tag:blogger.com,1999:blog-62161951730397563762024-03-13T21:57:15.157-04:00Uppity Cancer PatientThe Survivor Who Knows What She Wants and Demands It!soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.comBlogger105125tag:blogger.com,1999:blog-6216195173039756376.post-41068946731864662752022-05-31T18:30:00.000-04:002022-05-31T18:30:49.600-04:00Dying of Cancer<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg2e-ujoWYrKf9RufB7dJ7cUYjCHuLsHJzTAavrz4UK5Gmf2ynsy2V-oBRu2lybqbFeZrjQvpO04L5sBC13zL4wplinktdYo8plZeBgIO5v_6gYUweEN4gsZSPtR1xuFof4ZO6O3B78OzlVyMStcW8jt8LvcDJZmDmBpBPbWgI8eUPv74d1aE1uGN8/s225/notdead.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="225" data-original-width="225" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg2e-ujoWYrKf9RufB7dJ7cUYjCHuLsHJzTAavrz4UK5Gmf2ynsy2V-oBRu2lybqbFeZrjQvpO04L5sBC13zL4wplinktdYo8plZeBgIO5v_6gYUweEN4gsZSPtR1xuFof4ZO6O3B78OzlVyMStcW8jt8LvcDJZmDmBpBPbWgI8eUPv74d1aE1uGN8/s1600/notdead.jpg" width="225" /></a></div>I hate the phrase "dying of cancer." Someone used that phrase in a conversation today, talking about a friend's husband who she said was dying of cancer. The image of an emaciated man curled up in a hospital bed, eyes staring vacantly, came to mind. But I wonder if really the man in question was sitting in a wing-back chair, watching his favorite show. He's not dying in that chair. He's living, watching TV, going to treatment every few weeks, his doctor telling him he's doing okay. Either way, the same words are used to describe the same cancer patient, all of us are seen as dying of cancer.<p></p><p>I remember when Valerie Harper was diagnosed with metastatic lung cancer to the brain in 2013. Nasty diagnosis. I know for me, I wondered how long she'd survive. But Harper took a different view than everyone else. <span class="st">“Don't go to the funeral until the day of the funeral," she stated. And that's how she lived her life, until she finally succumbed to the disease in 2019, 6 years after her original metastatic diagnosis.<br /></span></p><p><span class="st">Words matter. How we talk to ourselves and others about the disease make a difference in how we experience our own cancer, how others experience our cancer. When I was first diagnosed with metastatic breast cancer in 2012, my father and brother both began calling me once a week, an unusual occurrence since I never heard from my father and rarely heard from my brother. Both men are doctors and I assumed they were calling out of guilt, offering belated support. It took me several years to realize that both men likely were calling out of guilt because they assumed I'd be dying, soon. Thank God I didn't realize what they were probably thinking. Because my own belief that I'd survive was key. If I had believed that I was going to die quickly, that would have increased the odds that I would have gone ahead and indeed died soon. No guarantees. People do survive in spite of what they believe. But it sure does help, when the chemo is going in, to think that somehow, some way that chemo will kill the cancer and help me stay alive. It's certainly more pleasant to go through chemo that way.</span></p><p><span class="st">So I tell myself and others that I live with cancer. And with that in mind, I change as many of the cancer words that I can. When I go to treatment, I say that I am going to spa (this can be confusing since I've had many believe I was literally going for a spa day with clay masks and massages). When scans find a new area of cancer, usually this is referred to as progression in the medical profession, evoking images of the cancer uncontrollably spreading, eating the body away. But I see cancer more like something that can come and go. In the world of multiple sclerosis, the phrase used when the disease recurs is "flare up," indicating there are times when the disease comes and times when the disease is more subdued. So flare up is the term I use when new spots are found. With good treatment, so far, these spots have been knocked back and I have been able to go back to living life.<br /></span></p><p><span class="st">Definitely, there are cancer patients who are diagnosed and they quickly decline and die. But research has progressed to a point that there are many Stage IV cancer patients who do comparatively well for years. As one oncologist put it soon after my diagnosis, doctors just don't know how a patient is going to do after cancer is found. It depends on the biology of the tumor and the biology of the person with that tumor. I know people with metastatic breast cancer who are still doing well after 20 years. It can happen. My challenge lately has been that after 10 years of living with this disease and a recent flare up, I'm wondering if my time is up. I gotta tell you, thinking that I might be about to decline and die is not a fun way to live.</span></p><p><span class="st">An ex-boyfriend of mine had a grandfather who was diagnosed with cancer and believed he was going to die, so decided not to waste money and buy anything new. For 20 years that man did not buy anything new. Twenty years. I still wonder to this day if that included not buying new underwear (I do hope he did). Can you imagine though, living life believing you're imminently going to die, so you sit down and decide to stop living while you're still alive? That's not how I want to live. Yet I find myself lately basically doing just that. I've started to wonder whether I should renew subscriptions, whether I should plan a trip, whether I should adopt a new dog once my 16-year old Chihuahua passes on. </span></p><p><span class="st">So once again, I have to figure out how to live with cancer, in spite of a recent flare up of spots on my ribs (these were treated with Cyberknife radiation). I need to evict the death knell from my own head. I need to think of these last several months as a flare up that has responded to treatment, and that I'll figure out how to keep enjoying life, even if I've got a few new side effects added to my card.</span></p><p><span class="st">When I get into one of these moods, which isn't often, I remember the scene from the movie Monty Python and The Holy Grail in which a villager attempts to hand a sick neighbor over to the death cart master in order to claim money for the find. "I'm not dead yet," the sick person disputes, spurring an argument as to how dead he really is, the sick person continuing to vehemently insist that he is not dead. Every time someone treats me as if I am one foot in the grave, or if I begin to believe that about myself, the cry "I'm not dead yet" rings through my mind. Because I am not dead yet. I need to believe that. Because whether I live 5 more months or 20 more years, I don't want to live it expecting to die. That's no fun, and, frankly downright depressing. And certainly, I want to make sure I feel alive enough to at least buy myself new underwear. <br /></span></p><p><span class="st"><br /></span></p>soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-4395943466431861512021-10-17T17:16:00.003-04:002021-10-17T17:16:59.227-04:00Happy Birthday, You're Not Dead<p></p>Today is my birthday. I am 57 years old. For many, that is not too old. Frankly, it's pretty solidly middle-age in this world. But for me, it's old. Really old. <p></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcwjk30IIv7hFmE8PJj1gSBPiGasJVyCRfCwFOiiT8-ALNiwPGCjrfDnpFRNMCNOKYrDBFLapk7Is2Ou97YtFpBV-5zEyQV5zBxrloA1tMdD7InKcA0KO_pvH34iI6e3rF0_tUpf0Ffq0/s409/birthday.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="409" data-original-width="350" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcwjk30IIv7hFmE8PJj1gSBPiGasJVyCRfCwFOiiT8-ALNiwPGCjrfDnpFRNMCNOKYrDBFLapk7Is2Ou97YtFpBV-5zEyQV5zBxrloA1tMdD7InKcA0KO_pvH34iI6e3rF0_tUpf0Ffq0/w171-h200/birthday.jpg" width="171" /></a></div>I had just turned 47 when I got the news that I had Stage IV metastatic breast cancer to the liver. Before that, I'd always been stunningly health. Two years prior, my beloved mother died of a massive stroke, and there'd been question about how to locate her Advance Directive. The search took long enough that it was about to get messy, but someone finally found the document and we put her wishes into effect. The incident unnerved me enough, though, that I'd figured out if I got a MedicAlert bracelet, I could have that company keep a copy of my Advance Directive on file and health officials could call the company for a copy of my final wishes.<p></p><p>When I ordered the medical id bracelet, a lovely young woman called me to ask what I wanted engraved on the id. Diabetic? Congestive heart failure? Usually wearers listed a health condition. I had none to give, so I coyly suggested high cholesterol. Nope. Finally, we settled on "Call MedicAlert." That worked. But clearly, I had few health problems. I was still in the world of, I'll live a long, long, long time and die of heart failure or stroke at an advanced age, like my mother had done, and her mother had done before her. So the words "You have lesions on your liver" coming from the nurse's mouth didn't compute. Cancer? What the...? Stage IV breast cancer at 47? Sweet Jesus. No one in my family died of cancer. I wanted to go back into the They Who Die of Stroke group.</p><p>But let's be real. Life is not fair. I was now a member of the Cancer Club, sporting a fresh case of HER2+ metastatic breast cancer like a new Scout's badge. I hadn't even worked for it. Sure, I carried a few extra pounds and I had spent some time drinking a little too much. But HER2+ cancers tend not to be linked to lifestyle factors like fat or alcohol. And frankly, if fat and alcohol were the key, most of my family would have joined me on that cancer journey long before. Nope, that extra mouthful of sour cream increased my odds of heart disease but not of HER2+ breast cancer. I was just unlucky. HER2+ breast cancer tends to hit more younger women, the women less likely to be scanned because they're considered at lower risk.<br /></p><p>When I was first diagnosed with cancer, I didn't think about the possibility that I might die. Sure, I made certain that my Will and Advance Directive were up to date. But my main focus was on getting through the treatment and tracking my progress, which luckily was very good. Looking back though, I realize there was a good chance that some around me assumed I was going to die. My estranged father and brother, both doctors, began calling me once a week to talk, which was unexpected. I didn't even stop to think that either of them were assuming the cancer would kill me. Frankly, I'm grateful I didn't know better. My liver was covered with lesions. Any doctor hearing this would, I'm sure, assume the patient in question didn't have much time to live. But I focused on the image of that cancer decreasing and going away. Weekly Taxol and Herceptin and incredible medical care made that happen, saving my life. And now, 10 years later, it is my father who is the one who is gone. You just never know who is going to go when. </p><p>I have the bad luck of having Stage IV cancer, but also the good luck to have a cancer that so far has responded to the treatments aimed at it. And I have the good fortune to be assertive when it comes to my medical care. It's exhausting, but I push for good medical care, and do a great deal of medical literature research via PuMed.gov and other authoritative sources, which I then take back to my care team for shared decision making. As I tell others, my doctors and nurses care about me and want me to live, but at the end of the day, this is a job for them, but for me this is my life. </p><p>So here I am, 10 years later, turning 57, still alive. It is hard to believe. When I realized the milestone today, I began to tear up. It's been a long 10 years, some of it good, some of it bad. But in the famous words of Stephen Sondheim, "I'm Still Here." Happy birthday to me. And here's to not being dead.<br /></p>soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com2tag:blogger.com,1999:blog-6216195173039756376.post-28199533400049120642021-08-30T13:16:00.002-04:002021-08-30T13:16:30.321-04:00Finding A Higher Power<div class="fix-z-index-when-showing-intro-js" id="page-wrapper"><div id="page-region" class="page-loaded"><div id="page-layout" class="network-layout" data-tab="feed"><div id="content-region"><div id="feed-layout"><div id="feed-container"><div class="list-region"><div id="feed" class="community-feed"><div>I've never been comfortable with the traditional Christian language sometimes used in the Big Book of Alcoholics Anonymous (I've been sober for a while now). A major tenet of Alcoholics Anonymous is to turn to a higher power for help. I figure something is out there, I just don't know what that is. But I don't feel comfortable with the idea of a God on high who makes things happen (a lot of very bad things happen and a god who doles out bad things scares the bejeebies out of me). What works for me is to see AA as a whole as my higher power, the fact that millions of recovering drunks are out there running meetings, volunteering to answer calls, making bad meeting coffee. That God with skin on has kept me sober for years. </div></div></div></div></div></div></div></div></div><div class="fix-z-index-when-showing-intro-js region-animation-complete" id="flyout-region"><div id="flyout-layout" class="detail-flyout-layout" data-tab="post-detail"><div id="flyout-right"><div id="flyout-content-region" class="scrollable-area"><div id="post-detail-layout"><div class="content-region"><div id="detail-layout" class="has-more-posts"><div class="detail-layout-content-wrapper"><div class="detail-layout-description mighty-wysiwyg-content mighty-max-content-width fr-view"><p>I'm a big fan of the cartoonist Dan Piraro and interestingly he wrote a <a href="https://www.bizarro.com/blog/2021/8/29/any-last-annoyances">blog post on the subject of God</a> that really clicked for me. His point in that post was that we are all part of a larger creative force; we are all part of one being. Now that I can get into. Thank goodness for the second half of the Third Step in AA, God as we understood God. That part of Step 3 means all us recovering drunks get to choose a higher power that works best for us. And Piraro`s creative force sounds a bit like my AA as a whole higher power, just bigger. Maybe my higher power just changed a bit. Either way, I get to choose.</p><p>Here is the meat of what Piraro wrote:<br></p><p>"In a previous post, I wrote about 'the finger pointing at the Moon,' which is a Buddhist metaphor for how we sometimes fall in love with the pointing finger (religion) instead of the Moon it is pointing at (God). That rings a bell for me. Another concept I very much like is that we are not independent individuals but small, interdependent parts of an enormous being of creative force.</p><p>It is rather scientifically undeniable that nothing in this world lives independent of everything else, and in that sense, nothing is independent; it’s all one thing. We cannot live without air, water, microorganisms, and on and on, and those things cannot exist without millions of other things. Ergo, there are no independent individuals, only pieces of worlds and systems much larger and much smaller. </p><p>I’ve come to think of that enormous engine that continuously generates and sustains life as the symbolic Moon that so many fingers are pointing at. Does this giant, living thing have intention, intelligence, purpose? We can’t know for sure but once you start to dial into it, it certainly seems to. </p><p>And if this enormous force of life and creativity is what you want to call 'GOD' (or 'Skippy' or 'Barbara' or 'Zardoz') that’s fine, but it is not a person living somewhere outside of here, we are something living inside of it. In fact, we are parts of it the way microbes are parts of us."</p><p>I've experienced a lot of sadness and grief in the last several years and that sadness doesn't seem to have an end. The idea of a God on high, a single, above-us entity, has never offered comfort to me. But the idea of being part of a larger whole, a sort of universe-encompassing group hug, offers me some peace. An upset friend recently indicted me of being desperate for connection--long story, she's in a bad space and I'd ticked her off, so this was her angry response. My reply? Yes, I do want connection. We all do, especially during these isolated Covid times. So if I can hunker down into the warmth of a creative force group hug, sucking up all the connection I need, I'm taking it. Thank you, Dan Piraro for your often hilarious cartoons and your most excellent thoughts on God. I needed that. Now get on over here and get in the group hug.</p><p><br></p></div></div></div></div></div></div></div></div></div>soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-53788092751418448622021-05-21T12:42:00.001-04:002021-05-21T12:42:09.989-04:00View From Stage IV: Ringing The Bell<div>Today, during my monthly treatment, another cancer patient rang the bell celebrating the end of treatment, while the staff happily and loudly clapped in congratulations. Meanwhile, hooked in to my never-ending treatment supply, I darkly thought the following:</div><div><br></div>For metastatic cancer patients, do they get to ring the bell as they die? Because we all know that's the end of treatment for them.<div><br></div><div>Black thoughts on a metastatic cancer treatment day.</div>soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-56718478070101295732020-09-27T16:14:00.002-04:002020-09-27T16:14:59.651-04:00Can You Help Stop The Stripping Away of Protections For Pre-existing Conditions?<p>I remember the day in 2013 when the Affordable Care Act (ACA) made health insurance available to everyone. I had been diagnosed with metastatic breast cancer just the year before, was still able to work, but terrified that if I lost my job and my insurance I would not be able to get insurance, not be able to afford my treatments, and then would have no choice but to stop treatment, so would simply die. At that point I was living in a world where a pre-existing condition like cancer meant no insurance company would even talk to me. I had personally experienced insurance denial, once being denied health insurance for having seen a counselor one time in the prior twelve-month period (I'm not kidding). <br /></p><p>And I'd seen the effect of insurance denial on others. A dear friend had hepatitis he'd somehow gotten as a kid, and the only way he could get insurance was through a state high-risk insurance pool (not every state had these). He spent most of his monthly income on that insurance, and in the end that exorbitantly-priced insurance refused to cover the liver transplant he desperately needed. He was only able to stay alive because his medical team managed to somehow get him coverage via Medicare. </p><p>I'd also witnessed, while working as a temporary worker at a insurance company, insurance agents boasting that they'd denied insurance to various applicants, a man who had just broken his leg, a woman who had applied for insurance just after becoming pregnant. Agents would brag they'd cut costs for the company by putting a rider on parts of an applicant's body, such as a man's heart, since he'd previously had a heart attack. A rider meant nothing regarding the man's heart would be covered by the policy (tests, needed medications, etc.), guaranteeing the policy holder would not be able to afford medical care for his heart condition. Denial of insurance coverage was that easy, and people suffered and died because of it.</p><p>So when I was diagnosed with Stage IV cancer I was terrified of the moment where I would no longer be able to work and so would lose my work-based health insurance. Because of my terminal status, I would be able to get Social Security Disability Insurance (SSDI), although it wouldn't be much, but I would not be eligible for Medicare until two years after receiving SSDI - this rule is still in place. Cancer care is expensive, although all medical care is expensive nowadays. My current treatments cost roughly $27,000 per treatment and I receive those treatments every three weeks. A two-year waiting period for Medicare would mean those costs would lead to me losing my house and all my savings, and I'd likely be forced to stop treatment. And because there were no protections for those with pre-existing conditions at the time, after losing my job-related health insurance, I would not be able to get other health insurance to help cover the cost of my too-high-priced treatments.</p><p>That changed when the ACA was passed and health insurance was provided via the federal exchange. One of main tenets of the ACA legislation is that<span class="st"><span> health insurance companies can't refuse to cover you or charge you more just because you have a pre-existing condition. With this new law in place, I would be able to get health insurance and that gave me great comfort. And if you're questioning how insurance companies are faring in the world of ACA, they continue to see <a href="https://www.kff.org/private-insurance/issue-brief/individual-insurance-market-performance-in-2019/" target="_blank">record profits</a>. As the saying goes, the house always wins. <br /></span></span></p><p><span class="st"><span>I do know that Trump recently signed an executive order stating protections for pre-existing conditions, however, <a href="https://thehill.com/policy/healthcare/518112-trump-signs-largely-symbolic-pre-existing-conditions-order-amid-lawsuit" target="_blank">this is largely symbolic</a>. The only real protection in existence at this point is the current legislation in place via the ACA.<br /></span></span></p><p><span class="st"><span>Now to what is keeping me up at night. With the death of Ruth Bader Ginsburg, the Trump </span></span>administration is pushing yet another Supreme Count nominee through, and this one (Amy Coney Barrett) is on record as <a href="https://www.businessinsider.com/trumps-supreme-court-nominee-vocal-opponent-of-obamacare-2020-9" target="_blank">supporting the removal of the ACA</a> and its protections for those of us with pre-existing conditions. If this nominee is confirmed she would be in place to hear and decide a new lawsuit against the ACA led by Texas and supported by the Trump administration coming before the Supreme Court on November 10. </p><p>The Supreme Court confirmation hearings start on October 12, 2020.<br /></p><p>Right now it appears most Republican Senators will vote in support of this nominee, but if people speak up, this might change. The only other time this situation has happened was during President Lincoln's administration. Supreme Court Chief Justice Taney died on October 12, 1864 and Lincoln chose to wait until after the election to <a href="https://www.lincolncottage.org/lincolns-election-year-supreme-court-nominee/" target="_blank">put forth his Supreme Court nominee</a>. Lincoln did this in order to honor the voice of the people who were speaking through the democratic process of voting. In the same way, this is an election year and people are voting right now. As in 1864, a Supreme Court nominee should not be put forward until after votes have been counted and our voice has been heard. Certainly, this was the popularly held view of Republicans voiced in 2015, another election year. When Merrick Garland was put forward as a Supreme Court nominee early in 2015, Republicans in the Senate fought and delayed that nomination until after the election. </p><p>No matter what your own political leanings, all of this is of vital importance. The voice of voters in this election need to be honored, and those with pre-existing conditions need to be protected.<br /></p><p>So I'm asking you for a favor. I do not have a Senator since I live in Washington, DC (think taxation without representation). But you do. I am hoping you would be willing to take 10 minutes to find your Senators' contact information and copy and paste the below email to send to those Senators. I'm not sure I've had a decent nights' sleep since 2015, but this latest situation has me up at night even more. And you'd be helping millions of others as well. Everyone ends up with a pre-existing condition, thanks to age, and in this pandemic millions more are entering the world of pre-existing conditions due to the <a href="https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-long-term-effects/art-20490351" target="_blank">long-term impact of COVID-19 on the heart, brain and lungs</a>.</p><p>Whatever, you decide to do, thank you so much for reading this. It's a scary time for anyone with a health condition. I'm just hoping we don't go back to the world of being denied insurance for having seen a counselor one time in the last year, for having a broken a leg, or for having had a heart attack. That was a cruel and scary world to live in, and we need to keep protections in place for anyone with a pre-existing condition. Thank you.<br /></p><h3 style="text-align: left;">Contacting Your Senator <br /></h3><p>This is where you can find <a href="https://www.senate.gov/general/contact_information/senators_cfm.cfm" target="_blank">Information on how to contact your senator.</a></p><h3 style="text-align: left;">Letter to Send to Your Senator <br /></h3><p>Dear Senator:<br /></p><p><span class="TextRun SCXW106267561 BCX0" data-contrast="auto" lang="EN-US">With just weeks until the 2020 election, the Trump administration is rushing to confirm </span><span class="TextRun SCXW106267561 BCX0" data-contrast="auto" lang="EN-US">Judge Amy Coney Barrett</span><span class="TextRun SCXW106267561 BCX0" data-contrast="auto" lang="EN-US"> as a Supreme Court nominee, while the people of America are in the middle of voting. Ms. Coney Barrett supports the aim of ending the Affordable Care Act </span><span class="TextRun SCXW106267561 BCX0" data-contrast="auto" lang="EN-US">(ACA) </span><span class="TextRun SCXW106267561 BCX0" data-contrast="auto" lang="EN-US">and the health and economic security it provides to millions of people across the country. </span></p><p><span class="TextRun SCXW106267561 BCX0" data-contrast="auto" lang="EN-US"><span class="TextRun SCXW106267561 BCX0" data-contrast="auto" lang="EN-US">If Ms Coney Barrett is confirmed, she would</span><span class="TextRun SCXW106267561 BCX0" data-contrast="auto" lang="EN-US">
be seated in time to participate in oral arguments in the Health Care
Repeal Lawsuit (California v. Texas) the Trump administration is backing, seeking to invalidate the Affordable Care Act.</span> <br /></span></p><p><span class="TextRun SCXW106267561 BCX0" data-contrast="auto" lang="EN-US">The protection of legislation that ensures coverage of pre-existing conditions, especially in this time of a pandemic, is of vital importance to me and my family. I urge you to reject this nomination and wait until after the current election to consider any other Supreme Court nominees.</span></p><p><span class="TextRun SCXW106267561 BCX0" data-contrast="auto" lang="EN-US">Thank you for you time.<br /></span></p>soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-69638761772891939082020-08-11T20:58:00.000-04:002020-08-11T20:58:10.416-04:00Cancer Gossip<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGIuzkK2kHLuBU-KHOMdw9C1G0TF6Dgo7w6zTYXcfEClgG_TLeMEj9A3TBxnTsQ6yWEjUtZTHjc98v5R7Dke2k1iV0ArTHm8K0lYFln8Lh_9kRgrYA_vZWYjI9DjyK6g5j0k2PHst7KhQ/s290/gossip.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="235" data-original-width="290" height="162" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGIuzkK2kHLuBU-KHOMdw9C1G0TF6Dgo7w6zTYXcfEClgG_TLeMEj9A3TBxnTsQ6yWEjUtZTHjc98v5R7Dke2k1iV0ArTHm8K0lYFln8Lh_9kRgrYA_vZWYjI9DjyK6g5j0k2PHst7KhQ/w200-h162/gossip.png" width="200" /></a></div>Because I do not look sick, once in awhile I get to enjoy the experience of being talked about. Not directly, but still, the topic is about what is happening in my life. Today, for instance, I logged on to an Alcoholics Anonymous Meeting via Zoom. It was a new meeting for me, so no one on the call knew me or my situation. The women chatted amongst themselves, talking about their day, their going-ons, their lives. Part way through the conversation, one of the women asked about another woman who was not at the meeting at the moment. <br /> <br />A bit of a hush went through the crowd, and another woman replied, "Oh, you haven't heard. She was diagnosed with Stage IV cancer." A collective moan of misery seemed to go through the virtual room. The sense of pity and sorrow was palpable. Now I'm not saying it wasn't right or decent for these women to feel sorry for their friend. That is a good thing. But, still, I was there, someone who has been dealing with Stage IV metastatic breast cancer for eight years. And hearing that "she's dead" energy was certainly not what I needed at the moment. The other women didn't know about my situation, so I can't fault them. It is a fact that a diagnosis of Stage IV cancer of any kind is a horrible thing. For too many, it is a fast decline and horrible death. I get it. Not good news, and certainly something that should engender sympathy.<br /><br />In my case, however, I have been very, very lucky. Thanks to the hard work of life-saving medical researchers, I've been allowed to continue my life with good quality, relatively few side effects, and the ability to keep working for eight years, although I've recently left work on medical leave. This is a different story of cancer. There is a good chance that I will die earlier than my family's good genes would have allowed, but, still, I'm here. And the me that is here is tired of hearing about cancer and tired of hearing the automatic pity fill the room when the news of a Stage IV diagnosis is brought to light. Oh, for one day of no cancer pity, misery, or conversation. That would be a day of true relaxation.<br /><br />Generally I do not talk about my cancer diagnosis. I've discovered the hard way that it's a bit like admitting to a mental illness. People make automatic assumptions about me, and too often I've had the tone or look of pity thrown my way. I'll never forget being introduced to the new head of nursing at the infusion unit I had been going to for several years. In a medical setting I will throw out my Stage IV diagnosis in my intro to a key person just because it's helpful for them to know this detail in their work with me. This nurse had previously worked on the hospital's oncology floor where she had dealt with many other cancer patients. Thinking about it now, I realize that she likely had been dealing with patients who were not doing well, those sick enough to need a bed in the hospital's oncology unit. But in my case, I had been living a life of targeted therapy, continued work, a recent marriage, and nice vacations. We were coming from different places. So, based on her experience, when I told her that I was one of the Stage IV folks in the infusion unit, her look of pity was immediate and piercing. And my reply was just as immediate.<br /><br />"I don't need pity," I said. She was slightly embarrassed and chastened, and with a quick apology, she walked away. The gap between us was clearly my lack of knowledge of her previous cancer experience dealing with probably very sick patients, and she was clearly not realizing that she, as a medical professional needs to be aware that her patients likely look to someone like her as a barometer of possible survival and wellness. In this way, I have been very lucky as well. The nurses who worked with me for the first several years treated me the same as any other patient entering the infusion unit. They knew my survival would hinge on luck and good treatment, so didn't make assumptions on how I was going to respond. They joked with me, asked me about my life, behaved as if I had the same chance of survival as anyone else. Clearly, I responded well.<br /><br />Cancer is a complicated topic. As I said, many with a Stage IV diagnosis do not do well. But there are others who are biologically lucky and respond to treatment. Sadly, currently there is no way to tell who is going to have which response. The trick of living with metastatic cancer is how to walk that thin line of which way will it go. Having strangers oooh and aaaah in pity does not help with this at all. I was tempted, during today's virtual meeting, to stand on a box and tell those women that they have no idea how this friend of theirs is going to fare. The best thing they could do for her, as a friend, is offer concrete support (cooked meals, grocery shopping, rides to appointments) and the hand of quiet support. But I did not stand on a box during today's Zoom chat. In fact, I didn't say anything at all. Frankly, sometimes I'm just tired.<p></p><p>I still don't know how to handle it when pitying cancer gossip happens and I'm in the room. In the past I have given myself permission to leave when the topic of cancer comes up, and I can still do that. So the question is why am I writing this? I guess it's just to let people know, from a cancer person's perspective, what it's like to be the unwitting subject of a conversation. Truth is there's really no way to know who is dealing with what illness at this point in time since targeted therapies are much more common, and these leave a person looking like anyone else (no lost hair, fewer side effects, etc.). Along with this, old outcomes of cancer have also changed. New therapies mean more people are living longer, better lives. So next time you hear about someone's cancer diagnosis, you can assume that this is hard news and that the diagnosed does need support. But don't assume an automatic immediate death sentence for your poor friend. You never know. That person may just outlive you. And you'd be offering a great kindness if you treated that person like any other friend going through a rough time, rather than a friend who has one foot in the grave. </p><p>Because as Valerie Harper said, after being diagnosed with metastatic lung cancer to the brain, <span class="st">"Don't go to the funeral until the day of the funeral." Remember, Valerie Harper lived six years after this Stage IV diagnosis, working much of that time. So it was a long journey to <i>that</i> funeral.<br /></span></p><div class="separator" style="clear: both; text-align: center;"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-left: 0px; margin-right: auto; text-align: left;"><tbody><tr><td style="text-align: center;"><br /></td></tr><tr><td class="tr-caption" style="text-align: center;"><br /></td></tr></tbody></table><br /></div><p></p>soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-49852939809094595052020-04-06T20:40:00.001-04:002021-01-28T17:30:08.454-05:00Caring For Yourself When You Have COVID-19<div class="separator" style="clear: both; text-align: center;">
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In this time of COVID-19, it's easy to find news about how to isolate yourself if you're infected, but challenging to find out how to take care of yourself if you have the virus. The advice online tells your housemates to wipe surfaces you may have touched, and tells you to go into your room, close the door, and let folks know if you live after you've weathered the illness. Extreme? Perhaps. But practical advice on how to take care of yourself when you've got COVID-19 is hard to find. What follows is a compilation of advice gathered from a variety of sources which will hopefully help you take care of yourself or a loved one if you've had the misfortune of becoming sick with COVID-19. <i> </i><br />
<br />
<i>Reminder: this is not meant as medical advice or a replacement for consulting with a medical professional. If you experience rapid, labored breathing, mental confusion, or your lips have become a bluish tinge, call your doctor or emergency services immediately.</i><br />
<br />
<h2>
What's In Your Medicine Cabinet</h2>
First let's start with what items you should add to your medicine cabinet before you get sick. Elizabeth Hanes, RN has created a helpful and informative list of <a href="https://www.healthgrades.com/right-care/coronavirus/medicine-cabinet-essentials-during-the-coronavirus-pandemic" target="_blank">medicine cabinet essentials.</a> Here is the basic list. See the <a href="https://www.healthgrades.com/right-care/coronavirus/medicine-cabinet-essentials-during-the-coronavirus-pandemic" target="_blank">article for further detail</a>.<br />
<ul>
<li>Thermometer</li>
<li>Acetaminophen (Tylenol)</li>
<li>Ibuprofen </li>
<li>Antihistamine</li>
<li>Decongestant</li>
<li>Multi-Symptom Cough, Cold and Flu Medicine</li>
<li>Guaifenesin (Mucinex)</li>
<div class="ListArticleBodyItem-headline">
Gastrointestinal Remedies</div>
<li>
Electrolyte Replacement Beverage (Gatorade, Pedialyte)</li>
<li>
First Aid Supplies</li>
</ul>
Another item to consider adding to your medicine cabinet is a pulse oximeter in order to measure the level of oxygen in your blood. This information can help you talk to your doctor about how you're doing. Typically, oxygen saturation for most people is in the 90's, although everyone's baseline may be different. It's a good idea to measure your oxygen saturation while you're healthy in order to get a baseline. The <a href="https://www.copdfoundation.org/" target="_blank">COPD Foundation</a> has helpful information on using a pulse oximeter in its knowledgebase
article, <a href="https://www.copdfoundation.org/COPD360social/Community/COPD-Digest/Article/309/How-a-Pulse-Oximeter-Works.aspx" target="_blank">How a Pulse Oximeter Works.</a><br />
<br />
<h2>
Caring For Yourself </h2>
<h3>
Write Down Your Symptoms</h3>
In order to track how your illness is progressing, and look for trends in changes in your temperature, oxygen saturation, etc, write down your symptoms day by day. Here are the most common symptoms.<br />
<br />
You can find an updated list of symptoms at Canada's Public Health Service <br />
<div dir="ltr" id="wb-cont">
<span style="font-weight: normal;"><a href="https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/symptoms.html" target="_blank">Coronavirus disease (COVID-19): Symptoms and treatment</a> page.</span></div>
<ul>
<li>Fever</li>
<li>Dry cough</li>
<li>Fatigue</li>
<li>Difficulty breathing</li><li>Loss of taste and smell</li><li>Diarrhea or other gastrointestinal issues</li><li>Sore throat</li>
</ul>
There is some evidence that those infected with COVID-19 also may experience:<br />
<ul><li>Headache</li>
<li>Back pain </li>
</ul>
The hallmark of COVID-19 is the dry cough and fever, which seems to improve after several days, and then can worsen again. Note that fever can be mild in older patients or patients with underlying conditions. The immune system gets weaker as we age or are immuno-compromised, and the fever response becomes less robust.<br />
<br />
When measuring your temperature, use the same device each time and take your temperature several times a day. You're looking for a trend in temperature elevation. If a fever isn’t responding to the use of ibuprofen or acetaminophen, this is a concern, and you should contact your doctor.<br />
<br />
If you are in a vulnerable group with an underlying condition, pay particular attention to worsening symptoms such as increased temperature, and do not hesitate to contact your doctor. One tip is to contact the doctor treating your underlying condition (oncologist, cardiologist, etc), rather than your primary physician, since you may get more focused attention from your specialist.<br />
<br />
Back pain can also be a symptom of COVID-19. Studies have found that around <a href="https://www.medrxiv.org/content/10.1101/2020.02.08.20021212v2" target="_blank">half of hospitalized COVID-19 patients</a> have proteins associated with kidney disease in their
urine. If you have other COVID-19 symptoms and develop kidney-area pain,
call your doctor.<b><i> </i></b><br />
<br />
<b><i>If you are experiencing rapid, labored breathing, mental confusion, or your lips turn a bluish tinge, seek immediate medical help.</i></b><br />
<br />
<h3>
Ask Friends to Check In On You</h3>
COVID-19 has a pattern. Those infected appear to be improving after several days, but then worsen again. This is when Acute Respiratory Distress Syndrome (ARDS) can set in. Because people who develop ARDS are not
getting enough oxygen to their brain or other organs, they can become
very disoriented, making it hard to call for help. If
you’re sick, let friends know you’re sick and tell them to check in on you
regularly.<br />
<br />
Many areas in the world have set up adhoc organizations to provide assistance during COVID-19, but because of the adhoc nature of these organizations, they can be difficult to find. Try contacting your local government office (your council member, etc.), or contact an organization set up to assist seniors such as one you may find via the <a href="https://www.n4a.org/" target="_blank">National Association of Area Agencies on Aging</a> (USA). They may know of organizations local to you that can assist you in setting up these type of check-ins or in arranging for delivery of groceries and medicines, and maybe even pet care.<br />
<br />
<h3>
Get Lots of Rest and Stay Hydrated</h3>
When dealing with such a serious respiratory illness, the key is rest. Lots and lots of rest. But also stay hydrated when you're sick, focusing on replacing electrolyte minerals like sodium and potassium. Pedialyte and Gatorade are particularly good for this purpose, but even fruit juice, soda, and other drinks will help as well.<br />
<br />
Symptoms of dehydration include headache, dizziness and dark-colored
urine. If you’re sick and you stop peeing, contact a medical professional. At that point you may need IV saline to rehydrate.<br />
<br />
<h3>
Humidity Is Your Friend </h3>
COVID-19 is a respiratory infection, and like any respiratory infection, it helps to keep the lungs humid to clear out the junk. If you have a humidifier, run it in your room. If you don't have a humidifier, heed the advice of an old-school doctor treating my recalcitrant bronchitis, take two hot showers a day. You'll be clean and it will help your lungs.<br />
<br />
<h3>
Anxiety and Breathing</h3>
Anxiety can worsen difficulties with breathing. Below are several tips to manage breathlessness and anxiety in order to improve the symptoms of COVID-19.<br />
<br />
<ul>
<li>A tip from Dr. Laura Shoemaker (<a href="https://twitter.com/LShoemakerDO" target="_blank">@LShoemakerDO</a>), Director of
Palliative Medicine at the Cleveland Clinic (Cleveland, OH), "When you are short of breath, you
may feel anxious and claustrophobic. Looking out a window, even a closed
window, can make you feel less anxious, and that by itself can ease
your breathing symptoms."</li>
<li>And Dr. Rab Razzak (<a href="https://twitter.com/rabrazzak" target="_blank">@rabrazzak</a>), Clinical
Director of Hospice and Palliative Medicine at University Hospitals
(Cleveland, OH) recommends the use of square breathing to
decrease anxiety and improve respiratory issues. This gif is
particularly helpful in guiding you through this method <a href="https://www.destressmonday.org/square-breathing/" target="_blank">https://www.destressmonday.org/square-breathing/</a></li>
<li><a href="https://ggia.berkeley.edu/practice/mindful_breathing" target="_blank">Mindful meditation to help with breathing</a> (Greater Good Science Center, Berkeley University, USA) </li>
<li><a href="https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/physiotherapy/managing-your-breathlessness-using-a-handheld-fan.pdf" target="_blank">Managing Breathlessness Using a Handheld Fan</a> (NHS, UK) </li>
</ul>
<h3>
</h3>
<h3>
Breathing Exercise to Help Maintain Lung Function</h3>
<span style="font-weight: normal;">Maintaining lung function is key in keeping lungs clear in the event of a virus, and diaphragmatic breathing exercises have been shown to help with breathing. The resources below will help to keep lungs clear and improve lung function.</span><br />
<br />
<ul>
<li><a href="https://www.lung.org/lung-health-diseases/wellness/breathing-exercises" target="_blank">Breathing exercises from the American Lung Association</a> (American Lung Association, USA)</li>
<li><span style="font-weight: normal;"><a href="https://www.youtube.com/watch?v=5IHDtpp0MqA&" target="_blank">Maintaining Lung Function If You Have A Virus - Experts Share Tips</a> (UK) </span></li>
<li>
<a href="https://www.youtube.com/watch?v=0Ua9bOsZTYg" target="_blank">Use diaphragmatic breathing exercises to help with symptoms of COVID</a> (UK)</li>
</ul>
<h3>
</h3>
<h3> </h3><h3>Proning or Postural Drainage to Manage Difficulty in Breathing (aka Sleep On Your Back or Side)<br /></h3><p>
Studies have shown that <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4848155/" target="_blank">placing a patient on their stomach, in a prone position, helps increase oxygen levels and manage the symptoms of Acute Respiratory Distress Syndrome</a> (ARDS)<br />
<br />
This HealthLine article provides helpful illustrations and descriptions on positioning in order to improve breathing: <a href="https://www.healthline.com/health/postural-drainage#effectiveness" target="_blank">Postural Drainage: Does It Really Work?</a></p><p>Either way, sitting or sleeping on your stomach or side helps to get more oxygen into your lungs.
</p><h3>
Primary Sources of Information</h3>
These tips were primarily pulled from the following sources.<br />
<ul>
<li><a href="https://www.opb.org/news/article/covid-19-coronavirus-symptoms-home-self-care/" target="_blank">For People At Home With COVID-19 Symptoms, Self Care Is More Than 'Call Your Doctor'</a>, Erin Ross, Oregon Public Broadcasting, April 3, 2020 </li>
<li><div class="ArticlePage-headline" itemprop="headline">
<span style="font-weight: normal;"><a href="https://www.healthgrades.com/right-care/coronavirus/medicine-cabinet-essentials-during-the-coronavirus-pandemic" target="_blank">Medicine Cabinet Essentials During the Coronavirus Pandemic</a>, Elizabeth Hanes, RN, healthgrades, March 17, 2020.</span></div>
</li>
<li><a href="https://www.kron4.com/news/nurses-respond-what-you-actually-need-to-treat-coronavirus/" target="_blank">Nurses Respond: What you actually need to treat coronavirus,</a>KRON4 News, San Francisco, CA, March 16, 2020.</li>
</ul>
If you really want to delve into even more information on COVID-19, take a look at the <a href="https://coronavirustechhandbook.com/" rel="noopener noreferrer" target="_blank">The Coronavirus Tech handbook</a>, a crowdsourced library for technologists, civic organizations, public
and private institutions, researchers, and specialists of all kinds
working on responses to the pandemic. soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com1tag:blogger.com,1999:blog-6216195173039756376.post-26918202474243820312020-02-14T14:00:00.002-05:002020-02-14T20:28:11.790-05:00Sex and Cancer: Getting Your Swerve Back On<div class="content-title__title" style="text-align: left;">
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<span style="font-family: inherit;">Valentine's Day is a hot day for sex, or so the popular lore goes. But for someone who is dealing with or has dealt with cancer, this can be a loaded holiday. Cancer treatments can push women into early menopause, bringing issues like vaginal dryness, atrophy, etc. into a bedroom, or, for men, result in erectile dysfunction, decreased libido or other bedroom challenges. So what is someone with a cancer issue to do on this most romantic of holidays? Believe it or not, it is possible for a cancer kid to have and enjoy sex. In fact, having orgasms does a body good, leading to less stress and a boosted immune system (<a href="https://www.bustle.com/p/what-happens-to-your-body-when-you-masturbate-regularly-8546739" target="_blank">What Happens To Your Body When You Masturbate Regularly</a> (Bustle, March 2019) and for the scientific explanation, <a href="https://www.ncbi.nlm.nih.gov/pubmed/15316239/" target="_blank">Effects of sexual arousal on lymphocyte subset circulation and cytokine production in man</a>. (Neuroimmunomodulation, 2004)).</span><br />
<br />
<span style="font-family: inherit;">So there's no reason not to get back into the intimacy business if you're dealing with the side effects of cancer. The question though is how do you go about doing this? Luckily, there are a host of experts out there talking about just this topic. Memorial Sloan Kettering Cancer Center (MSK) offers guidance to patients through its <a href="https://www.mskcc.org/cancer-care/patient-education/sexual-health-and-intimacy" target="_blank">Sexual Health and Intimacy</a> services. And oncologists like <a href="https://www.ajmc.com/interviews/dr-don-dizon-discussing-sexual-health-needs-with-patients-with-cancer" target="_blank">Dr. Don Dizon</a> have focused on the area, creating the <a href="https://www.lifespan.org/centers-services/lifespan-cancer-institute/sexual-health-first-responders-clinic" target="_blank">Sexual Health First Responders Clinic</a> at the Lifespan Cancer Clinic in Providence, Rhode Island. Also, sexual enjoyment companies like Jo Divine in the UK offers great information on <a href="https://www.jodivine.com/articles/womens-sexual-health" target="_blank">Women's Sexual Health</a> and <a href="https://www.jodivine.com/articles/mens-sexual-health" target="_blank">Men's Sexual Health</a>, providing information on issues such as</span><span class="field field--name-title field--type-string field--label-hidden">, <a href="https://www.jodivine.com/articles/mens-sexual-health/sex-after-testicular-cancer" target="_blank">Sex After Testicular Cancer</a>, <a href="https://www.jodivine.com/articles/womens-sexual-health/sex-and-breast-cancer" target="_blank">Sex After Breast Cancer</a>, along with a whole host of other sexual health topics.</span>
<br />
<br />
<span style="font-family: inherit;">So let's talk about the problem of vaginal atrophy, for instance, which makes the vagina and vulva (the skin on the outside of the vagina) dryer and less elastic; a common problem for many women during and after treatment for breast cancer. Blogger Jane Lewis tackles this issue in <a href="https://www.jodivine.com/articles/womens-sexual-health/living-with-vaginal-atrophy" target="_blank">Living with Vaginal Atrophy</a>, and Memorial Sloan Kettering Cancer Center offers even more information in its October 2019 information page, <a href="https://www.mskcc.org/cancer-care/patient-education/vaginal-health" target="_blank">Improving Your Vulvovaginal Health</a>. Rather than resigning to a life without sex, there's hope. Non-hormonal hyaluronic acid products such as <a href="https://hellobonafide.com/collections/revaree" target="_blank">Revaree</a> can be used to treat vaginal dryness, and for non-hormone sensitive cancers, estrogen-based vaginal suppositories can be used. In addition, pH balanced vaginal lubricants like <a href="https://www.yesyesyes.org/" target="_blank">Yes</a> (my personal favorite) can be used during sex to make the experience enjoyable rather than painful.</span>
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<br />
<span style="font-family: inherit;">Certainly, the resources above don't begin to cover all the information out there to help us cancer kids get our swerve back. If you have helpful info you've found, please feel free to tell us about it in the comments below. But this is a good start, and hopefully can help you end your evening with the bang you so desire. Or at least this can help you make a good start of it. Find what works for you, take your time, be gentle with yourself and your partner as you go. But most important, you go get your swerve on.</span>
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soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-63528036832984846902020-02-07T14:16:00.000-05:002020-02-07T15:18:17.428-05:00Patient Hopelessness in the ICU<div class="separator" style="clear: both; text-align: center;">
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My family has a long history with the ICU. My mother first ended up in an ICU in the '80's when she went into pulmonary arrest after a minor surgical procedure. Her children visited her room two at a time, standing next to her bed, a ventilator tube filling her mouth, her eyes panicked, a look that didn't leave until the ventilator was removed.<br />
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Luckily my mother didn't experience the ICU again until her death, this time all of us able to visit her coma-laden body at the same time in the ICU after she'd experienced a major stroke. We spoke to the doctors of the damage to her brain, and decided to honor her advance directive and remove her from support. A cart of food and drinks for the family, what I began to refer to as the Death Cart, mysteriously appeared next to the door, and the room filled with the smell of dying. We were able to help her die peacefully thanks to pain killers, but her children were indelibly marked, grieving her sudden and tragic loss.<br />
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Sadly, soon after my mother's death my sister spent time in the ICU, again on a ventilator when she was not able to breathe after a minor surgery. But this time the stay was longer. Let me tell you what happens when a patient has an extended stay in the ICU. My sister was on a ventilator, highly sedated. After a period of time she began to try to pull the tubes from her throat, leading to more sedation and finally physical restraint. This then led finally to a psychotic break - <a href="https://www.theatlantic.com/health/archive/2015/06/the-overlooked-danger-of-delirium-in-hospitals/394829/" target="_blank">up to 85% of ICU patients will experience ICU psychosis</a>. My sister became more and more panicked, writing notes to us begging us not to let hospital staff kill her, begging us to stay by her side. We obliged. Finally, my sister was taken off the ventilator, but she never really recovered.<br />
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Now my turn. Last Thursday night I began to vomit blood. This gastrointestinal bleed earned me a spot in the ICU, my careful doctor wanting me to be closely observed after stopping the bleed. I was tethered to monitors and IV poles via an adhesive pulse sock on my right index finger, adhesive leads on various spots on my torso, two IV's, one in each arm, an oxygen calendula in my nostrils, and a blood pressure cuff that inflated so tightly on the hour a bruise was left on my right arm. I was conscious and lucky to not be on a ventilator. If my blood oxygen level dropped below 90, the monitor would alarm. If the IV bag line was blocked or the bag was empty, the IV would alarm. If the blood pressure cuff didn't fully inflate, the monitor would alarm. If the contact on the pulse sock didn't read, the monitor would alarm. The lights outside the room were never lowered, and the curtain drawn across the glass wall didn't block that light. The multiple monitors and IV displays lit the room. And each time the alarms sounded, the staff ignored those bells, likely to keep their sanity, leaving me to listen to the constant piercing sound. And when I would press the call button, the staff was often busy with other patients, so I was forced to listen to that sound until finally someone would arrive. I couldn't sleep. I couldn't relax. I was increasingly anxious. I suddenly understood why my sister lost her mind.<br />
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On top of that, while I was in ICU, two other patients in ICU died. Luckily, I was mobile and I'm smart, maybe the kind of patient nurses love to hate. I learned how to disconnect the leads and silence the alarms for a few minutes at a time, so that I could walk down the hall and use the restroom instead of the in-room commode. This meant though that I was seeing the grieving families, the Death Cart, the patient in the process of dying each time I walked out of my room. I was in ICU with hopes of living, and instead I was reliving my own family's grief memories, and forced to face the fact of my own imminent mortality from Stage IV breast cancer each time I needed to take a bathroom break. And I had to take many bathroom breaks (better than edema).<br />
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After a period of time, the doctors and nurses began to tell me I no longer needed to be so closely observed, I could be moved to a regular room. But winter is the time when hospitals are full, thanks to the flu, and no regular rooms were available for my move, so I had to stay in ICU. That meant I had to follow ICU protocol and remain tethered to monitors, calendulas, and IV's, and continue to listen to the constant alarms. The problem was that I began to feel trapped in this world of alarms, never-off lights, no rest, and death. And with each day I stayed trapped in this world, I lost more and more hope. A close friend once told me that he knew there was trouble when I began to lose my sense of humor. After day three in ICU my humor was entirely gone. The ICU staff was kind, caring, they meant well, but I didn't belong there and the sense of hopelessness was getting worse and worse Frankly, I've begun to believe that no one belongs in ICU, at least not with the inhumane, alarm-driven, lights up way ICUs are designed now.<br />
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Day four I was finally moved to a regular room, but at that point, the damage was already done. My mood did improve as soon as I left ICU, but an encounter with a cruel nurse on my final day at the hospital dropped me back into the ICU hopelessness. I came home feeling sad, demoralized, and tearful. And the problem was worsened by the fact that no one else seemed to understand my experience. I just wanted to drop into someone's arms and sob. Instead I sobbed by myself and I still can't seem to let this sadness go. Luckily, the hopelessness seems to be morphing into anger, and for that I am grateful. I'd rather be angry about this horrible experience than to internalize it as a hopeless loss of the will to live. I am still trying to find a counselor to help me deal with all these feelings, because honestly, how is a stay in an ICU, watching others die, any different than the grief and trauma of a tragic death of a loved one or the death of a classmate at a school?<br />
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I personally do not have the energy to fight the world of bad ICU design. There has been research and solutions proposed to re-humanize the ICU by changing <a href="https://luxreview.com/article/2017/01/how-to-design-human-centric-lighting-by-scientist-who-discovered-it-" target="_blank">lighting</a> and <a href="https://iopscience.iop.org/article/10.1088/0967-3334/37/7/1041/meta" target="_blank">reducing sound</a>. I do know I never want to end up in an ICU again. I've added a DNR and instructions to remove any ventilators past hour six to my advance directive. And, if I end up in an ER again, I will fight like hell to stay out of ICU. I would rather lie on the floor in an ER than spend any time in another ICU. I just don't think I have the energy to fight the death, alarms and constant light.<br />
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<br />soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-166710651387591542019-11-27T16:54:00.000-05:002020-01-17T09:17:57.886-05:00What Are the Ingredients In Your Shit Sandwich?<div class="separator" style="clear: both; text-align: center;">
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As a cancer patient, I live in a weird world. Something about the word cancer throws people into a tizzy. As soon as I tell someone that I deal with cancer, I get the feeling that images of the bald, gaunt, hooked to an IV pole patient comes to their mind. To that person, I become the image of walking death. And that is how the person I'm talking to begins to treat me.<br />
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"Oh, I'm so sorry," the person might say, pity filling their eyes.<br />
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Or the person I'm talking to might not say a thing, but their behavior will change. <br />
Every time I see that person, they'll ask, "How is your health?" That's the most common question I'm asked by this type of person, as if I am living, breathing medical chart waiting to give an update on my health status. My health becomes another person's obsession, the only subject they deem worthy of conversation with me. Frankly, I'd rather talk about ice cream, movies, even the ingredients of asphalt vs my health. The only defense I've found against this question is, rather than answering, to simply ask, "How's YOUR health?" They get the point.<br />
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Here's the irony though. Many people in my life deal with serious medical conditions. I am in that age group of above 50 so this is a part of life. Fibromyalgia, ruptured/herniated discs in the back causing unbearable pain, brittle diabetes resulting in neuropathy, blindness, amputated feet. These are disabling conditions, often taking a person down to their knees, removing all or most quality of life. But still, when I talk to someone from this suffering group, I'll hear statements like, "Oh, but I don't have it as bad as you do."<br />
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And I'll think, "Sweetie, you have it far worse. My pain is minor at this point, and I still get out of the house. You, on the other hand, are crippled by constant pain and entirely house bound."<br />
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I've tried to explain to this group that I am not identified by cancer. I deal with it, but I have a life as well. But to no avail. The comments continue.<br />
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Finally, the other day, I was talking to a friend whose condition involves constant, unbearable pain. We were actually talking about her health, which is understandably a consuming topic for her (pain does that to you). But, after talking about neuropathy so painful she can't stand the sheets to touch her feet, yet another surgery to fix deteriorating muscles in her hands and feet, and other pain-filled issues, she felt compelled once again to say, " Oh, but I don't have it as bad as you do."<br />
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I was ticked. Once again, the cancer concept put me in a separate group in her mind, the dying group. In my anger, I quickly blurted out, "The truth is we both got served a shit sandwich. Yours is just filled with different ingredients than mine." She paused and she finally agreed.<br />
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There it was. The truth I'd been trying to tell people for a long, long time. I don't have it worse than anyone else who deals with a serious, disabling condition. We all have it the same. We got served a shit sandwich, the ingredients just are different. And life being life, everyone eventually will be served with a shit sandwich. That's how aging and health works.<br />
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I'm not sure if my repeating the shit sandwich statement will make a difference in how people talk to me once they find out I deal with cancer (notice I do not say I have cancer but instead I deal with cancer). Mostly it felt good to say this in response to yet another "you have cancer so you're out of luck" generalization. Mostly I avoid telling people about the cancer. Saves me time. But there are times where I have to tell people or they already know, so it's nice to have a response at the ready.<br />
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Cancer is not worse than any other of the many horrible conditions out there. It's about what is happening at that time in that condition. I have good days. I have bad days. I have friends with chronic pain conditions who also have good days and bad days. We have that in common. And that's what I wish people would focus on instead, what we have in common.<br />
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Cancer is horrible, but it's just a disease. I'd rather focus on the day I'm in than on the image of myself dying a horrible, suffering death. Helps me keep my sanity. So if you are lucky enough for me to take you into my confidence and I tell you I deal with cancer, rather than focusing on the image of cancer death that you may have in your mind, pay attention to what I'm saying about my life and feelings instead. Because remember, eventually, we all get served a shit sandwich. The ingredients in your sandwich will likely just be different than mine.soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-13843142249118908032019-03-05T19:56:00.000-05:002019-03-06T12:38:50.917-05:00R-E-S-P-E-C-T the Patient<div class="separator" style="clear: both; text-align: center;">
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After 7 years of living with metastatic breast cancer, I can say that I am now what they call a professional patient. I have seen most everything, various rules, procedures, protocols cancer centers observe. But past that, I am also a regular human being. I have a job, a husband, four dogs, two cats, a very active social life, and an extended family. A life. I juggle that life with multiple doctor appointments, treatments, and diagnostic tests. Sometimes this can be a challenge. I am lucky in that my previous and current bosses have been very understanding of my need to run to appointments or take time off for medical needs. (Many cannot say the same.)<br />
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Still, managing numerous appointments with work obligations, family, and friends is a challenge. And lately, the challenges have been increasing. I recently switched oncologists with the goal of working with a doctor who would listen to and respect my goals in treatment. This was a good move. With that move, though, I've had additional appointments so I could be introduced into the new system. Along with this, I've been newly diagnosed with portal hypertension, requiring yet another doctor appointment be added to my roster.<br />
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Learning this new system has been demanding at times. There was the run-around of discovering I could not print out the order for my tri-annual echocardiogram from the electronic records system to give to my cardiologist, who is not in the new hospital's system. This took a few hours and several misinforming phone calls, but I finally got it. I now know to ask for a print-out of the order from the doctor as she orders the echocardiogram. Lesson received. Learning the procedures in a new setting takes time. I catch on quickly. I expected this. Par for the course.<br />
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Today, though, took the cake. After I left my oncologist's office, I received several emails from the electronic records system indicating appointments were made on my behalf. I'm not fond of people making appointments without asking me, but in this case they were appointments for infusions scheduled every third Friday at 1:30 pm (a day and time I'd requested ahead of the scheduling). The appointment I did not expect, however, was a visit to the lab for a blood draw at 11:45 am on the day of one of my 1:30 pm infusions, a time almost two hours before the infusion. Accepting this appointment would mean I would have to use two extra hours of my sick leave, and after I would be stranded at the hospital for at least an hour and a half before the infusion. I called the cancer center and asked if this appointment could be moved to my 1:30 pm infusion time, since the nurses tend to draw labs from my port. Nope. The scheduler insisted this was the way they did things and if I did not have the draw done at least 45 minutes in advance of the treatment, I would not receive the treatment. She insisted I would have to arrive for the 11:45 am lab appointment or else.<br />
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WTF? Show up two hours early for labs? In the past, the nurses drew the blood from the port, and the first results came within 10 minutes. If the basics were good, we went from there. I expressed this thought and was again met with a wall. After several minutes, the scheduler blurted she'd have a nurse call me, so I happily hung up and waited for that call instead. Fifteen minutes later the same scheduler calls back and tells me, it is what it is, but they could move the appointment 10 minutes later to 11:55 am instead of 11:45 am.<br />
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When she asked if I could make this time instead, my reply was a simple, "I'll do my best."<br />
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Translation for "I'll do my best?" I'm coming at 12:30 pm. You said they needed the blood 45 minutes in advance, so I'll give you an extra hour. But I refuse to let you dominate my life by requiring me to waste two hours of my time because you want a two hour cushion. I have a life and just because I deal with cancer, and will deal with cancer hopefully for years, does not mean I'm giving that life up in order to make you happy.<br />
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Frankly, I'm just stubborn enough,that if they refuse me treatment based on my not arriving two hours before the infusion, I'll go ahead and kick it, doing so right in their reception area. This would be a spectacular advertisement for their cancer clinic. I'm at the end of my rope with all of these extra appointments and rules that devalue my time. Don't piss off a cancer patient who's at the end of her rope, because she might take you with her.<br />
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These little things, time-eating bureaucracy moments, matter. I deal every day with a life-threatening disease, but I am still living my life. Sitting in a hospital for two extra hours just because the scheduler says so chips away at that life. Do not ask me to show up two hours early just because. Print out that order for the echocardiogram and hand it to me, instead of forcing me to spend two hours calling multiple people in your organization only to find out I need to come back to the clinic for a hard copy of the order. Do not tell me that the requirement to add people to my HIPAA consent form, allowing loved ones to talk to my doctor about my medical needs, is that those people must come to your hospital in person in order to show their ID to you. Some of these people live in Wisconsin and Minnesota, not in Washington, DC. Rules for rules sake are simply a way to suck the life out of people who are already trying very hard to stay alive.<br />
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Respect my time. Whether you like it or not, I am paying a great deal of money for your service and for your doctors' and nurses' expertise. Even if you've come to see yourself as the one with power in this relationship, ultimately, you are not. I can move my business elsewhere. I can speak to someone higher up about how these crazy, odd rules affect patients. And most importantly, I can choose to stand stubbornly in front of your desk, making YOUR life difficult, because that's the kind of people I come from. You may outlive me in this exchange, refusing me treatment due to inane, burdensome rules. But you will be left with my dead body laid out on your desk, a smile of sick satisfaction on my face, and moving that stubborn dead body will be a bitch. I promise.soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com1tag:blogger.com,1999:blog-6216195173039756376.post-59892033003077207762018-10-14T11:45:00.000-04:002019-03-06T12:39:17.638-05:00Angels in Disguise<div class="separator" style="clear: both; text-align: center;">
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Riding the metastatic roller coaster can be challenging, to say the least. As my friend Shera Dubitsky, a wonderful counselor at <a href="https://sharsheret.org/" target="_blank">Sharsheret</a> describes it, metastatic cancer is always there. It's like a radio that is always playing. Sometimes the volume is low and sometimes the radio is too darn loud. For me, recently, the volume on the metastatic cancer radio has been too darn loud.<br />
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What that translates into is constant worry and an inability to sleep, which only adds to the radio's blaring sound. This anxiety is certainly understandable. I have just switched treatments, which has yet to be proven as working (scans are in December), and have been having to adjust to the side effects of this new treatment (Perjeta is particularly known for causing gastrointestinal issues). On top of this, I've also just switched to a new cancer center only to find out that the new oncologist has a tendency to not listen to my concerns, it's a bit her way or the highway, and that the system has some confusing and strange rules such as all patients need to be out of the infusion center by 4:45 pm since all the doctors have left by then, no matter how the patient might be faring after their treatment. My guess is that this rule is based on concerns about liability and the desire is to transfer that liability on to the street or to the local ER. So I have been wracked with anxiety and concern for multiple reasons, and the result is that I have been spending my nights plagued by high-level panic and very little sleep. This has taken its toll.<br />
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This last Friday was one of those nights. I was up most of the night, panicked, attempting to get my mind off thoughts of the future by listening to music, reading, or just sheer power of will. It wasn't working. By the time my alarm went off Saturday morning I had gotten maybe 3 or 4 hours sleep out of the 8 I typically need. I was exhausted, but once day comes, I usually can get up and go about my business.<br />
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Saturday mornings I attend an Alcoholics Anonymous meeting and I've committed to bringing a pint of half and half to the meeting for the morning coffee that is provided. I parked, went into the local grocery store, and walked back to the dairy section. An employee was working in the area, cleaning the glass doors of the cooler and re-stocking shelves. The half and half was on the top shelf of the cooler, and far back, so my 5'4" self could not reach the pint. I asked the employee if he could reach it for me. He turned to me, said a few words, and then pulled the half and half off the shelf. He handed me the pint, looked me in the face, quickly touched my shoulder and said, "Take it day by day." At first I thought he was making a general statement to me, something he said to everyone, like "Have a blessed day" and I didn't think much of it.<br />
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But he continued by saying, "Whatever you're going through, know that there are people who care about you. Give it all over to God." My mind registered shock. I thanked him and then I walked away. As I walked down the grocery store aisle, the shock increased. How did he know I was in distress? As I continued down the aisle, I almost broke into sobs. I paid for the half and half at a self-serve checkout to avoid possibly breaking down in front of a clerk, and I rushed out the door.<br />
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Later, at my AA meeting, I told this story and then I finally cried. This man working in a grocery store did not know me, yet he had somehow sensed the yawning fear in my soul and spoken words of comfort to me. He had provided the comfort I so badly needed, a human voice telling me that somehow everything was going to be all right, that all I needed to do was take it one day at a time. That is the key to living with such a horrible truth as a terminal disease, take it day by day. But it is easy to move out of day by day and into the wreckage of my future when the disease becomes challenging. This stranger was helping me to move back into a place where I had a little bit of control, how I dealt with the cancer during that one day, and letting my fears go to some other place, a higher power, God, or whatever you call it. To tell you the truth, one thought I had as I walked out of the store was that I should invite that man to move into my house so he could say this to me every day. I could use hearing this wisdom every day.<br />
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However he knew my story, he spoke a series of blessed words to me, words that save my heart and soul, and I am grateful. He may have been stocking shelves in a grocery store, but to me he was an angel in disguise, a reverend, a rabbi, a teacher. Perhaps he needs to put down the milk cartons and pick up a preacher's stole instead. While the world does need milk, in my mind it is in greater need of words of comfort, and I am very grateful that that is what he gave to me. I can't even think of how to repay his kindness, but I am very, very glad that on a Fall Saturday morning, after a night of anxiety driven by lack of sleep, I went into a grocery store to buy a container of half and half that was too high for me to reach, and I asked for and got the help I so desperately needed. Thank you.soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com1tag:blogger.com,1999:blog-6216195173039756376.post-78471095461580301322018-09-17T13:47:00.003-04:002018-09-17T13:50:06.976-04:00Lost In The Medical System<div dir="ltr">
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I have been at the same cancer center for six and a half years. My first oncologist saved my life, and then when she took a break from clinical care due to burnout caused by problems with management (hint, hint), another talented oncologist continued that excellent care. Over the years, the people providing my medical care from the doctors to the support staff, have become so important to me I invited them all to my wedding two years ago. Several showed up!</div>
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So, it breaks my heart to leave them for a different clinic, but I feel I have to because for the last several months I have been feeling lost in the medical system.</div>
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<span style="box-sizing: border-box; font-weight: 700;">Feeling lost in the system has been taking away my hope. </span><span style="box-sizing: border-box; font-weight: 700;">And hope is what helps keep me alive in this Stage IV cancer diagnosis.</span></div>
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For several years now, my health has been chugging along. I responded well to <a href="https://www.breastcancer.org/research-news/20131001" style="background-color: transparent; box-sizing: border-box; color: #dd3333; text-decoration-line: none; transition: all 0.3s ease 0s;" target="_blank">Kadcyla</a> and tolerated the treatment well. No need to call in triage nurses, conundrums, or extra worries. Many months ago, though, I began to experience post-infusion reactions to Kadcyla – chills, fevers, elevated heart rate, faintness. Kick in the concern. Thus began the calls to the triage nurses and contacting the doctor, and thus began the very slow, almost annoyed responses from the nurses.</div>
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After a few months of frustration, I spoke to the doctor. I asked if her patient load was too high and expressed I was worried she would not have the time for my now more-complicated care. She listened with empathy, and she acknowledged her patient load was heavy (she is an excellent doctor). I saw evidence after our discussion of her working to not take on too many new patients.</div>
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<span style="box-sizing: border-box; font-weight: 700;">Things got more complicated.</span></div>
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My latest scans showed a spot with increased uptake on my rib, plus my already-lowered platelets dropped even lower and were not recovering. More calls, more slow response. At this point, I was becoming increasingly concerned with my safety. Lowered platelets that don’t recover between treatments make things dicey, but what appear to be allergic reactions to the treatment are even scarier (think of things going toward anaphylaxis). Quick response to serious concerns are key to patient safety.</div>
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<span style="box-sizing: border-box; font-weight: 700;">That’s when I realized what was happening had nothing to do with patient loads.</span></div>
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After some detective work, I realized what was happening was that the clinic was extremely short staffed in terms of nurses and was also losing support staff due to burnout. Management had been promising to fix this nursing shortage for a long time, but this was a problem that was not being fixed. Because of my time with the clinic, I had seen nurse practitioners come and go (two nurse practitioners quit on the same day at one point and that is very telling of a management issue). This shortage of nurses means the doctors and nurses become overworked, and support staff burn out having to handle regular duties, along with increased numbers of frantic patient calls like mine.</div>
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<span style="box-sizing: border-box; font-weight: 700;">I am a vocal self-advocate, and I was losing hope in this lost in the medical system experience. What was happening to other, less vocal patients?</span></div>
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I considered staying; these people saved my life and my spirit. But after another experience of asking for help and feeling lost yet again, I had to face the fact that this was something that was going to take a while to set right. What I needed right here, right now in my increasingly complicated medical situation, was a doctor and nurses who responded on a timely basis.</div>
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I made an appointment with a new oncologist at another clinic that had a nurse practitioner ratio of one nurse for every two doctors, and I have since moved to that new clinic due to the presence of those nurse practitioners, along with the fact of the new oncologist’s competence. The new oncologist remarked during our appointment that no place was perfect, and she was right.</div>
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The new clinic has its own issues, which I’m quickly discovering. But as long as I can reach a triage nurse, nurse practitioner, or doctor and get the help I need, the rest I can work around.</div>
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I’m still not clear why the previous cancer clinic has not been doing more to hire much-needed nurse practitioners. I do know that because they were not on staff, I was lost in a medical system. That added to fears for my safety, sadness over the loss of folks I had come to value and a dangerous loss of hope in an already challenging metastatic cancer situation.</div>
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So, I’m off on a new journey that has its own challenges, I’m sure. The one thing I hope that is true, though, is that when stuff hits the fan, I’ll at least be able to get through to someone who can help.</div>
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<span style="box-sizing: border-box; font-weight: 700;">Because that sense of “we’ve got your back” is one of the most important things for anyone dealing with a dangerous, life-threatening medical situation.</span><br />
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<span style="box-sizing: border-box; font-size: x-small;">Originally published via Nancy's Point as <a href="http://nancyspoint.com/lost-medical-system-susan-f-metsmonday-featured-post/">Metastatic Monday Featured Point 9/17/2018</a>.</span></div>
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soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com1tag:blogger.com,1999:blog-6216195173039756376.post-60241187382493495112017-10-20T09:00:00.003-04:002018-03-18T16:42:50.561-04:00The Pink Sisterhood<div class="separator" style="clear: both; text-align: center;">
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I attended a screening of a breast cancer documentary last night because, you know, it's breast cancer awareness month. I was there for the discussion after the film to offer a different perspective, because my breast cancer is Stage IV. </div>
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Now I figured the audience would be mostly women (it was). But I did not expect the audience to be dressed in pink. All of them. Dressed in pink. Pink shirts. Pink socks. Pink sweaters. Pink purses. All of it pink. A sea of pink. I'd never seen anything like it before. </div>
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And considering how much pink was already going on in the room, I found it odd that the women in the room were clamoring for even more pink. "I have t-shirts!" the event organizer called across the room, holding a bright pink t-shirt aloft, the word survivor emblazoned on the back. And the women surged forward to grab their pink reward. They were a pack of pink breast cancer sisterhood, a sorority you can only enter after enduring a horrifying and hellish hazing period. </div>
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But I am not a member of the pink sisterhood. My cancer has spread. I will not be a survivor, and survivorship is a cornerstone of membership in <u>t</u>he breast cancer sorority. The reality is that roughly 30% of the pink sisters in the room last night will join my sad sorority, the cancer coming back into a distant organ, taking the poor woman through a new and never-ending hazing routine. But as of last night, the women in the room had all been through breast cancer, their treatment was done, they were moving on with their lives. They were survivors. They were members of the pink survivor team.</div>
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I do not blame those women for loving pink, for holding on to the hope that the cancer will never return. I certainly wish I could be a member of their group. I hate the color pink, but I would have been happy to wear fuchsia to be a part of the crowd. It's just I never got to experience living in the world of "your cancer's gone, you can go about your life now." By the time I was first diagnosed, my breast cancer had already spread to my liver (HER2-positive cancer is an aggressive and fast-growing disease). Any way you cut it, pink was never meant to be my color after all.</div>
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The one wish, though, is that people would quit assuming that, because I say I have breast cancer, I will automatically survive and insist to me I will survive as well. Not everyone survives, and it's a sad reminder of that fact when the person I'm speaking to insists otherwise. Everybody survives breast cancer is a line sold by clever marketing people who want us all to believe that cancer, if caught early, never comes back, so please, buy these pink things and we'll give a little of the money to awareness campaigns, and then we'll pocket the rest. Breast cancer can come back years after first diagnosis. And breast cancer can and still does kill an estimated 40,000 women and men in the US every year.</div>
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So do me a favor. Do not assume that just because my boobs are gone and I've had chemo, that I'm happy about it and moving on with my life. I live in the world of cancer permanently. Cancer will most likely kill me, unless that proverbial bus hits me first. Go ahead and wear your own pink. Just try not to rub the pink in my face as well. This is hard enough already.</div>
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soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.comtag:blogger.com,1999:blog-6216195173039756376.post-49278504619981391302017-03-21T14:40:00.003-04:002017-03-21T16:37:08.776-04:00Still Here<div class="separator" style="clear: both; text-align: center;">
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Last week a right-to-die advocacy organization contacted me. I am terminally ill (Stage IV breast cancer) and had testified before the District of Columbia Council two years prior in support of a physician assisted dying law in the District. A Washington Post reporter had emailed the organization, hoping to use a quote from my testimony, and the reporter wanted to know if I was still alive and if still lived in Washington, DC; in other words, would I be able to take advantage of assisted death legislation.<br>
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Now I understand the practicality of these questions. In two years I could have easily moved and, considering the capricious nature of metastatic cancer, I could just have easily died. Still, seeing someone ask about my continued existence in an email was jarring and, in the end, soul shaking. Was I still alive?<br>
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My response was short and to the point.<br>
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"Yes, I am still alive. Yes. I still live in Washington, DC."<br>
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The organization's representative seemed thrown by my response, and tried to back pedal on the question of my being alive. "Of course you're still alive," he replied. After the email exchange, I went back to my work day. I was fine. The impact of the exchange didn't fully hit me until that evening. In the middle of cooking dinner with my husband I stated, "Someone asked me if I was still alive today." And then I left the room, sat down on the couch, and began to sob.<br>
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No one had ever so directly asked me this question before. I live knowing that my health could quickly change, I could be dead in weeks or months. But I also live pushing that thought away just so I can get through my every day. I've discovered that I cannot function if my mind is filled with the reality of my impending death.<br>
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Many people ask me about my health. Thank God it doesn't happen too often, because frankly, when someone asks me how my health is what they're really asking is, How bad is the cancer? Where has it spread? How long do you have to live? What is interesting is that even though I have been asked this many times in the five years since my diagnosis, I am still shocked when it is asked. As soon as the health question floats into the air, I know everything I need to know about the person asking. She does not see me, she sees cancer. To the questioner, I am merely a disease, not long for this world. A short timer. The questioner does not want to know about me, the disease is the focus. If the person really cared about me, she would ask "How are you," the emphasis on the word you. How are you, a living, breathing, feeling person?<br>
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And I still struggle with how to respond to the how's your health question. Often I redirect the conversation to the questioner's health. How is <i>your</i> health? How is <i>your</i> heart? How is <i>your</i> blood pressure, that family history of stroke. I am hoping to illustrate that we all have health issues, we all will die. I am not special in dying. I just know the most likely cause of my own death. Even this approach is apparently not clear enough. I still get the health question. I want people to stop asking about my health. I want them to ask about me. I am not walking death. Perhaps I simply need to state this more directly, become a haranguing educator on how to speak to the diagnosed. <br>
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But nope. I've decided the next time I'm asked about my health, I will reply, "Why? Do you know something I don't." Get an uncomfortable laugh. Make them feel guilty. Why not? The strategy worked for my mother and her mother before her. I come from a long family tradition of making people shut the hell up through guilt.<br>
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But still, there is the continuing perception that I am dying. My close friends do not make this mistake. They know, in the tradition of Valerie Harper who was diagnosed with metastatic lung cancer several years ago and is also still here, that I will live until I die. Since my diagnosis, many people I know have died before me. The healthy 50-something man who died of a sudden, massive heart attack. The seemingly healthy 50-something woman who was outwardly perfectly fit but was really harboring Stage IV colon cancer which she would not get checked, and was dead a week after diagnosis. The incredibly fit 40-something man who exercised and ate right, but was dead two weeks after they found the lung cancer. The sweet, kind, fit man who apparently suffered from crippling depression that drove him to take his own life. I have outlived them all, and yet, I have had the diagnosis, the "bad health" for longer.<br>
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The point is there is no way to tell who will live and who will die and when. Outward signs of health do not mean an escape from death. It only means you get to pretend death is far, far down the road. After the above gentlemen died of a heart attack, I had a conversation with another woman with metastatic breast cancer. While we both acknowledged the sadness of the gentleman's early demise, we also expressed envy. "How lucky he was to die quickly and not know it was coming." It's the knowing that is the challenge. Unlike most people, I know death is coming and I know it could come at any time. But also unlike most people, because I know it's coming, I vehemently appreciate every day I live past my supposed expiration date. That sense of gratitude eluded me when I was able to pretend I was not dying. In dying, I ironically found life. <br>
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Meanwhile, here is my tip for checking to see if a terminally ill person is still alive. Send the email or make the call, and when the person responds or picks up the phone, assume she is alive. If you do ask the person if she is still alive after hearing her voice, do not be surprised if she then goes on to point out <i>your </i>impending death. Because, believe me, thinking about your death sure as heck ain't much fun, and you don't want to hear it.soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-81926388403638778472016-12-30T11:35:00.002-05:002016-12-30T11:35:29.112-05:00Let's Pretend the Bride Does Not Have Cancer<div class="separator" style="clear: both; text-align: center;">
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In my time dealing with cancer, I've discovered that not only is cancer an illness, but it is often used as an identifier as well. After diagnosis, women are referred to as breast cancer survivors. If a woman is diagnosed with stage 4, metastatic breast cancer, she is referred to as terminal. It's as if the cancer becomes an integral part of a person's identity. We are no longer just wives, mothers, co-workers, daughters, sisters or nieces. We are "the niece with cancer," "the co-worker who is dying," "the sister who is a breast cancer survivor."<br />
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In the metastatic breast cancer community, women debate what to call themselves. They don't feel comfortable with the “survivor” label since that is so often associated with the pink world that you'll be okay and breast cancer is curable. It is not, especially for the 30 percent of us who will later move on to deadly stage 4. Knowing we won't survive it, many with metastatic cancer insist upon being called a metavivor, someone who is continuing on in spite of a stage 4 diagnosis.<br />
For me though, as I've continued down this road of dealing with metastatic breast cancer, I've found that I never wanted to be a cancer survivor, a cancer thriver, a cancer metavivor or a cancer anything at all.<br />
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I am not a label. I refuse to live my life that way. I am Susan. I have brown hair, hazel eyes, a kind heart, a wicked sense of humor and I also happen to have metastatic breast cancer. Like diabetes, arthritis and heart disease, it is merely a medical condition I have, not a part of my name. I am not cancer Susan, dying Susan, or metastatic Susan. I am just Susan.<br />
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I understand where the tendency for labels comes from. Cancer is a nasty disease. The disease and its treatment tears people apart physically, causes tragic levels of pain and the associated treatment costs bankrupt many struggling to pay the resulting medical bills. Cancer is so looming in its destruction; people often see only the cancer rather than the person. So-and-so has cancer? Everyone begins to talk about that person in hushed tones. “Oh, poor Ruby. She’s a goner.” The assumption and the association are easy to make.<br />
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Here's the deal though. I am getting married in July, and my cancer has nothing to do with my engagement. My fiancé, Jeff, was attracted to my humor and my spirit, not the cancer I happen to host. Jeff decided I was someone he wanted to spend his life with, so he asked me to marry him. I said yes. He knew about the cancer. He knows how metastatic cancer works. He asked me to marry him, not the cancer. So I am just like any bride. I want to celebrate this wonderful union with this incredible man who has chosen me and whom I have chosen back.<br />
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But still, the labels persist. From the aunt who congratulated me on my engagement and then immediately told me about an in-law of hers whose cancer is so bad he is stopping treatment, to the friend who told me that in spite of my stage 4 cancer, I get to celebrate milestones too. All of these responses wrap me and my wedding in cancer. It's as if all of my life has cancer, not just a part of my body.<br />
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This is not a cancer wedding. This is my wedding. So even if I hobble down the aisle, my chemo wig askew, dragging an IV pole, I want everyone, including myself, to pretend I don’t have cancer. Look past the IV pole and look at me, the bride. Look at me holding hands with my love, committing my life and my love to him. I am not a cancer bride. I am a bride named Susan. And on my wedding day I will eat cake, dance, hold my new husband and let him hold me, and celebrate. And I will thank God that I am alive.<br />
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<span style="font-size: x-small;">Also published on CureToday</span>soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-59135305314722888592016-12-30T11:27:00.002-05:002016-12-30T11:27:45.662-05:00Hope In the Midst of Cancer Sadness<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3yxw8JgI78fCnVLzSVPo_wqyNiEmZVh1nkI0tqpXk2oBf8gg2x5MY7mk4oPazimr60Osiw0rHnr3z8ZGasEIUVSz0Am1yaCLu9ja9yhw6WhCZi1nzPjwe5gvEcvNPytPnfqp2aCeVMSI/s1600/wedding.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3yxw8JgI78fCnVLzSVPo_wqyNiEmZVh1nkI0tqpXk2oBf8gg2x5MY7mk4oPazimr60Osiw0rHnr3z8ZGasEIUVSz0Am1yaCLu9ja9yhw6WhCZi1nzPjwe5gvEcvNPytPnfqp2aCeVMSI/s1600/wedding.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Courtesy of Jeff Salmore Photography</td></tr>
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I got married in July. It was a sweet ceremony, in a small church, the guests gathered at tables surrounding the ceremony space. My husband's best friend said a few words during the ceremony, describing the growth of our love. It was a heartfelt speech, but I didn't realize until after the wedding, that he only knew my husband, not me. So he couldn't tell the story of how I came to love Jeff or my feelings about the day.<br />
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My diagnosis with cancer came in the middle of an already long streak of sadness. Three years prior to being diagnosed, my mother suffered a hemorrhagic stroke. The stroke left her brain destroyed, but luckily her advance directive was clear. As per her wishes, we took on the task of helping her die. This is something I never want to do again, but if someone I loved we're in a similar circumstance, I would help again. It was a painful, loving thing to do. My mother and I were very close, so after she died, I was left with the job of grieving her loss.<br />
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But apparently I was not done with loss. My older sister, like my mother, suffered from binge eating disorder, putting her at an incredibly unhealthy weight, which she worked hard to deny so that she could continue to partake in her food addiction. Six months after my mother’s death, my sister almost died due to that addiction. We all hoped that this close call would be the bottom she so desperately needed to hit in order to begin facing her addiction and make a start towards recovery. But that was not the path Melissa chose. She continued to binge eat, and in February 2010 Melissa passed away at age 51, leaving me to grieve yet another significant loss. And then, in January 2012, my own health became a serious issue, doctors discovering that metastatic breast cancer had covered my entire liver. I entered a grueling period of chemotherapy and surgery, along with constant, numbing fear of suffering, pain and death. The sadness continued.<br />
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In spite of all this sadness though, I decided to take a risk. Three years into my diagnosis I began to date. Because of the cancer, I did not know how long I would be alive. I only knew that I was stable for now, and I wanted to continue living. And living included dating. I entered dating only hoping to find a companion, someone with whom to pass an occasional evening. I did not expect to love the man sitting across from me. After Jeff and I began seeing each other, friends told me I looked happy. In dating, I took life day by day, partaking in what was in front of me, and I enjoyed my time with Jeff. I certainly hoped that Jeff would stay, but I had no expectations. I was, after all, someone with metastatic cancer. There were no guarantees in my future except a likely too-soon death. So when Jeff asked me to marry him, it was an unexpected joy. After so many years of unrelenting grief, it was a relief to finally receive some good news.<br />
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So what I felt on my wedding day was a sense of celebration of good news amidst the bad, a safe place in the middle of the storm. And this is what the best man did not know me well enough to say. For me, my wedding day was a day of sunshine in the darkness, a reprieve of the howling winds of grief. This day was a day unlike all others. It was a day of unmitigated joy. Now, looking back, I wish I had had the courage to ask someone to speak this truth for me, but I did not. So the only thing I can do is write my own wedding words, speak my own joy and tell my own story of unexpected love in spite of sadness of loss. Because, on that day, my wedding day, these words of renewed hope and returned growth after a scorching forest fire were the most important words of all.<br />
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<span style="font-size: x-small;">Also published on CureToday</span><br />
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soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com2tag:blogger.com,1999:blog-6216195173039756376.post-59682052723113724482016-12-30T11:23:00.001-05:002016-12-30T11:23:54.773-05:00Beating Cancer: The Real Life Battle for Patients and Their Loved Ones<div class="separator" style="clear: both; text-align: center;">
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The language of cancer is loaded. When you are diagnosed, well-wishers tell you that you can “beat” cancer, that it is merely a blip in what will be a long, fruitful life. People speak of the gifts of cancer, the lessons learned, the good that comes from the bad. Certainly, I can understand why people do this. Cancer is terrifying and just like whistling in the dark on that walk through the cemetery, focusing on gifts and lessons makes the cancer beast a little less scary.<br />
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The cancer marketing machines use this spin on feel-good cancer as well. Images of women linking arms as they “beat cancer,” inspires the raising of millions of dollars, some for the good of research and helping people, and too much to line the corporate pockets of disease greed. Out of every $100 raised by the NFL during its breast cancer awareness campaign, for instance, only $11.25 went to the American Cancer Society.<br />
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And like the rah-rah phrases of a beatable cancer, these cancer marketing machines often do not honor the real victims of cancer. When Steelers running back DeAngelo Williams asked to wear pink for the entire season, rather than just October, in honor of his mother who had died of breast cancer, the NFL told him no. And when Williams’ teammate Cam Heyward wore eye black in honor of his father’s death from a brain tumor, the <a href="http://www.si.com/thecauldron/2015/10/26/nfl-breast-cancer-month-deangelo-williams#">League fined him $16,000</a>. Williams and Heyward were telling stories of real people, real losses, and this sad picture would not have furthered the NFL’s marketing campaign. So they were not allowed.<br />
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Because of his honest approach to cancer, the comic book character, <a href="http://marvel.com/comics/characters/1009268/deadpool">Deadpool</a>, has become my unexpected hero. Before he morphs into the mutant Deadpool, he is Wade Wilson, a young man, happily living life, in love with a beautiful woman, until he is given the horrible diagnosis of terminal cancer that has invaded most of his vital organs. His girlfriend is quick to take the battle stance, telling him, “I love you, Wade Wilson. We can fight this.” But Wade knows the truth. “You’re right. Cancer’s only in my liver, lungs, prostate, and brain. All things I can live without,” he sagely responds to her battle call.<br />
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In this understandable attempt to sugar coat cancer, the patients and their family’s pain and lasting scars are continuously minimized. If only cancer were always so easily beatable, simply a romantic faint on a hot Victorian afternoon, after which the swooning lady is carried to a chaise and revived with the scent of freshly-brewed tea. Cancer does not make sense. It happens and it is hard, even if the patient survives. Treatment leaves lasting scars, and the trauma of a cancer diagnosis and treatment often leaves survivors and their families with an undeniable case of Post-Traumatic Stress Disorder, financial burden, and depression. As Deadpool notes, after losing almost everything to the disease, “Cancer is a s**t show, like Yakov Smirnoff opening for Spin Doctors at the Iowa State Fair kind of s**t show.” And that’s not a good show at all.<br />
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The desire to minimize cancer pain is so strong, even the worst of deaths are softened. An <a href="http://www.curetoday.com/articles/moving-on-another-cancer-angel">April 2016</a> article detailing the recent death of a young mother from breast cancer shocked me with its softening approach. The article told the story of a young couple, Carrie and Chris. Two weeks after Carrie and Chris brought their son Henry home from the hospital, they discovered that Carrie had stage 4 metastatic breast cancer. She was 32 years old. For four years Carrie and Chris poured everything into trying to “beat” the cancer, and focused as much time as they could on their son. In March 2016, they received the news that Carrie’s body was giving out, and the couple was devastated. Chris, a man who had devoted himself to his wife, left the world five days before his wife’s death on March 25, 2016. Carrie was buried on what would have been her 36th birthday. Their son Henry was left behind.<br />
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Carrie did not beat cancer. Chris was destroyed by the cancer that killed his wife. Henry is left without his parents. This is devastating, destructive and horrifying. Yet, the title of the article is, “Moving On: Another Cancer Angel.” Carrie and Chris did not “move on.” They were destroyed by a disease that decimates over half a million people in the United States alone. I thought about Carrie, Chris, Henry, and Lana, Carrie’s mother who thankfully is still here to raise Henry; the only light of good in this tale of woe. And then I thought of the loved ones of the <a href="https://www.cdc.gov/nchs/fastats/deaths.htm">over 500,000 people who die of cancer</a> in the U.S. each year. Every one of the over 500,000 people who die each year have loved ones, a Chris or two sitting with them, praying they will “beat” the cancer, waiting for results of the latest scan, helping their loved one move from a couch to a bed because cancer has taken away all of their loved one’s strength. Even if each cancer patient who dies has only two loved ones, this means at least 1.5 million lives are wrecked each year by a disease that is supposedly “beatable.”<br />
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Cancer patients who are dying are not people who are simply “moving on.” They are empty spaces in people’s lives, tears in the middle of the night, a football player’s drive to smear eye black under his eyes to honor his father’s death during each and every game. As Linda Loman, in the play "Death of a Salesman," demands of her sons as her husband’s life crumbles before them, “He’s not the finest character that ever lived. But he’s a human being, and a terrible thing is happening to him. So attention must be paid. He’s not to be allowed to fall into his grave like an old dog. Attention, attention must be finally paid to such a person.”<br />
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In the same way, people afflicted with cancer are also human beings. They are not faces in a marketing campaign, a person being given a gift or a lesson to be learned. Cancer is no gift. It is a scourge taking more lives and loved ones than diabetes, strokes and Alzheimer’s. (Only heart disease kills more people than cancer every year). The only hope of beating cancer is medical research, and thankfully breakthroughs have allowed more and more cancer patients to live or live longer.<br />
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As President Obama proclaimed in his announcement of the Cancer Moonshot during the <a href="https://www.statnews.com/2016/01/12/obama-biden-cancer-moonshot/">January 2016 State of the Union Address</a>, “For the loved ones we’ve all lost, for the family we can still save, let’s make America the country that cures cancer once and for all.” This is a dream for anyone afflicted with cancer and their loved ones, particularly for those who move on to a metastatic cancer diagnosis. If this dream were to become true, that cancer could be cured once and for all, then perhaps we can talk to cancer patients of beating cancer or learning lessons. But until then, cancer remains a tragedy in too many people’s lives. And because this tragedy goes on, attention must be paid.<br />
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<span style="font-size: x-small;">Also published on CureToday</span>soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com2tag:blogger.com,1999:blog-6216195173039756376.post-52931415674270056402016-12-30T11:18:00.000-05:002016-12-30T11:18:01.768-05:00Love and Cancer: I Am Worth ItEven on a good day I am insecure about dating. But give me a good case of metastatic breast cancer, and I’m out-of-this-world insecure about dating. I’ve got cancer. I could go at any time. I could slip into a world of suffering and disability before I die. Who would want to sign up for that?<br />
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Never mind the fact that right now, my disease is stable ... that I’m active ... that I’m alive. Slipping into future fear is natural to me. When I slip into the future, I miss what’s happening right now, right in front of me. And right now, I am dating a wonderful man. His name is Jeff. He loves being with me. He enjoys my company. He thinks I’m sexy. That’s what is true in my life, at this current moment: I am loved.<br />
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Jeff and I have started seeing a couple’s counselor. We're not seeing a counselor because our relationship is in trouble, but because we have different ways of talking about our feelings and it just seemed a good idea to get some help in bridging the gap. There were a few things I was afraid to tell Jeff, a couple of secrets I was keeping. The biggest secret was that I was afraid he would leave. I was afraid to talk about the cancer, about my fears surrounding cancer, because I was petrified Jeff would figure out that the cancer was likely going to kill me, and then he would run for the hills. <br />
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For some reason though, in that counselor’s office, I felt safe to tell Jeff my fears. I went into depth, detailing my concerns, my trepidations about talking about my diagnosis and I was sure he would leave.<br />
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His reply?<br />
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"At our age, we’re all on a timeline."<br />
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I have never loved him more than at that moment. I had shared my darkest fear about our relationship, and Jeff told me that my diagnosis didn't scare him. He was not afraid to be with me, no matter what the future brought. Now I don’t mean that Jeff isn’t afraid of losing me — I’m sure he is. But with that statement, Jeff was telling me that in spite of my diagnosis, he thinks I’m worth the risk. He is willing to stay. God bless him and give him lots of treats.<br />
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Being worth it has always been my greatest love fear. My deep-down belief that somehow I am not worthy of love has driven me to chase love away before love has had a chance to leave me. In the past, a man could have hired a pilot to write his love for me in the sky and I would have questioned him continuously about whether that love was real. I have been in long-term relationships, been told over and over again by a man how much he loved me and had that love demonstrated repeatedly through caring and attention. But each time, I would badger the poor man, believing he wasn’t telling the truth. And of course those relationships ended. Somehow, though, when this man tells me he loves me, I believe him.<br />
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I look back at my life and sadly note all the love I turned away due to my own insecurities. In a way, entering the world of cancer and impending death has helped me to shed these time-wasting thoughts. After cancer, I realized I was worth protecting and I could limit my time with hurtful people. After cancer, I realized it was OK to say no to guilty obligations and instead spend time engaging in activities I enjoy. After cancer, I realized I was actually pretty cool and likeable and that the people who had left me when I was a child, left because of their own problems, not because I was unlovable. Sometimes, these new habits and beliefs of worthiness are hard for me to remember. But in a weird way, reminders of my impending death quickly bring my worthiness back into sharp focus.<br />
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So for this Valentine’s Day, I have someone who loves me and I believe him when he says it. Because I believe he loves me, I feel free to love him right back. Sounds like a win-win situation, doesn’t it? I don’t expect flowers on Valentine’s Day, but I do expect love. That is a new feeling for me. Believing that I am worth it makes every day a Valentine’s Day. I don’t mind living the rest of my days believing that.<br />
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<span style="font-size: x-small;">Also published on CureToday</span><br />
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soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-26181054047584560532016-12-30T11:14:00.002-05:002016-12-30T11:14:40.966-05:00Hope in the Face of Death: Living With Metastatic Breast Cancer<div class="separator" style="clear: both; text-align: center;">
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<span style="background-color: white;">There have been too many deaths this December. It seems as Christmas approaches, that the deaths from metastatic breast cancer pile up. </span></div>
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<span style="background-color: white;">Women like <a href="http://www.dailymail.co.uk/femail/article-3364523/Heartbreaking-final-note-terminal-cancer-sufferer-36-spent-final-months-writing-letters-filled-advice-young-daughter.html">Heather McManamy</a>, a young mother from McFarland, Wisconsin, who was diagnosed with aggressive breast cancer in 2013, and wrote over 40 letters to her four-year-old daughter to mark the milestones in her daughter’s life she knew she’d miss. When Heather died, her husband shared her goodbye letter on Facebook. </span></div>
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<span style="background-color: white;">"Yes, this sucks. It sucks beyond words,” her letter reads, “but I’m just so damn glad I lived a life so full of love, joy and amazing friends." She then went on to instruct her loved ones to remember her with a revel, to run up a bar tab of which she’d be proud. </span></div>
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<span style="background-color: white;">And women like Adrienne Toth, another young mother, diagnosed with aggressive breast cancer when she was pregnant with her son, starting chemo during her second trimester. The cancer became terminal in March 2014 and Adrienne was dead by December 2015. </span></div>
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<span style="background-color: white;">And Carolyn Frayn, diagnosed with stage 4 disease in 2012 at age 51, who died just a few days ago. Carolyn was a strong advocate for those with metastatic breast cancer, and as she pointed out, because early-stage breast cancer can move to stage 4 even years out, everyone who has been diagnosed with breast cancer needs to fight together for more research and an ultimate cure. </span></div>
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<span style="background-color: white;">Cancer is capricious. It is impossible at this point, to tell if or when it will return. Once the cancer moves to stage 4, there is no way to know how long a person will live: statistics show that only <a href="http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-survival-by-stage">22%</a> of stage 4 breast cancer patients will live five years. After my own diagnosis, an oncologist said that how long someone will survive is entirely dependent on the biology of the cancer and the biology of the person with that cancer. In other words, some people just have lucky biology. </span></div>
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<span style="background-color: white;">Women like Sandra Spivey (who has lived 18 years with metastatic breast cancer), Jill Cohen (who died after 14 years) and Debra Strauss (who has lived for 24 years) — these women have been lucky and have lived for years with metastatic breast cancer. </span></div>
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<span style="background-color: white;">That’s what we do, those of us with metastatic cancer: We look at these long-term survivors and we pray that we will be lucky too. We pray that 24 years from now we will be attending fundraising events for Living Beyond Breast Cancer, as Debra Strauss does, that we’ll be here to see daughters or sons graduate, that we’ll be able to play with yet-to-be grandchildren and maybe even live long enough to cash in that retirement nest egg. That is the metastatic cancer patient’s hope and dream. </span></div>
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<span style="background-color: white;">The future is very uncertain for a metastatic cancer patient. As Carolyn Frayn noted in a <a href="https://getupswinging.com/2015/03/16/mets-monday-carolyn/">2014 interview with Laura Huffman</a>: </span></div>
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<span style="background-color: white;">“The most disconcerting issue I find is the uncertainty. We just don’t know how long we have left to live after a metastatic breast cancer diagnosis, when we will progress, what — or if — treatments will be available when we do, nor what type of death we can expect. We could live the median of two to three years, or we could be an outlier, that infinitesimal percentage of people who live 8, 10 years, or longer. It messes with your mind, your sleep, your resolve.”</span></div>
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<span style="background-color: white;">Michael J. Fox describes living with Parkinson's Disease as stepping into the road, then freezing in the middle of that road as a bus hurtles toward you. The challenge is how to live while a bus bears down. Life in the bus lane for me has required a delicate balance. A balance of living day by day, while looking toward the future for treatments I pray will be released just in time to save my life. I scour Twitter for articles detailing even the smallest cancer research breakthrough. Before scans, I search <a href="http://clinicaltrials.gov/">ClinicalTrials.gov</a> or the <a href="https://www.breastcancertrials.org/BCTIncludes/AvonPfizer/BCTDemo.html">Metastatic Trial Search tool</a> in hopes of finding a clinical trial that might keep me alive until new treatments are released. </span></div>
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<span style="background-color: white;">Every time I hear of cancer deaths, Nancy, my <a href="http://imermanangels.org/">Imerman Angel</a>, talks me down from my emotional ledge. She reminds me that my story is different, that I can’t judge my future by someone else’s story. We all have differing biologies, differing paths. But still, cancer deaths are hard to ignore. It takes a while for me to dim the black shroud hanging over my head and begin to hope that maybe my story will be different. I certainly hope to live more than five years and become part of the 22% — I am currently at year four. Frankly, hope is all I have. </span></div>
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<span style="background-color: white;">So, I honor the women who have died before me and advocate for research to find quick-to-market, less toxic treatments in hopes of saving my own life and the lives of others yet to be diagnosed. All I can do is focus on each day I am given, say a prayer and live my life in the best way I know how. For me, being alive and advocating for research is holding on to hope. </span></div>
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<span style="background-color: white;"><span style="font-size: x-small;">Also published on CureToday</span></span></div>
soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-74935581260141041882016-12-30T11:01:00.002-05:002016-12-30T11:01:30.190-05:00Break It To Them Gently: Informing Patients of Test Results'Cancer' is a terrifying word. The first time I heard the word directed at me was in 1996. I was 32 years old. I had just had a colposcopy after an irregular pap smear. The call from my gynecologist was forwarded to me at the library reference desk where I was working.<br />
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"The pathology report showed cancerous cells. We need to remove them. I'd like to do a LEEP procedure so we can get clean margins."<br />
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It was stage I cervical cancer. I was at work. I will never forget that feeling of shocked confusion as I finished my shift.<br />
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The phone would continue to be a part of my cancer journey.<br />
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In 2011, there was a suspicious mammogram, followed by a biopsy. I was informed by phone that the biopsy showed cancer. After the next test, an MRI, I was told by phone that the scan showed two distinct tumors in my breast. I was also told by phone that the HER2-positive breast cancer had spread to my bone and liver. This call was made by my oncologist's nurse practitioner as I was sitting down in the chair to receive my first chemo. The bone and CT scans had just been returned to my oncologist, and they were trying to stop the previously planned chemo so that we could change treatment direction in light of the new diagnosis. The nurse practitioner pronounced that the scans showed lesions on my bones and spots on my liver. In my mind, spots on the liver meant I was going to die and die soon. I had taken the call at the nurse's station. When I heard the nurse’s words, I began to sob and I began to hate the phone.<br />
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But as time went on, and I received more test results, I realized I didn’t hate the phone. I hated the way in which news was being delivered over the phone. The radiologist who called to confirm that the breast biopsy showed cancer was kind, measured and detailed in her report. I was grateful for this approach, even calmed. My gynecologist who called to tell me that the breast MRI showed two tumors had not even bothered to have the scan report in her hand during the call and was dismissive of my questions. The nurse practitioner who informed me of my stage 4 metastatic breast cancer turned out to be someone who lacked social skills and should not have been informing patients of any test results. It's all in how the informing is handled.<br />
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Certainly the topic of how patients prefer to be informed of test results is of great interest. The Breast Cancer Social Media (BCSM) Community, a group of doctors, researchers, patients and advocates asked just this question in a survey How Do You Prefer to Receive Test Results. I have my own preferences in how I want to be informed of test results.<br />
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We all know that delivering bad news is horrible for the giver and the receiver. The key is to deliver the news with kindness, provide details of the findings and give a plan for going forward. Here are some do’s and don’ts (from my perspective) of informing a patient that they have cancer: -<br />
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<li>As the test is being ordered, <b>ask the patient how they prefer to hear the results</b> — in person, phone or email. My suggestion is that, if this is a new condition to the patient or the patient is new to you, deliver the results in person. After that, phone or email is fine, as long as the patient prefers this.</li>
<li>When delivering the news, make sure to <b>have the results report in front of you</b> and provide basic information about the findings, size of tumor(s), location, etc. Give the patient an idea of what cancer in these locations mean in terms of treatment, symptoms, etc.</li>
<li><b>Do not give survival statistics to the patient.</b> Ever. After my own diagnosis, an oncologist stated that how a patient does is dependent on the biology of the tumor and the biology of the person who has that tumor. I looked up the statistics after leaving the oncologist office, but I had gotten the message that every metastatic patient is unique before viewing those numbers. And the oncologist’s message gave me hope, which is a key element in living with cancer. Do not take away that hope.</li>
<li>At same time, <b>do not tell the patient that metastatic cancer is a chronic condition</b>. It is not. Cancer will most likely kill that patient. A small, but increasing, percentage of metastatic cancer patients live for many years. Most don't. False hope only provides a higher place to fall from when the cancer does what it will, and that may end in a dangerous depression for the patient.</li>
<li><b>Deliver the news with kindness.</b> "The scans show that the cancer has spread. Here are the treatments available. There are several more treatments being developed. Patients have lived for years with this type of cancer. Every case is different."</li>
<li><b>Stick to the reality of the situation at that point</b>, not what may happen in the future. Do not speculate about what may or may not happen: ascites, pleural effusion, death-bed scenes. Follow this rule at every point during the treatment. If the symptoms haven’t appeared yet, do not delve into them. Letting patients know about possible side effects for a treatment being discussed is helpful, but not when a patient is first being informed of test results. See the comment about hope. Looking down the road towards suffering and death is another way to take away a patient’s hope.</li>
<li>With side effects of treatment in mind, <b>ask the patient about their treatment goals and priorities</b>. I've heard mothers of young children say that they are willing to deal with any side effect just so they can stay alive for their children. For me, my focus is on quality of life. Five months of weekly Taxol disabled me and took away all of my quality of life. I am determined to stay only on targeted therapies in order to preserve that quality of life. I also believe in the right to die and want this option available so that I am not forced to live my final days in a constant state of suffering. Each patient has different priorities and goals. Ask about them.</li>
<li>Finally, <b>ask the patient how they want to receive test results going forward</b>. For me, receiving basic results via email is good. I prefer to receive more detailed results by phone — I just want to know the results. The key is in how the news is delivered. As I wrote, informing the patient with kindness, giving details about the findings and providing a plan going forward are the key.</li>
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Although everyone has their preference in how they want to receive test results, I thought it would be helpful to give some basic guidelines, based on my experience of receiving test results. To all the patients out there: Chime in about your preference via comments. Here’s a chance to let the incredible medical teams who are helping us know about how you’d like to be informed.<br />
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<span style="font-size: x-small;">Also published on CureToday</span><br />
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soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-22411370145885576932016-12-30T10:52:00.002-05:002016-12-30T10:52:05.666-05:00Finding Calm in the Face of CancerIt's 1:00 a.m. and I'm still awake. I've been waking up every hour all night long. I have a new pain spot on my back and I have become convinced that the cancer is growing. So I am scared ... very, very scared.<br />
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Cancer is terrifying. Michael J. Fox describes his experience of Parkinson’s Disease as crossing the street and getting stuck in the middle of the road as a bus hurtles towards you. You know that the bus is going to hit you, you just don’t know when and how bad it’s going to be. Learning to remain calm while watching the bus fly at you is one of the greatest challenges of living with metastatic cancer.<br />
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The hardest part for me is that when the panic comes, it comes in the middle of the night. Normally, I would call someone to find support, but calling after bedtime is not a popular move. So I’ve had to learn how to calm myself. While I do have a prescription for Ativan (I joke that having cancer makes me a legalized drug addict), I try not to use it unless the panic is really bad. I don’t want to build up a tolerance for the drug and not have this aid when I am truly desperate. I have a few calming methods I’ve used over time, but lately I’ve been more scared than usual and I need more tools in the toolbox. So I asked the women I know in a private group for metastatic breast cancer and they suggested a bucketload of calming methods. Here is the list in an easy-to-use format:<br />
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•Meditation: Guided meditation, breath-focused meditation, prayerful meditation, whatever works for you. Sit up, lie down, stand, any position works in meditation. I’ve used guided meditation with good success, including times I’ve been in pain. Another cancer patient recommended meditations from the website <a href="http://healthjourneys.com/">healthjourneys.com</a> and I’ve downloaded several (they sell CDs and MP3s). There are a plethora of sources for meditation CDs. But, if you prefer learning meditation in person, many yoga studios offer meditation classes. A good place to start in finding meditation classes in your area is by searching the Web or asking the social worker at your treatment center.<br />
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•Mindless entertainment: Comedies, the Home Shopping Network, music videos, crime shows, movies, anything that will keep your mind off the matter at hand. Music videos work for me, but they’re harder to find nowadays since MTV stopped showing them. So I've had to settle for talk shows or crime dramas (I joke that death comforts me, at least murder does). Whatever works, watch it.<br />
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•ASMR Videos. Some people are calmed by gentle sounds or actions. This is called autonomous sensory median response (ASMR). An excellent example of ASMR videos are the painting instructions of Bob Ross whose show "The Joy of Painting" was broadcast on PBS from 1983 to 1994. Many claim that the sounds of his whispering voice and the strokes of the paint brush lulled them into a state of relaxation. The <a href="http://www.asmrlab.com/asmr-videos/">ASMR Lab website</a> has links to a wide variety of ASMR videos.<br />
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•Crafts: Adult coloring books, knitting, crocheting, cross stitch, scrapbooking, any craft is a great take-me-away. I had not heard of adult coloring books before the women in my group brought them up, but these are apparently very popular. I found that craft stores sell adult coloring books, along with colored pencils. While going through my first chemo, I used counted cross stitch to keep my mind off things. I was able to stitch in the middle of the night, when the steroids were keeping me awake. Unfortunately, the combo of Taxol and steroids meant I did not count accurately, so the resulting project is a bit out of whack. But it did its job and kept my mind occupied.<br />
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•Physical activity: Walking, running, bicycling, yoga, gardening, swimming, dancing. Move to keep calm. My mother, when my parents were divorcing, walked our Old English Sheepdog, Sybil, for miles and miles. My mother was a stay-at-home mom and was about to re-enter the workforce while caring for four children — she was understandably stressed. The walking seemed to be the only thing that kept her sane. And the dog sure was happy.<br />
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•Playing games: Sodoku, crossword puzzles, board games, jigsaw puzzles and online games all work in the world of calming. Plus, with online games, some cancer folks say they have found a sense of community among other gamers like them happy to talk and offer support.<br />
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•Reading: Fiction, nonfiction, poetry, silly magazines, serious magazines — Reading is a great escape. I love People magazine myself (it’s my guilty pleasure). I’m a voracious reader and being able to spend time in someone else’s world is just the ticket I need.<br />
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•Music: For me calming music is gentle-toned, go-to-sleep music. But for others it may be heavy metal, rap or punk. Loud, soft, gentle, energetic — If music works, dial it up and float away.<br />
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•Plan a trip: I discovered this technique recently. I am planning a trip to England; I’ve never been and have always wanted to go. The excitement of discovering things to see in England has been helping to keep my mind off cancer. I am very grateful for this since my next scan is scheduled right after I return from England. Planning the trip seems to be cutting my usual scanxiety down to a more manageable level. I certainly can’t afford constant trips to England, but maybe weekend trips? Or I could focus on that big trip next year? I’d plan a trip to Hades if it helped me stay calm before a scan.<br />
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•Deep breathing: Last, but not least, deep breathing. Years ago, a counselor taught me the <a href="http://www.medicaldaily.com/life-hack-sleep-4-7-8-breathing-exercise-will-supposedly-put-you-sleep-just-60-332122">4-7-8 breathing exercise</a>. When things get really rough, I find that this always works within a few minutes. Here’s how it works:<br />
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1.Exhale completely through your mouth.<br />
2.Close your mouth and inhale quietly through your nose to the count of four.<br />
3.Hold your breath for a count of seven.<br />
4.Exhale completely through your mouth, to the count of eight.<br />
5.Inhale again and repeat the cycle three more times for a total of four breaths.<br />
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I hope you find this list helpful. I know that when I’m in full panic, it is hard for me to think. The goal was to create an easy-to-follow reference list that will help us all soothe the panic when it’s bearing down. I mean, as long as I have to stand in the middle of the road, waiting for the bus to hurtle towards me, I might as well read a few good books, watch fun movies and breathe deep. Oh, and maybe I can also dance.<br />
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<span style="font-size: x-small;">Also published on CureToday</span>soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-56904914146207382682016-12-30T10:41:00.005-05:002016-12-30T10:41:52.064-05:00The Right to Die<span style="background-color: white;">On Friday, July 10, 2015 I testified before the Washington DC Council in support of Councilmember Mary Cheh's proposal of the Death With Dignity Act. Below is what I said to the DC Council. In November 2016, after several more hearings, the DC Council voted to expand access to end of life choices for Washington, DC, residents, for which I am eternally grateful. Here is the testimony.</span><br />
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<span style="background-color: white;">I do not want to die. I do not want to talk about dying. But death is a topic I can’t escape. I have stage 4 HER2-positive breast cancer to the liver. I was diagnosed in January 2012 at the age of 47. I immediately began chemotherapy and weekly Taxol, which led to debilitating exhaustion and neuropathy severe enough that I fell and dropped objects I couldn’t feel in my hands. At my insistence, after five months, my oncologist finally stopped the chemotherapy — luckily the cancer was stable — and I began to recover. Since then, my cancer has responded well to targeted therapies such as Herceptin and Kadcyla, treatments with far fewer side effects, which means I am able to work and have a good quality of life.</span><br />
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<span style="background-color: white;">I am lucky ... for now.</span><br />
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<span style="background-color: white;">But cancer is smart. It learns the treatments, and begins to grow again. The downward progression of cancer is predictable. As I move through increasingly toxic treatments, my side effects and pain will become more and more disabling, and my world will become smaller and smaller. If my cancer spreads to my lungs, I will need an oxygen tank to breathe and will have little strength for physical activity. The narcotics I will need in order to control my pain will make it hard for me to function or think clearly and will also lead to severe constipation. The pain and disability will trap me in my house. I will be unable to work, unable to get out to visit friends, and I will become isolated.</span><br />
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<span style="background-color: white;">Eventually, as the cancer spreads in my body, I will develop ascites or pleural effusion, fluid buildup in the abdomen or around the lungs. The pleural effusion will make it harder for me to breathe. The ascites will cause me pain, make me sick and tired, and also make it hard for me to breathe. The only relief I’ll get is having the fluid drained by a doctor. If the cancer spreads to my brain, I will have vision problems, severe headaches, seizures and possibly even paralysis. All of these symptoms will get worse over time, confining me to a life of disability, pain, fear and loneliness.</span><br />
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<span style="background-color: white;">Seven years ago my mother had a hemorrhagic stroke. CT scans showed the stroke had destroyed most of her brain. She was on life support. Per her living will, my brother and sisters decided to take my mother off support and help her die. Because this was in Wisconsin, there was no access to aid in dying, meaning all we could do as she died was give her pain killers when allowed. I remember watching her as she died, thinking, “We’re allowed to be kinder to dying dogs than we can be to the people we love.” It was a helpless, sad and desperate experience. </span><br />
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<span style="background-color: white;">Shortly after my diagnosis with cancer, a gentleman I know whose mother died of the disease asked me, “Are you afraid of dying in pain?” It was a horribly awkward question, but easy to answer. I am terrified of dying in pain. I darkly joke with my cardiologist and oncologist that my goal is to die of a heart attack. I can eat high cholesterol foods, stop exercising, stack the odds for that heart attack, but there is no guarantee a heart attack will come.</span><br />
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<span style="background-color: white;">Cancer, however, is a guarantee. It has already spread in my body. It’s a death lying in wait, a death of suffering. I am able to end the suffering of my pet and help her gently die. But I could not offer that same kindness to my mother as she died. And I cannot offer that same kindness to myself. I have lived in Washington, DC, for 16 years and I plan on staying here. The promise of aid in dying in Washington, DC, offers me comfort in this horrible situation.</span><br />
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<span style="background-color: white;">I do not want to die. I will not be anxious to choose death. But when the cancer pain becomes severe, I will be grateful for the charity of a compassionate death. That thought helps me live in this moment now and not think of what will eventually come. Please help the people of Washington, DC. Give them access to aid in dying.</span><br />
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<span style="background-color: white;">If you would like to find more information on aid in dying, contact the <a href="https://www.deathwithdignity.org/">Death With Dignity National Center</a> or <a href="https://www.compassionandchoices.org/">Compassion & Choices</a>.</span><br />
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<span style="background-color: white;"><span style="font-size: x-small;">Also published on CureToday</span></span>soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-77015807766683052322016-12-30T10:34:00.001-05:002016-12-30T11:37:26.278-05:00Living and Dying Might Depend on Cost<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ7mfchzh-dVPoE58te_QkCzQY9RSAPBzUhVZHsc35-gLcP5Cj0yXdg5lLu7MNtTdJK4yCL1G23ZUw2RhWwK_k_V0dIGA20hDsBZbOtyFTQNiR_wlYsPnD1j6mFEoBb_iECBNlDRCklQA/s1600/worth.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ7mfchzh-dVPoE58te_QkCzQY9RSAPBzUhVZHsc35-gLcP5Cj0yXdg5lLu7MNtTdJK4yCL1G23ZUw2RhWwK_k_V0dIGA20hDsBZbOtyFTQNiR_wlYsPnD1j6mFEoBb_iECBNlDRCklQA/s200/worth.jpg" width="200" /></a></div>
What is a year* in the life of a metastatic breast cancer patient worth? About $100,000, according to a study published in the Journal of Clinical Oncology entitled <a href="http://m.jco.ascopubs.org/content/early/2015/09/03/JCO.2015.62.9105.full">Cost-Effectiveness of Pertuzumab in HER2+ Metastatic Breast Cancer</a>. And even at $100,000, the study’s authors contend Perjeta (pertuzumab) “is unlikely to be cost effective in the United States.”<br />
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Perjeta, approved in 2013, was welcomed as a boon to the HER2-positive cancer community. Combining Perjeta with Herceptin (trastuzumab) and docetaxel was found to add almost twol years to the life of a metastatic breast cancer patient. But Herceptin is priced around $4,500 per month and Perjeta around $6,000 per month (source).The resulting $10,500 a month or $126,000 year cost for Perjeta and Herceptin alone makes this a very expensive treatment, indeed.<br />
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From a strictly economic standpoint, it makes sense to perform a cost-benefit analysis of the use of treatments in certain patient populations. Metastatic cancer patients typically live fewer years than non-metastatic cancer patients. So it’s simple. Looking to buy a new pair of shoes? A high-quality pair, priced at $100, will last 10 years. The amortized value of those shoes works out to $10 a year. A lower-quality pair of shoes, priced at $20, but needing to be replaced every year? That brand will cost you $200 over 10 years. Which pair of shoes is cheaper in the long run? Which pair of shoes would you buy? Metastatic cancer patients live fewer years, and the cost of their treatment is high, so the overall cost of the treatment is higher. Based on that math, as the study states, “Expensive targeted therapies are far more likely to be cost effective in the nonmetastatic setting.”<br />
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But it’s not as simple as that. There are those two years added to a patient's life. We metastatic cancer patients live in dog years. For me, those those years are more like 14 years. That’s extra time I get to spend with the people I love, time I can dedicate to advocating for a cure, time I can spend enjoying the sun on my face. It’s as my friend <a href="http://cultofperfectmotherhood.com/">Beth Caldwell</a>, another metastatic breast cancer patient, says, “Nobody who lives with death looks at cancer drug prices and says, ‘Nah, too expensive. I'd rather die.’"<br />
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That’s the problem. New therapies are expensive, drug companies setting the price for several recently-released treatments at over $100,000 per year. Even with good insurance, providing 80 percent coverage for prescribed medications, this leaves the patient with $20,000 or more in debt. And this type of debt means people living with cancer are three times more likely to file for bankruptcy than people without cancer (<a href="https://www.asco.org/practice-guidelines/cancer-care-initiatives/value-cancer-care">source</a>). The high prices set by drug companies are the real battle, not the worth of a human life. It’s simple. If the drug price is set too high, society then has no choice but to ask the hard questions about whose life is more worth saving. People cannot afford these prices. Society cannot afford these prices.<br />
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Major cancer centers like Memorial Sloan Kettering Cancer Center have already started addressing the problem of drug pricing. In 2012, MSK researchers evaluated the drug Zaltrap against Avastin, both prescribed for the treatment of colorectal cancer. Zaltrap cost about $11,000 per month, twice as much as Avastin. In their evaluation, researchers found that both drugs extend life by 1.4 months, but beyond the slightly higher toxicity of Zaltrap, there were no major differences in the drugs besides the cost. MSK decided to not offer Zaltrap to their patients, writing an op-ed piece in the New York Times to explain their decision. In the face of this challenge to their pricing, the drug's co-marketer Sanofi dropped the price of Zaltrap in half, confirming that the price had been artificially set at an unrealistic point in the first place (<a href="http://www.npr.org/sections/money/2013/03/28/175368440/when-a-famous-hospital-didnt-want-an-expensive-new-drug">source</a>).<br />
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In the process, Hagop Kantarjian, one of the MSK doctors leading the charge, raised questions about the ethics of the current pricing model and challenged the increasing practice by drug manufacturers of charging people faced with life-threatening disease enormous sums of money for the life-saving drugs that they require. He also brought into question a law that prevents Medicare from negotiating lower prices with drug companies. This situation is unique to the U.S. All other countries negotiate acceptable prices for drugs, which can result in 50 to 80 percent lower prices. As more high-priced novel therapies are tested and administered in combinations of two, three, or more drugs, the need to negotiate these inflated prices truly becomes a matter of life or death (<a href="http://www.cbsnews.com/news/the-cost-of-cancer-drugs/">source</a>).<br />
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With climbing drug prices, more and more patients are forced to fight for coverage of drugs that may save their lives. And patients are fighting. Maria Greenfield, the mother of a special-needs child and metastatic breast cancer patient from Florida, has gone through several treatments since her diagnosis with stage 4 metastatic breast cancer in 2012. With the failure of her latest treatment, her oncologist recommended the newly-approved drug Ibrance (palbociclib), priced by Pfizer at $9,850 per month, or $118,200 per year. Her insurance company, Humana, rejected repeated appeals for coverage of the drug, their on-staff doctor stating she was “too far gone” for the recommended treatment to be of benefit. Maria launched a <a href="https://www.youtube.com/watch?t=20&v=Eg68TuG3RCI">social media campaign</a> pleading her case and <a href="https://www.youtube.com/watch?v=Ve_Vf5PldvE">visited Humana’s local office</a> to personally tell the insurance company she was not ready to die. Humana approved her appeal that very day, overnighting the medication to her local pharmacy.<br />
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Denying claims is what insurance companies do. They are in the business to make money, not lose it, and $118,200 a year is quite a bite into their profits. Coldly declaring patients as “too far gone” is business as usual for insurance companies. A terminally ill patient who dies no longer needs medical insurance coverage, and therefore does not cost the company money. But by artificially setting the price of new therapies so high, drug companies become a complicit partner in the business of denying life-saving therapies to desperate patients. Insurance and drug companies have become an unofficial death panel, deciding who lives and who dies via drugs priced out of economic reach and refusing to cover those high-priced drugs.<br />
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So the question remains: Who is worth saving and whom do we let die? Certainly, if drug companies continue to set prices for pivotal treatments so high, insurance companies will deny coverage more and more, relegating the patients deemed “too far gone,” whether they are or not, to an earlier grave. Maria Greenfield has gained almost four years through the care of a good oncologist and continued treatment. If she had not been successful in her fight for coverage of the drug her oncologist recommended, where would she be? Who would care for her family — her special-needs son whose teeth she brushes every morning? What cost would her loss be to her husband, her son and society as a whole? The drug and insurance companies do not see this as their problem. They are only trying to make money. Their ethics are certainly suspect. So we need to make it clear that the lives of Maria Greenfield, myself, and countless other metastatic cancer patients are worth saving. We are their problem. One in four men and one in five women are at risk of dying of cancer (<a href="http://www.cancer.org/cancer/cancerbasics/lifetime-probability-of-developing-or-dying-from-cancer">source</a>). Who will decide which of the five gets to live and which of the five gets to die? Right now, that decision is increasingly based on the cost of the treatment you may need.<br />
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* Outcomes in the <a href="http://m.jco.ascopubs.org/content/early/2015/09/03/JCO.2015.62.9105.full">Journal of Clinical Oncology study</a> included health benefits expressed as discounted quality-adjusted life-years (QALYs), costs in US dollars, and cost effectiveness expressed as an incremental cost-effectiveness ratio.<br />
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<span style="font-size: x-small;">Also published on CureToday</span>soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0tag:blogger.com,1999:blog-6216195173039756376.post-25580133310507358902016-12-30T10:20:00.005-05:002016-12-30T10:20:43.650-05:00Cancer Is Not a One-Person JobI am a take-care-of-it, planning kind of gal. For those of you who know me, that fact comes out in, oh, about five seconds after introduction. Got a group needing to be seated at a restaurant? I will work with the host to find the best table. Have a medical issue? I'll do research and send you the information. I like to have my life organized and I love to reach out to others. My helping ways may be a bit annoying at times, but I mean well. And I like doing it.<br />
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That's why this cancer thing has me thrown for a loop. Never mind the fact that I really have no idea how this will work out (will I go into remission for years or will I suffer bout after bout of recurrence?), but now I have no choice but to ask others for help and making plans is an iffy proposition, at best.<br />
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Trying to plan a time to fly back to Wisconsin to visit family? I have no idea when to do that. An unexpected visit to the ER? Who will take care of my dogs? Chemo extended? Who can I ask to help me during the extra chemo treatment? Of course I need help. Cancer is not a one-person job. But I was raised not to ask for help and I sure have a hard time receiving help. And once I ask for help, I want to put a plan in place and I am hoping like heck to not have to ask for help again. I just do not want to be a burden.<br />
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My first time through chemo, my treatments were unexpectedly extended, meaning I had no choice but to ask for more help, after my friends and family had helped so much already. I had forced myself to ask for help for the first round. I had a plan. I knew my need would end on this date and then I could go back to being independent. But suddenly I was being told that the incapacitating treatments would go on for an undetermined amount of time. Not only would I have to ask for more help, but I did not know when that need for help would end. It was torture. How could I ask for so much and how could I plan when I had no clue about the end point? I did not know how to absorb the news. Luckily, I told all of this to my friend Deborah. Her frank response helped me through.<br />
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"Get over it," she said. "Ask for help. People want to help." So I followed her advice and asked for more help.<br />
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People began to respond. Some responded right away, giving an immediate yes. But others did not answer so quickly. I, of course, interpreted this as "people are sick of me and tired of helping me all the time." That might have been true for some, but was obviously not true for everyone. It's OK to be tired of helping. I get tired too, so I’m perfectly fine with my loved ones taking a break.<br />
What I didn't realize was that some people may not respond right away. But that didn’t mean they weren’t willing to help. For one chemo request, my Uncle Mike called on the Wednesday before chemo and volunteered to sleep over the night after chemo. God bless Uncle Mike and Aunt Carole. They’ve been a package of blessing for me. My friends Deborah and Carole emailed the night before chemo, volunteering to sleep over the day after chemo. Deborah and Carole, another package of blessing. My friend Jo Ann called and volunteered to come to chemo with me and since that chemo session started at 10:30 a.m. and went over lunch, she fetched lunch for us both. Jo Ann is another 'blessings' friend. But wait, there's more. My nephews Josh and Ben flew in from Wisconsin to cover two of the extra chemo weekends. And there were other friends who trickled in to help.<br />
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I finally realized that even though none of this help came on my have-it-all-planned timeline, it did not mean "nobody loves me" and "I'm a burden." The help came just when I needed, in a one-day-at-a-time kind of way. I can't tell you how much it cheered me to know that people cared enough to help. I realized that I am truly, truly lucky and blessed by all the love that surrounds me. But I also realized that people wanted to help. Even people I barely knew wanted to help. People like to help.<br />
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This metastasized breast cancer ain't no sent lesson. But I do see how I now have to live life one day at a time. I've had to learn to trust that just because everything doesn't all fall into place in a plan, that doesn't mean the help will never come and that the love isn't there. I have been unwillingly converted in my beliefs about help and have learned to go more with the flow. I have no choice. Let's face it, I've learned that I am not the world's fixer and organizer. I am just a mere passenger on the bus. I've had to learn to trust that when I pull the cord and ask the other bus riders to assist me, they will.<br />
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Thank you to everyone who has helped. Your kindness has truly meant the world to me and made it possible for me to continue down this hard road. You all are my support and my strength. Volunteer any damn point you want. I will stop assuming things. I will ask for help. I will take the help. I only hope you know how much I love you back.<br />
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And, oh, you got problems or an illness? I got your back and will do my best to be there in any way that I can.<br />
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<span style="font-size: x-small;">Also published on CureToday</span>soozhttp://www.blogger.com/profile/13210862270394260310noreply@blogger.com0