Friends, it has been too long since I have shared my heart. The last few weeks have held some super exciting moments: bringing my wedding gown home from Cincinnati to have local alterations (it’s hanging in my closet right now!), an early Thanksgiving celebration with my family– we have not had one in two years because of my medical issues, and this weekend we are moving Tyler into the apartment where we will live as a married couple! These weeks have also brought on more pain, more fatigue, more HARD days… for every tiny ounce of energy that I exert my body wages war tenfold.
Usually as I journal through my daily quiet times I sense some message from God; He guides my hand to write & nudges my heart when it is worthy of sharing. I have not felt that nudging lately… maybe God is giving me the break that I desperately need.
As I scrolled through Instagram this morning I noticed the trending hashtag #worldpancreaticcancerday as well as #pancreaticcancerawareness. For obvious reasons, seeing the numerous posts of people wearing purple to support the ill, truly touched my heart. Read my full story here https://stillwaters1.wordpress.com/about/
I feel it necessary to preface this story by saying, this story is MY own. These are MY, unique experiences. Every patient is different! I am sharing what my family & I understand to be true under the guidance & knowledge of many AMAZING doctors.
November is both Pancreatic Cancer & Pancreatic Disease awareness month. Both of these awful forms of illness have personally, devastatingly effected my life & body.
I am one of the lucky ones. One of the very few… the all-too rare 6% who live to tell their story.
In all honesty, I have been confused. Very, very confused when it comes to my original diagnosis. In October 2013, my parents & I met Dr. Scoggins at the James Graham Brown Cancer Center, with little knowledge of the pancreas… we did know it was a highly important organ & that whatever type of tumor had planted itself in my pancreas was not something to take lightly.
That day we found out my diagnosis, I had a solid pseudopapillary tumor. We watched the CT scan. With terror in our eyes we saw the outline of a large, black mass dominate the screen. Dr. Scoggins was very realxed. He told us just enough to break the honest truth, but not enough to add unnecessary anxiety. I appreciate his approach, I believe he was truly considering our emotional needs & coping mechanisms.
I knew this: my tumor was rare, usually found in young adult women, there was an excellent survival rate post surgery, we were not sure if it was cancerous or if anything had spread, a biopsy was unnecessary because we needed to remove the tumor and remove it fast. I would need to drop out of school immediately, move home, spend at least one week in the hospital following a very serious surgery that would remove the head of my pancreas, gallbladder, some intestinal stuff, and do a little rearranging. It would be a long, hard recovery but I should plan to return to college the next semester.
I had no idea what was in store.
I didn’t even know that my surgery was commonly known as a “Whipple.” I had no clue that it was one of the hardest, most complex surgeries to perform. There is zero room for error on the surgeons behalf.
I did not google my condition. I did not try to learn anything. I did not try to reach out to others (with one exception). I did not care to know anything else. I had amazing peace from God and for me, ignorance was bliss. Sometimes it is easier to face a situation with just enough knowledge to be responsible and not have all the frightening extras floating around in your mind. I knew enough and I was handling things in my own way… google would not have helped anything. Half of what you read on the internet is not even reliable, factual information… that information would not have changed my circumstances anyway.
After my Whipple we received the amazing news that there was no cancer in my body. All the biopsies came back with favorable results. The tumor was encapsulated… it had not spread. It was cleanly removed. Had we not caught it at that stage, my doctor felt this story would have been quite different. It was only a matter of time before that tumor turned for the worst.
It wasn’t until months later, as I began seeing other specialists for the unrelenting pancreatitis, that I started to hear the word “cancer” associated with my medical history. The new doctors would review my medical records then mention “your cancer” when talking to me. Many times I said, “Well I didn’t have cancer, I had a tumor and it came out totally encapsulated.” The doctors would sort of shrug off my correction. This was totally confusing.
When I met Dr. Ahmad (he performed my pancreatectomy/splenectomy’/iselt cell transplant) for the first time in October 2014 this cancer of mine came up again. Finally, I decided to find out the truth… was it cancer or not. He explained that pseudopapillary tumors have low malignancy & favorable long-term prognosis, unlike the majority of other types of pancreatic tumors. I understood his answer as yes, from his medical standpoint this would be called cancer. But because everything was encapsulated & had not spread, the removal of the tumor left me cancer-free.
If you have been confused by my communication of my tumor and being cancer free vs being a cancer survivor… now you know why! Regardless, I have survived terrible pancreatic illness stemming from that awful tumor. I am blessed beyond belief to be here today, telling you my story. And though I am still quite sick, I will do everything in my power to raise awareness for the Pancreas, the sicknesses associated with it, and the patients who are suffering through seemingly impossible odds.
Can you show me some support?
Whether it be today, tomorrow, next week or every day for the rest of the month, will you please wear some purple? Purple for the pancreas, easy to remember, right?
And when you do wear that purple, tell someone else the reason why. Do it for me, do it for a family member, a friend, or the countless patients you don’t know who are suffering at this very moment. Something as simple as a purple shirt could be the catalyst for finding a cure, funding research, or pushing someone to see a doctor for those symptoms that don’t seem normal. Someone like me, who was totally healthy & strong while having no idea that something was terribly wrong.
Can you do something else? When you wear your purple can you post a picture on any or all social media platforms?! Lastly, will you 1. Tag me! 2. Use the hashtags #purpleforpancreas #stillwatersblog.
Your support would be such a wonderful encouragement to me and so many others! At the end of the month I may be sharing all of your pictures on the blog!
From the bottom of my heart, thanks for reading, encouraging, sharing, and loving!