Cancer Diary: (Not) Talking about Death

 

When Carl, MSI Press LLC graphic designer and co-founder, was dying from cancer of unknown primary, which has a very grim prognosis and no routinely accepted treatment, he wanted only hope -- that he would be in the 1% that has been reported to survive CUP at least for a year or more. He steadfastly avoided talking about death with his children, friends, and me. He resolutely did not want to talk to a professional of any sorts although he was willing to talk to a priest friend. Unfortunately, he was semi-comatose and near death before even one meeting could take place, given his frequent unplanned trips to the ER and regular trips out of town for chemotherapy. (The oncologist made an educated guess as to the possible primary cancer and gave two drugs, one a wide-sprectrum which generally does not work well because it is not targeted and the other targeted against his best-guess that the cancer started in the GI tract.) So, when the priest was finally able to connect with us, it was for last rites. That ritual and the priest made a significant difference in Carl's comfort in meeting death even though he could express very little at that point -- he did become nearly completely alert when the priest came in and stayed so throughout his visit. If only the visit had been able to effectuated earlier, perhaps we could have put greater peace to Carl's final months; the priest gave a very different kind of hope, not one associated with hanging onto life.

Although the oncologist made clear that CUP was a difficult and challenging diagnosis, the fact that he also offered a chemotherapy option aided Carl's hope that he could survive CUP, and he held so firmly to that hope that instead of having a positive effect, it had many negative effects, such as

• He did not want to update his will or establish a family trust; it would be admitting that he was dying (yes, he never moved beyond the Kubler-Ross-identified second stage (of five) of grieving -- I would not call it grieving, though it was in some ways such, but rather a phase of facing (or rather hiding from) death; this could have put his family, us, in a very difficult financial and legal position after his death had a lawyer friend not stepped in and gently but insistently moved all of us through the necessary paperwork.
• He did not want to sign an advance directive; he thought it meant that we could and would let him die (that appalled the children and me because that is the last thing that would have entered our minds); as part of the aforementioned paperwork drawn up by our lawyer friend (who gifted us with his time, expertise, and work), Carl at last prepared the advance directive (and I did one for me, too), indicating that an DNR (do not resuscitate) was not his cup of tea and that, if possible, he did want to be resuscitated (as if turned out, it was not possible); through that directive I was able to get him to express his preference for disposal of his body after death (he wanted to do a full body donation to medical research or education), which set us scrambling for how to do that; fortunately, sciencecare.com quickly and expertly walked us through everything (and when the time came, they were respectful, efficient, and kind); that also took care of the cremation needs -- science care did it for us and sent us the ashes once the research/educational use of the body was completed.
• He did not want to sign a power of attorney for the same reason; he thought it took the power of decision-making away from him although we would never let that happen; again, the POA was part of the paperwork our lawyer friend prepared, and it became very important right before Carl died and even after he died.

Thankfully, Carl did not suffer much at all physically, other than being unable to walk near the end of life. He was not in pain. Even chemotherapy did not phase him. He was not one to be sick in living; he was not sick in dying. After his third round of chemo, the nurse asked him how it went. He said, "Just fine." When she queried whether he had ever vomited, he said just once. She asked for clarification as to whether that once was after this third round, and he said, "No. When I was 21." That was accurate. I remember that day, the only day in his entire life that he ever vomited. Nor did he exhibit anxiety or express the need for any pain meds. We returned the anxiety meds unopened as well as two of the three bottles of morphine. The third bottle has been used on three occasions with very minor amounts of morphine; he wanted no more than that and did not act as if he were in pain except for an open sore on his leg, which we treated with lidocaine spray.

What he did not suffer physically, I think he made up for in emotional suffering. Since he never expressed it nor would talk at all about dying or even his medical situation, I have to assume that the silence only made his emotional suffering worse. But perhaps I am wrong. As an introvert, perhaps the silence was actually his way of coping. I will never know because he never told.

His silence on the topic (he talked about lots of other things) made the rest of us uncomfortable and concerned. However, if silence was indeed his coping mechanism and not his means of torment, then, for certain, he had a right to silence.

Talking or not talking about his death with him is a topic that will stay unresolved with me forever. As an extrovert, I would have talked and talked and talked with anyone and all. That was not his way. For me, silence impeded closure -- and I will not have closure. The question in my mind will always remain, did Carl have closure? I know he did after the priest's visit, but did his silence bring any closure earlier than that? I do not know.

Barbara Karnes, a professional in the hospice world, has a thought or two on this matter as it relates to professional caregivers and medical professionals. You can read about it here: Should I Tell? Discussing Terminal Prognosis – BK Books.

For other Cancer Diary posts, click HERE.

Blog editor's note: As a memorial to Carl, and simply because it is truly needed, MSI Press is now hosting a web page, Carl's Cancer Compendium, as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The CCC is expanded and updated weekly. As part of this effort, each week, on Monday, this blog will carry an informative, cancer-related story -- and be open to guest posts: Cancer Diary. 

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