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Found 6 results

  1. The announcement by Rush Limbaugh led me here- he's been an important voice in my life, and there's just nobody else like him; I wanted to understand what he's about to go through, that's how I got here. Until now, I never realized how many people are suffering from this and other horrible diseases, constantly in and out of hospitals and doctor's offices, I just can't imagine. So many are suffering quietly in their own homes, middle of the night, unable to sleep or to get relief from constant pain and misery. And to think that this can come on without any warning at all, and you're whole world just comes to a crashing halt. My heart aches for everyone contending with this horrible disease, I can't even tell you. How we take things for granted when everything seems to be going just fine, and we forget about those who aren't so fortunate. Well, I don't want to be one of those people. I don't know that I can ever help any of you who are going through such awful times, but here I am, feeling powerless to help but hoping to be able to do so. Starting tonight, my kids and I will start praying EVERY night for all of you (instead of the same old memorized prayers), especially those of you who feel like you're alone- I've always believed that we can tolerate anything if we're with the people we love; but loneliness is the worst evil in the world. I pray that no one who suffers from this disease ever feels like they're fighting this alone. I haven't navigated this site yet, but I'm really hoping to find inspiring personal accounts of those who are healing, and accounts of those who may not be healing but are finding peace and acceptance with their circumstances. I want to hear your stories.
  2. “You know, I heard that green tea/apricot pits/jogging/apple cider vinegar/kale/broccoli/mustard greens/fresh avocados/yoga/this miracle powder/oil/salve/etc., etc., etc. will cure your mom’s cancer. You really need to try it. It worked for my cousin’s friend’s stepmom’s brother. Let me get you the information!” If you have ever had a loved one with cancer, you’ve heard these offers. You know exactly how they sound. The personal heroism of a friend or neighbor or acquaintance or coworker, offered bravely to your face, can feel so affrontive and offensive. This is especially true when medical treatment plans are not working; when your loved one is especially vulnerable for any number of emotional or physical reasons; or— wait for it— when the person offering the miracle cure is otherwise uninterested, uninvolved, and/or unhelpful in the actual caregiving of the patient. There. I said it. Do not come up to me offering miracles, period. I don’t have the energy to explain to you that, while broccoli is great and we should all definitely get more exercise, they alone are not going to abate the tumors in my mom’s lungs. I don’t have the emotional wherewithal to be polite to you while staring in disbelief that you yourself have fallen victim to believing some scheme. And if you have not asked if we need anything, or brought us a cake or pie or casserole or loaf of bread in the four years since she’s been diagnosed, then you have an especially low level of credence or gravitas with me in terms of your interest in my mom’s well-being. If you are a caregiver, you know exactly what I mean. We are on the same page right now. We are all preachers and choirs (or pots and kettles) at once. But…that doesn’t mean we know what to do about these offers of help. As annoyed or hurt or exhausted as we may be, the fact remains that these are relationships we may need to maintain. Telling folks exactly how we think or feel about their unhelpful “help,” using all the words we want to use, is not exactly conducive to maintaining the relationships. So, we need a coping mechanism. We need a tool. At some point, off the cuff, in one of my more emotionally raw moments, when faced with one of these offers, I let slip from my mouth: “you know what would actually be helpful?” And, just as if in a sitcom, I jumped; surprised at my own words; time slowed to a crawl; I turned my head; I looked at my acquaintance, as if in molasses-slow-motion, terrified that she would be offended; and… She wasn’t! She looked right back at me, unaware of my sitcom-terror-moment, and said “what? What do you need? Let me help!” And my world shifted from a sitcom to a Disney princess movie. Time sped back up, birds chirped, the sun came out, the clouds parted, and music started to play. Well, that’s how it felt, anyway. Seriously: I was floored. Her genuine interest in helping had been proven, and I realized: she just didn’t know HOW to help, or WHAT to offer, so she had reverted to the only tip/trick/hack that she knew of on the topic. My point is: as caregivers, we are so consumed by all that we have to do that we cannot imagine anyone in our lives or networks being oblivious to our reality. But, my friends, they are. All of our friends (and relatives and acquaintances and neighbors and coworkers) are understandably consumed by their own realities. When they occasionally can fall out of their own orbits to see what we are up against, it takes a lot of time to catch up with the status of things, let alone to study up on what we might need or not need. This is time that the folks in our networks usually don’t have, my friends. So, if they are aware of some one-size-fits-all grab-and-go panacea, of course that’s what they’re going to offer. These are, after all, unfortunately readily available and highly advertised. Here’s the point: on that day that the skies cleared and my friend stopped in her tracks to ask what I actually needed, I learned that her heart was in the right place. Her intentions were good, even if ill-informed. And, I would venture to guess, that's the case 9x/10. And so, the “pivot” was born. This became my tool, and I offer it to you here in hopes that you can make use of it as well. (If you're a fan of the movie or musical "Legally Blonde," or if you love "Clueless" or "Mean Girls" or anything like that, this can alternatively be referred to as the "bend and snap." Don't ask). The “pivot” is just the name I give to my blatant usury of the assumed good intentions of the poor soul who offers me snake oil. Here is the script: Person: “I’m sorry to hear about your mom’s lung cancer. Have you tried making a smoothie from donkey fur? I hear that cures cancer.” Me: “OH my gosh, thank you, that’s so nice of you to tell me. Hey, ya know, I’m really covered up on Thursday. Can you bring mom some lunch?” BOOM. Done. Weapon deployed. (The caveat, of course, is that you have to have a ready-made mental list of assistance that would be useful to you. Frankly, I think this is always good to have, so that you can always respond productively when folks ask what they can do, no matter how they actually ask the question). Anyway: my favorite part of using the pivot tool? You will *very quickly* separate the wheat from the chaff. You will immediately be able to gauge whether the person offering the unhelpful help was actually interested in helping, or only being unhelpful after all. And, at the end of the day, they might actually come through.
  3. I've had a tough few months. My father died 2 months ago of long-term Parkinson's Disease. In the midst of her grief, my mother, who was the picture of health, collapsed and had a seizure. She had a small-ish tumor (<3cm) removed from her brain. She bounced back from that like a pro and was walking 2 days after. She is due to have gamma knife just to remove any residual malignancy. However, we found that the tumor had metastasized from her lung. To make matters worse, though the doctors originally thought it was Adenocarcinoma (lots of new treatments for that), it turned out to be SCLC. I'm totally distraught - the prognosis is so grim for this. I'm looking for some good news - any good news. The only thing I have to say is she is in excellent overall health and spirits, and the doctors were all amazed by her performance status. In addition, though by definition her disease is extensive stage, it's actually quite limited - a small tumor (2 cm) in her lung and the small-ish one in her brain, which was already resected. No other evidence of tumors. So, what I'm wondering is...we do hear these stories of people living 5, 6, 7, 8 years with this disease. Is the fact that she had such a limited spread actually good news, or am I kidding myself? Essentially, I know that the 2-year survival rate is like 5%, but I also know that by the time it's discovered most people have multiple tumors and metastatic sites. The doctors all said it was quite unusual to have just one small primary tumor with one small metastasis. Should I take it that her chances are better than average? For the people here who are long-term survivors or the stories you know of long-term survivors, did they also have a very limited spread?
  4. I'm a three and a half year survivor of Stage 2 Adenocarcinoma. I wanted to pay forward some of the great support and advice I received from others when I was first diagnosed and wrote a book about getting diagnosed, having my left upper lung removed, going through chemotherapy, losing my hair, and all the various points along the way. I included some terminology since I had no idea how to speak cancer as well as some resources - most of which I learned about after I was done and was researching for the book. Kirkus did a review of the book, (The Cancer Card, Dealing with a Diagnosis) and says: 'Reflective, upbeat, and hopeful; offers honest insight into the real trials and tribulations of a cancer patient as well as valuable advice for those facing treatment.' Here's a link if you have an interest: https://www.amazon.com/Cancer-Card-Dealing-Diagnosis-ebook/dp/B01LX8RIK1/ref=sr_1_1?ie=UTF8&qid=1476363189&sr=8-1&keywords=the+cancer+card+karen+van+de+water Please let me know if I can be of any help at all to anyone going through - it's a lot. I want to help if I can. All my best - Karen
  5. My wife of 30+ years (Alison) and I moved across the country to AZ in Sept 2015 for her work, and for me to continue recovering from another round of Pulmonary Embolisms. Nov 1, 2015 I took her to a local ER as her "sore throat" was causing making it hard to swallow. Nov 5th the massive tumors in her lungs, neck, and heart were diagnosed as small cell lung cancer. Further test showed it had spread almost everywhere except her brain. At 56 YO, and an incredible future ahead of us, we are devastated. My job now is just to make sure she's comfortable, and gets whatever she needs or wants. My issue is I cannot find a female Psychologist in the Fountain Hills \ Scottsdale area that can see her within the next FEW weeks (we want sooner than that) that also takes our insurance (Tricare West). Any leads would be appreciated.
  6. http://www.lungevity.org/sites/default/files/file-uploads/04-asking-family-and-friends-for-help.pdf http://ow.ly/WOd0I
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