I have stage three neuroendocrine cancer. While I want to share this experience with others, I’m sometimes embarrassed by the response. Why?
I’m not suffering.
Really. Not like so many others around you and I who have daily burdens to carry. Seek out someone near to you who is suffering and give him or her a call, drop by for a visit or do something thoughtful. Those who’ve done that for me in my post surgery days have lifted my spirits. Thank you for your attention. How could I feel that I’m suffering with this much compassion?
I’m certainly not as inspiring as you think I am.
I’m not amazing. I’m full of weaknesses. I can still have a bad attitude and be snappy to my family. Both my doctor and my husband have had to encourage me to not look for the worst outcome first. I’m not a positive burst of sunshine, but I am choosing faith in God and a grateful heart to cope with this. And if that’s inspiring to you, realize that it is a day by day choice, not a natural gift.
Other than many more doctors’ visits, my life looks like normal.
I hope to live a long life. Many neuroendocrine patients are going on 20 years of survival. I’m not on any harsh drugs. I probably will not have chemotherapy. I exercise and eat right, even better than before this. Plus, I’m preparing my first novel for publication in February and working on freelance writing projects. I want to contribute, be given opportunities to serve, and take chances to grow. If I’m too tired, I’ll tell you.
So what is different?
My worst pain is a frozen shoulder resulting from the first surgery. I spend more time at the physical therapist and orthopedist than at any cancer-related doctor visit.
However, this week I discovered that the first two surgeries didn’t “cure” me. I felt like something remained. But I’ve been told that many cancer patients feel this way, anxious about every twinge. So, my gifted and thorough OBGYN took a few biopsies during a surgery for another issue last week.
Unfortunately, new tumors have implanted themselves in my pelvic wall.
Where do I go from here?
I am going to Iowa. Nope, I’m not becoming a farmer or moving from Minnesota. But I am going to visit a specialist in the field of neuroendocrine tumor research and treatment at the University of Iowa right before Thanksgiving. I will receive a special scan and devise a treatment plan with the team there.
Honestly, my doctors here have been vigilant. I will still work with them but in consultation with a NET specialist, which is imperative with these kinds of tumors.
From the gastroenterologist who ordered the first CT to the colorectal surgeon who performed my first two surgeries to the oncologist who manages my ongoing cancer care to my primary care/OBGYN, I have worked with well-trained and mostly attentive doctors.
Most neuroendocrine cancers take years to diagnosis. For me, this wasn’t the case. It was six weeks from the time of those stomach pains that I could not ignore to surgery where the primary tumor was removed.
That’s not usually the case.
You see, this cancer can hide in places like the bowels and be very difficult to detect. It is relatively slow growing and is also known as carcinoid, which means “cancer-like.” For those reasons, some doctors dismiss it or the symptoms or act like it’s not really cancer or that aggressive treatment isn’t necessary. I’ll write more about that for NET Cancer Day, which is Nov 10. That’s when I’ll share my back story and my initial symptoms to raise awareness about the disease.
Let’s just say I’m educating myself about the right questions to ask my doctors, and in the process, they are learning more about this disease along with me.
So, what can you do?
For now, I’m doing okay emotionally. I don’t mind talking about my disease with you or answering your questions. In fact, that’s better than avoiding me or assuming something that isn’t correct. Please don’t avoid me or others who are suffering. Hugs are always nice, even if you’re not sure what to say. We all have challenges to overcome. I’m just happy I learned from the earlier ones how to help me with this one.
You can always pray for me, and I hope many others.
But please don’t worry over us.