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 power the generator

  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

  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

  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  ag

  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 of curiosi

  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 grandchildren, two wi

  By the time, Carl was diagnosed, his cancer was metastized to his liver, lungs, bones, and upper stomach. After many biopsies and scans, the primary could not be found, and the cancer was officially labeled Cancer of Unknown Primary . Impaired Mobility: harder and harder to walk and climb stairs     We associated this with worsening of gout, which had been present for more than a decade     This could have been due as well to cancer-related hypercalcemia and bone cancer Frequent urination     We associated this with normal aging     This could have been related to  prostate cancer (not the case with Carl but the case with many) Pain in the side     We associated this with a gallbladder attack; it appeared similar to what our daughter, who had her gallbladder removed, had gone through.     We did not know that this same kind of pain is diagnostic of liver cancer. Frequent dozing off while working on the computer or watching television We associated this associated with  fatigue from t

Dear Carl, Tomorrow is Valentine's day, the first one without you. I want you to know that I received the note above a couple of days after you died. I do not know why it took over a week to reach me; perhaps I was distracted with your dying and spending every minute I could with you even though you were barely aware (seemingly) of what was going on around you. I am told that with the brain fog from hypercalcemia and chemotherapy, it would have taken much effort for you to be able to get online and write this note. I am so glad that you did. That note is the centerpiece on our bureau now. Thank you, too, for the poppies. I know you loved California poppies; that is why I asked you to send me poppy flowers after you died so that I would know that you are okay. Well, even though all the flower books say that poppy season ended six months ago, you have done a good job of keeping at least a couple of the poppy plants blooming. The one at the bottom of the hill had three blossoms yester

  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