MSI Press Blog

  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

(photo from Wikipedia)   When traditional treatments are not working, cancer patients may want to participate in clinical trials. We did not have the time to arrange for something like that -- Carl was diagnosed very late and endured a very short time. When the cancer became quite out of hand after just three rounds of chemotherapy, the oncologist offered to "look for" a clinical trial, if we wanted one. Of course, that did not work out because Carl died just three weeks later.  However, the suggestion got us thinking. What would be involved in being in a clinical trial and in finding one? What would be the pros and cons? With subsequent research, which we would not have had time to do on our own, given the speed of Carl's demise, I learned some interesting things. On the positive side, clinical trials may provide access to treatments and drugs not yet in (wide) use and will almost certainly provide personalized attention. On the negative side, there is no guarantee that

  A recent article brought back a raw memory:  Dad died 44 days after his cancer diagnosis. He never received the chemo he was promised (msn.com) . That was pretty much what Carl experienced. He fell February 23, was diagnosed with late stage 4 cancer in five organs, and was set up for testing to determine the primary (never was found, and the diagnosis became cancer of unknown primary ). He had to wait to begin chemo until he could receive the second covid shot (remember back then?). Once all the tests and shots were over, it was the end of June. He received three rounds of chemotherapy before falling again on July 23, at which time, tests showed that chemotherapy was not working. From that point, it was only 23 days until he died. It felt like chasing after water as it was flowing over a waterfall. No way to keep up. Would those original 4-5 months have made a difference had he started receiving chemotherapy earlier? It is impossible to know. Could those early tests have been pushed

One of the fun things that a publisher (or at least, an acquisitions editor) gets to experience is meeting more than one member of a family -- as authors whose work we publish. In this series of presenting family authors, we take note of the Leaver writers, who have written books in various combinations and solo. Above pictured is Betty Lou Leaver and Shenan (CB) Leaver, who collaborated on Mommy Our House Guest , a fun book that has gained a number of afficionados and been serialized in a magazine.  Betty Lou, who has written dozens of books, including, for MSI Press, Think Yourself into Becoming a Language Learning Super Star and The Invisible Foreign Language Classroom (with Laura Dabbs) and Carl, who typeset and designed the covers of many MSI Press publications and edited Overcoming the Odds , collaborated on the book,  Intrepid.  who unfortunately passed away in 2021 from Cancer of Unknown Primary, Carl, unfortunately, passed away suddenly in 2021 from Cancer of Unknown Primar

  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

  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

  Although it is often difficult to find time to read while coping with cancer or providing care to loved ones with cancer, following one or more blogs on cancer and interacting with them can bring helpful information and peace of mind.  Here is a list of cancer blogs from the CCC. AONN+ Blog Meant for nurses, the topics in  this blog  are nonetheless helpful for any caregiver, such as this one on  compassion fatigue . There does not seem to be a search function, so you may need to sift through the topics to get to the ones you might find helpful, but the topics can be seen at a glance so it is not unduly time-consuming. Cancer Compass This is not a blog per se but rather an  informational message board  seeking to individualize and personalize information and care. Cancer Support Community Blog This blog  addresses specific cancers on a personal level, includes posts on multiple facets of cancer, and is very easily searched. (One cancer that it does not address is cancer of unknown pr

  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 did not die of colon cancer. He might have had it, but his colon was clean by the time tests were undertaken to find his primary. They never did. The died of cancer of unknown primary (CUP), but there are theories that say that CUP results when very strong immune systems knock out the primary, which then escapes to other organs. In Carl's case, five other organs were under siege, but the oncologist always felt that the cancer had started in the GI tract though it could not be seen there by the time Carl was diagnosed. Carl also did not have a colonoscopy. His perception of it as unpleasant, and his imagination of it as just too uncomfortable, especially the preparation, kept her from scheduling it -- likely to his eternal detriment. That given and said, I was fascinated to find a wonderful little article about how to make it all more tolerable. Short, illustrated, helpful. Read it HERE . For other Cancer Diary posts, click  HERE . Blog editor's note: As a memorial to Car

  The final conversation had with Carl's oncologist was what we needed in our first conversation but did not get. Not quite two weeks before Carl died, at which time he was in a subacute facility, having fallen the week before, been admitted to the hospital, then shifted to the care facility, the oncologist called us with the results of the latest scans. "Not good at all," he said, and he gave us three options: let nature take its course -- Carl could move to in-hospital hospice or in-home hospice (we chose the latter, and while we had a very bad experience with the initial hospice , it was still the best choice) try out another chemical compound - He told us he had given us the most appropriate and strongest ("the best") that he had, but if we wanted to try another mixture, he would look at other options take part in a clinical trial - He did not of any for Cancer of Unknown Primary and would have to do some research; there might not be any, and there might no

photo: care.com When Carl was dying from Cancer of Unknown Primary , we were facing the question of how to handle his 24/7 needs for care. Everything was compressed during that time -- decisions had to be made without the time to reasonably research them and rationally make them. (That is the primary reason MSI Press established Carl's Cancer Compendium : to pull together a lot of the basic, time-consuming research that could be accessed with just a couple of clicks).  When we decided to try chemotherapy, he became not eligible for hospice care. IMHO, there is a problem with the binary system behind hospice availability. Decide to work on dying - hospice is available. Decide to work on living -- you're on your own. Yet, this is exactly the time that patients and their families need help; being on your own is certain to result in a range of emotions, including anger and frustration, as well as poorly informed decisions, burnout from family member who cannot do everything and be