I always knew that cancer was cruel, but what I didn’t know is that so is science. I fought multiple sclerosis (MS) for 40 years, knowing that I was fighting friendly fire. Now I have a diagnosis that even I think is cruel.
Herein lies a sleeping giant called mesothelioma. This thing can be dormant for as many as 60 years. That is all of my life. That could mean that for years, I was fighting MS with all my might, and the whole time, this other thing — that I have just become cognizant of — lay waiting.
Taking Stock of My New Reality
It is amazing to me how people react when they know I have cancer. They almost seem to think I am dying tomorrow when I have no idea what my future holds. One thing I do know is that I am starting to show signs of cancer. This is not forgetting that I am also in the stages of progressive MS. For me, that means I cannot move volitionally. I spend the entire day in a motorized scooter. I don’t even want to think about how that looks to the outside world.
What really blew my mind is that mesothelioma cannot be staged, because there is not enough data, or not enough cases of it. As a matter of fact, my doctor told me there were a total of 400 cases in the United States. My doctor also said that he dealt with more than half of these cases. So all of this gives you an idea of how obscure this is.
The way I think of this is that I shouldn’t even have it. And then if you add the MS onto it, it seems as if I made all of this up. Believe me, I didn’t. In my case, the mesothelioma was traced to the use of talcum powder when we lived in a tropical climate in India when I was a child. It is hard at this point to know if it was anybody’s fault. Regardless, here I am now, in a wheelchair, with a cancer diagnosis.
Symptom Relief and Upcoming Chemotherapy
One of my most profound symptoms is fluid accumulation, called ascites, in the abdominal area. We will soon be mitigating this issue with the installation of an indwelling catheter, so I can empty my own fluid at home.
Up until now, I’ve been doing weekly paracentesis in the hospital. This is a procedure that empties the fluid in the abdomen using a catheter. It’s a procedure I would not wish on my worst enemy.
All of this came about as a result of my partner, David, as well as my certified nursing assistant (CNA) and I taking a trip to New York City to Memorial Sloan Kettering Cancer Center, where I met a world-class scientist who deals with mesothelioma. That doctor was very caring and responsive to my needs. He made it a priority to listen to what I had to say. I declined any surgery or drastic measures, which he didn’t push. Instead, he suggested the catheter and some gentle chemotherapy. I was all excited that I would be able to do immunotherapy, but he shot this down almost immediately because I have multiple sclerosis. So I agreed to what he said and will get the catheter installed this week. The chemotherapy will be next, and I have no idea how I will react to it.
How Cancer Is Affecting My Sense of Taste
My wonderful speech therapist gave me a realistic perspective, saying, “Be mindful: Cancer is cruel, so get used to it.” I found it helpful that she acknowledged that what I was feeling had a basis, and these things were happening for a reason.
This also helped me because my palate was changing. I wanted certain foods and not others. She explained that this change was normal. This was particularly helpful for David to hear. He realized that I wasn’t making any of this up. I reached into a bowl of chips, which I had always eaten, and they tasted metallic. So the cancer was showing itself in this way.
Things have become easier now while eating, as I know it is normal to feel this way. But what a way to feel! Things that used to taste good don’t anymore, and there are certain foods I cannot even look at without feeling nauseous.
Dealing With Stress and the Uncertainty Ahead
I’m hoping that when I drain my abdomen, the less fluid I have, the less my symptoms will be. The fluid draining should be easier once I’m shown how to do it and I don’t need to constantly go to the hospital; the constant energy usage to get to the car and the hospital is stressful, and I’m hoping to mitigate the stress surrounding this issue for me, David, and my caregiver.
At this point, I don’t know how to deal with doing chemo and my treatment for the abdominal fluid. I really feel like I’m in a holding pattern, wishing someone would tell me what to do. I will be bringing this topic up with my clinical psychologist as to how to think about this.
I often wonder if death is something that needs to be addressed now or when symptoms increase. We all look at death differently, but honestly, I feel like I have no conflicts in life and would be free to go. One thing I haven’t said too much about is by dying, my MS is taken care of by just going into an ethereal aura. So I basically would have no more mobility issues. In a way, it’s an out. Strange reasoning?
