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Cancer Diary: The Frustrations and Obfuscations of Cancer of Unknown Primary (Occult Cancer)

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  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

Cancer Diary: Pets and Cancer II (They Are Not Immune to the Ravages of the Disease or the Need for Support)

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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

Cancer Diary: Cats with Cancer

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  Personal experience from the editor: When three of our six cats were diagnosed with cancer, it was at a late stage. (The number is normal; 50% of cats over the age of 10 end up with cancer.) Even talented feline oncologists cannot turn the clock back. They can try to stop the clock, but sometimes the damage is too great.  We lost Intrepid to cancer three years ago (and wrote a book about him). He survived only a month of chemotherapy; he was diagnosed too late, and several important organs were in the process of failure: kidneys, pancreas, stomach. His older "brother" (not biological) who came from Jordan as well was diagnosed at the same time.  Murjan  managed to survive three years on chemotherapy, but by the time he died last Sunday, he was on seven medicines, periodic hydration, and down to 5 pounds (from 16). He fought valiantly, but ultimately the cancer won. Likewise, our young Lynx Siamese cat, Snyezhka, has breast cancer, diagnosed at stage 4, treated with surgery,

When Pets Are Dying: Help in Understanding the Process and the Decisions

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  When my beloved Murjan was dying from cancer , I was desperate for information, but my husband was dying from cancer at the same time, which gave me very little time for seeking out answers. Murjan was almost 19 years old and had been on chemotherapy for three years. His vet did not know how to help him further, but she apparently did not want to admit that -- and subconsciously I did not want to admit that she did not know what to do and had essentially given up on him. I was unable to get timely appointments, or any appointments at all, even in the emergency room. We do not have any vets in town. I have to travel no matter what. Murjan's vet was located an hour north of us. To get help, I contacted other vets. A vet to the west of us recommended hydration, and so we stated hydrating Murjan every other day. His vet to the north allowed as to how that might help. But Murjan kept losing weight. He was down to 5 pounds (from 16 pounds) when he died.  Finally, a vet to the south of

Cancer Diary: Focus on Living? Focus on Dying? An (Almost) Unwinnable Scenario and Two Different Paths Chosen

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  In March, Carl was diagnosed with advanced stage 4 (metastatic) cancer of unknown primary. In August, he died.  When we got the diagnosis, we had to choose a detour from our normal life. There was no way to move straight ahead with life as usual because, you see, there was this big obstacle, called cancer, straight ahead. So, the question was to detour to the left and choose a treatment option, hope, and focus on the living or detour to the right and let nature takes its course, choose to accept the situation at face value, letting nature take its course, and focus on the dying. To fight or to surrender? There was no logical superiority of either path, not knowing what lay behind the cancer tree and how long was the path for it  continued out of sight. We decided not through reasoning but through conditioned reaction to fight. That is what we had done all our adult lives, as we successfully navigated life for four children, two with rare birth defects, and three grandchildren, two wi

Cancer Diary: Cancer Is Not Cancer Is Not Cancer Is Not Cancer

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  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

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), with m

Cancer Diary: Late-Stage Cancer Diagnosis: Fast-Tracking Decision-Making on a Roller Coaster

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  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

Cancer Diary: Thyroid Cancer Is in the News -- or at least in the Rumors -- These Days

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  With the rumors floating about these days, especially inside Russia, about Putin's health and a visiting oncologist, thyroid cancer is in the news. While I have no inside information (thyroid cancer? Parkinson's, growing old? all in the minds of the rumor mongers?) and therefore will not comment on Putin's state of health, I will note that Carl's Cancer Compendium recently fleshed out a fair amount of information related to thyroid cancer (which just might be helpful to people other than Putin who may be exhibiting some symptoms of one of the more treatable, if caught early, cancers). From the site: Thyroid cancer Definition : A cancer that develops in the cells of thyroid gland, a butterfly-shaped gland located just below adam’s apple in the neck. It causes difficulty swallowing hoarseness, lump on the neck, and swollen lymph nodes in the neck.  Types  include Papillary  Thyroid Cancer Follicular  Thyroid Cancer Medullary  Thyroid Cancer Anaplastic  Thyroid Cancer Ca

Cancer Diary: The Hospice Promise and the Hospice Dilemma

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  Choosing hospice is choosing to die. That may sound like a stark statement, but it is, in my experience, a true one. Now, when confronted with cancer, one can choose to live at home, not receive treatment, and not be in hospice--at least, for most of the course of the disease. That is what my sister-in-law did. She chose to die naturally and not fight nature, in part because she had no insurance (and did not want to rack up major debt for her husband or jeopardize their life savings and house) and in as much part due to her religious beliefs. She did go on hospice during the last six weeks of her life; she needed medical attention, and the hospital, to which she was ambulanced, moved her to in-patient hospice as a compromise. She was placed in a very nice New Hampshire hospice, Hyder Family Hospice House , known simply as Hyder House. Not all hospices are this attentive, gentle with the family, well-appointed in interior ambience and amenities, or surrounded by such beautiful landsca

In Memoriam: Murjan Leaver

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  Murjan went over the rainbow bridge tonight after a valiant three years of fighting lymphoma and with such indomitable spirit that even on Sunday, after his hydration, he jumped down from the chair he was on, certain that he still had the springing power that he has always had. But he fell and landed on his side. Clearly, he hours were numbered.  His last days and hours were so typical of cancer patients. (Check the MSI Press website in a few weeks; there are plans for a cancer resource page for people and animals -- those questions that one can never find an answer to in spite of how much time you spend on Google; the tentative page name is Carlr's Cancer Compendium. And check out the book on cancer by Sula, Parish Cat at Old Mission ) First, the chemotherapy stopped working. Then Murjan lost interest in food, then in drink -- and then his spirit left his body. Just like his owner, MSI Press graphic designer, Carl Leaver, a month earlier. Murjan was born in Jordan and moved to S

Cancer Diary: The Spouse As Caregiver Dilemma

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  Times were tense. I was caregiving for my husband, dying from cancer and on chemotherapy that required multiple trips a week to a distant hospital, my spina bifida daughter in a city a half-hour away who had lost her caregiver during the days of covid, and a CHARGE Syndrome adult son living at home -- and trying to run a business at the same time. The son tried to help out as best he could with his own care, but he did not always have the skills to do so. To wit, the scene above that ensued when he tried to help out by making his own breakfast -- one that at least brought a moment of levity into a too-tense life. Speaking from personal experience, the spouse (in this case wife, but it really does not much which spouse is pressed into the role) who ends up as the caregiver for a cancer patient is in a no-win situation, emotionally and physically. The role of spouse is to support the spouse and to navigate through life together, IMHO. That complicates the matter of caregiving. The two