Cancer is a word that sends chills down our spine, we don’t acknowledge it until it affects us or someone we love. We hope that this isn’t something that will invade our lives, but if cancer does rear its ugliness we need to fight back with everything we have.
All cancer fights have two adversaries battling for the win: the disease and the person fighting the disease. After a fierce battle, there is always a loser. However, make no mistake, sometimes winning the battle doesn’t mean winning the war, it’s only a temporary win, as the overall war rages on.
In 2010, I found myself on the front lines in a battle that involved my husband, Don, against his foe: Mucinous adenocarcinoma, a rare form of appendix cancer. Unfortunately, after a vicious five-year battle, Don, lost his war; and the destruction rages on, as this ugly disease, in its various mutations, indiscriminately strikes its next victims. In fact, an estimated 1,685,210 new cases of cancer will be diagnosed in 2016 alone, leaving more than half its’ victims lifeless on the battlefield. Science is advancing and someday there could be a cure for cancer, but that day still alludes us.
Like good soldiers, we scoured the Internet for information, desperate for any news we could find. I was all consumed. While I searched for answers, Don stoically battled his body that had betrayed him. Over five long years, I began to understand the disease and its path of destruction.
I remember Don’s appendix cancer diagnosis taking us completely by surprise. Don just had a surgery to remove excess scar tissue that had developed from a surgery many years prior. The doctors believed it was the scar tissue that was causing Don’s abdominal distress. Once the tissue was removed it was biopsied. This biopsy revealed his cancer.
The oncologist determined the original site of the cancer, was Don’s appendix, and staged the disease’s progression as 111C meaning it had invaded surrounding lymph nodes and tissue. We both were aware that people can live without an appendix, but we never associated cancer with this small organ which only measures 2-20 centimeters in length.
We also learned that most appendix cancers are found through routine surgeries, as was Don’s, making early detection difficult. Don and I discussed his symptoms prior to his cancer diagnosis because we wanted to pinpoint when his cancer started.
Of course, there is no way to say for sure, but we remembered that he suffered for several months prior to his surgery with an intense abdominal bloating. He frequently experienced a tight, large, belly bloat that was hard to the touch. It felt like a basketball. It was a painful bloating that would eventually dissolve and give him relief. This bloating only occurred every couple of months, so Don didn’t associate it with anything serious or life threatening.
The bloating may have been an early sign we ignored. Perhaps if we had investigated the cause of his intense bloating, we could have caught the cancer before it spread.
Most mucinous adenocarcinomas are more aggressive than regular adenocarcinomas and are harder to treat. All in all, the prognosis wasn’t good. Left untreated, the tumors would continue to grow, crush all organs, block digestion, and eventually starve its victim to death.
SEARCHING FOR ANSWERS
Once Don’s cancer was diagnosed, we began a desperate search for a proven path of treatment, relying heavily on Dr. Google to educate us on appendix cancer.
There are valuable resources online, like ‘The American Cancer Society’ which helped deepen my understanding of cancer. There are also great blogs posted by individuals fighting this disease.
The rarity of appendix cancer – and the lack of data – quickly dashed our hopes, because there weren’t any proven paths of treatment. It became my mission to comprehend the stages of the disease. Through my research, I discovered all cancers don’t act or progress the same. This reality is especially true with appendix cancer because of its tendency to develop blockages. There was our first clue to Don’s bloating: it had been caused by blockage from a tumor.
NOT ALL TUMORS ARE THE SAME
Mucinous cancer tumors, as in Don’s case, grow in characteristic flat sheets, making them harder to detect in scans. Mucinous Adenocarcinoma tumors produce “mucin” which is the main component of mucous. “Adeno” means gland. Glands release enzymes inside (endocrine glands) or outside the body (exocrine glands). The term “mucinous” means lots of mucous. Put it all together and you get Mucinous Adenocarcinoma, a very deadly form of cancer. Many experts suggest that the presence of mucosa cancer cells can spread faster through the body than other forms of cancer. While not something we wanted to hear, the information was vital to finding the appropriate treatment.
Appendix cancer is extremely rare and only affects 2% of all cancers diagnosed. The disease can be overwhelmingly complicated to treat.
With little information to guide us, cancer became our daily crisis. We didn’t have any problem-solving mechanisms in how to think about the problem of this insidious disease, or how to formulate an outcome to the cancer crisis. Too often we found ourselves with lack of information that’s essential to making good decisions. Therefore, we found ourselves in a vulnerable place, at the worst time of our lives, agonizing over what to do next.
Several doctors were involved in Don’s treatment, including an oncologist, a gastroenterologist, a dietician and his family physician. They didn’t always agree about treatment protocol thus creating a dilemma we didn’t anticipate, nor know how to navigate.
Our battleground during the fight against his cancer also carried a harsh reality: the existence of daily life ‘behind the scenes’, which could change at any given moment. There were good times, better times and times we barely got through.
My best advice to anyone caught up in a battle like ours is to take every offer of help that is made available to you. Especially if you are the caregiver for someone fighting cancer. No one can or should be “The Lone Ranger” as they won’t be effective all the time, as they need their rest too. Offers of help will come in huge waves, especially early in your journey, and its vital that you accept all of them.
IT’S NECESSARY TO ASK SPECIFIC QUESTIONS
With little information on the internet regarding appendix cancer, I took advantage of the many opportunities to ask our doctors lots of questions.
One of my biggest ‘aha’ moments was, unless you ask specific questions, or probe for more detailed responses, you can lose some valuable information that could prove very helpful in your fight against cancer.
I believe sometimes, while talking with an expert on a specific subject, they will select the information they deem important to share. There is a lot of assumption on their part that you should already know this, or they simply don’t find it relevant to mention. These experts have a wealth of information. Sometimes the most important information is not spoken. Sadly, you need to be a strong knowledgeable patient advocate as they won’t always share what you need to hear.
This realization of omitted bits of information from our team of doctors, and the intricate knitting of all information gathered into an understandable format, was the key to acceptance of the disease and our main weapon of defense.
Talking to and questioning Don’s surgeon, and later his oncologist, gave me many pieces of information that finally started coming together. My knowledge investigation gave me a clear understanding of what was happening inside Don’s body and why.
SO, WHAT’S GOING ON IN THERE?
During one of my conversations with Don’s surgeon, he described what the cancer looked like in Don’s abdomen when he performed the surgery. A mucous-like jelly had mutated out of control, constructing its way from inside Don’s appendix out into his abdominal cavity.
There, the substance had formed sun-flowered sized tumors throughout Don’s bowels. These tumors, too many to count, clung to his intestines and spread webs of white on the entire lining of his abdominal cavity. It was then we realized we were fighting against many tumors, not just one as we originally thought.
TREATMENTS OR TRIALS
Once we knew what we were battling, like many in Don’s position, we opted for chemotherapy and its subsequent ravages of the body. Extreme weight loss, nausea, sleeplessness, hair loss, and overall malaise. We figured what wasn’t killing him was making him better. Boy, were we wrong.
Appendix cancer is uncommon, and appendix cancer-specific clinical trials are challenging to find. I learned many clinical trials couldn’t accept a patient who has been treated with chemotherapy within the past year. In hindsight, we would have stopped his chemo after two treatments and joined a trial. Hindsight’s always 20:20. It’s easy to know the right thing to do after something has happened, but it’s hard to predict the future.
DECIDING TO STOP TREATMENT
Don endured four rounds of chemotherapy to treat his cancer. After each round, a CT and Pet scan was ordered to monitor his tumors growth. The fact that Don’s tumors were flat and hidden in tests is a perfect example of what I meant when I said, ‘some doctors assume you already know this information.’ So, even though his tumors showed stability following these tests, our false hope was quickly dismissed once we discovered the tests were non-conclusive. The harsh reality was his cancer had uncontrollably spread. Now, he needed a feeding tube for mere survival.
Then came his second surgery for another bowel blockage.
After this surgery, Don’s cancer was determined to have advanced to Stage 4. It was terminal with no hope for the future. They removed his feeding tube. He was placed under home hospice care.
Don continued to fight his cancer an additional five months, displaying daily acts of bravery amidst his circumstances. He never adopted the attitude of “why me” and instead kept a steady focus on his faith, family and feeling better.
Even in the throes of pain, he was quick to entertain his many visitors, telling jokes and reminiscing on stories from his past, all his way of coping. Oddly, this gave me comfort.
FACING THE END AND FORGING A NEW BEGINNING
Alas, when his cancer progressed toward its final ravages, it was tough. I had to release Don by assuring him I would be fine. I gave him permission to leave this world for a place of complete healing. After putting up the good fight, Don passed away on January 3, 2015.
The war was long, hard, and intense. Finding purpose, or answers, to why God allows for such suffering is yet to be answered in this life. Our personal experience was laced with many emotional highs and lows. I cherish the time we had. Even in the moments of surrender, I was filled with awe and amazement at God’s constant presence.
What Don left behind is something to behold. During his battle with mucinous adenocarcinoma, he became part of a study conducted by “the American Cancer Society,” which tracked his symptoms, his tolerance to treatment, his test results after treatment, the course of this awful disease, and its impact on a person physically and emotionally.
Also, due to the complexity of this rare cancer, mucinous adenocarcinoma, many of his medical team now have a clearer understanding of this rare cancer, which could help promote better treatments and outcomes for future generations.
All cancer is ugly and within striking distance of each of us. My prayer is that no one should have to battle this disease. Part of the healing process after going to war with cancer is sharing information. Spoils of war, I suppose. Yet perhaps my small insights may prove to be significant to you or someone who is battling this dreadful disease and provide another weapon in a much-needed arsenal.