Finding the Cause of My Sister's Tragic Undifferentiated Carcinoma of Undetermined Origin
Since my baby sister passed away on April 26, 2016, my waking moments have been spent searching for a definite answer why this tragedy struck our family so severely without ample warning. At a time when we thought she was at the pinnacle of her successful fairytale life story book, who would have thought that her life would be cut off all too soon?
There were tell-tale signs but she ignored them for the most part. When she complained of stomach upsets, bloating, indigestion and related pain, she blamed it on hunger pains or something she ate. She had Zantac at her fingertips to ease her discomfort. When these were accompanied with migraine headaches, she had Ibuprofen to quell those nagging aches. Zantac and Ibuprofen were her best friends. She relied on them so much so that her life depended on them.
The doctors in Fort Worth, Florida could not find anything amiss from the first CT Scan, MRI and blood work done when she was taken to the Emergency Room on April 20, 2015. She was released and given medication for pain. On October 24, she went to ER for the second time as her abdominal pain recurred. She blamed it on indigestion still. She had the same tests done. In addition, ultrasound was conducted and five vials of blood were taken for examination. The result was a duplication of the first one. Nothing unusual was found in the outcome of all the tests. On December 6, she was taken to the ER for the third time. This time the bewildered doctors decided to keep her to give her a thorough diagnosis.
The initial diagnosis was ovarian cancer. For this reason, they decided to transfer her to Sacred Heart Hospital in Pensacola, which was considered to be a better equipped hospital in anticipation of surgery. Once there, more invasive tests were done to ascertain the prognosis. The subsequent CT scan did not confirm the presence of cancer in the ovaries. Additional diagnostic exams followed to get to the root of the problem. Fluids were drawn from her abdominal cavity and analyzed it for cancer cells and possible infectious disease. On December 8, an exploratory surgery/scoping was done. The prognosis was not good and on December 15, she was under the scalpel for eight hours. When it was over, she was at the point of no return. Most of her vital organs were removed leaving the bare minimum for her to cling to life.
At the conference, the family was explained the result of all diagnostic that came back. They said it was Undifferentiated Carcinoma of Undetermined Origin. Colon and ovarian cancer were eliminated as the point of origin and they changed that diagnosis to Incurable UGI cancer (Upper Gastrointestinal Infection). They never found out how, where or when it started. All they did was harvest any and all organs that were affected or infected with the monster called UGI cancer. They removed the ovaries, appendix, kidneys, and cut out a big portion of the large intestine. The subsequent CT Scan showed leakage from the intestine resulting from the debulking that has now metastasized and saturated her insides. There was no possible way to go back and fix the leak with her frail and weakened condition. All they could give her were painkillers and antibiotics to control the infection.
The shocking announcement came a week later when she was pronounced terminal. She was on life support for the next two weeks. The family was directed to consider hospice care and prepare for an eventual death to take place two to three days after her IV antibiotic course was completed. Death would most likely result from sepsis.
The most discouraging thing was for the family to be told that UGI cancer would not respond to chemotherapy. There was no encouragement to seek other treatment options. Even participating in Clinical Trials was discouraged. Her doctors believed she would not recover enough to seek treatment. Death was inevitable and the family was directed to prepare for funeral arrangements.
She expressed her desire to live longer by pursuing and exploring other avenues of treatment, be it experimental or whatever. But, she was told that she would not even qualify or meet inclusion criteria for Phase 1 Clinical Study with immunotherapy. The Adenocarcinoma was too far gone when it was discovered and no treatment would make a difference. It had already metastasized extensively even before the debulking surgery.
Therefore, having no positive nod from her specialists, she decided she wanted to spend the rest of her remaining days at home. Amazingly, although the attending oncologist said that she would have a mere two to three days survival after the antibiotics are withdrawn, by God’s abiding grace, she survived for four months under hospice care and the loving care of family and close friends.
With one last ditch effort, she was taken to MD Anderson Cancer Center in Houston, Texas that Easter week in March. There, she underwent more extensive examination and treatment that was remotely possible to imagine. After three weeks of battling with the monster, the doctors threw in the towel. There was nothing else they could do to prolong her life. She asked to be taken back to Oceanside, California and be put to rest at Eternal Hills Memorial Park where our family has a plot.
Eight days after arriving, on April 26,2016, my beloved baby sister gave up her fight for life and went back to the Lord. The comforting and wonderful thing about it was that she knew where she was going. She trusted in the Lord and loved the Lord.
There is never a day that I don’t think about her. She is constantly in my thoughts awake or asleep. My writing has been paralyzed by this traumatic tragedy that befell us. I just couldn’t organize my thoughts to say the right words and pen them down in black and white. I culled the childhood memories we had together. I searched for the little conversations, the jokes, the little disagreements, the tete’-a-tete’ we used to have and the dreams we shared as only sisters can. I dream about her often and in my dreams, she’s happy as ever. We talk, we hug, we interact as if she’s still around. I never want to wake up when these dreams recur.
That seems to be the end of the story, right? No, it is not because I’m still not satisfied with the finality of the doctor’s explanation. I still can’t grasp the thought that my healthy, energetic, full of life sixty-one-year old sister would go so prematurely. This has troubled me to no end until something happened to me a year after her passing.
Last July, I was having unusual abdominal pains. The pain was concentrated in the lower left side of my stomach. At first, I ignored it, blaming it on something I ate, perhaps, something that did not agree with me. Every morning when the pain came on, I went to the comfort room to relieve myself. It frustrates me that nothing would come out. The pain comes and goes, every hour on the hour and every time I sit on the toilet bowl nothing would come out. I was getting frustrated but still didn’t think much about it until it dawned on me that this was exactly what my sister described as her symptoms.
After two weeks of this ordeal - daily running in and out of the bathroom, with nothing coming out, I decided it was time to consult the doctor. This is not normal. I’m regular. I relieve myself every morning. It’s unusual if I skip a day. I could count on it. So, why this?
The doctor initially said that I have diverticulitis and prescribed medication with strict water diet. He said that if there is no relief from the abdominal pain, I should go to the Emergency Room right-away.
Three days later, when there was no improvement, I did go to the ER. A battery of tests was done. I was hoping I would be released and given medication but when the doctor came in, he told me that the diagnostic indicated I had Acute Diverticulitis Infection Unresponsive to Treatment and they will keep me for treatment and observation.
“You did the right thing by coming in,” he said, “We will keep you for a couple of days to stabilize the infection. The worse that could happen would be surgery but we hope we can control this without going with the knife.”
What is diverticulitis? I was given this learning information about my hospital visit that is worth sharing. Some people get pouches along the wall of the colon as they get older. The pouches, called diverticula, usually cause no symptoms. If the pouches become blocked, one can get an infection. This infection is called diverticulitis. It causes pain in the lower abdomen and fever. If not treated, it can become a serious condition, causing an abscess to form inside the pouch. This abscess may block the intestinal track or even rupture, spreading infection throughout the abdomen.
When treatment is started early, oral antibiotics alone may be enough to cure diverticulitis. This method is tried first. But, if one doesn’t improve or if the condition gets worse while on oral antibiotics, one may need to be admitted to the hospital for IV antibiotics. Severe cases may require surgery.
That was my eureka moment! That answers my question about what happened to my sister. She relied on Zantac to relieve her of abdominal pains and Ibuprofen for migraine headaches. She’s been on it for at least a couple of years that I can remember. She never consulted with the doctor.
That infection persisted over a period of time but she was too busy with her work and the pressure to keep the family business thriving that she neglected her own physical well-being.
How I wish that she could have given more importance and priority to herself when there was a suspicion of something awry in her system. She could have enjoyed her luxurious lifestyle longer – well into the normal sunset years.
So, this is my message to anyone who is reading this narrative. Let us take better care of ourselves as only we can. Let us not neglect or ignore tell-tale signs that something is not quite right with us - health wise. And let us talk to others who might know a thing or two about their own ailments that we can learn from. Networking pays dividends. We owe it to ourselves to listen to what our bodies are telling us. After all, our health is our wealth.
And to you, my dearly beloved baby sister, up there somewhere, I love you. I know you love me just as much! Till we meet again at Jesus feet. I hope you have bumped into our manong and our papa when you got there. Rest assured, we will follow you in the sweet by and by.
I look forward to that glorious day when we will be reunited, never to part again. What a wondrous reunion that will be!