MSI Press Blog

  from treatment and recovery systems Many of the decisions that that Carl made in the last few months of his cancer-riddled life were completely irrational. In some cases, I did not know enough about the situations to know that they were irrational; they did not seem right, but the contractors went along with Carl. After all, he was paying, so it was his decision even if irrational.  Examples?  He had the sump pump behind the house removed and the area filled with concrete. During the first tremendous rains -- California's 2023 crazy storm season -- we ended up with a backyard swimming pool. The plumber reinstalled the sump pump.  He set up three generators (one probably would have done) powered by a wind turbine (we do have a lot of wind here) to maintain electricity if the power went out for a long period of time. Yes, we are on top of an earthquake fault, but we had not lost power for more than a couple of hours -- ever. And have not lost it at all since. To powe...

  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...

  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...

  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...

  Looking back on Carl's cancer, our cats' cancers, and cancers among friends and family, we should have seen the signs, which would have led to better decisions and, likely, better outcomes. But they were small changes, slow changes that we got used to gradually without thinking back to what things used to be like.  One day, Carl forgot where the brake on the car was and pushed the gas pedal instead. Scary! Could happen to anyone, right? That was a few months before his late stage 4 metastatic cancer diagnosis, with hypercalcemia (which really messes up the brain). A small sign, but we missed it. His growing tendence to leave dishes to do until the next morning of plants to water the next day. Lazy, right? That started maybe a year out before the cancer diagnosis, likely about the time his organs were being attacked and overwhelming his immune system -- and likely his energy. A small sign, but we missed it. There were more. If we even noticed them, we dismissed them all as...

  Carl , who died from cancer August 16, 2021 would love to see me wearing my non-slid slipper sox . He was constantly slipping as he tried to walk with his walker, unbalanced from hypercalcemia. He found these sox online; they are stronger than the typical non-slid sox (click the link above to get to the sales site), warm, form-fitting, and comfortable.  I was always slipping when I tried to pull him up from his chair after he became too weak to stand on his own. I was barely strong enough to lift his 275-pound body with some help from him, and having sox skid me along the floor because his weight was more than my bicep strength created a dangerous situation. So, he ordered me several pairs, which came just as he was dying. I never got to wear them. He was in a Hoyer lift for transportation at that time. After he died, though the need for super-floor-sticking no longer existed, I cleaned his drawer and gave his sox (too big for me) to my son and daughter, whom they fit. Out o...

  In March, Carl was diagnosed with advanced stage 4 (metastatic) cancer of unknown primary. In August, he died.  When we got the diagnosis, we had to choose a detour from our normal life. There was no way to move straight ahead with life as usual because, you see, there was this big obstacle, called cancer, straight ahead. So, the question was to detour to the left and choose a treatment option, hope, and focus on the living or detour to the right and let nature takes its course, choose to accept the situation at face value, letting nature take its course, and focus on the dying. To fight or to surrender? There was no logical superiority of either path, not knowing what lay behind the cancer tree and how long was the path for it  continued out of sight. We decided not through reasoning but through conditioned reaction to fight. That is what we had done all our adult lives, as we successfully navigated life for four children, two with rare birth defects, and three grandch...

There are salt lamps glowing in the bedrooms again. For five long months, their light bulbs burned out one by one, quietly surrendering to the dark as I didn’t have the time — or the clarity — to replace them. There was no time for anything outside the urgent, consuming task of caring for my husband Carl as he moved through the final stage of his life. It started with a fall. A routine day, until it wasn't. Tests led to more tests, and the doctors came back with something I wasn’t prepared for — stage 4 cancers. Not one, but five: liver, lung, skin, bone, and stomach. Cancer of unknown primary. Nothing they could point to. Everything failing at once. He lived five more months. At first, we tried chemotherapy. When it failed, we shifted to palliative care. I say “we,” but it was me who made those shifts, who bore the weight of each medical decision, each adjustment, each indignity he faced. And it was me who stayed awake at night, while others slept, making sure Carl didn’t fall, di...