Until now, my whole life has largely revolved around multiple sclerosis (MS), which I’ve had for more than half my life! I voraciously consumed any and all information about MS. I actually loved gaining new and innovative information. I was becoming an expert!
But recently, something else has taken center stage.
One day I started noticing that my abdomen was retaining fluid and was hard to the touch. That in itself freaked me out. Then, when I told my speech therapist about it, she got a look of dismay on her face.
Candice has my complete respect in her role as my speech therapist, her knowledge in general, and her ability for introspection. She wasted no time telling me I had to go to the emergency room. I know how that goes: One goes to the emergency room and sits for a long time until someone notices you. And that is exactly what happened. But I did not like the way my stomach was distended. Now I was worried.
Ascites: The First Clue It Could Be Cancer
Later, after the CT scan, lots of other questions and analysis happened. I did not like that part of the visit; it was too much testing. This could mean only one thing: They were looking for something.
The doctor came back through with more information. The fluid in the abdomen was called “ascites.” Someone with cirrhosis of the liver or certain cancers — including ovarian and liver cancers — could have ascites. Now I really was worried.
The next thing I knew, I was having a consultation with a gynecological oncologist who handles various well-known cancers such as ovarian, uterine, and breast cancer. I kept the consultation appointment, mainly to hear what she had to say. She knew about the ascites and had a look of sympathy on her face. You can only imagine what was going through my mind. But I will say, she was one of the nicest people I met. She was caring, kind, and unbelievably sweet. In a way, I liked her so much, but I was not in her wheelhouse. She looked at my diagnosis and handed the baton over to someone who knew more.
Confusion in Confronting the Unknown
What was going on? This all seemed so out of my scope. Well, that was not comforting at all. I then waited for the main doctor, who came by and gave me the impression this was all something to follow up on later. I agreed, and once my partner and I left the hospital, we indulged in a serious discussion. I was so distraught.
Here I was, confronting medical issues I was very ignorant about. Clearly, I needed help!
At that point the chase began. We had to look up oncologists at the hospital. Mind you, these were people I didn’t even have in my vocabulary.
My diagnosis turned out to be peritoneal mesothelioma, which is a cancer in the abdominal area. I sat there in utter disbelief. How could I have cancer? I already fought 40 years of MS being thrown at me. Who could be this cruel? I would say the devil, but in reality, my diagnosis was valid and accurate. There was no devil or saints involved. It was pure science.
Digesting the News and Moving Forward
At this point, I am going through denial and acknowledgment of all of this news.
It is way too hard to process, even as I sit quietly with myself, listening to birdsong. I sat on my porch looking at my small slice of heaven, contemplating what was to come. I am still contemplating. I don’t know the answer.
Since then, we have been able to make an appointment with a specialist at Memorial Sloan Kettering Cancer Center in New York City. This hospital has the top specialists for mesothelioma, which is a very rare and aggressive cancer. Naturally, I am thinking of questions to ask the specialist, but I was advised to let them know my current situation, goals, and quality of life, none of which I would like to alter.
I have the most pleasant environment a person could want, and now I’m thinking about terminal illness? This is definitely a far cry from what I would like to think about. I am thinking about life and death like never before. I think they are quite scary — and to think that my life is finite. The stars in heaven look different to me now. They are so vast and infinite! Life as I knew it has changed.
I put a post on Facebook once I was sure of where things stood. The main reason for social media was so that my family in India could see the news.
I have had time to schedule a video chat with an oncologist at Sloan Kettering, who will listen to my plan, which is very simple: nothing drastic, no chemotherapy or surgery, only immunotherapy, palliative care, and hospice in the end.
