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 tak...

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...

  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...

  March is National Colorectal Cancer Awareness Month. Being aware of the dangers of colon cancer, how widespread it is, and how fairly easily it can be identified and treated at early states is important to everyone's long-term health because colorectal cancer can attack anyone. Here is a guide that can help: Guide to Colorectal Cancer Carl Leaver for whom the CCC is named and maintained died of cancer of unknown primary. How oncologist believed (no evidence when it comes to CUP) that the cancer started in the colon.  I, his wife and MSI Press LLC managing editor, was found cancerous polyps through a home colon cancer test, ordered because of an observed change in bowel behavior, that led to a much-earlier-than-planned follow-up colonoscopy (5 years instead of 7-10 years after the first colonoscopy that had yielded no concerns). That led to several siblings revealing the same state and that they were on short-term follow-up colonoscopy schedules. Carl blew off his scheduled c...

  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...

  Today's post is short -- just a link -- but it could be more important than much longer posts. I recently came across the National Comprehensive Cancer Network and its compendium of drugs. Like Carl's Cancer Compendium, this collection of searchable and readily available information is a goldmine that I wish I had had when Carl was dying from cancer. You can check out this rich complication of cancer drugs and information about them HERE .  See other posts on cancer drugs . See other   Cancer Diary   posts. Blog editor's note: As a memorial to  Carl Don Leaver , co-founder of MSI Press LLC, 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/or from professionals. The web page is in its infancy but expected to expand...

  With the rumors floating about these days, especially inside Russia, about Putin's health and a visiting oncologist, thyroid cancer is in the news. While I have no inside information (thyroid cancer? Parkinson's, growing old? all in the minds of the rumor mongers?) and therefore will not comment on Putin's state of health, I will note that Carl's Cancer Compendium recently fleshed out a fair amount of information related to thyroid cancer (which just might be helpful to people other than Putin who may be exhibiting some symptoms of one of the more treatable, if caught early, cancers). From the site: Thyroid cancer Definition : A cancer that develops in the cells of thyroid gland, a butterfly-shaped gland located just below adam’s apple in the neck. It causes difficulty swallowing hoarseness, lump on the neck, and swollen lymph nodes in the neck.  Types  include Papillary  Thyroid Cancer Follicular  Thyroid Cancer Medullary  Thyroid Cancer Anaplastic ...

  One of the most famous people I have ever met -- and a very lovely person at that -- is Shirley Temple Black, who passed in 2014 after making the world better in several areas of using her talents at acting, diplomacy, and just good people skills. She genuinely liked people. I remember her taking time from a busy schedule to spend a break period from language studies to talk to my 10-year-old, a conversation he obviously will never forget, about our planned move to Monterey and about how she loved Monterey so much that she got married there. I bring her up in the Cancer Diary post because her birthday would be this coming Saturday (April 23, 1928), and, more important, because she was a breast cancer survivor. Her openness about cancer may have saved millions of lives. The more survivors, the more doctors learn. The more survivors, the more hope for others with breast cancer. And the more survivors, the more we realize that breast cancer does not take sides or pick victims -- eve...

This picture goes with maintaining a sense of independence and trying to help out the caregiver, especially when the caregiver is a family member and the cancer patient is still living at home (pre-hospice or on hospice -- although if put on hospice, chances are the patient has progressed to the point of not being able to assist with self-care), like my husband Carl was. Carl's push toward self-care was prompted by an unwillingness to talk about death (link to earlier post) and not wanting to admit that terminally ill (not necessarily good things because we had to scramble after he died to hack his accounts to take care of matters that could have been planned for -- but not just he but we, the whole family, were choosing to focus on life, not death . So, as a tinkerer, he came up with some home adaptations that could be helpful to anyone with reduced and reducing mobility. The picture above is the way in which he used towels to assist himself in getting up from the toilet once bei...

  When Carl lay dying in home hospice, we were given three vials of morphine for pain. Oddly, we used very little of it. He did not need or want it. At one point, his liver was grieving him, and we gave him a small amount and called the hospice to find out what we should be giving since the bottle said only "as needed." We were told that we had given a pediatric dose -- for a 300-pound man. He did not seem to need more at that time, though, but the next couple of days, a couple of times, he indicated he was in mild pain, and we tripled the dose as suggested by the nurse. He, however, after that, never indicated he was in pain. Our son asked if he might like to be given at least a small dosage prophylactically, to which he responded, "You wanna turn me into a dope addict?" Carl had a limited tolerance for pain all his life, so if he said he was not in pain, he was indeed not in pain. Had he been in pain, he would have taken anything and everything available!  The opp...

  Carl dozing with his beloved cat, Intrepid both died of cancer, were cremated, and share a vault in local cemetery's columbarium Carl was often dozing during the last months of his life, perhaps as much as the last year. He had had uncontrolled sleep apnea and restless leg syndrome for years. For the former, her refused treatment; the CPAC and his beard battled for dominance, and his beard won. RLS was tames with medicine.  When Carl would doze off, I just assumed he was tired because he did not get adequate amounts of sleep. However, something else of which I was completely unaware was probably at work: dying. The dozing off became longer and more frequent during the last 2-3 months of his life, and during the last week, he moved from being mostly interactive to being mostly somnambulant. Carl dozed off and on during the day a lot even as much as a year before being diagnosed with advanced stage 4 cancer of unknown primary . Indeed, some of it was very likely a manifestatio...