Of Anniversaries, Deaths, Guilt, Remorse, Glory, and Relationships Transcending Death
Today would have been the 54th anniversary for Carl and me. Last year, I spent it in the cemetery with Carl, as I did the year before. This year I cannot because I am in Bandung, Indonesia, but perhaps that is just as well.
On our 51st, he was alive, but not well. Three weeks earlier, he had fallen, been xrayed, and found to be in the advanced stage of cancer of unknown primary, with liver, lungs, bones, and stomach completely riddled with cancer cells, blood clots in his lungs, and his bones throwing off cells to create hypercalcemia, the reason he had fallen.
It was a difficult time. We were just coming out of the covid months. We brought our CHARGE Syndrome son CB who had been living in group homes for 20 years home when they were not careful with protection from covid. At the same time, our spina bifida daughter, who lives about 30 miles to the south of us, independently, with a county-provided part-time aide lost her caregiver to surgery and no one wanted to take over, given the ongoing covid scare. So, I ended up taking care of Carl, son, and daughter, which included an immense amount of travel between my daughter's place, Carl's chemo therapy, doctors for my son, and pharmacies for everyone. I was also managing MSI Press LLC full-time. Somehow, that year, our 51st anniversary just disappeared into the surrounding melee.
As for the level of care they all received, it was minimal. There was just not enough of me to go around. Carl started falling more and, at twice my weight, he was difficult (well, impossible) to pick up. Calls began going in to the local fire house for assistance -- and they kindly trotted up our hill, too steep for the fire truck, to help us.
Many folks helped us, and for that I am very grateful. Nonetheless, I experienced burnout at times, especially on those days when I got a maximum of two hours of sleep. At one point, I fell asleep at the wheel and drove off the road into a field of kale. (It could have been worse than just have to pull kale out of the underpinnings of the car to the tune of $1700.) And I found myself in an unpleasant situation of telling Carl "no" when it came to important changes that he resisted. He did not want to go into diapers. I had to tell him, "No, I will not get up every two hours and help you to the bathroom," which is what his deteriorating bladder needed. "No, I cannot bring you home from the hospital because you have no way to get up and down the stairs; you must go to a subacute care facility." (Even the stair lifts we got at a whopping $11000 because we needed them special made and overnight stopped being helpful when he could not get himself onto them -- even the firemen could not help him do that, so I had not chance at all of success). You have to go to subacute care until our other two kids came home from far-flung places to help out in the final days.
He did not want to admit the days were limited. That also made things harder, but he clearly accepted reality after our priest gave him the last rites. (He died less than 24 hours later.)
There are many regrets from those days, especially the times my patience ran out. The subacute place turned out to be less than desirable, and he hated it there. Kept wanting to leave - kept trying to call 911 to get out of there. Complained to my son that I was not a very good caregiver. (I suppose there was some truth in that.)
He died surrounded by all of our kids and all of our cats. For some reason, no one went to their rooms that night but bedded down in the living room where we have sofas and lazy boys. Since Carl had come home from the subacute facility ten days earlier, he had refused to sleep in the bedroom. He wanted to be in his very comfortable, size-accommodating (more so than his bed), oversized, automatic lazy boy -- the one he bought for himself when he was first diagnosed with cancer. Another lazy boy pulled close, allowed me to sleep against him, which seemed to bring him peace as he slowly began slipping away. He had no pain; he used none of the morphine that was prescribed. He just drifted off until the morning after he received last rites when he took no more breaths. When the rhstopped, and
For over two years, I visited him every day at the cemetery. That was my quiet time with him and the anniversary. Alas, my best friend died in December 2022 of covid, and she joined him in the cemetery, so I would visit both of them at the same time.
An unshakeable sense of remorse, and missing him, and a feeling that he was still part of our lives, led to a feeling that some kind of action was needed -- for his legacy/memory and for working out the sense of guilt. And thus, Carl's Cancer Compendium was established.
I suppose it was a sense of guilt that prompted me to start the CCC web page and the Cancer Diary blog columns that followed. Equally important, though, was to provide the information I wish I could have found quickly without having to invest time I did not have in extensive and sometimes useless google searches for information on what were new, somewhat esoteric, and often obtuse pieces of information that sifted down from medical records, reports of tests, and brief discussions with the oncologist, who was also at a loss to explain where Carl's cancer had come from and yet knowing, even while he prepared the strongest chemo he could concoct, that Cancer of Unknown Primary nearly never goes into remission.
One of the bloggers whose columns have been sustaining through one empty anniversary after another these past three years is Barbara Karnes, whose book on dying helped us through the final days with Carl and whose book on pet death helped me through the deaths of two pets, both from cancer, Murjan and Snyezhka, not long after Carl died.
Ironically, many years ago, MSI Press published a book by Joanna Rommer, Passing On, that should have prepared us for Carl's last days. Somehow, I don't think anyone can ever be fully prepared. And with Carl, there was the sense of indestructibility -- until he was actually destroyed -- because he was never sick. Literally. After his third round of chemotherapy, the nurse asked if he had been nauseated, and he said no. She asked if he had ever been sick, and he responded, "Once." "After the previous round of chemotherapy?" she asked. "No," he said, "when I was 21." It is true. He never was sick, and so we were not ready, not ready at all. And, with covid all around still, we had little support.
With the CCC and Cancer Diary, I have learned that some people who might have ended up as lost as we were have been able to save time, learn much, and make the right connections quickly thanks to the CCC. As often as I can, I add to it. New information, updated information, and just basic information that fleshes out in more detail what is there already.
Yes, Carl is still here in this non-existing form for our 54th anniversary, and for all his fellow travelers with cancer through the CCC and Cancer Diary blog posts.
A life not lived in vain...
Read more posts on Carl Leaver and Betty Lou Leaver, MSI Press LLC founding co-members and staff (typesetter/graphist and managing editor).
Sign up for the MSI Press LLC newsletter
Follow MSI Press on Twitter, Face Book, and Instagram.
Planning on self-publishing and don't know where to start?
in exchange for reviewing a current or forthcoming MSI Press LLC book?
Contact editor@msipress.com.
Want an author-signed copy of this book?
Purchase the book at 25% discount (use coupon code FF25)
and concurrently send a written request to orders@msipress.com.
You can!
Find their contact information on our Authors' Pages.
Comments
Post a Comment