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Cancer Diary: Iconize, Minimize, or...? Moving On in Little Ways

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  When Carl first died, a friend sent me a little book, wonderful in its pragmatism and understanding of the immediate-after-death emotions and psyche. That book pointed out that widows (or widowers) have a tendency to turn the former spouse into an icon. (Well, some of them do, anyway, and that, according to the little booklet, makes it difficult to move on or even to maintain a normal range of sanity. I realize that I was doing just that -- not wanting to change anything in the house or how anything. I also put a picture in every room. Reading that booklet, I realized that I was indeed iconizing Carl. In an opposite manner, some people, perhaps many people, completely change their life and lifestyles after the death of a spouse. This was clearly expected of me. I cannot begin to count the number of real estate agents who contacted me for the first weeks and months after Carl died, offering to sell the house for me. I guess that would be a form of minimization. I had no desire to sell

Cancer Diary: Late-Stage Cancer Diagnosis: Fast-Tracking Decision-Making on a Roller Coaster

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  Earlier, I wrote about the two paths that erupted in front us when faced with a late-stage cancer diagnosis: to focus on living or to focus on dying. There are so many problems and so much confusion when told after a fall or a blood test or something else that seems otherwise innocuous that your loved one has advanced stage 4 cancer.  The worst thing about a late-stage diagnosis is time, or the lack thereof. Not just the time left for a cancer victim to live, but the time available to make decisions.  The first decision--to treat or go on hospice --is a significant one, and there is often no time to really think in through. From my own experience with more than one relative diagnosed with more than one kind of cancer at an advanced stage, there is an automatic, nearly instinctive choice made, not a reasoned one. Got insurance? Treat the cancer. Don't have insurance? Don't treat the cancer. Those are clearly not the most logical or even medically best or viable criteria, but

Something to Think About - Donating a Cancered-Killed Body to Science

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Watching the always-obese Carl waste away from cancer (though he still had quite a bit of poundage when he died) evoked terribly deep feelings of helpless and frustration. We were losing the fight to keep Carl healthy, and Carl was losing the fight to stay alive. Some days, it all seemed so pointless.  One bright light that we experienced near the end was that perhaps some good could come of Carl's experience. Yes, there is good that comes from sharing experiences, such as through Cancer Diary. But there is something more: whole body donation so that researchers can learn more and medical students can be trained.  Carl wanted to leave that kind of legacy and, the father of a neurobiology professor who had needed cadavers for her training, wanted to help out medical students become better doctors, and if some research into cancer of unknown primary, of which little is known, could shed a little more light on a dim subject, then he was all for that, too.  We researched and found an o

Of Anniversaries, Deaths, Guilt, Remorse, Glory, and Relationships Transcending Death

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  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

Cancer Diary: The Frustrations and Obfuscations of Cancer of Unknown Primary (Occult Cancer)

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  Carl, whose experience launched this blog and the MSI Press's Carl's Cancer Compendium (CCC) died after a very short 5 months post-diagnosis of occult cancer, or, as the official term goes, Cancer of Unknown Primary (CUP).  Carl fell February 23 and went to the local hospital where staff found advanced stage 4 metastatic cancer in five organs and subsequently transferred him to Stanford University Hospital, stating he would not likely return him. He did return home, for a brief four months--and he died at home on hospice almost a month later, having spent only 10 days in that capacity.  Stanford spent almost a month trying to determine the original cancer that had spread to these five organs (none of these organs was the original.) That is the problem with CUP. Finding the original seems out of reach and a guessing game. The doctor made his best guess, based on the spread pattern, but the cocktail he came up with for chemotherapy while doing no harm also did no good. The pro

An Anniversary Apart: Managing Grief

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  Last Sunday, 3-20-2020, would have been the 52d anniversary for Carl and me had he not died in August. I make this post here and not Cancer Diary, although Carl died from Cancer, because Carl was an important member of the MSI Press staff from its inception in 2003 until the month before he died. He was still working on typesetting tasks on July 23, 2021 when he fell and was admitted to Stanford, then sent home on a very short 10-day hospice.  I am also including it here, on Caturday, because our cats were a very important part of Carl's life. Particularly Intrepid, who lived up to his name yet snuggled with Carl every night and, like Carl, died of cancer three years ago, resulting in a book named after him, and Murjan, shown here, who never know whether he was dog or human but certainly did not consider himself a cat, could be found at Carl's elbow every day, especially at mealtimes. He was a very polite cat and would wait his turn for food, and one could have a fairly long

One Year Later: Remembering a Co-Founder of MSI Press LLC

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  We pause our Tuesday talks with authors to share information about to share our activities today, August 16, the one-year anniversary of the death of Carl Leaver, MSI Press co-faounder, primary graphic designer, and usual typesetter. We asked everyone who knew him to eat a piece of chocolate in his memory. It is not too late for others to do the same. Rather than repeat the in memoriam statement of a year ago, here is the link: IN MEMORIAM CARL LEAVER . More posts about Carl can be found HERE .  We began the day at the cemetery, beside his vault, and shared a rosary and his favorite breakfast -- corned beef hash -- with him, placing a favorite tablecloth from Damascus, with fine gold-thread embroidery that is unique to that area where Carl had spent time. Then we took some coffee cake bread to the firemen who so many times during the last months of his life would come and pick him off the floor or take him to the hospital. After that was lunch with friends and the priest who had org

Cancer Diary: Spiritual Aspects of Dying - Anointing of the Sick (Last Rites)

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Whether you call it Anointing of the sick, Sacrament of Extreme Unction, or Last Rites, the ceremony of a priest spending time at the end of a dying (from cancer or anything else) parishioner's life can bring peace to family and friends. I am pretty certain that Carl held on until that happened. He was mostly in some other world, not comatose but not present to those around him either, during his last couple of days. He had all the signs of being in the last hours (not days) of life but seemed to hold on. He knew our priest would come on Sunday morning.  On Sunday morning, I alerted the priest to the near-comatose state of Carl. He responded, "We will take him as he is."  However, the minute he spoke Carl's name, Carl's eyes flew open, and he smiled, responding with cheer and apparent happiness, "Oh, hi!" Carl surprisingly followed the rite although it was clearly difficult for him at times to fight to stay in the present. However, that is clearly where

Cancer Diary: Yeah, Carl Lost a Lot of Weight, but It Was Nothing to Celebrate

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Carl, so proud in his new, smaller, fully fitting Scott vest   Indeed, several months before Carl was diagnosed with advanced metastatic cancer (stage 4), he lost quite a bit of weight. Nearly 50 pounds overnight. Now, he was big, very big. Any weight loss, in our thinking at the time, was to be applauded. And so, he ordered s smaller Scott vest and showed off his new slimmer self. (Not slim, mind you, but slimmer -- he was still nearly 300 pounds when he died.) What we did not realize -- and I certainly wish we had is that such a weight loss is not to be celebrated. It is a sign of dying, or at least, of advanced cancer. Instead of showing off his success ("achieved" -- more accurately, "experienced" -- though he was not on a particularly regimented diet), he should have been rushing to his doctor and asking, "What is wrong with this picture?" Perhaps, hopefully, the doctor would have figured out the cancer diagnosis early enough to do something about it,

Cancer Diary: He Lay Dying a Long Time - We missed the early signs, ignored the warning signs, and excused bad behavior

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  Recently, a Cancer Diary post addressed what all too often happens when cancer is diagnosed at a late stage, especially at advanced Stage 4. But how do you get that far without a diagnosis? In Carl's case, we missed the early signs, ignored the warning signs, and excused his bad behavior. Early signs The early signs were mostly associated with our expectations of aging. He was getting into his seventh decade. So, we were not surprised when he was no longer up for hiking mountains or spending eight hours a day on the job. In fact, I was always coaxing him to put just a little more time into working since working from the same office, I was quite aware of how much effort I was putting in on a daily and even hourly basis than he was. I chalked it up to his being lazier than usual as he aged. (Work was never where he wanted to concentrate his efforts, anyway. He was an ESTP on the MBTI, someone who loved to play, put things off, and spend time in the outdoors.) But even some of that