MSI Press Blog

  When a dying loved one does not want to talk about the ramifications of dying is an issue I have been wanting to address for a time. it was a very difficult one for us. More than head-in-sand, it was a deliberate refusal by Carl, when he was dying, to become involved with completing really important paperwork, like advanced directives, will/family trust, power of attorney. It was as if he could avoid death by not talking about it. (Of course, to be fair in representing the situation, he found out from a fall, with no warning, that he had probably only days and weeks left to live. The local hospital said days; Stanford was more positive about taking steps to turn days into something longer.) Cancer Diary will address this topic again (and likely again). For today, though, I want to share Diane Hullet's Best Life, Best Death podcast interview with Barbara Karnes on these sticky end of life questions, from the point of view of hospice worker and family member. See related MSI Pres

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

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

  When Carl came home from the hospital and was put on in-home hospice, we, the members of his family (my daughter had come from the East Coast with her family and my son had come from Sacramento), did our best to learn all about his medical needs. The kids had come home because it was clear the end was near, and we wanted to make sure that his time at home was as pleasant as possible, surrounded by family. We learned about the various medications he had been taking and would be taking. He was not able to communicate well by then, but he had quite an arsenal of regular pills that he took every day, and once he stopped being able to sort them out himself, we had to figure out which he needed when. He was also given new drugs -- morphine, which he used only a little of, and an anti-anxiety drug, which he never needed. With the morphine, instructions were unclear, and we guessed at amounts. Checking in with the hospice nurse, we learned that we were giving a 300-pound man the dosage that

The cats in the window, Intrepid (tabby-mau mix) and Murjan (red & white Turkish van), were the best of friends. Murjan "raised" Intrepid after he was found as a small kitten crying in the grass after his mother died. Both were born in Jordan and were brought to the USA when we moved back home to California. Both were diagnosed at the same time with lymphoma though the vet said that it was pure coincidence. Intrepid was the younger by four years, but he had the worst case: his kidneys and liver were already damaged when we found out he was sick. Both began chemotherapy in summer of 2018.  Intrepid In October 2018, Intrepid , named for his daredevil approach to life, died. He was only 11 years old. As the days went by and the chemo did little more than make him loopy--actually, it was difficult to know whether the progressing disease was causing him to walk drunkenly or the chemotherapy side effect or both--he ended up on IV at home at times and IV in the pet hospital at 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

One of the most comforting and helpful resources we found when Carl was in the final days of hospice -- more helpful than what hospice workers could tell us and more than doctors did tell us -- was a little book, called Gone from My Sight: The Dying Experience by Barbara Karnes, RN. As Carl went through each predicted and predictable stage from being distant mentally, to not eating, and then to not drinking, this little book told us the range of expectations and what was happening to his body in preparation for death in relation to what he was and was not doing. The book description on Amazon is very accurate:  The biggest fear of watching someone die is fear of the unknown; not knowing what dying will be like or when death will actually occur. The booklet "Gone From My Sight" explains in a simple, gentle yet direct manner the process of dying from disease. Dying from disease is not like it is portrayed in the movies. Yet movies, not life, have become our role models. Death

MSI Press, over the years, has published a number of books that focus on cancer, include cancer, or discuss related items such as living with chronic illness, caregiving, dying, and grief. Here are some of them. All of these books can be found on the MSI Press website  HERE .                 For more Cancer Diary posts, click HERE . To reach the MSI Press catalogue, click HERE . Note that the coupon code FF25 will gain you a 25% discount on any book, including those on sale. Blog editor's note: As a memorial to Carl, and simply because it is truly needed, MSI  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 into robustness. As part of this effort, each week, on Monday, this blog will carry an informative, cancer-r

  In her blog post this week, Marti writes: I know that some are afraid to die while others are excited at the very thought of leaving this troubled flesh life and arriving in Paradise. Personally, I want to know that I've completed my mission in this life first, and then I can return to my heavenly home with open arms. Read the rest of the post HERE . For more posts about Marti and her book, Lamentations of the Heart , click HERE . For posts about death and dying, click HERE .