MSI Press Blog

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,

  March is National Colorectal Cancer Awareness Month. Being aware of the dangers of colon cancer, how widespread it is, and how fairly easily it can be identified and treated at early states is important to everyone's long-term health because colorectal cancer can attack anyone. Here is a guide that can help: Guide to Colorectal Cancer Carl Leaver for whom the CCC is named and maintained died of cancer of unknown primary. How oncologist believed (no evidence when it comes to CUP) that the cancer started in the colon.  I, his wife and MSI Press LLC managing editor, was found cancerous polyps through a home colon cancer test, ordered because of an observed change in bowel behavior, that led to a much-earlier-than-planned follow-up colonoscopy (5 years instead of 7-10 years after the first colonoscopy that had yielded no concerns). That led to several siblings revealing the same state and that they were on short-term follow-up colonoscopy schedules. Carl blew off his scheduled colono

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

photo: care.com When Carl was dying from Cancer of Unknown Primary , we were facing the question of how to handle his 24/7 needs for care. Everything was compressed during that time -- decisions had to be made without the time to reasonably research them and rationally make them. (That is the primary reason MSI Press established Carl's Cancer Compendium : to pull together a lot of the basic, time-consuming research that could be accessed with just a couple of clicks).  When we decided to try chemotherapy, he became not eligible for hospice care. IMHO, there is a problem with the binary system behind hospice availability. Decide to work on dying - hospice is available. Decide to work on living -- you're on your own. Yet, this is exactly the time that patients and their families need help; being on your own is certain to result in a range of emotions, including anger and frustration, as well as poorly informed decisions, burnout from family member who cannot do everything and be

  Cancer needs money -- for research, for support of patients, for training, for informational materials. There are many ways to give to cancer funds. Here are some: Team Beans: child brain cancer; click HERE for information about the CNN reporter's family story behind the fund The Jimmy Fund (connected to Team Beans): click HERE for information about Run for Dana-Farber Cancer of Unknown Primary (CUP) Foundation -- an important one for me personally St. Jude , the children's hospital founded by Danny Thomas that provides free care to children can always use funds American Cancer Society , of course There are MANY more funds and foundations in need of donations. Just do a search for the kind of cancer or the kind of support you wish to make and the word, donate. You will find many opportunities. And know what? Even $1 helps because 1000 people giving $1 is already $1K. If you are a loved one are struggling with cancer, you may not have much to give, but consider $1. And if a l

  New information from American Cancer Society shows that colon cancer is increasing in people under the age of 55.  Concerned: Here are the signs of colon cancer, but please be aware that sometimes no signs are seen before the cancer spreads to other organs and reaches Stage 4, or even before the situation turns into Cancer of Unknown Primary . 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  here  or

  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

  Carl died of Cancer of Unknown Primary -- never could find the original cancer; CUP is frustrating that way. Of the cancers that were known, stomach cancer was one of the five cancers that wracked his body. We did not know anything until it was too late. Carl lived only five months after his initial diagnosis. Had we known what to look for -- and even though to check out little aches and pains and oddities -- he might have fared much better.  For those still living with what may seem like little aches and pains and oddities, here are some  Stomach cancer: causes, warning signs, and treatment (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/o

  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

  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

  Probably everyone has a little video in mind as to how they would like to spend their last few minutes on earth, i.e. how they would like to die. Far from all experience their imagined scenario. Carl was fortunate to die surrounded by family and cats. Even though nothing was said, it seemed like everyone understood that Sunday night would be Carl's last (he died early Monday morning). No one retired. Carl slept in his favorite lazy boy lounger in the living room -- did not want to be taken to his bedroom. I slept in the lounger next to him and leaned up against him. It was much more comfortable than it may sound. Our sons were on the living room couches, and our daughter was in a matching lounger right behind Carl and me. Carl slept with his legs elevated, as always, and his beloved Happy Cat and Snyezhka slept under the footrest. Another four cats, including Murjan , himself dying of cancer and in what turned out to be the last month of his life, were scattered around the livi