MSI Press Blog

  When Carl first died, a friend sent me a little book, wonderful in its pragmatism and understanding of the immediate-after-death emotions and psyche. That book pointed out that widows (or widowers) have a tendency to turn the former spouse into an icon. (Well, some of them do, anyway, and that, according to the little booklet, makes it difficult to move on or even to maintain a normal range of sanity. I realize that I was doing just that -- not wanting to change anything in the house or how anything. I also put a picture in every room. Reading that booklet, I realized that I was indeed iconizing Carl. In an opposite manner, some people, perhaps many people, completely change their life and lifestyles after the death of a spouse. This was clearly expected of me. I cannot begin to count the number of real estate agents who contacted me for the first weeks and months after Carl died, offering to sell the house for me. I guess that would be a form of minimization. I had no desire to sell

  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

Watching the always-obese Carl waste away from cancer (though he still had quite a bit of poundage when he died) evoked terribly deep feelings of helpless and frustration. We were losing the fight to keep Carl healthy, and Carl was losing the fight to stay alive. Some days, it all seemed so pointless.  One bright light that we experienced near the end was that perhaps some good could come of Carl's experience. Yes, there is good that comes from sharing experiences, such as through Cancer Diary. But there is something more: whole body donation so that researchers can learn more and medical students can be trained.  Carl wanted to leave that kind of legacy and, the father of a neurobiology professor who had needed cadavers for her training, wanted to help out medical students become better doctors, and if some research into cancer of unknown primary, of which little is known, could shed a little more light on a dim subject, then he was all for that, too.  We researched and found an o

  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

  Carl, whose experience launched this blog and the MSI Press's Carl's Cancer Compendium (CCC) died after a very short 5 months post-diagnosis of occult cancer, or, as the official term goes, Cancer of Unknown Primary (CUP).  Carl fell February 23 and went to the local hospital where staff found advanced stage 4 metastatic cancer in five organs and subsequently transferred him to Stanford University Hospital, stating he would not likely return him. He did return home, for a brief four months--and he died at home on hospice almost a month later, having spent only 10 days in that capacity.  Stanford spent almost a month trying to determine the original cancer that had spread to these five organs (none of these organs was the original.) That is the problem with CUP. Finding the original seems out of reach and a guessing game. The doctor made his best guess, based on the spread pattern, but the cocktail he came up with for chemotherapy while doing no harm also did no good. The pro

  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

  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

Whether you call it Anointing of the sick, Sacrament of Extreme Unction, or Last Rites, the ceremony of a priest spending time at the end of a dying (from cancer or anything else) parishioner's life can bring peace to family and friends. I am pretty certain that Carl held on until that happened. He was mostly in some other world, not comatose but not present to those around him either, during his last couple of days. He had all the signs of being in the last hours (not days) of life but seemed to hold on. He knew our priest would come on Sunday morning.  On Sunday morning, I alerted the priest to the near-comatose state of Carl. He responded, "We will take him as he is."  However, the minute he spoke Carl's name, Carl's eyes flew open, and he smiled, responding with cheer and apparent happiness, "Oh, hi!" Carl surprisingly followed the rite although it was clearly difficult for him at times to fight to stay in the present. However, that is clearly where

Carl, so proud in his new, smaller, fully fitting Scott vest   Indeed, several months before Carl was diagnosed with advanced metastatic cancer (stage 4), he lost quite a bit of weight. Nearly 50 pounds overnight. Now, he was big, very big. Any weight loss, in our thinking at the time, was to be applauded. And so, he ordered s smaller Scott vest and showed off his new slimmer self. (Not slim, mind you, but slimmer -- he was still nearly 300 pounds when he died.) What we did not realize -- and I certainly wish we had is that such a weight loss is not to be celebrated. It is a sign of dying, or at least, of advanced cancer. Instead of showing off his success ("achieved" -- more accurately, "experienced" -- though he was not on a particularly regimented diet), he should have been rushing to his doctor and asking, "What is wrong with this picture?" Perhaps, hopefully, the doctor would have figured out the cancer diagnosis early enough to do something about it,

I have put off talking about this topic on Cancer Diary for a while because the memory is so painful. However, it did happen, and therefore it probably happens more often than one would think or hope. When it became time for Carl to go on hospice, we chose home hospice and looked forward to him being back home from the hospital with his family and having the support of professionals in our own.  Alas, that did not happen. Whatever could go wrong did go wrong -- and it would appear that with this particular hospice, it might have been regular practice rather than something going wrong. The easiest way to share is probably just to provide a list of everything that went wrong. (Any one of these might go wrong with any hospice, something caregivers should be prepared for. All of them going wrong is simply incompetence, uncaring, and abuse on the part of the hospice.) [In this list, Hospice C is the first hospice we worked with, the bad one, and Hospice B is the second one, the good one. Ho

The cats in the window, Intrepid (tabby-mau mix) and Murjan (red & white Turkish van), were the best of friends. Murjan "raised" Intrepid after he was found as a small kitten crying in the grass after his mother died. Both were born in Jordan and were brought to the USA when we moved back home to California. Both were diagnosed at the same time with lymphoma though the vet said that it was pure coincidence. Intrepid was the younger by four years, but he had the worst case: his kidneys and liver were already damaged when we found out he was sick. Both began chemotherapy in summer of 2018.  Intrepid In October 2018, Intrepid , named for his daredevil approach to life, died. He was only 11 years old. As the days went by and the chemo did little more than make him loopy--actually, it was difficult to know whether the progressing disease was causing him to walk drunkenly or the chemotherapy side effect or both--he ended up on IV at home at times and IV in the pet hospital at t