MSI Press Blog

  When my beloved Murjan was dying from cancer , I was desperate for information, but my husband was dying from cancer at the same time, which gave me very little time for seeking out answers. Murjan was almost 19 years old and had been on chemotherapy for three years. His vet did not know how to help him further, but she apparently did not want to admit that -- and subconsciously I did not want to admit that she did not know what to do and had essentially given up on him. I was unable to get timely appointments, or any appointments at all, even in the emergency room. We do not have any vets in town. I have to travel no matter what. Murjan's vet was located an hour north of us. To get help, I contacted other vets. A vet to the west of us recommended hydration, and so we stated hydrating Murjan every other day. His vet to the north allowed as to how that might help. But Murjan kept losing weight. He was down to 5 pounds (from 16 pounds) when he died.  Finally, a vet to the south of

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

  I like to follow the blog of Barbara Karnes , hospice nurse par excellence. Much of what she has to say to hospice nurses about end-of-life issues in general apply to caregivers of cancer patients in particular. Her latest post, " For some doctors, it just isn’t in their tool kit to stop trying to treat,"  reflects our experience very well. Only when Carl fell and needed four people to lift him and get him to the hospital and x-rays showed complete take over by cancer of four major organs along with blood clots in his legs and lungs did the doctor suggest hospice (although he also expressed a willingness to continue treatment -- a different treatment -- if we wanted). We chose hospice, but the period of time was short. Carl returned from the hospital and went on hospice August 7. He died August 16. I have always wished that the doctor had put the hospice option in front of us much earlier, perhaps even at the beginning of the 5-month period during which the doctor tried eve

  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

  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

  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

  Earlier, I wrote about the two paths that erupted in front us when faced with a late-stage cancer diagnosis: to focus on living or to focus on dying. There are so many problems and so much confusion when told after a fall or a blood test or something else that seems otherwise innocuous that your loved one has advanced stage 4 cancer.  The worst thing about a late-stage diagnosis is time, or the lack thereof. Not just the time left for a cancer victim to live, but the time available to make decisions.  The first decision--to treat or go on hospice --is a significant one, and there is often no time to really think in through. From my own experience with more than one relative diagnosed with more than one kind of cancer at an advanced stage, there is an automatic, nearly instinctive choice made, not a reasoned one. Got insurance? Treat the cancer. Don't have insurance? Don't treat the cancer. Those are clearly not the most logical or even medically best or viable criteria, but

  I recently read a great blog post from Barbara Karnes, a hospice guru, who has done much to help dying patients and their families travel the path to death with equanimity. Her most recent blog post, " When our emotions blind us from what is happening ," rings true for cancer and any other fatal illness and is well worth reading. 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/or from professionals. The CCC is expanded and updated weekly. As part of this effort, each week, on Monday, this blog will carry an informative, cancer-related story -- and be open to guest posts:  Cancer Diary .   Sign up for the MSI Press LLC newsletter Follow MSI Pres

  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

  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

  We only get to die once (well, usually, NDEs aside). How we die can be just as important as how we live. I wish that thought had been top of the mind when Carl was dying; we might have done things differently. It is not, though, that we did not have examples. We did, actually. Dottie, a dear friend from Massachusetts, had been my secretary when I was in the Army and then opened her house to me and my infant son when, during my later reserve days, the barracks would not allow him in because of his severe breathing issues from which he was in danger of dying nearly every day. (He survived, grew up, and, still with some breathing issues, is living a robust life.) Through all the intervening years, even after I moved to California, Dottie stayed in touch. Then, she got terminal brain cancer. After some initial surgery (and more planned, which, she feared, she would not survive), she decided that she wanted to spend the time she had left visiting all her family, which had spread out acros