MSI Press Blog

  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

  By the time, Carl was diagnosed, his cancer was metastized to his liver, lungs, bones, and upper stomach. After many biopsies and scans, the primary could not be found, and the cancer was officially labeled Cancer of Unknown Primary . Impaired Mobility: harder and harder to walk and climb stairs     We associated this with worsening of gout, which had been present for more than a decade     This could have been due as well to cancer-related hypercalcemia and bone cancer Frequent urination     We associated this with normal aging     This could have been related to  prostate cancer (not the case with Carl but the case with many) Pain in the side     We associated this with a gallbladder attack; it appeared similar to what our daughter, who had her gallbladder removed, had gone through.     We did not know that this same kind of pain is diagnostic of liver cancer. Frequent dozing off while working on the computer or watching television We associated this associated with  fatigue from t

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

As with Carl, many people have "signs" of cancer that can be interpreted either as something else quite mild or dismissed entirely as just a bad day or maybe I ate something bad yesterday. Otherwise quite healthy people simply ignore them as an annoyance. (Before cancer, Carl was sick just one day in his life -- 50 years earlier he threw up, once, on the lawn, from unsuspectingly drinking stagnant water the day while carrying out his Forest Service employee duties, Seriously. Never again did he ever throw up even after three rounds of chemotherapy, but he died, healthy, from cancer!)  This is the insidious nature of cancer. Often, you just do not know you have it because the signs are so innocuous until it has taken over your body and is in the winner's circle -- and you have an incredibly difficult battle to get your body back -- and many people lose that battle every single day. This is especially true of "toilet information." Change in bowel movement is prett

  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 manifestation of

  Recently on Twitter, a cancer victim complained that friends kept elatedly sending her information about a potential cure for rectal cancer. She suffers from breast cancer! Sort of like rubbing salt in a wound, but the confusion is understandable for those who know little about cancer. Our vet (oncology expert) suggested that we ask Carl's oncologists to consider immunotherapy for Carl. We clung to that possibility initially since immunotherapy had thrown our little Snyezhka into full remission after having been given a maximum of four months to live. Nearly two years later, she is still with us and is healthy.  Carl was given just days to live when he was diagnosed with advanced metastatic cancer involving five organs. We clung to the hope that Stanford University Cancer Center might recommend immunotherapy; that was one of the possibilities the oncologist mentioned. Yes! However, immunotherapy is highly targeted -- against the source cancer. Test after test ruled out each of th

  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

  The final conversation had with Carl's oncologist was what we needed in our first conversation but did not get. Not quite two weeks before Carl died, at which time he was in a subacute facility, having fallen the week before, been admitted to the hospital, then shifted to the care facility, the oncologist called us with the results of the latest scans. "Not good at all," he said, and he gave us three options: let nature take its course -- Carl could move to in-hospital hospice or in-home hospice (we chose the latter, and while we had a very bad experience with the initial hospice , it was still the best choice) try out another chemical compound - He told us he had given us the most appropriate and strongest ("the best") that he had, but if we wanted to try another mixture, he would look at other options take part in a clinical trial - He did not of any for Cancer of Unknown Primary and would have to do some research; there might not be any, and there might no

  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

  There are many things, obviously, that contributed to Carl's death from cancer. No one thing is the isolated reason (generally). Among those "things," though, is lack of movement.  Carl was obese. It was hard for him to move, and, therefore, he did not like to do so. He accompanied me to the gym and worked with my trainer, but he balked at most of what she asked him to do. She assigned us "homework." Not all of it was enjoyable, but I did it because it was helping me build strength, endurance, and flexibility -- and so the results were enjoyable. Carl was unwilling to do the homework, no matter how simple and minimal she made it for him. Not even a couple of minutes a day. He watched me work out with m y homework, typically about 30 minutes each evening. Although I asked him to do his small exercises of 4-5 minutes instead of just sitting on the couch, watching me, he did not want to and so did not. If I sound frustrated, it is because I am. He might be alive

  What some people leave behind when they die can help so many others -- either making  medical care possible for them or making medical care better for them.  In the first category is a young mother (age 38) who died of ovarian cancer. Her name was Casey Ryan MacIntyre, and her dying wish was to wipe out the medical debts of other people. Through a memorial page on the  RIP Medica Debt page, she, with the help of her survivors, has already wiped out over 100 million dollars in debt of those who cannot afford medical care. (Donations are still being solicited -- until December, it appears -- if you would like to donate.) Newsweek tells the story HERE . In the second category are those who donate organs. For the most part, the process for doing that is easy to follow; hospitals have staff members who follow up on those who have indicated they wish to donate (e.g., on their driver licenses) or through those they leave behind and will often contact the latter whether or not there a wish