tag:blogger.com,1999:blog-27145396123464719942024-02-20T05:14:48.081-05:00Cancer, Caregiving, and Contentious LoveMy mother was diagnosed with Stage IV Cholangiocarcinoma (bile duct cancer) in March, 2013. She died at home on June 7, 2014, with her husband and me by her side. This memoir is all about choosing to caregive my mother (and father at times) when I was probably my mother's least likely choice for caregiver. It's been a journey. Please join me.Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.comBlogger52125tag:blogger.com,1999:blog-2714539612346471994.post-37355691071570016822015-08-28T08:44:00.002-04:002015-08-28T08:44:57.899-04:00Cancer Caregiver? Participate in this Survey...<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUGxMfWGrV9NPGI3I5XaCRNUN_S2hkCxD0_gVhga_bBoYAU1sMJGBvH7IxjK9eNAaiincJ7nIF0ExdPxjToyGocIow66GU3yJWG3LgRXb28G2ZNlgfWRikx-RswMxU-JJjArkjqKkxBjA/s1600/survey.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="183" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUGxMfWGrV9NPGI3I5XaCRNUN_S2hkCxD0_gVhga_bBoYAU1sMJGBvH7IxjK9eNAaiincJ7nIF0ExdPxjToyGocIow66GU3yJWG3LgRXb28G2ZNlgfWRikx-RswMxU-JJjArkjqKkxBjA/s320/survey.jpg" width="320" /></a></div>
Hi folks -- I'm passing on this information for Alexis, who is studying the ways that caregivers might interact with their support groups. I'll let her tell you all about it...<br />
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"My name is Alexis Johnson and I am a doctoral student in the Department of Communication Studies at the University of Nebraska-Lincoln. My research centers on health communication processes, and I am conducting research that I hope will improve our understanding of supportive communication between social networks and family caregivers of patients with cancer. As someone who has provided care to a patient with cancer, I am interested in conducting research that is aimed at better understanding the memorable, supportive messages that are shared with family caregivers in cancer.<br />
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"To participate: Participants in the states of Nebraska and Alabama must be at least 19 years old or older to participate, participants in the state of Mississippi must be at least 21 years old to participate, and participants in all other states must be at least 18 years old to participate. If you meet these requirements, and are a current family caregiver of a patient with cancer, and have 20-30 minutes to complete an online survey, you are eligible to participate in this important research."<br />
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You can learn more about this survey by <a href="https://www.linkedin.com/pulse/request-assistance-cancer-caregiving-research-alexis-johnson?trk=pulse_spock-articles" target="_blank">going to the site</a> and clicking on the link on that page. You can also find Alexis' credentials and contact information at that site.Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com1tag:blogger.com,1999:blog-2714539612346471994.post-49453753849879210712015-08-03T01:02:00.000-04:002015-08-03T02:36:03.187-04:00How My Husband Died<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTb9ihB_RZ0ZlPehbuTwI2F6NCPJc21LmyP_IZk71P-LYJK3OD2D_W6SII5NrF1usizKK21trnuVX9aQkHtpTLu1pDTe0S1-IU9Xk9xgldiF_LJZE-J44wzqRp6cuxTzbhQ331Ryp3F3o/s1600/wedding.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTb9ihB_RZ0ZlPehbuTwI2F6NCPJc21LmyP_IZk71P-LYJK3OD2D_W6SII5NrF1usizKK21trnuVX9aQkHtpTLu1pDTe0S1-IU9Xk9xgldiF_LJZE-J44wzqRp6cuxTzbhQ331Ryp3F3o/s320/wedding.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hugh and I met in 1997, but we didn't marry until September 2010.</td></tr>
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I haven't written since I returned home from my Dad's house in April, because life was pretty hectic around home. It was good to be back with my husband, Hugh, and daughter, Cora, and we all were pretty busy. I was hired by a travel publication to write an itinerary about our town, my husband and I were working the local farmers' market, he was fixing up the house a bit, and he was anxious to get back on that school bus. I was so tickled about how much he loved driving that bus.<br />
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We even had insurance. So, while I was at Dad's house, Hugh scheduled a colonoscopy for himself. He couldn't get an appointment until the end of June, and the doctor called to cancel that appointment and to reschedule for July 6th. Hugh and I never discussed the colonoscopy, other than the fact that I planned to have one later in the year.<br />
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The day of the colonoscopy, Hugh said, "I'm afraid they're going to find something." When I looked at him, he told me that he had been bleeding for the past few weeks. My heart sunk, but I had enough experience with mom to know that I didn't need to get morose about this news. Instead, I told him that we could handle anything they found.<br />
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What they found was a tumor about the size of New York. When I saw the images that July 6th morning, I felt as though I had been hit up side the head with a 2x4. Fortunately, I was sitting, as all the emotions I had when I first learned about Mom's cancer returned, only twice as large.<br />
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The surgeon, one who had taken out my gall bladder four years ago, was optimistic, but wanted to run a few more tests to learn whether or not Hugh was a surgical candidate. They went on to schedule his surgery for Friday morning, July 17th, and his CT scan later that week showed that the tumor seemed contained and only one spot on his liver.<br />
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The waiting for tests and for his resection surgery seemed unbearable. He was worried about what they'd find once they opened him up. He was worried about losing his bus driving job and the insurance. He worried immensely about his booth at the farmers' market, and I had shut my arts & crafts booth down so I could run his cheese booth. I kept reassuring him that, whatever we learned, we could make it through this ordeal together.<br />
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Other than the farmers' market that weekend, Hugh and I shut ourselves down and spent our days together quietly in the house watching reruns of <i>House of Cards</i>. He wanted to watch the third season, but he wanted to get me up to speed so we could watch that season together. As things turned out, we only made it into the second episode of the new season.<br />
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Hugh was wheeled into surgery at 10:30 AM Friday morning. I kissed him and told him I loved him. I left the hospital, because I felt so nervous. I went to the coffee shop where he usually went every morning, and the owner came to me and reassured me that all would be well. I conducted a few more minutes of busy work, then returned to the hospital. Within an hour, a nurse asked me to go to the conference room, as the surgery was over, and the surgeon wanted to speak with me.<br />
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When the surgeon arrived at 12:30, he was all smiles. The surgery went "very well," and the lymph glands and liver actually seemed better than they looked in the CT scan. The lymphs were off to the lab for biopsy, and Hugh was in recovery. I could wait in his room for his arrival. The doc even assured me that Hugh could continue to drive a bus in August, provided he didn't lift anything.<br />
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I was beyond elated. This news was better than I expected, and I couldn't wait to see my husband to let him know all would be well. So I waited. Then, I fell asleep.<br />
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About 2:30 PM, the surgeon walked into the room and wanted to know where my husband was. I didn't know...and I was confused coming out of a deep sleep. He raced out of the room, and the head nurse entered the room to ask about my husband. I told her I didn't know, and she asked me to stay where I was.<br />
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Over the next hour, I learned that Hugh wasn't recovering well and that they intended to put him into ICU. I called my brother, and as I was standing in the hall talking, someone yelled, "Mrs. Blair, here's your husband." I looked, and Hugh turned his head to look at me. He was greenish-blue, and his eyes looked so sad. I knew then that nothing was going to go right from this point on.<br />
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I watched them wheel him into a room at the end of the ICU hall, and within five minutes I heard the announcement for "Code Blue," and watched as at least ten doctors and nurses ran to his room. At that moment, I felt the floor fall away from me, but I felt Hugh pressing me against the wall, holding me up. He said, "I'm sorry. I'm so sorry." Then I felt the arms of a nurse holding me, and I shrugged her off. She had made Hugh disappear.<br />
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Hugh's body was riddled with cancer cells that had compromised his liver. He went into DIC (<a href="http://www.nhlbi.nih.gov/health/health-topics/topics/dic" target="_blank">disseminated intravascular coagulation</a>), he developed a shock liver, and his kidneys malfunctioned. He also, from what I gathered, suffered a seizure and a heart attack. Still, the internist and his surgeon assured me there was hope. They found an artery that had burst after the surgery, so he went back into the surgical theater for another two-and-one-half hours.<br />
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During that time, a few friends showed up to wait with me. We had no word, so I felt at least Hugh was still alive. Despite all the alarming news, the internist and nurses kept reassuring me that there was hope. I should have known better after Mom's experience. When so much bad news is on the plate, there's not much room for hope. I later learned that 1% of all resection patients develop DIC and that none of those 1% survive.<br />
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Finally, I was able to go see him, but he wasn't really there. There was nothing in his eyes. I think Hugh died when he coded, and that I was just looking at a shell. I asked if I could return home to get a toothbrush and change of clothes, with the promise that I would return quickly. On my drive back to the hospital, I prayed that Hugh would live. As soon as that prayer exited my mouth, my mother was in my head saying, "Be careful what you pray for." I immediately added, "Let him live and be fully functional, if it's your will."<br />
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For the next four hours, I watched as they pumped 20 bags of plasma and 20 bags of blood into my husband. I watched as he maintained a 150 heart rate and a blood pressure of 46 over 36. Finally, I asked the doctor on duty what they planned to do. "We'll have a conference in the morning." I just shook my head and said no. We were going to end things now.<br />
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I knew I had made the right decision, because the doctor and nurses didn't argue with me. They quietly removed the IVs and asked me if they could shut down the respirator. Hugh was so drugged that he was unable to breathe on his own. I assented and asked them to give him the legal dose of morphine. Then, I just placed my right hand on his heart and held his left hand with my left hand and watched as his heart rate dropped.<br />
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All afternoon I had been saying "I'm sorry" to Hugh. I was merely echoing what he had said to me when he held me as he coded. Finally, I realized what I needed to say. I kissed him and said, "Cora and I will be just fine. You can let go now." And, he did. He flatlined at 2:38 AM on Saturday, July 18th, and the unexpected and unrelenting rain that had been pouring all evening stopped.Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com1tag:blogger.com,1999:blog-2714539612346471994.post-36935257315819594382015-04-28T21:19:00.003-04:002015-04-29T08:58:14.021-04:00How to Never Forget the Losses<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRL0QFVijjlF4xgV4ncOacQKYrX-CMq82mQErnRk95UvPcARaZxvT4cEEWkfRct8L4uENhSGsC1wWte6_0PiTruIm8aiu_Q_b9jX_chXgTYXCctnuDHtSuFkO0u6Y75a2acmlTY0VzQ5Y/s1600/3549_10200497134782683_1924687676_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRL0QFVijjlF4xgV4ncOacQKYrX-CMq82mQErnRk95UvPcARaZxvT4cEEWkfRct8L4uENhSGsC1wWte6_0PiTruIm8aiu_Q_b9jX_chXgTYXCctnuDHtSuFkO0u6Y75a2acmlTY0VzQ5Y/s1600/3549_10200497134782683_1924687676_n.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of two terrapins traveling on its annual pilgrimage through my parents' yard.</td></tr>
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I'm fond of Facebook...and I think most of my friends are aware of my "addiction." I manage Facebook pages for a few clients, so it's second nature for me to toss up a photo or a pithy saying on a daily basis on my own wall or pages while at that site. While this habit has become...a habit, I've realized lately that my additions to Facebook have become somewhat of a diary.<br />
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In my searches for what has happened in my life over the past two years, I've suffered pangs of hurt, sadness, and even utter and bitter loss over and over again. That pain has worsened with the new Facebook "look what happened on this day last year...or two years ago...or even a decade ago..." feature. Although I'm sure this daily reminder of the past is meant well, it can shake my socks off sometimes.<br />
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This morning, for instance, I was whacked in the face with the image of the terrapin shown here. Yes, it's just a turtle. But, it's one of two turtles that make an annual pilgrimage through my parents' yard. These two turtles...or their relatives...have been traipsing through my folks' yard since they moved here in 2000. The turtles just don't pass through. They stick around for a few days, playing hide-and-seek with each other and with us in the gardens before they move on.<br />
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While at some other point in my life I might have thought warmly about this photo and its family tradition, I happened to glance at the photos that braced that turtle image in my Facebook "mobile uploads" album. Those photos portrayed our first visit to the teaching hospital where mom was first diagnosed with cholangiocarcinoma. We had just returned from that city to discover the turtles in the yard, exactly two years ago today.<br />
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I'm glad I have this chronicle of events that happened over the past two years, because those clues are vital for writing the memoir. But, I'm not very keen on how I keep getting pinched by the past in the most unexpected ways. Sometimes, I feel as though I'm picking at a scab. What saddens me further is that we haven't seen the terrapins yet this year.<br />
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Maybe. Maybe. Maybe I'll get lucky and see them before I have to return home this upcoming weekend. And, maybe one day I'll truly be grateful for the memories.Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-46235094716261303782015-04-25T15:07:00.003-04:002015-04-25T15:12:31.009-04:00Friends Who Keep My Feet on the Ground<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggyXVdKKsLTOTqJxJvDS48OVkZuVF-2O47pMEdY98AGoGtorHdQH3L7vFLxLFPy90EY4J7koTq1maqqCkOqjCwrX2YCDSwTaqWt-vQYAysrbHR7eZMhzWoI68Dai2fZ0yzwTjD4YTWHDc/s1600/Mom_Ribbon.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggyXVdKKsLTOTqJxJvDS48OVkZuVF-2O47pMEdY98AGoGtorHdQH3L7vFLxLFPy90EY4J7koTq1maqqCkOqjCwrX2YCDSwTaqWt-vQYAysrbHR7eZMhzWoI68Dai2fZ0yzwTjD4YTWHDc/s1600/Mom_Ribbon.JPG" height="320" width="240" /></a></div>
Everything in my life has changed since my caregiving stint with Mom and with her death. I still can't think clearly about ordinary things and sometimes I feel like I'm floating through life. But, every once in a while a friend steps in to pull me back to earth. While on terra firma, I tend to make some rather large strides...like Gumby.<br />
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Take, for instance, my friend Kim Jacobs, owner of <a href="http://www.turquoisemorningpress.com/" target="_blank">Turquoise Morning Press</a>. One day, out of the blue, I receive an email from Stephen Zimmer. He said that Kim had recommended me to serve on a writers' panel at the second annual <a href="http://www.entertheimaginarium.com/" target="_blank">Imaginarium Convention</a>. After reading about all the guest speakers at this event, I felt a little intimidated...published authors many times over, owners of publishing houses, etc...how in the world would I fit in?</div>
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Then, I began to write my bio for the guest author pages, and I realized how much I had accomplished in my short writing career. That was a good feeling. The results also were a bit ironic...it appears I've focused on financial issues during most of my writing career...and I don't have two pennies to rub together. Ironic and hilarious, actually. </div>
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What's that adage about writing about what you know? I guess I sidestepped that advice. At any rate, I'm on board, and <a href="http://www.entertheimaginarium.com/linda-goin/" target="_blank">I'll be participating</a> in this event in mid-September.</div>
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Then, I learned that my friend Phyllis, an 11-year-cancer free breast cancer "warrior," was participating in the Kentucky Derby Festival Marathon today. She was gathering donations for the wonderful Gilda's Place in Louisville. For $20, a person could purchase a ribbon that Phyllis would wear during the event. I jumped all over that one, but when I went to donate, I learned that my credit card information was stolen about five days earlier. The only way to donate was through credit card.</div>
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But, Phyllis worked it out, and the result is shown in the photo above. Phyllis attached the ribbons to a ribbon and she wore that contraption as a tutu. In the rain. What a cold and messy day! But, Phyllis finished the marathon, and she thinks her time was 3:49:00. Mom's ribbon is Kelly Green, the color that represents bile duct cancer.</div>
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What a gift. What a memory. What a wonderful thing for my Mother, who loved horses and Derby week. That love came, of course, from the time she spent out West with us and, mostly, with my brother and his partner, Linda, at <a href="http://menokenfarms.com/" target="_blank">Menoken Farms</a>.</div>
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Thank you, Kim. Thank you, Phyllis. Thank you both and everyone else for your parts in keeping my feet on the ground and moving.</div>
Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-39401826091171581882015-04-17T00:10:00.001-04:002015-04-17T01:01:08.203-04:00Motivation<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;"><span style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><a href="http://www.curetoday.com/publications/cure/2015/winter2015/lining-up-for-online-support/1" target="_blank"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg38LYmX5dVmPz-anVZKLELsGDhkL2WPgT7JvdoiKZMNQLGKu1CAtPnwGpfz7C41Q1eskmCLjVrF6ZbANHNKfmWNcvhQJkepU0m7ZSpIAa5UkLP7jG2bzuRLwPb0nRg-sHqKcqxg2yQhhA/s1600/Cure.jpg" height="200" width="142" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://www.curetoday.com/publications/cure/2015/winter2015/lining-up-for-online-support/1" target="_blank">From Cure Magazine's article</a></td></tr>
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This morning, <a href="https://www.facebook.com/MaraEveRobbins?fref=ts" target="_blank">Mara Eve Robbins</a> posted a poem I wrote a year ago on my personal Facebook wall. It needs editing, but it hit home. The poem was about a comparison between my mother and myself, about death, and about the forty pair of shoes my mother left behind. It's been a little over ten months since mom died, and the last pair of her shoes left her closet on April 4. My daughter and I packed them into the car for the trek back home. Then, my daughter and husband piled themselves into the car and left me with dad.<br />
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Yep, I'm back in the caregiving saddle again.<br />
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Mara's post also hit home, because it was just a year ago that I took off with her to stay at her house in Floyd, Virginia for Easter weekend. Did I realize it was Easter weekend at the time? No. Something has happened to my thinking over the past three years that disabled my ability to connect with the rest of the world. Except for Christmas, holidays don't seem to exist.<br />
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And, it's Poetry Month, and I'm not writing poetry. I haven't written anything in the memoir, either. I haven't written my blogs or anything else other than work for a new client. While I can use that client work for an excuse, I think, frankly, that I just needed a break.<br />
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Darrell Laurent, long-time columnist for the Lynchburg newspaper and author of several books, wrote something this morning in his public Facebook Group, <a href="https://www.facebook.com/groups/116883148326662/" target="_blank">The Writers' Bridge</a>. He wrote:<br />
<blockquote class="tr_bq">
"Losing our motivation is part of the larger creative process. We wouldn't have the bursts of inspiration and productivity without the difficult creative dips. </blockquote>
<blockquote class="tr_bq">
"When we lose our creative steam, not only does our writing come to a crawl, but we also start feeling low about ourselves. </blockquote>
<blockquote class="tr_bq">
"For example, when you aren't writing, the feeling that you should be working nags at the back of your mind. This tension creates further stagnation and deepens the creative funk."</blockquote>
Some tips he provided included 1) Honoring the rest period; 2) recommit; and 3) talk about your work...among others. Those three points stuck with me.<br />
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Since I don't believe in coincidence, I honor the fact that Mara posted that poem and that Darrell posted that article. They both motivated me to blow through this fog and get something down in writing.<br />
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And, now that I've started, it seems the flood gates are opening in my head. There's just so much...so much.<br />
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Two major events happened recently regarding the book. Denise Brown at <a href="http://www.caregiving.com/" target="_blank">Caregiving</a> and I had another little blog chat, this time about marriage (and the marriage, btw, is doing much better). That 1/2 hour discussion is available at <a href="http://www.blogtalkradio.com/caregiving/2015/03/07/table-talk-taking-care-of-your-marriage-and-your-caree" target="_blank">Blog Talk Radio</a>.<br />
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The other issue is the <a href="http://www.curetoday.com/publications/cure/2015/winter2015/lining-up-for-online-support/1" target="_blank">article in Cure Magazine</a> about caregiving. I'm not sure why they have me in that article, because it opens with me, but doesn't go anywhere with me. The initial article was much more involved. But, they had a photographer come out to my town to take a photo, so I guess they felt compelled to use it. As a result, I have a speaking engagement in Louisville in August. This is a good thing.<br />
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Last, but not least, I'm been somewhat gainfully employed by <a href="http://merchantnegotiators.com/" target="_blank">Merchant Negotiators</a> since January. I have conducted a lot of writing and research for that company over the past few months leading up to that site's "going live" this past week. Once again, I'm writing about financial issues. If I ever win the lottery, I know a lot about how to manage those winnings!<br />
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As for dad -- he's doing fine. He's actually doing great. I just needed to validate that information for myself. More about him later at my blog on Caregiving.com.Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-37814166338765999002015-01-04T12:29:00.001-05:002015-01-04T13:38:47.196-05:00Beating the Flu<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsDwOYT849EMvyroou6H8n6BizCppRtY61uG5Gpu58bOUGj7ypl46CWrFRqQMOmYhlgsV_UDMEOmTXbaeeUZ4BAAqsS3mApHpVrjs_RXQxuvAVrkBQkpW5tZA-V5f8dkdJJJpKNxrvK0M/s1600/christmas_2014.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsDwOYT849EMvyroou6H8n6BizCppRtY61uG5Gpu58bOUGj7ypl46CWrFRqQMOmYhlgsV_UDMEOmTXbaeeUZ4BAAqsS3mApHpVrjs_RXQxuvAVrkBQkpW5tZA-V5f8dkdJJJpKNxrvK0M/s320/christmas_2014.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dad's Gifts, Christmas 2014</td></tr>
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Happy New Year! Sorry I've been absent over the holidays, but my body chose that time frame to contract the flu and hold onto it like it was gold. I'm not one of those individuals who likes to complain in public, but dang -- I feel for anyone with this flu, especially for those individuals who received the flu shot. Seems the authorities missed out on this strain big time.<br />
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Despite my down time, I accomplished a slew of tasks. I couldn't visit Dad over the holidays because of my illness (hubby was sick, too) and because we were strained financially by the loss of my last client. Still, my daughter and I managed to get out and purchase a few things for Dad and send them to him. He especially loved the kitchen scissors and the denture cleanser (something he can't find that easily where he lives). More about this effort at my Caregiving.com blog, <a href="http://www.caregiving.com/2014/12/i-wont-be-home-for-christmas/" target="_blank">I Won't Be Home for Christmas</a>.<br />
<br />
Also enjoyed the Caregiving.com Blog Party. I met a lot of new caregivers who blog about their experiences (many listed already in my "links" section), and I had quite a few visitors. Was happy to hear that "Jennifer" won the invisibility cloak that I offered as a prize. That cloak arrived from London the day before the winner was announced, and I'm sending it back out to Jennifer tomorrow. Hope she enjoys!<br />
<br />
Making progress on the memoir, too. I'm looking forward to one more writer's retreat in January to finalize the poetry for the book. Then, by mid-February, I should be able to hand the book over to my editor. After a few beta reads, I'll self-publish the book and it should be available by May at the latest. To celebrate, I've created a <a href="http://lindagoin.com/" target="_blank">website for the book</a> and for future publications, too. Easy enough to remember -- lindagoin.com!<br />
<br />
January 3 was a huge day for me, thanks to Denise at Caregiving.com (I happen to love that site, can you tell?). She provided an opportunity for me to plug my memoir and talk about caregiving during a live interview. That interview now is available online at <a href="http://www.blogtalkradio.com/caregiving/2015/01/03/table-talk-linda" target="_blank">Caregiving's Blog Talk Radio</a>. Give yourself about 40 minutes to listen to us jabber away.<br />
<br />
That's about it for now. I am feeling much better, and if you were sick (or if you're currently ill), I wish for your health to improve soon. Let's all focus on a great 2015 so we can stave off the monsters. Cheers~!<br />
<br />
<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-46619815846956442812014-12-07T12:12:00.000-05:002014-12-07T12:12:41.786-05:00A Warm Welcome to the Blog Party!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBpkXQBkomyswYOn0ROzV3CDWSKolPMuGJCkSkDC5noH-yKLjGJm_iR_Q3Z_cT8OKn1SVouMg9qxI_JO7zgABfoznDbKxFTxJe3fZkMB9-fHJhRll-AuI63YRb2rSRqlEhHYTdgr4KW94/s1600/blog_party.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBpkXQBkomyswYOn0ROzV3CDWSKolPMuGJCkSkDC5noH-yKLjGJm_iR_Q3Z_cT8OKn1SVouMg9qxI_JO7zgABfoznDbKxFTxJe3fZkMB9-fHJhRll-AuI63YRb2rSRqlEhHYTdgr4KW94/s1600/blog_party.jpg" height="320" width="264" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Young woman decorates the Christmas tree, painting by Marcel Rieder (1862-1942) from 1898</td></tr>
</tbody></table>
A warm welcome for all my new visitors (and old friends as well). Today marks the beginning of the Caregiving.com's Fifth Annual Holiday Progressive Blog Party, and I'm one happy participant! Throughout the week of December 7, you can stop by the blogs of family caregivers and drop off holiday well-wishes and good cheer. This year, the party also includes companies that provides services and/or products to help family caregivers.<br />
<br />
<ol>
<li>Be sure to stop by each site during the week. The sites are listed at <b><a href="http://www.caregiving.com/2014/12/blog-party-participants/#comment-470480">Caregiving.com</a></b>.</li>
<li>When you stop by, share a comment and let the blogger know you’re visiting because of CareGiving.com’s Holiday Progressive Blog Party.</li>
<li>Be sure to stop by that page at Caregiving.com regularly, as more participants may be added as the week goes by.</li>
</ol>
<br />
I was happy to be able to donate a prize for this party -- an invisibility cloak. Everyone (caregivers especially) would love a chance to become invisible every once in a while, I believe. Put on that cloak (provided by <b><a href="https://www.etsy.com/listing/203830607/invisibilty-cloak?ref=shop_home_active_1" target="_blank">Cat at her Etsy shop</a></b> -- if you don't win this cape, you can purchase one from Cat!).<br />
<br />
Welcome, welcome, welcome. I hope you can stay a while...Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-89976789612535749692014-12-06T14:25:00.002-05:002014-12-06T14:25:52.706-05:00Six Months In: Thoughts About Active Dying<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW4gPC9jTnqXO_GrXEF6_MphQ_S4tofyDXZM0P1fLCIPJ_e7WEcWbLKI8P7YNfTsGfduEtbPjLJpX4V-4jyn_A8X_QMnN4loNtY-bZs1J9FKYuNfhtmehKSdTwvi6Ukovd4kt64QBjpm0/s1600/GriefAngel.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW4gPC9jTnqXO_GrXEF6_MphQ_S4tofyDXZM0P1fLCIPJ_e7WEcWbLKI8P7YNfTsGfduEtbPjLJpX4V-4jyn_A8X_QMnN4loNtY-bZs1J9FKYuNfhtmehKSdTwvi6Ukovd4kt64QBjpm0/s1600/GriefAngel.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Life has many mysteries, but there is nothing comparable to death"</td></tr>
</tbody></table>
Tomorrow marks sixth months since my mother's death. The six month mark is especially difficult for spouses, so I'll be checking in on dad. For me, it hasn't been that rough (yet), because I've been so focused on other issues. But, that grieving timeline does affect me; otherwise, I wouldn't have woken with a start the other night thinking I had forgotten to flush mom's biliary catheter.<br />
<br />
Those last three days before mom's death were breathtaking for me. The last coherent thing she did before she settled into her hospital bed in the living room for the last time was to pick out her urn. She dressed herself (with a little help), and held court with the funeral directors for about two hours. Then, she returned to her nightclothes and settled in for what appeared to be a 24-hour coma.<br />
<br />
But, perhaps it wasn't a coma after all. I'm still learning about "active dying," or the end our "life in form," and how dying is a very active part of our lives. <a href="http://deathcafe.com/deathcafes/" target="_blank">Death Cafe</a> shared an <a href="http://www.oshonews.com/2014/12/mystery-reality-death-dying/" target="_blank">interesting article</a> this morning on Facebook, and I was thrilled to read the information contained in this piece about active dying. This article didn't focus on the usual 'list' of "are they dying yet" tips. Instead, this article speaks from a space that is both spiritual and physical. The third paragraph caught my attention immediately:<br />
<blockquote class="tr_bq">
Often the time of death is preceded by an apparent coma, in which many things happen below conscious awareness. It is a great challenge to develop the spiritual guidance and inspiration, the vision and knowledge that can speak of the peace in surrender, and guide each other there.</blockquote>
Oh, that paragraph took me back to that moment six months ago, when I <i>knew </i>that mom heard everything that was going on around her. Although she seemed 'dead to the world,' she was active inside...her body was rapidly breaking down, and her mind was somewhere I couldn't touch. But, I knew she was still with me. She validated my assumption by becoming more communicative the day before she died, and by affirming she heard everything by answering some of my questions.<br />
<br />
The article leans into Buddhism, and my mother was a deeply devout Christian. But, she often listened to my brother's Buddhist thoughts on spirituality, and she liked them. I think she would have enjoyed this article in another space and time, including its focus on metaphysical changes. Yes, metaphysical...the author is answering the questions, "what is ultimately there," and "what it is like."<br />
<br />
If I take this article to heart, however, I'd have to laugh at the efforts that dad and I made to open the doors for her to hear the birds and to talk to her about the imaginary rabbits and turtles that we saw in the yard. According to the article, mom really wasn't aware of our efforts at the end...<br />
<blockquote class="tr_bq">
During the period of the near-death reflex, the mind-body also experiences the release of beta-endorphins and other neuropeptides. The inner experience is a profound relaxation of the entire body, so profound that any awareness of the outside world disappears.</blockquote>
Ah, so. Dad and I were playing out those roles for ourselves. That's fine, too.<br />
<br />
I know that I never would have remembered the information in this article while mom was alive. I was too concerned with her moment-to-moment living conditions. But now, looking back at those three days before her actual death, this article speaks to me like no other words have to this point.<br />
<br />
For that revelation, I'm grateful.Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-48769984587084173722014-11-29T15:19:00.002-05:002014-12-02T12:35:44.919-05:00Blog Parties and Invisibility Cloaks<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="margin-left: auto; margin-right: auto;"><a href="https://www.etsy.com/listing/156679850/adult-superhero-cape?ref=shop_home_active_1" target="_blank"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsMCE814I-74oz7VcYJCwBvCdDpSW1lGQJ6vM4E91zKITrjsouiJcoszbNqMUeIXGkh7M62DhgHTjhSNVtBqzIIlBG-6lb7hQxA2M083OedKts6M4barIvN4uxUtT1RW-ImDWzC9jkiVc/s1600/silver_cape.jpg" height="240" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="https://www.etsy.com/listing/203830607/invisibilty-cloak?ref=shop_home_active_1" target="_blank">The silver "invisibility" or "superhero" cape -- perfect for caregivers for the holidays!</a></td></tr>
</tbody></table>
If you've followed me on <a href="https://twitter.com/GoinLinda" target="_blank">Twitter</a>, <a href="https://www.facebook.com/ContentiousLove" target="_blank">Facebook</a>, or here at the blog, you know that Thanksgiving sucked for me. But, I recovered nicely, mainly because I was grateful that dad had a great time with his friends. Plus, my brother called, and -- despite my initial nausea over the smell of my husband's turkey -- that meat sure was good on a sandwich.<br />
<br />
Next up -- the "real" holidays. Christmas, Boxing Day, Hanukkah, whatever individuals celebrate during December. I'm dreading the upcoming holidays and all the traditions that go with them. In a discussion with other caregivers and family members who lost their loved ones this past year to bile duct cancer, one woman said, "Christmas will even be worse" than Thanksgiving. I thought, "Wow -- I don't know if I want to project that far ahead," but then another woman agreed that the holidays will be worse, and then another woman agreed...<br />
<br />
So, maybe Christmas will be worse than Thanksgiving, but I'm going to do everything I possibly can to reverse that direction for myself. Someone else asked if it was acceptable to be "peacefully inactive" for the holidays. Of course! Even more so, it would be wonderful if caregivers could become invisible. Just for a few hours, maybe, or a day...and, in the right situation, maybe for an entire week through New Year. What if we could wear an invisibility cloak that could serve us throughout the entire year when needed?<br />
<br />
So I went hunting for an invisibility cloak and I <a href="https://www.etsy.com/listing/203830607/invisibilty-cloak?ref=shop_home_active_1" target="_blank">found one at an Etsy shop</a> based in England. This cape is not for me, however. I'm giving it away through Caregiving.com's upcoming <a href="http://www.caregiving.com/2014/11/holiday-progressive-blog-party-starts-dec-7/" target="_blank">Caregiving Holiday Blog Party</a>. I've posted a link for this event in the right column on this site. If you cannot see that red background photo, please let me know and just use the link in this paragraph. Those links can take you to the event page to learn more about how to win this cape and at least five other prizes during the week between December 7th and 13th.<br />
<br />
Many thanks to Cat and her to her Etsy invisibility capabilities! I'm excited about providing a caregiver with a way to become invisible anytime he or she wants. What a great gift, period, for any caregiver!<br />
<br />Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-68287947656544481552014-11-28T12:12:00.002-05:002014-11-28T12:12:48.858-05:00The Holidays for Caregivers<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0mzpquXFS_cm2CcWnR-nYjKMKUgRJHhWam_ux_El4X1W2iOqimYbELI1V5U6UzKM6FRx8YgKtGsahmXxSgdWQo6Tff-DvSmpliRPMuQbaEPSZ5nK6iphyphenhyphenc93-2rTNHn3todAdte3fMnY/s1600/Blue_Robe_2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0mzpquXFS_cm2CcWnR-nYjKMKUgRJHhWam_ux_El4X1W2iOqimYbELI1V5U6UzKM6FRx8YgKtGsahmXxSgdWQo6Tff-DvSmpliRPMuQbaEPSZ5nK6iphyphenhyphenc93-2rTNHn3todAdte3fMnY/s1600/Blue_Robe_2.jpg" height="208" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">What will Christmas be like without mom? I'm about to find out, with support from the folks at Caregiving.com...</td></tr>
</tbody></table>
The holidays will never be the same after a death of someone close to you. Even if that person got under your skin, something in you will expect that irritation -- especially during the holidays. That voice! Will it stay in your head forever?<br />
<br />
On the other hand, the loss can be overwhelming. Not only is a loved one gone, but your life has changed. Forever. There's no pulling a cat out of a hat on that one. What are you feeling now? Rage? Frustration? Guilt?<br />
<br />
No matter what you're feeling (if you survived Thanksgiving, that is), you might find comfort in the <a href="http://www.caregiving.com/holiday-survival-guide-2/" target="_blank">holiday survival articles</a> posted at Caregiving.com. The "Attitudes on Platitudes" gave me my first laugh-out-loud moment yesterday. "Bah Humbug? A True Tale of Christmas" showed me how I have the power to alter my holiday traditions to make a new history for myself and my family. "Ten Signs an Aging Relative Needs Help" helped me decide if my remaining parent needs help or if I need help...(reading halfway through the list made me realize I'm in dire straits!).<br />
<br />
I invite you to snoop around at <a href="http://www.caregiving.com/" target="_blank">Caregiving.com</a> to see if this site fits your needs. I know, while caregiving, that little time is spent on what the caregiver needs or wants...and it takes time to commit to dedicating yourself to a group of individuals who may really understand you and care about you...but, hey. During the holidays, it might be just what you need.<br />
<br />
Membership is free. Just join us. Now.<br />
<br />Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-32384703674894796852014-11-23T20:11:00.000-05:002014-11-24T08:47:58.169-05:00The Writers' Retreat<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSOwQSzf6IzstveqXRDxOrqpnHj2R_wWG1i_DM3LHCQU2oswoXslgg4Y9psC-5bCJiHxA3CMHhDO2yen6zie1ygJM-nsTbHYFBC5elBoRBTCKbeXkrSocinKZv1P01XjBa-0_9RMLAAzY/s1600/1122141540.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSOwQSzf6IzstveqXRDxOrqpnHj2R_wWG1i_DM3LHCQU2oswoXslgg4Y9psC-5bCJiHxA3CMHhDO2yen6zie1ygJM-nsTbHYFBC5elBoRBTCKbeXkrSocinKZv1P01XjBa-0_9RMLAAzY/s1600/1122141540.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Writing away at the writers' retreat.</td></tr>
</tbody></table>
I am so very grateful for contributions to my <a href="https://www.indiegogo.com/projects/cancer-caregiving-contentious-love/x/8601022" target="_blank">Indiegogo campaign</a> -- which is almost at an end. Thanks to my supporters, I was able to attend the <a href="http://www.greenriverwriters.org/" target="_blank">Green River Writers</a> retreat at the Kavanaugh Center in Crestwood, Kentucky, this past weekend, where I had access to solitude for writing, to writers who offered constructive criticism for my poetry (which is going into the memoir), and an opportunity to read part of my memoir to a discerning audience.<br />
<br />
I'll never read that piece in front of an audience again. The part I chose was the third section, where my mother dies. The part about breathe. I actually lost my breathe while reading the piece aloud. One fellow writer thought -- just for a second -- that I was acting, then realized that I was almost in distress. But, I pulled it out of the hat; although, today I'm exhausted. Reading that one particular portion of the memoir wore me out as much as swimming the English Channel (not that I can swim, mind you).<br />
<br />
I haven't been able to attend a Green River retreat for three years. The last time I attended a retreat, my mother was in apparent good health. It was a constant marvel to me how the past two years flew by, how quickly a story can become a dark memory that's so easily tucked into a corner. By forcing myself to get out, reconnect, and read and write, I'm forcing myself to connect to my mother's death over and over again. I can take it...I hope, though, that none of my perceptions are warped in the process.<br />
<br />
This is why it's so important for me to write now, when memories are fresh.<br />
<br />
Other highlights this past weekend:<br />
<br />
1. My laptop is biting the dust. Crap.<br />
2. Met <a href="https://www.facebook.com/pages/Poems-from-Willow-Drive/181285301908485" target="_blank">George Eklund</a> at the retreat and learned about some of his creative poetry processes.<br />
3. I reconnected with several friends who also lost spouses, parents, and friends over the past three years.<br />
4. I connected with new friends who also lost spouses, parents, and friends over the past few years.<br />
<br />
One writer friend lost 29 friends -- some close, some not-so-close -- over the past year. We can't figure out if all these losses are normal at our ages, or if we're actually transitioning into a Stephen King novel. The cancer losses are breathtaking.<br />
<br />
You can view <a href="https://www.facebook.com/linda.goin/media_set?set=a.10204359042047951.1073741832.1586948835&type=1&pn" target="_blank">some photos</a> I took at the conference if you want to feel more connected, too. I'm into black and white photography right now, as you'll learn. I think someone took a photo of me along the way, but I'm not certain. I do have witnesses.<br />
<br />Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-68622930455671789922014-11-20T13:47:00.001-05:002014-11-20T13:48:44.545-05:00Letters from the Past<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK9LduVGq6WtG-JNANPwGDV6rd46UcK0ZFyQXmFS2ZkXXznbd8HvWgjHny4eiRkV3WCpMC2V-iYcOpDDGMLmXXxWPc85nS2vydWMEkauE6qihMEc8R3kRXh-gxbeuDaYQVLGQA9hE_aOg/s1600/letters.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK9LduVGq6WtG-JNANPwGDV6rd46UcK0ZFyQXmFS2ZkXXznbd8HvWgjHny4eiRkV3WCpMC2V-iYcOpDDGMLmXXxWPc85nS2vydWMEkauE6qihMEc8R3kRXh-gxbeuDaYQVLGQA9hE_aOg/s1600/letters.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Letters, negatives, and other paraphernalia.</td></tr>
</tbody></table>
Mom left behind a lot of "things" to go through. I don't like her stealthy way of hiding recipes (which all can found found online save a few), coupons (some dated to 2005 or earlier), and newspaper clippings. Other items, like the box filled with letters that her parents wrote the month before mom was born in 1934, are well worth discovering.<br />
<br />
I went through this box of letters a few nights ago. Being an historian, I recognized the value of these letters. They're not just love letters filled with endearments...they're artifacts that give a glimpse into what life was like in Virginia in August, 1934.<br />
<br />
At that time, my grandmother, Elizabeth, was living in Roanoke. Her husband of barely nine months, Leo, was stationed as a National Guard recruit in Virginia Beach. It was four years into the Great Depression, and my grandparents note the cost of several items. They also talk about borrowing $3.00 like it was a burden and a sin. And, yet, they're about to have their first child together.<br />
<br />
I think these letters might make for yet another book...Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-34575871327767122152014-11-16T16:02:00.003-05:002014-11-16T18:58:46.048-05:00Overcoming Another Major Organization Hurdle<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoClkoOdF4C9XPa_3fbq-VQ7Kzz6mLilzXx5XDe6EIbWxVoOJB2-nj3WbIZZkhBRS4X2OOOJDT3H_VaBVn4fqk8dbRnb0P-jobNzllq13z6uM2NYKZpClP6VZLIyGFxZXQ5Wx7NkD-a4U/s1600/desk.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoClkoOdF4C9XPa_3fbq-VQ7Kzz6mLilzXx5XDe6EIbWxVoOJB2-nj3WbIZZkhBRS4X2OOOJDT3H_VaBVn4fqk8dbRnb0P-jobNzllq13z6uM2NYKZpClP6VZLIyGFxZXQ5Wx7NkD-a4U/s1600/desk.jpg" height="320" width="275" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My desk this morning and then...this afternoon.</td></tr>
</tbody></table>
By the end of November, I should have this house in fairly decent shape. I need to be more organized, because I'm juggling several balls right now -- my Etsy shop, Amazon book sales, an upcoming writing workshop, clients, and -- the main purpose behind all this activity -- my memoir.<br />
<br />
It made perfect sense for me to tackle my desk today in light of the deadline I set for myself with clients and the book. In the photos above, you can see a cluttered desk filled with items that I needed to list on Amazon and other items I need to photograph for sale on my Etsy shop (links to both venues are listed in the right column). All those items now are in their proper places, mostly. I did make it through the books today, and they're all out the door, listed on Amazon, or on my bookcase in the bedroom. I'm limiting myself to one bookcase for books I want to keep.<br />
<br />
The other items are sitting on the folding table behind me as I sit at my desk. My next task is to photograph those pieces, then list them on Etsy and put them away in a nice, neat box until they're sold.<br />
<br />
I don't know if I would have found the motivation to become more organized without <a href="http://www.caregiving.com/forums/forum/30-day-organization-challenge/" target="_blank">Caregiving.com's 30-Day Organization Challenge</a>. I don't like to fail at anything, and making a commitment to this challenge was one of the best things I could have done for my family and for myself. I have been battling depression for the past two years since before mom's diagnosis, and my struggle seems to be worse lately. I think it's because I don't have to focus on mom's caregiving anymore, so the focus is on me and my losses. It's all part of grief and grieving. A competition to become more organized was, surprisingly, just what I needed to begin to look at my life with new perspective and with less stress.<br />
<br />
I'm happy about seeing my desk again. I'm also happy that I've untangled the speakers and separated them for better sound since I took that second photo. During this "desk-cleaning" project I was pleased to find a bracelet I thought I had lost. Bonus!<br />
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Now, to rid myself of this paranoia. I feel like the objects lurking on that table behind me are making fun of me and just waiting for me to fail at moving forward on these tasks. Little do they know that I have them on my "organization" hit list for tomorrow.Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-66543550870666556062014-11-14T12:16:00.000-05:002014-11-14T12:16:45.877-05:00New Post at Caregiving.com -- a Great Community for Caregivers<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDITX0xL44ZAr-pFx2u49tsbHA8NuA7-KcM0n59U3y6k4hH2yw3Sb_GOoaDLSmyHoUAQs9VAbE0bPxyjFvkiwmporke70ytObX6KW549BRyokel2vMiCvpgmWuMOSqW7t0O1WXYig2PR8/s1600/dad_hugh_later.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDITX0xL44ZAr-pFx2u49tsbHA8NuA7-KcM0n59U3y6k4hH2yw3Sb_GOoaDLSmyHoUAQs9VAbE0bPxyjFvkiwmporke70ytObX6KW549BRyokel2vMiCvpgmWuMOSqW7t0O1WXYig2PR8/s1600/dad_hugh_later.jpg" height="305" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dad and my husband at a market this past fall.</td></tr>
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I have a new post up about long-distance <a href="http://www.caregiving.com/2014/11/treading-water-2/" target="_blank">caregiving for dad at caregiving.com</a>. This task of caregiving for dad is not a chore at the moment, but changes have altered the scenario both here at my home and at dad's place. My footing as a caregiver for dad is totally off-balance and unsure. I don't really know what he needs right now, but I guess that unknown is alright. At least, he seems to be doing well for his age. He seems to be doing somewhat fine alone, but I think I know he's not happy.<br />
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I'm not happy. None of us are happy right now. Life is stressful, but we all keep going along, doing what we think we need to do. Some of that "knowing" has changed, though, since mom's death. I am finding support at <a href="http://www.caregiving.com/" target="_blank">Caregiving.com</a> -- what a great little community with some great leadership through Denise. In fact, I can't keep up with all the blogs, the activities, the podcasts, or the events this site offers; but it's great to know I have those resources available.<br />
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Without caregiving.com, in fact, I wouldn't have had the initiative to get organized around here. Hugh, my husband, wouldn't have a studio for making his baskets. I owe all that to the short amount of time I've spent with Denise and the other caregivers at that site.<br />
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I wish dad would find a community similar to what I've found with caregiving.com. He's not computer savvy, though, so that community would have to meet in person. But again, I don't know what dad needs right now. I don't think he knows what he needs.<br />
<br />Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-44176470966005626322014-11-13T10:40:00.002-05:002014-11-13T10:41:58.413-05:00I'm a Caregiver, and I Matter<div class="separator" style="clear: both; text-align: center;">
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A birthday present to myself. Brenda Avadian leads caregivers in a simple Mirror Exercise to remind them, "I'm a Caregiver and I Matter." Caregivers experience a wide range of reactions depending on where they are along the caregiving journey.Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-4873676247360607652014-11-10T00:04:00.000-05:002014-11-10T01:21:55.159-05:00There's No Turning Back...<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4as4sqy7rNwXv6cb-HlSpN6nCDSaGetYZXcQOUHGhXZMx1V7yiCfUZyrfwRp84Cx1VHEcgY89jd-bUxpuDAtxatK6Xxws5ajD_KxoD_nfNK1czGkpvK3inHnSnK7GIhssxB4nTOvQ8f0/s1600/Keyboard.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4as4sqy7rNwXv6cb-HlSpN6nCDSaGetYZXcQOUHGhXZMx1V7yiCfUZyrfwRp84Cx1VHEcgY89jd-bUxpuDAtxatK6Xxws5ajD_KxoD_nfNK1czGkpvK3inHnSnK7GIhssxB4nTOvQ8f0/s1600/Keyboard.jpg" height="180" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Logitch K120 keyboard, which I've owned for about three years. Note the dents, the missing letters, and possible pieces of peanut butter sandwich lodged between the keys. This is a writer's keyboard.</td></tr>
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If I had been on the ball today, I would have written a post for <a href="http://www.caregiving.com/">Caregiving.com</a> about caregiving my father from a distance. That topic is so muddled these days that I can't make sense of it, though, and I can't put it on paper yet. Death, when it touches someone close to us, changes us. All of us. There's no turning back.<br />
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That change goes very deep, too. I realize, in my conversations with other caregivers, that we're a breed apart in many ways. We have one portion of our lives (usually our own) that's disorganized and unimportant. The other part of our lives is insanely organized, much like <a href="http://www.grandin.com/design/design.html" target="_blank">Temple Grandin's Livestock Handling Systems</a>. What goes in follows a defined path until it exits.<br />
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My life as caregiver to mom was organized. It became more organized the sicker she became. The one-time-per-day seven-day pill holder went to a two-week pill holder that held morning, noon, and night pills. The journals became real journals instead of sticky notes. The physical observation went from downright obvious to sly, so it wouldn't upset mom to know that I was becoming more concerned about her yellow skin, her swollen ankles, her swelling stomach.<br />
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My life, on the other hand, kept fading into the distance. It helped that I wasn't at home for this illusion to work. Home became a lone fragment of fog floating up and over a mountain away from my daily routines.<br />
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But I'm home now. It's real. I'm becoming more organized. You may have read about part of that organization in my <a href="http://contentiouslove.blogspot.com/2014/11/making-progress-with-organization.html">previous entry</a> about changing the spare bedroom into a basket-making studio for my husband. My office? Still the same -- I have a path that leads from the door to my chair. I have a keyboard with no letters from overuse. I have chaos.<br />
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But, I'm focused on my mission to finish this memoir. My tool is the clock. I've used it before in keeping time with mom's daily routines, and I can use it again in writing this book. I know how that time-keeping works, as do so many other caregivers. Time. That linear framework consisting of hours, minutes, and seconds is all we have to align ourselves among the realities of health, sickness, and death.<br />
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There's no turning back (except for this damnable daylight savings time bullcrap).Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-58988348810347452962014-11-07T17:49:00.000-05:002014-11-07T21:19:05.359-05:00Making Progress with the Organization Challenge<div class="separator" style="clear: both; text-align: left;">
<span style="text-align: left;">Two days ago I posted photos that I took of the spare bedroom that my husband and I are working on so he can use that space to make his hand-made baskets. Those photos, which I took on November 1st, represent the mess created by me from traveling back and forth between my parents' home and my home over the past two years -- plus dragging a lot of mom's things back with me to my home. Today, just seven days into the month, we've made tremendous progress on this room.</span></div>
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I'm very grateful to Caregiving.com's <a href="http://www.caregiving.com/forums/forum/30-day-organization-challenge/" target="_blank">30-Day Organization Challenge</a>, because I don't believe we would have made this progress without a challenge. Take a look:</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVaKYs0hQNo34Dl_3AUywU9GdiW_OdKf90BrunWict5SqgDTUWv3SAcrXO2s8WGCMxjNFpM3-GPDhl5XnHZAgdW6VyqBA4W9kqRh-T7gks0mcCC6NbsMrodUs68m-zDxWGDIcPpY-6hAE/s1600/window_2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVaKYs0hQNo34Dl_3AUywU9GdiW_OdKf90BrunWict5SqgDTUWv3SAcrXO2s8WGCMxjNFpM3-GPDhl5XnHZAgdW6VyqBA4W9kqRh-T7gks0mcCC6NbsMrodUs68m-zDxWGDIcPpY-6hAE/s1600/window_2.jpg" height="320" width="284" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The first image of the corner near the closet -- everything is gone! I won't tell you what my office and our bedroom look like, though...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKUlZB7QIshG39sG-b3WOKqzWvKni1c43cRy571lFlEK-P1lgVpYXyXKIwMzC8o8OxYJz3iXf4ta2nLHKWoPwAplTq-skJLbE2AG9kSLyq8C_AxWlPHYZoelKVCPDfUVOoXZ9JDvu2-Ak/s1600/closet_2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKUlZB7QIshG39sG-b3WOKqzWvKni1c43cRy571lFlEK-P1lgVpYXyXKIwMzC8o8OxYJz3iXf4ta2nLHKWoPwAplTq-skJLbE2AG9kSLyq8C_AxWlPHYZoelKVCPDfUVOoXZ9JDvu2-Ak/s1600/closet_2.jpg" height="284" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I couldn't back up far enough to take a photo of this corner of the room -- now that corner holds my husband's desk, computer, and basket supplies that were, initially, in our bedroom. We did a little switching around here.</td></tr>
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As you can see from the photos above, we moved a lot of things out of the spare bedroom. But, a lot of my husband's things were in our bedroom, so we simply switched the portable closet for the desk, and his bookshelf with basket supplies for my bookshelf that still has a lot of junk on it.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj07ORNYRVOiSTRRMipfm9FBnCYTMohsFjtCqjSROLPT6mkSabheNHv9g78-TjiBlIgTrvlgs8MQ_pch95KPaEHcT5WPtzyLulbnIHZKPmJSrRuKlO_7Yd12r8ZDHdNXwlALUAkhEEtJC4/s1600/armoir_2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj07ORNYRVOiSTRRMipfm9FBnCYTMohsFjtCqjSROLPT6mkSabheNHv9g78-TjiBlIgTrvlgs8MQ_pch95KPaEHcT5WPtzyLulbnIHZKPmJSrRuKlO_7Yd12r8ZDHdNXwlALUAkhEEtJC4/s1600/armoir_2.jpg" height="284" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This shot shows a LOT of things moved. I still have the rest of the month to go through all the boxes.</td></tr>
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I'm very proud of the images above -- even though I haven't gone through all the boxes yet, I was able to organize the bags and loose items into separate piles to make my task easier.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4v-pzNzCk_HCJJORwhgValEUlhTbD2MqLIhNTH-j8RRL9FTzgBUc9w1g6NEXmVIj8tKvYlFQZrZbbx2i8yvA_hqjKHCyfgQ-nIa30j26czHTrDROwiLwKyYJ85_Yg1IYhdCPx0MVSUxo/s1600/bookshelf_2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4v-pzNzCk_HCJJORwhgValEUlhTbD2MqLIhNTH-j8RRL9FTzgBUc9w1g6NEXmVIj8tKvYlFQZrZbbx2i8yvA_hqjKHCyfgQ-nIa30j26czHTrDROwiLwKyYJ85_Yg1IYhdCPx0MVSUxo/s1600/bookshelf_2.jpg" height="284" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Uh-oh...I have "stuff" on the top of the bookshelf. I'll move those items this evening.</td></tr>
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All my husband needs to do to get started making baskets again is a table. We've got one -- he just needs to bring it up from the basement. And -- ta-da! This part of the task is done, all in just one week.</div>
Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-89321894261455091152014-11-05T17:23:00.000-05:002014-11-05T18:06:28.449-05:0030-Day Organization Challenge, or How I'm Dealing with "Stuff"<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH7d1K2jNkWAdiYqJTP5UMjoTwkB-hyTNFkVHMFUU8ByN5F_-V2OhX_LeBDZhuEnDcheWxI9TbV1fvmE8Og72rCqGvQhs0QrajH0Y7nVgsxRgM7-7PhMJO2hPpMm2OsQK7ZSSCxsihygc/s1600/window.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH7d1K2jNkWAdiYqJTP5UMjoTwkB-hyTNFkVHMFUU8ByN5F_-V2OhX_LeBDZhuEnDcheWxI9TbV1fvmE8Og72rCqGvQhs0QrajH0Y7nVgsxRgM7-7PhMJO2hPpMm2OsQK7ZSSCxsihygc/s1600/window.jpg" height="179" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One corner of the room -- and this was after I had already moved some boxes.</td></tr>
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Caregiving.com started a <a href="http://www.caregiving.com/forums/forum/30-day-organization-challenge/">30-Day Organization Challenge</a> for members on November 1. Denise is providing daily prompts for folks who want to follow along and spend 15 minutes per day organizing a purse, a mud room, bills and receipts (which would take me three months alone!), or under the kitchen sink. Members also have a choice to pick another project to organize. Since I knew I'd spend more than 15 minutes per day on most of the prompts, I decided instead to tackle one large project.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgotQtlaspjfPN2SfYJ2rTnIAJ3xMgSe8E3TAVArl7W6FhpIrHpGlyOgD5WpVOx0V44GSoCfdg0J_ennA3aPwkV5NbxovwFV6ICD1j3-D_YseduAUxZe-reA4iDU7KWDcd81ksALEV8GQc/s1600/closet.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgotQtlaspjfPN2SfYJ2rTnIAJ3xMgSe8E3TAVArl7W6FhpIrHpGlyOgD5WpVOx0V44GSoCfdg0J_ennA3aPwkV5NbxovwFV6ICD1j3-D_YseduAUxZe-reA4iDU7KWDcd81ksALEV8GQc/s1600/closet.jpg" height="320" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I couldn't move far enough into the room to capture the entire mess in one corner.</td></tr>
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Since we're trying to work together on projects, I approached my husband about this organization challenge. He makes beautiful hand-made baskets and he could bring in income with these baskets if he had a larger space to work with. For the past two years he was stuffed into a corner of our bedroom, with no room to work at all.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDJYX0EHKE-bsZjmg-vL_UnqGBXYWMUL_eFw4WRPU_wKJ6MbywL3meWVztzNyD9ZAxM9Vo06QT2JR021S98ellnHBfdYI4k0Dp4fIqlbFGaMR0gOrIRLZiXNsIp2QMmTDpCiR-t2LiSY4/s1600/armoir.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDJYX0EHKE-bsZjmg-vL_UnqGBXYWMUL_eFw4WRPU_wKJ6MbywL3meWVztzNyD9ZAxM9Vo06QT2JR021S98ellnHBfdYI4k0Dp4fIqlbFGaMR0gOrIRLZiXNsIp2QMmTDpCiR-t2LiSY4/s1600/armoir.jpg" height="320" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The chifferobe? It's for sale (local only)!</td></tr>
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I suggested that we clean out the 'spare' bedroom that isn't a bedroom at all. As you can see from the photos, this room is a catch-all for my clothes as well as for my mother's things that I'm salvaging from my parents' home. The room was, on day one, so dysfunctional that I couldn't find clothes to wear. For the past five days now -- every day this month -- my husband and I have spent approximately 15 minutes per day moving things back and forth between our bedroom and that spare bedroom. You wouldn't believe the difference already!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR8Eo0BVz0Hju__Y-0lOT7k9XkV0AJZ4nramgrH_jS3AibGUu0R_GppwXtIa5k-ACid7o9weaoyuvG74PhlbC8hDfKbg0ZDAWdeb8EP8u2S28wgpUmW3tv98dM-JSzLlihcV9rZB-oWu4/s1600/bookshelf.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR8Eo0BVz0Hju__Y-0lOT7k9XkV0AJZ4nramgrH_jS3AibGUu0R_GppwXtIa5k-ACid7o9weaoyuvG74PhlbC8hDfKbg0ZDAWdeb8EP8u2S28wgpUmW3tv98dM-JSzLlihcV9rZB-oWu4/s1600/bookshelf.jpg" height="320" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The books are mine -- but most of them will go up for sale on Amazon. That's just one bookshelf out of ten in this house. A little bit of a nutty obsession -- each book I own has a story behind it. The clothes? They belonged to mom. What the heck am I doing with them? I'll figure it out...</td></tr>
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This project could have been a daunting task, but with my husband's help it's coming together quickly. At this point we're just moving things back and forth, though. The task of going through all the boxes and organizing things is going to take the rest of the month, I'm sure.<br />
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I'll post "after" photos when we're done. Then we can tackle the living room, which is almost 1/4 filled with more boxes from the folks' house. Oy.Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-43372604273945855322014-11-02T20:16:00.000-05:002014-11-03T07:49:11.836-05:00When are Support Groups Helpful?<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjen_t84H6bv4PAMRH2RHwomSdYluXyrFuLhuMAFycSJ2_7fzSIOc5OVASJj5iJxL0Xe4fRCT8aN7jcg0kRqvsaUwf07QXIq9bd3qXuJF6uHaU-dQSAmZCHiD9n5NDYlGj3bDMhOhCjTXQ/s1600/breast_cancer.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjen_t84H6bv4PAMRH2RHwomSdYluXyrFuLhuMAFycSJ2_7fzSIOc5OVASJj5iJxL0Xe4fRCT8aN7jcg0kRqvsaUwf07QXIq9bd3qXuJF6uHaU-dQSAmZCHiD9n5NDYlGj3bDMhOhCjTXQ/s1600/breast_cancer.jpg" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">When do you know when to connect with other individuals who share your diagnosis or your situation? It's up to you.</td></tr>
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I found a great cholangiocarcinoma (CC) support group when I was at dad's house last month. The support group is a "closed" group on Facebook, which means that only members can see and respond to messages on that group's page. As far as I can tell, the group consists of patients and caregivers (current and "after care"), although this non-denominational group also welcomes medical professionals and students.<br />
<br />
I never sought out a support group while caregiving mom, because I felt that I was getting the answers I needed from various reliable resources. Also, once I was a full-blown caregiver, I never had time to seek support. I was too busy with mom's appointments, her medications, the tasks we had to schedule (like saline flushes for her <a href="http://contentiouslove.blogspot.com/2014/09/eliminating-jaundice-bile-duct-catheter.html" target="_blank">bile duct catheter</a>), with my own work, and with my own well-being.<br />
<br />
Looking back, I'm not sure I could have tolerated a support group, because I was on a short fuse many times. I did check a few of those groups out, and I wasn't ready. Lighthearted entertainment was not my cup of tea during my tenure, and I sure didn't want to hear about hope when we knew we had no hope with mom's case. I also didn't want to hear about bad news when I knew the news was anything but good for us (some folks will understand this logic!).<br />
<br />
I will say I'm more than ready for the Facebook support group now. Now, I have something to share, especially with newcomers to the group who -- on almost a daily basis -- are reporting a loved one recently diagnosed with stage four CC. I'm learning a lot about this disease from patients who have been exposed to treatments that my mother couldn't tolerate with her physical condition. I'm also learning that patients often know more than their doctors and oncologists about their conditions.<br />
<br />
I'm somewhat sorry that I denied myself the support of a group during my mother's diagnosis and death, but I did share everything with my friends on Facebook. Believe me, I don't know what I would have done without my friends' support. And, at the time, my friends were far more substantial in their support for me than a stranger's support. Now, however...<br />
<br />
I seem to find more support among other caregivers and CC patients than I do among my friends. I don't know why this sea change occurred after mom's death, but I'm sure a lot of this disconnect has to do with my push to finance a space of time to finish my memoir. So commercial! At the same time, I also think that friends have only so much tolerance for death and dying.<br />
<br />
And, it's for that latter reason that I find support groups so attractive these days. There's something about a finite boundary on life that brings out the honesty, support, and love that happens nowhere else but within a support group. In that environment, I feel I can share my tears, inappropriate laughter or comments (and find immediate forgiveness), and fears.<br />
<br />
If you feel you need a support group, seek one out. So many support groups exist for all types of cancers as well as for caregivers. I'm not sure if this link will work for the CC support group at Facebook, but give it a shot: <a href="https://www.facebook.com/groups/CHOLANGIOCARCINOMAsupportGroup">https://www.facebook.com/groups/CHOLANGIOCARCINOMAsupportGroup</a> (if this link doesn't work, please let me know via <a href="https://www.facebook.com/ContentiousLove">Facebook</a>).<br />
<br />
For caregivers, I recommend <a href="http://www.caregiving.com/">Caregiving.com</a>. This is a great space for folks who are caregivers to spouses, siblings, and friends who suffer from a myriad of physical impairments. Denise will probably meet you at the door. Please tell her I sent you!Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-39246503365891504102014-11-02T20:15:00.000-05:002014-11-02T20:49:22.645-05:00Contest!<div dir="ltr" style="text-align: left;" trbidi="on">
Friday marks the beginning of a new phase in my project campaign. This time YOU can receive monetary benefits from a merit-based referral contest. This contest is designed to increase contributions to my project, and you can also win a gift credit card to use as you wish.<br />
<ol style="text-align: left;">
<li>I'll provide one $100 VISA card to the person who brings in the most contributors to my campaign at any level, no matter the dollar amount. For instance, if you have 500 contributors at $1, you could win this prize for your efforts.</li>
<li>I'll provide a second $100 gift credit VISA card to the person who brings in the highest dollar amount, no matter the number of contributors. For instance, if you bring in one contributor at $1,000, you could win this prize for your efforts.</li>
<li>Finally, I'll provide a $50 gift credit card to the person who brings in the the most referrals, period. You deserve a prize for working so hard! For instance, if you bring in 550 referrals, but none of them contribute, you can still obtain this card</li>
</ol>
To learn more, visit the <b><a href="http://contentiouslove.blogspot.com/p/tomorrow-marks-beginning-of-new-phase.html" target="_blank">Contest Page</a></b> on this blog (listed in right-hand column). NOTE: Only one prize per person, so at least three people must compete for all prizes to be awarded for your efforts.</div>
Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-15119530154851616712014-11-01T14:19:00.000-04:002014-11-01T14:22:55.079-04:00Still Time to Compete...<span style="background-color: white; color: #666666; font-family: 'Trebuchet MS', Trebuchet, Verdana, sans-serif; font-size: 13.63636302948px; line-height: 16.7999992370605px;">This is a screenshot of the leader board on the dashboard on Saturday at 2pm. I didn't post on Friday, because it appeared nothing has changed over the past week except a few names and the fact that I brought in more money (and I'm not competing). So, you still have plenty of time to sign up and gain interest -- </span><b style="background-color: white; color: #666666; font-family: 'Trebuchet MS', Trebuchet, Verdana, sans-serif; font-size: 13.63636302948px; line-height: 16.7999992370605px;"><a href="http://contentiouslove.blogspot.com/p/tomorrow-marks-beginning-of-new-phase.html" style="color: #888888; text-decoration: none;" target="_blank">view the referral contest information</a></b><span style="background-color: white; color: #666666; font-family: 'Trebuchet MS', Trebuchet, Verdana, sans-serif; font-size: 13.63636302948px; line-height: 16.7999992370605px;"> and follow the rules to win by November 24th.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzgmynm82l8eRuw_3QoRQsb-05hGvYfpaSJwJwES9kXtovfnC-waombBejJyD1U7vfJLSreT5eXkqHE60BFA_szQFnuwNHhH3G29ZunYguQvWeZB1mtEvl07BgNioYZui9PonQPlDjAKc/s1600/leaderboard_2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzgmynm82l8eRuw_3QoRQsb-05hGvYfpaSJwJwES9kXtovfnC-waombBejJyD1U7vfJLSreT5eXkqHE60BFA_szQFnuwNHhH3G29ZunYguQvWeZB1mtEvl07BgNioYZui9PonQPlDjAKc/s1600/leaderboard_2.jpg" height="320" width="291" /></a></div>
<span style="background-color: white; color: #666666; font-family: 'Trebuchet MS', Trebuchet, Verdana, sans-serif; font-size: 13.63636302948px; line-height: 16.7999992370605px;"><br /></span>Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-8403541310513923052014-10-29T09:32:00.002-04:002014-10-29T09:32:50.007-04:00Memoir Progress Update<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://i1.wp.com/www.caregiving.com/wp-content/uploads/2014/10/garden.jpg?resize=288%2C288" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://i1.wp.com/www.caregiving.com/wp-content/uploads/2014/10/garden.jpg?resize=288%2C288" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><div class="wp-caption alignright" id="attachment_68866" style="background-color: white; border: 0px; color: #444444; float: right; font-family: 'Open Sans', Helvetica, Arial, sans-serif; font-size: 12px; line-height: 18px; margin: 0px; max-width: 100%; padding: 0.3333em; text-align: left; vertical-align: baseline; width: 298px;">
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One rebuilt garden bed with new mulch!</div>
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<div style="text-align: left;">
The support I've received for this project so far has been wonderful. As of this writing, 43 individuals provided $1,184. This is enough money for me to pay expenses incurred during this campaign, to pay for an editor, and to pay for two days at a four-day poetry retreat in November with the <b><a href="http://www.greenriverwriters.org/" target="_blank">Green River Writers</a></b> to edit a few poems that are going into the memoir. I plan to get a lot done in those two days.</div>
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Next up -- paying for a month or two in seclusion to finish the memoir. Just to be perfectly clear, this time does not exclude regular work for clients. Instead, it is to finance travel to one of several writers' retreats (if I'm chosen), or to pay for a getaway from the chaos at home to have quiet time to finish my research and writing. My family WANTS me to leave to finish this project, so help them out! =)<br />
<br />
In other news:<br />
<br />
<ul>
<li>This is my last week at dad's house. I've finished weeding and separating the flowers in mom's garden beds (all ten of them), weeded along the fence and around the trees, and had mulch delivered for the front beds. The mulch for the back beds is arriving after I leave. I used mom's new garden gloves that she purchased before she died and never used, and I poked holes in the ends of the fingers. Dad said, "I'm sure she won't mind." Despite my initial fears over tackling my mother's gardens, I think I did fine by her.</li>
<li>Packing to return home includes items from around the house that dad wants me to sell. I have to put on my "impersonal" persona when conducting this work, because I feel as though I'm selling memories. On the other hand, it feels great to downsize, and I'm conducting this activity on the homefront as well so I can relieve my daughter from this task upon my death. I never realized I inherited my "hoarder gene" from mom. I've learned since mom's death how to hide that hoarding (in drawers, closets, and the attic!). I'll post more items to my Etsy shop (<b><a href="https://www.etsy.com/shop/GoinOriginals" target="_blank">GoinOriginals</a></b>) next week. Sending a "thank you" to my new customers at that venue!</li>
<li>It appears no one has really taken me up on the <b><a href="http://contentiouslove.blogspot.com/p/tomorrow-marks-beginning-of-new-phase.html" target="_blank">contest challenge</a></b> yet. Too bad! But, there's still time to compete (until November 24th!).</li>
<li>It appears that folks are taking me up on my $1 birthday wish challenge at the <b><a href="https://www.indiegogo.com/projects/cancer-caregiving-contentious-love/x/8601022" target="_blank">Cancer, Caregiving, Contentious Love Indiegogo site</a></b>! Wonderful! Those dollar bills add up! (hint for those who want to compete in the previously mentioned challenge -- I'm trying to help you!)</li>
<li>Thanks again to Denise at Caregiving.com for offering a new space to blog about my caregiving adventures with dad. Latest post: <b><a href="http://www.caregiving.com/2014/10/my-fears-about-leaving-dad-alone/" target="_blank">My Fears About Leaving Dad Alone</a></b>.</li>
</ul>
<br />
Since I'm busy packing and traveling over the next two days, I won't be posting anything here until Friday. Be good, take care, and be happy if you can. <3</div>
Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-62340004079051046092014-10-25T00:08:00.000-04:002014-10-25T00:08:18.331-04:00Initial Referral Contest Leader BoardThis is a screenshot of the leader board on the dashboard at 12:01 a.m. (yes, I was one minute late due to slow Internet issues). I'll post the leader board again on Friday, October 31 in the morning. You have plenty of time to sign up and gain interest -- <b><a href="http://contentiouslove.blogspot.com/p/tomorrow-marks-beginning-of-new-phase.html" target="_blank">view the referral contest information</a></b> and follow the rules to win!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinSZ71apg8m4jcusoUMHmEnZCqNlNKcpqn03rtPxQwujJuEU1WfFWcVwxzT6TkG035Se6jBAGIUALk3DkPw6HgHUWVLvmWlkgdbEeQcWm2ESJvJqg7nXWdAVoGwbLS94f8Mr550x0gQgc/s1600/leaderboard_1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinSZ71apg8m4jcusoUMHmEnZCqNlNKcpqn03rtPxQwujJuEU1WfFWcVwxzT6TkG035Se6jBAGIUALk3DkPw6HgHUWVLvmWlkgdbEeQcWm2ESJvJqg7nXWdAVoGwbLS94f8Mr550x0gQgc/s1600/leaderboard_1.jpg" height="320" width="310" /></a></div>
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PS -- I'm not a contestant. =)</div>
<br />Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-57415203431577100232014-10-23T11:03:00.000-04:002014-10-23T12:13:40.626-04:00Some People Who Support the Arts<div dir="ltr" style="text-align: left;" trbidi="on">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-OwR-dqJiRJzZSRCOg1U5YN_nN_vb6M_EJv5vHJ7trMBnrAmb63S62sTjeiNrhalBFdsYnLeQRVMXQaKvpmx0dWPxF7nPub8dOQdWmVZvs0_VVbCW7aeUi9GzEWzNJ-pJxJkoHM4q4Uw/s1600/297442_2337483768330_1760240073_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-OwR-dqJiRJzZSRCOg1U5YN_nN_vb6M_EJv5vHJ7trMBnrAmb63S62sTjeiNrhalBFdsYnLeQRVMXQaKvpmx0dWPxF7nPub8dOQdWmVZvs0_VVbCW7aeUi9GzEWzNJ-pJxJkoHM4q4Uw/s1600/297442_2337483768330_1760240073_n.jpg" height="320" width="222" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm also a fine artist; but my writing is, at the moment, far more important to me, because I feel I have a story to share that can help other caregivers. I created this oil pastel in 2007 after a visit to the Bahamas as a professor's assistant for an archaeology project on San Salvador.</td></tr>
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It's time to catch up on all the thank you notes for folks who have supported my Indiegogo project since October 13th. I look at Indiegogo fundraisers that bring in thousands of dollars, and I realize that they're for tech products. Then, I look at Indiegogo fundraisers for the arts, and we all lag behind those tech products by thousands of dollars. Therefore, I'm so <i>very </i>grateful to the individuals listed below, because they see value in my ability to tell a story. They are investing in my art -- that art of memoir.<br />
<br />
<ul style="text-align: left;">
<li>I'm grateful to my film/documentary maker friend, Jacques Laurent. I met Jacques when he arrived in La Grange from France to film the trains that run through the town. We have been friends since, and I'm grateful that he's my first overseas supporter! (I have supporters in Canada, too -- not forgetting you! <3).</li>
<li>I'm grateful to the anonymous donor who decided to support me in a huge way. Much love and many, many <3!</li>
<li>I'm grateful for Amy Wellborn's support. This <b><a href="http://www.paintingsbyamywelborn.com/" target="_blank">fine artist</a></b> thanked me in person one day for my gratitude lists. I was overwhelmed, because it's rare that someone in this world will make time to thank someone in person. I'm guilty of that same lack of support for some of my friends. Love you, Amy!</li>
<li>I'm so grateful to Kristi Weber, who will always be one of my favorite poets. We met in April this year during Robert Lee Brewer's Poem-A-Day challenge, and I remain sufficiently charmed by her attitude, perspective, and downright solidness in being herself. She supported me the day after she learned she finally had a job -- now, that's digging deep. <3 to you, Kristi.</li>
<li>Gratitude to my long-time friend Sharon Jones -- an artist I met when living down south -- for her support. She could have bought me a rum and coke, but chose instead to support my art. Big thanks! =)</li>
<li>So grateful to Ursula Powers for her support. We've known each other since the BP Gulf Oil disaster, where we tweeted against BP. Power to the people, especially through the family business, <b><a href="https://www.facebook.com/albeesnevadahoney" target="_blank">Al's Bees</a></b>!</li>
<li>Thanks to my buddy, Joe Davenport, for wanting so badly to push me to that $1K mark that he donated twice! You're a winner, Joe. Thanks for your support!</li>
</ul>
<br />
I also want to thank Denise at <b><a href="http://www.caregiving.com/">Caregiving.com</a></b> for personally welcoming me into her space and offering a new channel to blog. This time, I'm blogging about the switch from being caregiver for my mother to realizing that I'm now my dad's caregiver (thanks to Denise's insight). Denise is a bright and energetic soul who is sincerely interested in all her Caregiving members. My blog, <b><a href="http://www.caregiving.com/articles/blogged/caringforparents/lindas-blog/" target="_blank">Linda's Blog</a></b>, is located under "Caregiving for Parents."<br />
<br />
Many thanks, too, to Mary Beth at Caregivers for Home. She approached me via Twitter to ask if she could write about my experience and memoir, and then asked if I would write a guest blog. Well, yes! Mary Beth's article is <b><a href="http://www.caregiversforhome.com/when-doctors-rx-is-no-hope-a-caregivers-journey/" target="_blank">When Doctor’s RX is: No Hope, A Caregiver’s Journey</a></b>. My article, which broaches a topic that I had to write about sooner or later. Yes, I shared this story with my husband before it was published -- <b><a href="http://www.caregiversforhome.com/marriage-and-caregiving-letting-go/" target="_blank">Marriage and Caregiving: Letting Go, A Daughter’s Story</a>.</b><br />
<br />
So grateful to be meeting new friends and supporters in my quest to fund my art and I'm grateful to friends who have stepped up to share. If you want to fund my memoir as well, you can contribute as little as $1 or as much as you want at <b><a href="https://www.indiegogo.com/projects/cancer-caregiving-contentious-love/x/8601022" target="_blank">Cancer, Caregiving, and Contentious Love's Indiegogo campaign</a></b>. A heads up on Friday -- YOU can win money by helping to spread my campaign through linkage. Learn more about my <b><a href="http://contentiouslove.blogspot.com/p/tomorrow-marks-beginning-of-new-phase.html" target="_blank">Referral Contest</a></b> and, if you have questions, feel free to contact me through <b><a href="https://twitter.com/GoinLinda" target="_blank">Twitter</a></b> or <b><a href="https://www.facebook.com/ContentiousLove" target="_blank">Facebook</a></b>. </div>
Anonymoushttp://www.blogger.com/profile/00381071407583194092noreply@blogger.com0tag:blogger.com,1999:blog-2714539612346471994.post-64084123327249817712014-10-20T09:27:00.000-04:002014-10-20T09:27:00.762-04:00How Bile Duct Cancer Begins...<div dir="ltr" style="text-align: left;" trbidi="on">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZm_YRiVSTik4LgUvjouQdpHslV9Id3Fs17CWvakT0CcRRgOO2FyvJP9L9PM4rV8pfx8mCP8NxfyvQtHMoyTTOpX3MKml8ptMZGBQkRZ2V2w_JuJOvLgXZ-wNuGdXS0reZCEWHQ92Ztfk/s1600/Elizabeth_L_Eanes_1954.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZm_YRiVSTik4LgUvjouQdpHslV9Id3Fs17CWvakT0CcRRgOO2FyvJP9L9PM4rV8pfx8mCP8NxfyvQtHMoyTTOpX3MKml8ptMZGBQkRZ2V2w_JuJOvLgXZ-wNuGdXS0reZCEWHQ92Ztfk/s1600/Elizabeth_L_Eanes_1954.jpg" height="287" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My mother's mother in 1954. She died from liver complications in 1969. Did my mother inherit mutated genes from her mother? Doubtful, but mom did inherit some issues that complicated her disease.</td></tr>
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Now that my frantic caregiving chores for mom are over, I've been concentrating on how her cholangiocarcinoma occurred. My mother's age contributed to her risk factor. More than two out of three patients diagnosed with cholangiocarcinoma are older
than age 65, and my mother was 78 when she was diagnosed. But lately I've been viewing more news on younger deaths from this cancer.<br />
<br />
Cancer usually results from gene mutation, and sometimes this proclivity to certain mutations is inherited. Gene mutations related to bile duct cancers, however, usually are acquired during a lifetime rather than inherited. What changes during a lifetime could contribute to bile duct cancer?<br />
<br />
<ul style="text-align: left;">
<li>Liver fluke (parasitic flatworm) infections that settle in the bile duct and cause irritation is a major cause of bile duct cancer in Asia, but very rare in the U.S. It can affect people who travel to Asia and who eat raw or poorly cooked fish in that region.</li>
<li>Bile duct infections or inflammation (cholangitis) can lead to scar tissue (sclerosis), which can create a risk for cholangiocarcinoma. Many people who have this disease (Primary sclerosing cholangitis or PSC) also may have issues with ulcerative colitis. Risk factors for progression of any of the issues to bile duct cancer can be as high as 30 percent.</li>
<li>Bile-filled sacs connected to the bile duct are called choledochal cysts. The cells in these cysts, as with cysts in other parts of the body, can contain areas of pre-cancerous changes.</li>
<li>People who are born with, or who develop, abnormalities where the bile and pancreatic ducts meet can be at higher risk for bile duct cancer. This abnormality can prevent bile from exiting the ducts normally, and that condition can prove deadly.</li>
<li>Cirrhosis of the liver, caused by alcohol excess or diseases such as hepatitis, can create scar tissue that can affect the bile duct and lead to #2. Liver diseases and subsequent scar tissues can contribute up to 15 percent of bile duct cancers.</li>
<li>Exposure to certain industry chemicals and PCBs can also lead to possible bile duct cancer.</li>
<li>Thorotrast, a contrast agent that radiologists no longer used in x-rays, is a huge culprit in cholangiocarcinoma cases in individuals who are old enough to have had x-rays through the mid-1950s. The connection between the ingestion of Thorotrast and bile duct cancer can be up to 100 percent.</li>
</ul>
Some medical facilities and cancer institutions list other causes, including obesity, exposure to asbestos, smoking, exposure to radon, and diabetes. All these factors often contribute to liver damage and then scarring and damage to bile ducts. Is there a way to determine if you are at risk for bile duct cancer? Yes -- if you know that you are subject to any of the conditions listed above.<br />
<br />
Can this cancer be detected early? According to the <a href="http://www.cancer.org/cancer/bileductcancer/detailedguide/bile-duct-cancer-detection" target="_blank">American Cancer Society</a>, the answer is no.<br />
<blockquote class="tr_bq">
The bile duct is located deep inside the body, so early tumors cannot be
seen or felt by health care providers during routine physical exams.
There are currently no blood tests or other tests that can reliably
detect bile duct cancers early enough to be useful as screening tests.
Without effective screening tests, most bile duct cancers are found only
when the cancer has grown enough to cause symptoms. The most common
symptom is jaundice, a yellowing of the skin and eyes, which is caused
by a blocked bile duct.</blockquote>
From experience, I can tell you that the jaundice is a symptom, but it's also an alarm. It's the alarm that starts the race to the end of the cancer patient's life. How much time will that patient have? Anywhere from three months to 18 months, depending upon a number of factors including new procedures that can extend that patient's life.<br />
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But, that's another story...<br />
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