MSI Press Blog

  One of the existential questions that we faced when Carl was diagnosed with terminal cancer in four organs, although it was not evident as a question until after Carl died, was whether we should focus on living (enjoying the life that was left) or staying alive (fighting death). For one reason another, in part waves of crises, we kept being pushed to focus on staying alive. We planned to do something special, even if small, every Monday--an attempt at living, and, darn it, every single Monday for those last five months of Carl's life, he ended up in the ER not because of doing something special but before we could do something special. Five months passed, and as I look back it, we were focused exclusively on staying alive. I wish we could have focused on living.  I was very taken with one young wife, who called herself Widow in Waiting on X, who somehow did manage to focus on living. Her husband was in the hospital more often than not. her posts on X were focused on living....

  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 MS...

  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 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...

  I have written a bit about the process of pets dying before, along with the ways in which vets can be (or not) helpful. In that post, I shared a book by Barbara Karnes on understanding the pet-dying process, which I had found very helpful and which would have provided me with a fair amount of relief and guidance had I known about while Murjan was still alive. It explained much about his dying process and death that was comforting in retrospect. You can read that post HERE . In this post, I want to share the emotional aspects not only of the dying itself but also of the role of the support community (which should be supportive but in our case was not so, at least not to the extent that we needed and that could have been). As a result, my experience with Murjan's dying days were traumatic--more traumatic than they should have been because of lack of support from the veterinary hospital that should have been my source of support.  As I explained in the earlier post, Murjan had...

  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...

  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 sou...

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 ...