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 take over, given

  I found the following article highly interesting, informative, and thought-providing. While it does not include exclusively cancer patients, certainly cancer patients can relate:  ‘My life will be short. So on the days I can, I really live’: 30 dying people explain what really matters (msn.com) . 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 Press on  Twitter ,  Face Book , and  Instagram

  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

  I have raised two children who were not supposed to live because of the type of birth defects they have. Today, both are in their 40s. I know how to care for someone whom I honestly believe will -- and who does have a hope to -- get better. There was always the struggle of making sure they got the meds they needed, that they did the kinds of activities they needed to do, that their father, Carl, and I researched everything that was going on in medical research about their defects and brought it up to their doctors, and that we interacted actively with all specialists working with them, asking for clarification for us at time and for them at times, ensuring that they knew as much or more than we did. It was purposeful care that had an expected point of diminishing need, with the reins turned over to the children as time passed. Time, then, was a positive. It allowed us to build a brighter future than an initial diagnosis proposed. Things got better over time. The kids gained skills an

  Since today is my birthday, this guest post seemed very apropos! DYING AND LIVING “Yet if we love one another, God dwells in us, and his love is brought to perfection in us.” --I John 4: 12     I watched Dad die. I was only seventeen at the time, too young to understand much of what was going on. My father had been diagnosed with throat cancer two years before, a disease common to heavy smokers and drinkers. He underwent brutal cobalt treatments and lost his voice. He was in constant pain, unrelieved by the medications. For the last three months of his life he was bedridden at home. Mom, my brothers, and I took turns sitting by his bedside, mostly in silence. He could not speak, and I did not know what to say. It was decided not to tell Dad he was dying, so he could keep up his hope. But he knew. The priest later told us how Dad spoke with him about his dying and not to tell us. So no one said anything about the elephant in the room. In the silence during my death wat

  Jane Fonda recently revealed that she has been diagnosed with Non-Hodgkins Lymphoma. As she discusses death and cancer , she displays remarkable courage. Read more about Cancer Diary posts  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 web page is in its infancy but expected to expand into robustness. To that end, it 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 Press on  Twitter ,  Face Book , and  Instagram .   Interested in publishing with MSI Press LLC? Check out informa

  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