MSI Press Blog

(Carl, returning from chemotherapy, getting out of car and onto chair lift)   An inescapable decision--and a potentially life-changing one--can be whether or not to provide chemotherapy at advanced stage 4 of cancer. Chemotherapy given when a cancer is incurable (and side effects are minimal, manageable, or acceptable) is called palliative chemotherapy .  As with nearly anything medical or existential, there are pros and cons.  On the PRO side are the intents (if actually realized) shrink the cancer reduce the symptoms (e.g., pain) improve quality of life prolong life On the CON side are the peripheral aspects uncomfortable and/or disconcerting side effects (the same that accompany any chemotherapy: nausea; neuropathy; in the case of some compounds, hair loss) "end of life" chemotherapy can feel like grasping at straws, especially when/if the intents are not all met or met at all (an emotional side effect of depressions, desperation, anger--it depends upon the person) difficu

  I would be remiss if I did not follow-up on the story of the horrible hospice from hell . Once the complaint was raised by the California office to the federal level, months passed. I wondered if justice would be served. But I kept hearing that one or another person who had witnessed the inadequacies of the horrible hospice from hell were being interviewed. I also heard that the hospice was called in for interview and that a couple surprise visits were made by state staff.  After nine long months, I got a written response from the state. Wow! The hospice had to post that they were not meeting state requirements. They had a two-page long list of deficiencies to correct with a time frame for doing so and an oversight plan. I was not only satisfied, but I was also impressed with the efficacy of California's oversight. It could not bring Carl back; it could not undo the harm it had done to him; it could and likely would spare many others from the kind of trauma we had through. For o

  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

  Cancer Diary, begun after the death of Carl Leaver from a so-far-inexplicable and very aggressive cancer, Cancer of Unknown Primary , takes the day off on March 20 to mark his second marriage anniversary in Heaven. Carl was married March 20, 1970 and died August 16, 2021, five months after being diagnosed with CUP. Carl's wife marked this special day with lunch at Carl's favorite restaurant, Pizza Factory, with his lookalike son, who has CHARGE Syndrome , and the son's caregiver and her family. Carl's Cancer Compendium, founded to help families who suddenly find themselves faced with a diagnosis of cancer with little places to turn except lots of time lost to Internet research, updates the site weekly. This week a major reorganization was begun to make the site easier to read and a place where information can be found more quickly. Check it out! (It is quite fitting that today is also Nowruz , a new year and time of new beginnings.) For other Cancer Diary posts, clic

  Excerpt from Overcoming the Odds , edited by Carl Leaver . Introduction  If you have picked up this book, you are likely somewhere waiting. Perhaps you are in a waiting room (aptly named). Perhaps you are in a hospital room somewhere. Perhaps you are at a library or even happily ensconced on a plane, train, bus—or in your living room, having picked up this book at a library sale or some other charitable event.  We are sorry that you are “stuck” somewhere. We hope that the stories in this little book will help you pass your time enjoyable. (And, if you are in a waiting room, please leave it where you found it so that others may be entertained after you.)   If you would like to read more stories from the books from which these excerpts have been taken, they are easily obtained. You can order them from Amazon, Barnes & Noble, or any other online bookstore. Your local bookstore may also have it, but if not, the manager can certainly order it for you. Or, send us a note of

  We pause our Tuesday talks with authors to share information about to share our activities today, August 16, the one-year anniversary of the death of Carl Leaver, MSI Press co-faounder, primary graphic designer, and usual typesetter. We asked everyone who knew him to eat a piece of chocolate in his memory. It is not too late for others to do the same. Rather than repeat the in memoriam statement of a year ago, here is the link: IN MEMORIAM CARL LEAVER . More posts about Carl can be found HERE .  We began the day at the cemetery, beside his vault, and shared a rosary and his favorite breakfast -- corned beef hash -- with him, placing a favorite tablecloth from Damascus, with fine gold-thread embroidery that is unique to that area where Carl had spent time. Then we took some coffee cake bread to the firemen who so many times during the last months of his life would come and pick him off the floor or take him to the hospital. After that was lunch with friends and the priest who had org

  (diagram and contents of diagram from Beth Frates via Twitter) Literature gives suggestions for caregiver as if life is calm and caregivers are never angry or stressed out (implying that it is wrong to be so). The reality is that even in the best of circumstances, i.e. the existence of good support systems, caregivers do burn out . Thinking that other caregivers do not and that it is wrong to be angry or somehow even to instinctively respond with an unkind word or behavior is somehow is unique and makes one a bad person creates quite a guilt trip later.  In normal, circumstances, caregivers become sleep-deprived. Sleep deprivation leads NATURALLY to short tempers, frequent frustration, and, yes, bad decisions. Individuals' decisions that are made while sleep deprived cannot be thought of as intentional or well considered. At one point, I was so sleep-deprived that I fell asleep and drove off the road and into a field of cabbage (fortunately, I was not on a major highway), with m

  Carl and Murjan sharing a Thanksgiving dinner Gaudete Sunday is coming up--an oasis in Lent, and, like other Sundays, a time we can eat a full meal! If our beloved Murjan were still with us, he would be perching on his chair next to Carl (wish he, too, were still with us, 2021 stole two beloved members of our family), savoring the smells of the fat of the land (well, maybe, of pancakes -- he at those, too), and patiently (yes, he was a patient cat, almost humanly patient) for his share of the feast to be chopped up and presented for his enjoyment. Each of our cats had quite different personalities, but the two that stand in stark contrast to each other are Murjan and Intrepid . They were both born in Jordan, lived with us there, and came to California with us 15 years ago. Both are now on the other side of the rainbow bridge, ravaged by the same kind of cancer, feline lymphoma. Intrepid is interred with his devoted human to whom he was equally devoted, Carl, and Murjan's ashes

  Cancer has a way of knocking down the best and the brightest, no matter the fight they put up: Rith Bader Ginsburg, Colin Powell , and so many others. And this week, Madeleine Albright. Since I used to work at State Department, I saw M. Albright in action. Impressive action, I would add. For a short but impressive biography, click HERE . While she lived a long life and helped many women develop good careers in what are often male roles, one could wish that cancer had tiptoed away and not pushed her out the door. One can always wish... Unfortunately, this week we learned that another member of our family, like Carl , has been hit with a sudden and late diagnosis of Stage 4 metastatic cancer. Lord, have mercy! Not just for the people but also for the furry critters, like our Murjan and Intrepid , who died from cancer, and three other cats living with us who have survived it--so far. Finding cures will never be too soon. Finding cancer early is the key for now, and we are heartened by

  Last Sunday, 3-20-2020, would have been the 52d anniversary for Carl and me had he not died in August. I make this post here and not Cancer Diary, although Carl died from Cancer, because Carl was an important member of the MSI Press staff from its inception in 2003 until the month before he died. He was still working on typesetting tasks on July 23, 2021 when he fell and was admitted to Stanford, then sent home on a very short 10-day hospice.  I am also including it here, on Caturday, because our cats were a very important part of Carl's life. Particularly Intrepid, who lived up to his name yet snuggled with Carl every night and, like Carl, died of cancer three years ago, resulting in a book named after him, and Murjan, shown here, who never know whether he was dog or human but certainly did not consider himself a cat, could be found at Carl's elbow every day, especially at mealtimes. He was a very polite cat and would wait his turn for food, and one could have a fairly long

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

  (photo by Carl D. Leaver) On the solstice (Tuesday), at Old Mission San Juan Bautista, the sun will stream through the arms of St. John the Baptist (the statue outside the church), then through the window in the choir loft, and starting from the right-hand side of the statures in the rededor and coming to rest on the tabernacle, from which it flows in a golden river of light down the center aisle. On cloudless solstices, it is quite spectacular. Anyone in San Juan Bautista at 6:00 am Tuesday this week (Dec 21) are welcomed into the church -- usually a priest, together with local Native Americans who built the church, will lead a waiting ceremony until the sun does its thing. Want more information about Old Mission San Juan Bautista? Here is the official information , and here are the reflections of MSI Press author, Sula, Parish Cat at Old Mission . Enjoy the solstice wherever you are.

  Carl , who died from cancer August 16, 2021 would love to see me wearing my non-slid slipper sox . He was constantly slipping as he tried to walk with his walker, unbalanced from hypercalcemia. He found these sox online; they are stronger than the typical non-slid sox (click the link above to get to the sales site), warm, form-fitting, and comfortable.  I was always slipping when I tried to pull him up from his chair after he became too weak to stand on his own. I was barely strong enough to lift his 275-pound body with some help from him, and having sox skid me along the floor because his weight was more than my bicep strength created a dangerous situation. So, he ordered me several pairs, which came just as he was dying. I never got to wear them. He was in a Hoyer lift for transportation at that time. After he died, though the need for super-floor-sticking no longer existed, I cleaned his drawer and gave his sox (too big for me) to my son and daughter, whom they fit. Out of curiosi

  The Hoyer lift made life work for us when Carl came home on hospice. I had been told about it by a friend after Carl had fallen several times and needed help getting up from more than one neighbor working together. Had I known a little earlier, I could have saved the neighbors some effort and Carl some dignity. Actually, once Carl went on hospice, the hospice company provided us with the lift. (Their aides would not have been able to lift Carl without it.) Having it at home meant that we could move Carl from bedroom to living room and back so that he could spend his days with his family out where they were and where he preferred to be. The Hoyer lift, as see in the picture is a tall pole with a moving base and patient sling for lifting patients who cannot stand. There are at least four  kinds of Hoyer lifts : power lift (highly recommended for large patients with small caregivers) manual (less expensive and works find for average-sized patients and average-sized caregivers) ceiling

  Today, a Celebration of Life was held for MSI Press co-owner, typesetter, and cover designer par excellence, Carl Leaver, who died August 16, 2021.  Carl always said he was a rotten pumpkin, being born a day after Halloween, but November 1 is All Saints Day and the day after is All Souls Day -- pretty special timing. Carl's experience with cancer of unknown primary, which he killed him very rapidly (5 months), inspired Carl's Cancer Compendium and Cancer Diary. As for those saints and souls, check out Saints I Know and Dia de Muertos by that famous parish cat, Sula. 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 i