End of Life No. 6 – The PMP Awareness Organization says, “Appendix Cancer (Appendiceal Carcinoma), PMP – Pseudomyxoma Peritonei, and other Peritoneal Surface Malignancies are very rare and are all too often misdiagnosed, mistreated and poorly managed – (their) aim is to change that.” I wish them a lot of luck. Meanwhile, the sense of hope their web site exudes has bypassed one of the trailers in Hemet, CA.
If you’ve read earlier posts in my ‘End of Life’ series, you know that my father and his friend Smitty were preparing for a trip to Lake Tahoe. These are a couple of old guys, but the plan was to spit age in the face then drive 466 miles to a week of eating the wrong foods and kicking back. I joked that there would be more napping then adventure, but it sounded like a fantastic thing for an octogenarian to do.
Unfortunately, you may have deduced from the title of this post that their plans were interrupted. Some medical tests were run, others were scheduled, complications intervened and the trip was canceled. As it turns out dad might have been able to make the trip anyway. We encouraged him to do that. He would have been even more fatigued, would have fought gastroesophageal reflux disease (GERD) more than usual, the miasma of approaching cancer might have dampened the chatter some, but PMP is a slow moving form of the disease.
How much time, and the demoralizing ambiguity of his situation, have since weighed heavily on him. Dad has gone from being an overweight, yet energetic guy, to the emaciated figure of a man battling advanced cancer. When I visited recently he showed me the loose skin on his arms and chest, his withered thighs, and he whispered, “disgusting.” Dad’s face is pallid. Every aspect of his being is diminished except for his abdomen, which grows constantly. The street term for PMP is Jelly Belly, something that PMP victims and cancer advocates frown on saying. PMP produces a thick, sticky mucous that invades every crevice of the abdomen. In most cases, and in Dad’s case, the cancer is not discovered early. Often it is found inadvertently. For example, it may be discovered while a surgeon is doing a hernia repair. The discomfort of trying to force a milk shake into a basketball produces indigestion, GERD, even vomiting.
Identifying the precise initialsource of the cancer can be difficult, but the results of having cancer in the abdomen are not difficult to diagnose once it has advanced. Knowing the initial source is no longer the issue. Hundreds of small tumors invade the omentum, which is tissue layered between the abdominal wall and the organs and intestines within. The omentum plays a vital role in support of those organs and intestines. In my father’s case, PMP is a constant source of mucous. The stomach swells, fatigue sets in, and left untreated the pressure from this process causes blockages, disruption, death.
The good news for all PMP survivors is that it is a slow-growing cancer that rarely spreads to other organs. There are treatments that can extend life. For some, aggressive treatments can render PMP victims virtually cancer free. I won’t go into treatments here, except to say that aggressive treatment is not advised for frail bodies.
The cancer that has taken dad invades the whole family, with ambiguity. We don’t know the source of the initial cancer (most start in the appendix). We don’t have any real idea of whether he can or should commit to surgery, and if so, how aggressive the surgeon should become. Dad is no longer wondering if he is a candidate for various aggressive treatments but there are lesser options. The most likely procedure is laparoscopy where they will remove as much fluid as possible, in the least invasive fashion. Even this procedure is traumatic, uncomfortable, and eats up time during recovery. Where aggressive surgery might buy a year or even two, we have no idea how much time this procedure would buy. Dad had laparoscopy once before, a mild exploratory procedure. At that time they three liters of fluid. By the time dad goes in again he may be carrying around 15 or more liters. How much of that can they …?
So here is what dad is doing with the ambiguity. He tries to get out of the house when he feels strong. He sits on an exercise bike sometimes, or tries to at least stay moving. He modifies his eating habits with small amounts of food taken multiple times a day. This helps avoid the inevitable nausea and GERD. He is visited by friends sometimes, and by my brother’s family. The worst is to be alone, and yet he needs a lot of down time, alone time, just to cope. “A good day is when I can get a couple hours to sleep without interruption,” he said in a recent phone call.
Dad’s stomach is, in his words, hard as a drum. His surgeon has suggested he wait on surgery as long as possible because of the potential for degradation in the quality of life after the procedure. If multiple procedures are in his future, stretching them out, giving as much time between them, is about the most strategic thing to do. And yet it’s hard to endure for him, for mom, for my brothers.
If you read this far, you have a personal interest in dad, or in the subject. Here is my observation. Faced with formidable cancer, communication is often reduced to discussions about what we eat, how we feel, whether to have surgery or not, the processes we are involved in coping with. Living in the present is all good. But in the present there is much more than all this talk about cancer, procedures, the immediate future.
In the quiet moments when dad is alone on his bed I know he returns to various memories and emotions. He wants to know if he will make it through surgery and what that means, but he also wants to know if he did well as a father, minister, husband and friend. Yes he did. He needs to know that his kids are doing well. That is pretty much the case. Is he loved? Yes. I love my father. Do I miss his company? I do. Am I saying goodbye to dad in this posting? No. We have a good long way to go yet and I’m proud of how he is making the journey.
In the next posting, we will talk about the role medical procedures can and cannot play in extending life.