MSI Press Blog

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

  Probably everyone has a little video in mind as to how they would like to spend their last few minutes on earth, i.e. how they would like to die. Far from all experience their imagined scenario. Carl was fortunate to die surrounded by family and cats. Even though nothing was said, it seemed like everyone understood that Sunday night would be Carl's last (he died early Monday morning). No one retired. Carl slept in his favorite lazy boy lounger in the living room -- did not want to be taken to his bedroom. I slept in the lounger next to him and leaned up against him. It was much more comfortable than it may sound. Our sons were on the living room couches, and our daughter was in a matching lounger right behind Carl and me. Carl slept with his legs elevated, as always, and his beloved Happy Cat and Snyezhka slept under the footrest. Another four cats, including Murjan , himself dying of cancer and in what turned out to be the last month of his life, were scattered around the livi

Carl frequently complained of being cold during the last two months of living/dying with cancer. Even with the heat at, for me an uncomfortable, 72 degrees (when we typically maintain it at a comfortable 66 degrees). Even when wearing a sweater or even something heavier and smothered in blankets. He was always complaining about being cold, and only after he died did I find out why -- and that he really was very cold because body temperature drops when someone is dying. We were constantly struggling over how to compromise on temperature. My son and I were extremely uncomfortable with the amount of heat Carl would set the thermostat for, as well as having concerns with the cost of the amount of gas needed to keep the house so hot (dying can create immense financial stress -- a topic Cancer Diary will address in the future).  In general, cold registered for me, having grown up in Maine and having spent a few winters in Siberia, pictured above, on a very different scale from the perceptio

  1948-2021 It is with great sadness that MSI Press notes the death of Carl Leaver, CEO of the Press and typesetter and graphic designer par excellence . Many authors have expressed not only condolences but also a sense of legacy from covers he designed that they love.  Here is his obituary: On August 16, 2021, Carl Don Leaver of San Juan Bautista passed into eternal rest. A forester with the US Forest Service in Idaho and Montana, he turned to nature photography while working in the Bitterroot National Forest. His photographs graced national magazine covers and on a weekly basis the local paper of Hamilton, MT, the Ravalli Republican. He later worked on photography projects for the US Army (AFEES) and taught photography at the New York Institute of Technology in Amman, Jordan. His final career change led him to computer graphics and publishing as co-owner of MSI Press LLC; his many typeset books and book covers have helped MSI Press authors win a large number of awards over the years,

  When Carl , MSI Press LLC graphic designer and co-founder, was dying from cancer of unknown primary , which has a very grim prognosis and no routinely accepted treatment, he wanted only hope -- that he would be in the 1% that has been reported to survive CUP at least for a year or more. He steadfastly avoided talking about death with his children, friends, and me. He resolutely did not want to talk to a professional of any sorts although he was willing to talk to a priest friend. Unfortunately, he was semi-comatose and near death before even one meeting could take place, given his frequent unplanned trips to the ER and regular trips out of town for chemotherapy. (The oncologist made an educated guess as to the possible primary cancer and gave two drugs, one a wide-sprectrum which generally does not work well because it is not targeted and the other targeted against his best-guess that the cancer started in the GI tract.) So, when the priest was finally able to connect with us, it was

  (diagram and contents of diagram from Beth Frates via Twitter) Literature gives suggestions for caregiver as if life is calm and caregivers are never angry or stressed out (implying that it is wrong to be so). The reality is that even in the best of circumstances, i.e. the existence of good support systems, caregivers do burn out . Thinking that other caregivers do not and that it is wrong to be angry or somehow even to instinctively respond with an unkind word or behavior is somehow is unique and makes one a bad person creates quite a guilt trip later.  In normal, circumstances, caregivers become sleep-deprived. Sleep deprivation leads NATURALLY to short tempers, frequent frustration, and, yes, bad decisions. Individuals' decisions that are made while sleep deprived cannot be thought of as intentional or well considered. At one point, I was so sleep-deprived that I fell asleep and drove off the road and into a field of cabbage (fortunately, I was not on a major highway), with m

(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

  Cancer Diary, begun after the death of Carl Leaver from a so-far-inexplicable and very aggressive cancer, Cancer of Unknown Primary , takes the day off on March 20 to mark his second marriage anniversary in Heaven. Carl was married March 20, 1970 and died August 16, 2021, five months after being diagnosed with CUP. Carl's wife marked this special day with lunch at Carl's favorite restaurant, Pizza Factory, with his lookalike son, who has CHARGE Syndrome , and the son's caregiver and her family. Carl's Cancer Compendium, founded to help families who suddenly find themselves faced with a diagnosis of cancer with little places to turn except lots of time lost to Internet research, updates the site weekly. This week a major reorganization was begun to make the site easier to read and a place where information can be found more quickly. Check it out! (It is quite fitting that today is also Nowruz , a new year and time of new beginnings.) For other Cancer Diary posts, clic

  The Hoyer lift made life work for us when Carl came home on hospice. I had been told about it by a friend after Carl had fallen several times and needed help getting up from more than one neighbor working together. Had I known a little earlier, I could have saved the neighbors some effort and Carl some dignity. Actually, once Carl went on hospice, the hospice company provided us with the lift. (Their aides would not have been able to lift Carl without it.) Having it at home meant that we could move Carl from bedroom to living room and back so that he could spend his days with his family out where they were and where he preferred to be. The Hoyer lift, as see in the picture is a tall pole with a moving base and patient sling for lifting patients who cannot stand. There are at least four  kinds of Hoyer lifts : power lift (highly recommended for large patients with small caregivers) manual (less expensive and works find for average-sized patients and average-sized caregivers) ceiling

  Colorectal cancer has a life expectancy of 4-6 months if discovered in stage 4. If discovered in stage 1-2, life expectancy is 5 years. (Note: Carl's Cancer Compendium provides longevity statistics for a wide range of cancers.) So many people die from colon cancer and colorectal cancer after brief periods of chemotherapy, if that, a imperative exists for watching for early signs of cancer is not heeded (or in some cases, they are simply missed or misinterpreted). I speak from personal experience because although Carl died from cancer of unknown primary ( CUP ), his oncologist was convinced that the original cancer was gastro-intestinal in nature although the colon was clear of the cancer by the time the cancer had reached stage 4 (which can happen in cases of CUP). So, assuming the oncologist was right about the original cancer, did Carl actually survive the 5 years without knowing it? Discovery at late stage does not mean the cancer arrived late stage -- it may have taken mon

We love grilling. Carl had quite a reputation for grilling hamburgers, hot dogs, salmon, and more, a tradition carried on by his children (son Shawn in the picture) and grandchildren (granddaughter Neela in the picture). Friends, family, and neighbors always loved coming by for Carl's BBQs.  Then, Carl fell and was diagnosed with stage 4 Cancer of Unknown Primary , which is an aggressive cancer, leaving little time to cope with rapid changes , let alone grilling or any kind of final fun. His oncologist thought that the primary probably was in the GI tract. Carl had skipped his colonoscopy (no one should ever do that). He was treated with a generic mix of chemicals as well as a mixture for colorectal cancer. It was too late! What we never realized during all those years of grilling was the potential connection between grilling and cancer. Had we known that, maybe Carl would have grilled less or differently. Perhaps he would have been more diligent about getting his colonoscopy. By