Social media makes connections...some with good news, some with bad. We find out about pregnancies, vacations...and unfortunately illnesses.
When a healthy Lincoln mom posted about her cancer diagnosis, it caught her friends off guard. Even more surprising was the strange diagnosis for such a healthy 46 year old.
You could say Facebook is the daily journal for Karen Freimund Wills. The active Lincoln mom of two posts about her family, what musical she's performing in...even what she eats everyday.
My own connection with Karen started years ago in college at UNL...as roommates. And through Facebook, we all found out about Karen's cancer diagnosis.
Karen says she's being very open because she needs people to understand her situation. Karen never heard of appendix cancer. When the doctor told her, she said, "Is that really a thing?"
It exists, but is extremely rare...only 500 to 800 people in the U.S. are diagnosed each year with this low grade appendix cancer.
Karen discovered her cancer through a dance injury that led to a lump or hernia next to her groin.
After tests and surgery to repair the now two hernias, doctors discovered a large amount of mucous or mucin filling up her abdomen.
So the doctors ended up taking out Karen's right ovary and appendix., because they couldn't tell which one of those two organs was mass producing this mucin.
Karen said, "Kind of like one of the organs was blowing snot in the inside of my abdomen."
It was the appendix that was producing all that mucin, and Karen needed cutting edge care. So she turned to Dr. Jason Foster, a surgical oncologist at Nebraska Medicine.
Dr. Foster says the most important part for patients with this particular cancer is removing all of it. And it can be a pretty involved endeavor because if you can imagine this material spilling in like grain or rice in your house, it can kind of get in all the compartments of your home. These tumors can kind of escape in every corner of your abdomen. So you need to be fairly meticulous in looking at every corner of the abdomen and to extract all the tumor. And in Karen's case there was a fair volume of it.
Karen thinks Dr. Foster might have scraped four pounds of it out.
Dr. Foster operated for about eight to nine hours in removing the disease. They also removed organs including ovaries, the right colon...they took some of the inner lining of the abdomen, the spleen, a little bit of the pancreas, a structure called the omentum...
For Karen's appendix cancer, Dr. Foster used a treatment called hot chemo...and the Buffett Cancer Center here in Omaha is one of the few places in the country to do the procedure.
"It's in a sense engulfing it or submerging the organs that might have a microscopic coat," Dr. Foster says.
"And the chemo itself is deadly to the cancer. The other thing we found is cancer cells are very thermally sensitive. And the heat is another mechanism to kill cells. And you put those two therapies together for a more significant response in getting the cancer controlled, or at least preventing the relapse side of the management of patients with these tumors."
Dr. Foster says when dealing with cancer, you need to be your own best advocate, do your research and have a positive attitude.
And Karen says she's just a positive person. "It takes more energy to be angry and sad then it does to be happy."
Dr. Foster says Karen's prognosis is good. And this same treatment might work for colon cancer and some ovarian cancer patients.
Karen is home now, healing and continuing to spread her story on social media, now with the hashtag "appendix cancer."
"You're gonna see lots of posts by me. And I'm hoping somebody will get diagnosed, see me and contact me..and say...what do I do? And I'll say, go see Dr. Jason Foster."