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Cancer Diary: When a Business Partner is Also Your Dying Spouse

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  Small businesses are often co-owned by spouses. The partnership blends life and work, weaving together shared goals, hopes, and sacrifices. But what happens when one of those partners becomes terminally ill—and not gradually, but suddenly, with a diagnosis that leaves little time to prepare? That was the reality I faced when Carl, my husband of over 51 years, was diagnosed with multiple late-stage cancers. His health declined rapidly, and he pushed hard to close our business—something we had built together—because he could no longer do the work he had always managed. On the surface, his wish was simple: “I’m dying, and I want everything to stop with me.” But for those left behind, nothing stops. Life keeps demanding care, attention, and difficult decisions. I was caring not only for Carl, but also for our disabled son and a daughter who needed support. And the business—our livelihood—still needed running. Carl saw one piece of the picture: his need for full-time care and atten...

Cancer Diary: He Stopped Talking

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Snyeshka, who ironically died of cancer shortly after, with Carl in hospice.   Near the end, Carl dozed a lot. Even when he was awake, he was not talking. By his side at nearly all times were two of our cats, Happy Cat, who was pretty well known as Carl's cat and was actually at Carl's feet when he died, and Snyezhka, shown above with Carl, who spent much time with him during his very last days--as if she knew. (They say cats can sense death.) Since Carl could not or was not motivated to talk but we were pretty sure was aware of what was going on (other than during his long dozes), we did the talking in order to maintain communication as much as possible. There is a lot of medical evidence that hearing is the last sense to go, so we counted on his being able to hear. Once in a while, he confirmed that with a tiny laugh or a small. We had friends, colleagues, and authors whose books he designed send their memories of how he had made their lives better. I read those to him. One o...

Cancer Diary: Understanding, Accepting, and Coping with Stress

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  (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), w...

Cancer Diary: Palliative Chemotherapy

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(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) dif...

Cancer Diary: Today would be Carl Leaver's 53rd Anniversary

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  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...

Cancer Diary: Thank You, Hoyer Lift

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  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)...

Cancer Diary: 5 Months or 5 Years? The Importance of Recognizing Early Signs

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  Colorectal cancer has a life expectancy of 4-6 months if discovered in stage 4. If discovered in stage 1-2, life expectancy is 5 years. (Note: Carl's Cancer Compendium provides longevity statistics for a wide range of cancers.) So many people die from colon cancer and colorectal cancer after brief periods of chemotherapy, if that, a imperative exists for watching for early signs of cancer is not heeded (or in some cases, they are simply missed or misinterpreted). I speak from personal experience because although Carl died from cancer of unknown primary ( CUP ), his oncologist was convinced that the original cancer was gastro-intestinal in nature although the colon was clear of the cancer by the time the cancer had reached stage 4 (which can happen in cases of CUP). So, assuming the oncologist was right about the original cancer, did Carl actually survive the 5 years without knowing it? Discovery at late stage does not mean the cancer arrived late stage -- it may have taken mon...

Cancer Diary: In His Death, My Husband Made Our Lives Better and That Made Me Feel Guilty

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  When Carl fell on February 23, we thought he might have simply twisted something. We didn’t know we were beginning a five-month sprint toward the end of his life — or that he would be diagnosed with not one, but five types of cancer, all in their final stages. There weren’t many “good” days between then and his death on August 16. And yet, in those months, Carl gave us gifts that would outlast him — gifts that would make our lives not just survivable, but better. That reality has filled me with a deep gratitude... and a quiet, stubborn guilt. Because while he was dying, he was also teaching me how to live without him. Carl had always done the cooking. I could burn toast without even trying. But with time running out, he started showing me how to prepare meals — simple at first, then a little more complex. It wasn’t just about food; it was about helping me feed a life he wouldn’t be part of. He taught me about landscaping too — when to prune, what to watch for, how to keep the veg...