Weeks ago my life abruptly stopped in its tracks. I was given the news that nobody ever wants to hear, I had cancer. Since that day, I haven't known what to do or even how to feel, except to fall back on my friends and family, start making my oncologist appointments, and to write... But now, I want to do something else...I want to educate others while I navigate through this challenging time in my life.
I had my appendix out in May, multiple doctors had initially thought it was acute appendicitis- so, problem solved, right? Wrong. I had a low grade tumor inside of my appendix that had burst before my appendix was removed. I have mucinous adenocarcinoma of the appendix OR appendiceal cancer. Because my tumor was non carcinoid (gelatinous) it had the ability to move outside of my appendix and affect my other organs, causing them to be cancerous too, and apparently that is what it did. Now I have to see oncologists who specialize in my type of cancer to see what steps to take and what happens next. My specific type of cancer affects only 600-1,000 people in the United States a year, mostly people ages 40-60... it's an extremely rare cancer and because of this there are only a handful of specialists/surgeons who treat it, and only a couple in New England where I am from.
So, as I have been trying to digest this news day by day and find out more about this cancer, I saw a posting for Relay for Life (a cancer research charity event). The event that my college, Merrimack College, as well as many others participate in each year and raise large amounts of money for. Intrigued, I went to the webpage forThe American Cancer Society, who hosts this event, to see what they had to do with appendiceal cancer. I learned that appendix cancer is not listed or recognized on their webpage. No funding is directly applied to appendix cancer, no money from Relay for Life is given to research or to those battling this cancer, no articles to help those struggling for answers either. Nothing. When I found this out I felt angry. I have been told I have cancer, and yet, I cannot find a lot of information, research, or even funding for it. It made me feel obsolete, so I called The American Cancer Society to ask why appendix cancer wasn't listed under their "All Cancer Types" or even why nothing came up about it at all on their website... The answer I recieved was that it was rare, in other words, it doesn't affect as many people as the more popular cancers like colon cancer or breast cancer, so for that reason it is not recognized by the American Cancer Society. No, it's not a "popular" cancer, but then again cancer shouldn't exactly be used in the same sentence as the word "popular". No, its not a cancer that affects a large population, but, it affects me. It affects me and I sincerely hope with hearing all of this that maybe it will affect you too.
While I await the next steps and the more information that will be given to me by my doctors, I want to share what I have learned... I have learned that amber is the chosen color for this type of cancer. I have learned that it doesn't have a month dedicated to it. I have learned about the orange jelly looking mucin that the cancer spreads into your abdomen is then called Pseudomyxoma Peritinei or PMP. I have learned there are two types of tumors associated with it - carcanoid, which is more typical and slow moving and non carcanoid, which is gelatinous and migrates. I have learned there have only ever been 2 celebrities with this type of cancer, one being Audrey Hepburn who bravely lost her battle against appendiceal cancer.
I'm just beginning this life long challenge and I'm looking for answers, hope, and to advocate this disease. I am determined, and if the cancer has parts of my belly, I still own my heart, spirit, and sense of humor. With that being said, I want to start collecting donations (hoping that $2,500 is an attainable first goal) and give 100% to the ACPMP Research Foundation, which is the only organization dedicated to researching and advocating my type of cancer. So, here is to hoping one day there is more information, more specialists, more recognition, and maybe even a cure.
For every $25.00 donated I will personally send you an amber colored wristband for appendix cancer with the phrase "No One Fights Alone"
If you'd like more information go to acpmp.org OR https://mdanderson.org/cancer-types/appendix-cancer.html
Since posting, my family and I have heard some very encouraging news from two separate surgical oncologists about my prognosis...
First, that the tumor in my appendix was not a malignant adenocarcinoma as we were originally told by my appendectomy surgeon, but instead a mucinous neoplasm of the appendix. While still very rare, this tumor is not cancerous on its own, but produces a substance called mucin that is cancer like when the mucin makes its way into a person’s abdomen by way of their appendix as mine did, otherwise known as PMP (pseudomyxoma peritinei).
Second, the surgeons are very hopeful that all of this afflicting mucin from my tumor was removed when my appendix was taken out.
With that being said, they still don’t know for sure that it was all removed, so I will have to be scanned biannually for two years and then annually for up to 10 years to make sure some microscopic amount of this mucin is not hiding and producing tumors in my abdomen – but, this is a much better treatment plan than we were expecting.
As you can imagine, I have been on an emotional roller coaster with this event, it has been utterly life-changing, and I have been overwhelmed with the response of prayers and support... I can't help but think that not only because of my age, an early diagnosis, and also the countless number of prayers I have received and continue to receive, that I am able to avoid treatment procedures for now and hopefully even forever.
While I am lucky enough to be spared from further treatment at this point in my life, I have learned that not everyone who is diagnosed with this is. There are still no answers as to why two people in one million get these tumors in their appendix and there is still no way to detect these tumors except through surgery, such as an appendectomy.
Because of this I am motivated to continue to raise awareness and fundraise for appendix cancer and PMP patients and I hope you will continue the conversation as well! This has given me a more profound understanding of just how precious life is, how important friends, family, and even strangers play roles in our lives during critical/hard times, and how awful a diagnosis of a disease like cancer can destroy ones mental and physical well-being.
Thank you all for the love, support, generosity, and prayers. It is in times like this that my faith in kindness is reinforced ????????????
Here we are, 2 days later, and I have now surpassed my second goal. With tears in my eyes and my heart fuller than ever I will continue to increase my goal- now to $10,000. Yes, it will take more than two days to reach, but hey you all continue to surprise me... Thank you to all who have donated, whether you just want to see a change, whether you want to support me, or whether you just have stumbled upon this event page, read my story and learned something, thank YOU. Here's to hitting our next goal.
I will be upping my donation goal now to $5,000 as I have exceeded my initial goal of $2,500 within hours. Thank you, thank you from the bottom of my heart.