MSI Press Blog

  Carl died of cancer. That much is true, and terrible, and simple on the surface. But the story is more complex than a single disease. COVID-19 didn’t cause Carl’s cancer—but it surely made his path to diagnosis, care, and support harder. It distorted the shape of the last chapter of his life in ways that were subtle, cumulative, and unforgivable. Carl’s cancer was diagnosed late. How late, we’ll never know. But we do know this: in the early months of the pandemic, Carl’s doctor wasn’t seeing patients in person. Like many, he was doing only virtual visits. So when Carl started losing weight—quickly, inexplicably—it was easy to dismiss it as something positive. Carl himself believed it was a good thing. He looked thinner, healthier even, after years of carrying extra pounds. In a regular year, a doctor might have seen the warning signs: how the weight was distributed, how Carl moved, how he looked close up. Maybe they would have ordered tests earlier. Maybe they would have caught i...

  Not everyone wins their battle with cancer. As painful as that is to say—and even harder to write—it's true. For those of us walking this road alongside someone with cancer, we carry hope, strength, and belief for as long as we possibly can. But sometimes, the ending isn't triumphant. Sometimes, it's simply… the end. That was the case with Carl . Carl had Cancer of Unknown Primary ( CUP ), one of the most elusive and aggressive forms of cancer. With no known origin, it hides in plain sight and resists targeted treatment. Fewer than 15% of patients with CUP survive beyond one year, a statistic that, while low, has improved considerably since Carl fought his battle. When Carl knew the miserable odds, he believed he would be one of the rare exceptions. He expected to win. That expectation, though inspiring in the early days, slowly became a barrier. As his body declined rapidly over five short months, the signs were all there: treatment wasn’t working, strength was fading, ...

  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 ...

  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...

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 ...

  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 tak...