessness. But I want you to know that it is possible to live with stage IV colorectal cancer as if it is a chronic disease. I have been doing it for over five years.

Now don’t get me wrong. If surgery is possible, it is the best possible way to achieve no evidence of disease or NED status. Although I have had five surgeries since 2012, it has not been an option for me in the past couple years. I have also done every chemo that is FDA approved for my KRAS mutant genetic profile. Immunotherapy isn’t the best option for me right now because I am micro-satellite stable, and the trials that are showing the most promise are for people with high micro-satellite instability. Basically, I need science to catch up a little. I also need to be around for as long as possible.

There is one chemo I have not progressed on, and that is irinotecan, so as of right now I am recycling that drug along with xeloda and avastin. Now my tumors may not be shrinking, but they are also not growing. I have had nine tumors in my lungs since 2015; and, by doing chemo and taking short breaks, I am still here. So, I continue on and wait anxiously for my next break.

Full disclosure, it isn’t easy. There are days when I just don’t want to do this anymore. Days when I am so tired of all things cancer. But then I look at my husband and my children and realize I must push through. Because they are worth it. Life is worth it.

I am a realistic person and know that this won’t last forever. At some point the cancer inside me will no longer respond to chemotherapy. I know I will be filled with the fear of the unknown just like every other stage IV patient. But until that time comes, I will be grateful for the ability to handle treatments and maintain stability. It is possible to live many years with active disease. So never lose hope. It is a powerful thing.

 

Hope is the thing with feathers

That perches in the soul,

And sings the tune without the words,

And never stops at all,

-Emily Dickinson

-Diana Sloan is a 2018 “On the Rise” model and a stage IV rectal cancer patient from Lakeway, TX