MSI Press Blog

  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

  Carl died of Cancer of Unknown Primary -- never could find the original cancer; CUP is frustrating that way. Of the cancers that were known, stomach cancer was one of the five cancers that wracked his body. We did not know anything until it was too late. Carl lived only five months after his initial diagnosis. Had we known what to look for -- and even though to check out little aches and pains and oddities -- he might have fared much better.  For those still living with what may seem like little aches and pains and oddities, here are some  Stomach cancer: causes, warning signs, and treatment (msn.com) . For other Cancer Diary posts, click  HERE . Blog editor's note: As a memorial to Carl, and simply because it is truly needed, MSI Press is now hosting a web page,  Carl's Cancer Compendium , as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/o

  I have raised two children who were not supposed to live because of the type of birth defects they have. Today, both are in their 40s. I know how to care for someone whom I honestly believe will -- and who does have a hope to -- get better. There was always the struggle of making sure they got the meds they needed, that they did the kinds of activities they needed to do, that their father, Carl, and I researched everything that was going on in medical research about their defects and brought it up to their doctors, and that we interacted actively with all specialists working with them, asking for clarification for us at time and for them at times, ensuring that they knew as much or more than we did. It was purposeful care that had an expected point of diminishing need, with the reins turned over to the children as time passed. Time, then, was a positive. It allowed us to build a brighter future than an initial diagnosis proposed. Things got better over time. The kids gained skills an

(Carl, returning from chemotherapy, getting out of car and onto chair lift)   An inescapable decision--and a potentially life-changing one--can be whether or not to provide chemotherapy at advanced stage 4 of cancer. Chemotherapy given when a cancer is incurable (and side effects are minimal, manageable, or acceptable) is called palliative chemotherapy .  As with nearly anything medical or existential, there are pros and cons.  On the PRO side are the intents (if actually realized) shrink the cancer reduce the symptoms (e.g., pain) improve quality of life prolong life On the CON side are the peripheral aspects uncomfortable and/or disconcerting side effects (the same that accompany any chemotherapy: nausea; neuropathy; in the case of some compounds, hair loss) "end of life" chemotherapy can feel like grasping at straws, especially when/if the intents are not all met or met at all (an emotional side effect of depressions, desperation, anger--it depends upon the person) difficu

  image from www.cancercenter.com When Carl was diagnosed with cancer, our vet-oncologist, who was successfully treating several of our cats who have various forms of cancer -- skin cancer, lymphoma, breast cancer, lung cancer -- with immunotherapy and encouraged us to ask for immunotherapy for Carl. If only... As it turned out, immunotherapy has to be targeted as the primary cancer organ, and that organ could not be found for Carl, who was eventually (but quickly) diagnosed with cancer of unknown primary (a very rare and deadly form of cancer, but we have heard of a couple of other folks in our social circles who experienced it -- and died as quickly as he did). Fortunately, for most of the organs, there are now immunotherapies (and research is finding/creating more). So, most people now have a choice between chemotherapy and immunotherapy -- and maybe some other treatments. For an updated list from the Cancer Research Institute on the latest immunotherapies, check here . This page a

As with Carl, many people have "signs" of cancer that can be interpreted either as something else quite mild or dismissed entirely as just a bad day or maybe I ate something bad yesterday. Otherwise quite healthy people simply ignore them as an annoyance. (Before cancer, Carl was sick just one day in his life -- 50 years earlier he threw up, once, on the lawn, from unsuspectingly drinking stagnant water the day while carrying out his Forest Service employee duties, Seriously. Never again did he ever throw up even after three rounds of chemotherapy, but he died, healthy, from cancer!)  This is the insidious nature of cancer. Often, you just do not know you have it because the signs are so innocuous until it has taken over your body and is in the winner's circle -- and you have an incredibly difficult battle to get your body back -- and many people lose that battle every single day. This is especially true of "toilet information." Change in bowel movement is prett

  This is a short post to bring some new information about CUP, a deadly kind of cancer -- the finding that alcohol has been found to be a significant risk factor. This is helpful information because so little is known about CUP -- and if you don't know the primary cancer, how on earth can you figure out the risks? This article shows research that has correlated the risk factor of drinking alcohol directly with CUP, as opposed to most research which only draws indirect conclusions. (Note: Carl died from CUP and was not a drinker, but, of course, risk factors are just that -- risky and factors. They are not straight-line cause and effect situations. As I have noted in other posts, I think his very good immune system actually did him a disservice, but, as I say, that is in a different post.) Read more posts about CUP HERE . Read more about Cancer Diary posts HERE . Blog editor's note: As a memorial to Carl, and simply because it is truly needed, MSI Press is now hosting a web pa

  Recently on Twitter, a cancer victim complained that friends kept elatedly sending her information about a potential cure for rectal cancer. She suffers from breast cancer! Sort of like rubbing salt in a wound, but the confusion is understandable for those who know little about cancer. Our vet (oncology expert) suggested that we ask Carl's oncologists to consider immunotherapy for Carl. We clung to that possibility initially since immunotherapy had thrown our little Snyezhka into full remission after having been given a maximum of four months to live. Nearly two years later, she is still with us and is healthy.  Carl was given just days to live when he was diagnosed with advanced metastatic cancer involving five organs. We clung to the hope that Stanford University Cancer Center might recommend immunotherapy; that was one of the possibilities the oncologist mentioned. Yes! However, immunotherapy is highly targeted -- against the source cancer. Test after test ruled out each of th

  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

  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

  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