The brain creates thoughts Yet rarely thinks of itself Un-self-seeing sentience – Cancer cells creep in No light cat’s feet involved here Only crawling death’s hands – Some say health is wealth Yet wealth can be penury If health is absent – Breasts are beautiful Yet can become pure terror At a small cell’s whim – Haiku does not come naturally to me – I tend more to prosaic bursts of thought with much syllabic activity. I do enjoy a challenge, though …
I was almost 11 years old when my brother was born. I’m the one of the three of us (me, middle sis, little bro) who has had the biggest health adventure (cancer) … at least until early March of 2012. One of my favorite memories of my brother as a little boy centers on a few-week stretch of time in the spring of ’69 when he was almost six, and I was about to turn 17. We were living in Coronado, the island village in San Diego Bay, on Alameda Avenue. The kitchen breakfast nook had a window that looked out on the driveway, and mom had put up a hummingbird feeder on the eave next to the window looking to attract some of the flock of hummingbirds that make the island home. We hit the daily double that year. The window sill was about five inches wide. There was an ample source of food – the feeder. A hummingbird pair seeking a perfect nest placement couldn’t do any better than that. We saw the nest at breakfast one morning – a small, perfect bowl for tiny hummingbird eggs – and my brother was riveted. Every morning, he would literally leap out of bed, race to the kitchen, drag a chair toward the window, and look to see if the eggs had hatched. One morning they had. We watched the hummingbird mom feed her chicks, we watched her give them flying lessons – a nail-biter series, trust me – and then we watched them all fly off to start the cycle themselves. Fly, mate, hatch, fly. I had always liked watching hummingbirds. Since that spring, I’ve been in love with watching hummingbirds, because it brought back the memory of a little boy’s joy at watching a story unfold outside his…
I’ve been quiet for a while. Been doing my one-armed paper-hanger imitation – in a good way – which has taken up too much of my time and attention. She’s baaaaaaaaack! And she’s almost 4 months overdue for her annual mammogram. Yep, a breast cancer survivor is late for her mammo – but it isn’t due to lack of effort on her part. Here’s the challenge: I have the money in hand for a diagnostic mammogram. However, there is *not* enough money in hand for a specialist visit to order said mammogram. And since your (not so) faithful correspondent here has no health insurance – thank you, cancer, you rat bastard – that’s a wrap. My frustration is magnified by my certain knowledge that the reason the mammogram has to be *ordered* is that said order means that the insurance company will pay for it when it’s billed. Of course, since I have no insurance, that’s why *I’m* paying for the mammogram. But I can’t get a mammogram, since there’s no order for said mammogram to ensure insurance payment for same. Crazy yet? Yep, me too. I’m also totally steamed … which is why it’s warm in here. We have created a healthcare payment system in the US that flies in the face of logic. I’m not the only one who thinks so, either. My buddy e-Patient Dave is banging away at some of the same issues as he tries to be a responsible healthcare customer. I’m on record with what I think are some valid health payment reform suggestions over on Disruptive Women in Health Care. And then there’s the ever-epic Jonathan Rauch article in National Journal that became an also-epic YouTube video exploring the issue “If Air Travel Worked Like Health Care”. All I have to say is … GAH! On both the get-a-mammogram issue,…
My good friend Andrew Spong posted something today on his blog that I took one look at and said, “STEALING THIS!” It’s not really theft if you give 100% credit, though, is it? Andrew talks about his “I have” project, and uses this image to drive the point home: What is the “I have” project, exactly? It’s crowd-sourcing health information in a way that makes it accessible and understandable to someone who’s just heard their name and [insert diagnosis here] in the same sentence. Patients, clinicians, experts of all stripes. That he’s kicking this off with “I have breast cancer” has high impact for me, because I just marked my 4-year breast-cancer-versary yesterday. That original diagnosis day – and before, and since – have been in turn marked by more Google searches than a human could count about breast cancer, oncology, radiation, lymphedema, lymphoma, lumpectomy, hormone suppression therapy, and a partridge in a pear tree. This is incredibly important. I’m not a PhD (Andrew is), so I trust him to kick this off and make it fly. Really. Here are the goals for the project, as he states them: What are the ‘I have’ project’s goals? To offer definitive answers to the question ‘I have [disease state]. What should I do?’ To produce 1 page signpost summaries of the most reliable, relevant, patient-focused, outcomes-oriented, evidence-informed health information available for a wide range of diseases. To publish outputs compiled with SEO best practice in mind to be promoted through social networks and communities in an effective way with the intention that they should appear above the fold on the first page of Google results for the disease they address. Even the best health information is useless if it isn’t discoverable. To harness the expertise of healthcare professionals, patients and curators in co-creating and sharing the…
A group of about 20 passionate e-patients, including e-Patient Dave his own self and yours truly, gathered around a biiiiig table on Monday in Philadelphia to talk about what an e-patient Bill of Rights might look like. I have to give a shout-out to my buddies at WEGO Health, particularly Jack Barrette, Bob Brooks, and Natalia Forsyth One conclusion: don’t call it the e-patient Bill of Rights. Since we’re talking digital healthcare, let’s call it the Digital Patients Bill of Rights. That conclusion was reached hours into the discussion, which ranged over topics from chronic conditions like diabetes, HIV/AIDS, multiple sclerosis, rheumatoid arthritis, lupus, multiple sclerosis, and fibromyalgia to acute illness like cancer. We had about four hours to hammer out a first-principles statement, and Mark Bard of the Digital Health Coalition deserves the Cat-Herding Nobel Prize for keeping a group of vocal, passionate, diverse e-patients on task. To lift directly from the Klick Pharma blog (Klick was one of the sponsors of the event, along with Pixels & Pills, Health Central, Care Coach, Kru Research, Radian 6, Red Nucleus, Think Brownstone, Verilogue, and a who’s who of health media sponsors): “After an intense four hours, we were able to reach consensus on the following key messages as a foundation to a Digital Patient Bill of Rights: Shared access to my data Attitude of collaboration and overall respect The patient is the largest stakeholder Transparency and authenticity across all areas Voice of the patient is a legitimate (clinical) source The right to efficient communication with providers who utilize the technology that we need” It’s a start. A damn good one. The Klick Pharma blog post also has a full list of all the e-patients who participated in the conversation. It was quite a day. Some of my thoughts about the conversation, and the event: Those dealing with chronic conditions have an even deeper need to be activist e-patients. They also have a greater level of knowledge, and can be true leaders in this on-going discussion. Each healthcare…
I had my annual mammogram this last Tuesday – remembering how last year’s formerly routine event wound up, to say I was a little nervous is a vast understatement. Here’s the news: I’m now officially a survivor. Looking back at the last 372 days, I have to say it’s been quite a ride. So many people have helped me, have lifted me up, have kept me from feeling that terrible aloneness that’s part of fighting a life-threatening disease. ‘Thank you’ sounds inadequate, but it comes from the deepest and most tender part of my heart. I will finish the first draft of “Cancer for Christmas” by New Year’s Day. Then it’s on to finding an agent, a publisher, or – best of all possible worlds – both. I’ll be reaching out to Save the Tatas and the Susan G. Komen Foundation, offering them a piece of the cover price in exchange for helping promote the book once it’s published. My goal is to help anyone in the fight – against cancer, or any other life-changing disease – navigate the medical car-wash and manage their medical care for their benefit. Because if you don’t, no one else will. 2008 has been quite a journey. I’m in an incredibly wonderful place, which I don’t know that I would recognize had I not had my dance with the Cancer Troll. 2009 is already a mortal lock for my best year yet – I wish you the same!
I lost my health insurance the other day – and I’m not going to look for it. I have reason to be very glad this didn’t happen last year, given the cancer-for-Christmas gift I received at my mammogram last December. Now that I’m in the self-pay column, I called the imaging practice where my next mammogram will take place to ask what the cost would be. I have seen Explanation of Benefits (EOB) statements from my insurer – when I had one! – that listed the above-the-line cost as $600 to $1,000. Then there was the ‘negotiated discount’, and the other horse-trading hand signals that brought the cost down to around $350, which the insurer then paid the doctor. Every EOB I’ve ever seen had this sort of dance on it – high initial cost, the insurer does a ‘look what a great deal we got for you!’ discount jig, and hey-presto, the final price is reduced by 50%-or-more. So, when I called the imaging center, I was bracing myself for sticker shock. I did get sticker shock, but in the other direction – a screening mammogram is $135, a diagnostic mammogram runs $120-$180, and ultrasound, if necessary, adds another $75. Meaning the worst-case cost scenario is….$255. Mention health care in any circle, and you’ll hear cries about costs spiraling out of control, of doctors who lose money seeing HMO patients, of hospitals taking it in the shorts on equipment and supply costs, of patients paying $200 for an aspirin (I guess that’s ’cause a nurse delivered it in a little paper cup?), of that last week of dad’s life when his hospital bill hit $100K. Here’s a question – could it just be because of managed care that costs have managed to careen out of control? I’m old enough…
My girlfriends Susie Galvez & Mary Foley have posted their most recent Girlfriend We Gotta Talk radio show on their website. This week’s guest is yours truly, the Mighty Mouth herself, talking about what it’s like to get cancer for Christmas. It’s quick, it’s fun, and it’s funny – give a listen!
Below is something that my good friend Mary Foley sent out to her Live Like Your Nail Color Club this week. First, let me say this: Grrlz, get your mammograms. Guyz, encourage the women you love to get their mammos. Trust me, it’s a very good thing. Also, check out Mary’s radio show with Susie Galvez, Girlfriend We Gotta Talk, on Thursday, Oct. 16 at 5:30pm Eastern on WHAN 1430AM in Ashland VA – or as a podcast on the GFWGT website starting on Friday, Oct. 17 – to hear me talk about how a mammogram saved my life when I got cancer for Christmas last year. Another thing I gotta say: Mary has been one of the MVP’s on my Fight-Cancer team. Bodacious, bold, and fierce. She’s the shizzle, all that and a bag of chips, the whole nine yards, and so much more. OK – here’s Mary’s message: Hey – are you familiar with my 4 steps for doing your nails and living like your nail color? Today I was thinking about STEP 1. STEP 1 is called “Preparation” because before you put on new finger or toe nail polish you have to prepare your nails. Take off old polish, trim, file, maybe do a little exfoliation to clean up your cuticles. Bottom line is that you’re getting back to your naked nails. It’s a great time to reflect on your true, authentic self. So many women put themselves down one way or another. Truth is there’s some really good stuff inside each of us, if we allow ourselves to remember. To shift from criticizing yourself to recognizing the good stuff, I recommend you ask yourself a simple question while you’re preparing your nails for new polish: Ask Yourself — > What’s 1 thing I’ve done recently I…
As a person participating in the fun-filled romp known as chemotherapy, your ‘umble correspondent has been able to make all sorts of wonderful discoveries. There was “anorexia”, wherein our heroine was introduced to the practice of picky eating. Not something she had been familiar with previously, at all. There was “chemo brain”, wherein she learned just how stupid “dumber than a box of rocks” really was. Is. Whatever. Today, she learned that the two can be combined in new and interesting ways. Say, f’rinstance, one learns that one’s blood is dangerously low in something called neutrophils – due to the aforementioned chemotherapy’s Sherman-like march through one’s bloodstream toward whatever cancer cells might have the temerity to remain within one’s corpus. (Note – there ain’t none, one just has to run the bases, like any other home-run hitter.) One reads up on neutrophils, and white blood counts, learning that a diet rich in beef, cooked mushrooms, and red/orange/yellow wegetables is just the ticket for getting that neutrophil level back up to the mark that will prevent our heroine from getting hit with Neulasta. That being the drug used to hammer one’s marrow into manufacturing neutrophils, while also apparently causing bone pain – IOW, not something our heroine is inclined to entertain the deployment of, since she’s got entirely enough chemicals runnin’ ’round her veins, thank you very MUCH. Anywise, the thought of some yummy beets seems like a good thing, and she hits the local Kroger in search thereof. What ho! Organic beets! With greens on top! On Wednesday, the beets are steamed and enjoyed, with a steak and sautéed ‘shrooms. Yum. She feels better already. The greens were left in the weg crisper, and today’s lunchtime seemed like just the time to wilt ’em, butter/salt ’em, and get outside ’em….
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