tag:blogger.com,1999:blog-69510275848347252362024-03-01T23:50:16.242-08:00Toom-ah? What Stinkin' Toom-ah!A Brain Tumor BlogUnknownnoreply@blogger.comBlogger880125tag:blogger.com,1999:blog-6951027584834725236.post-27910236088848268872023-01-12T09:41:00.001-08:002023-01-12T09:41:22.199-08:00A Few More Steps<p> </p><blockquote class="instagram-media" data-instgrm-captioned data-instgrm-permalink="https://www.instagram.com/p/CnTZw5-LTd-/?utm_source=ig_embed&utm_campaign=loading" data-instgrm-version="14" style=" background:#FFF; border:0; border-radius:3px; box-shadow:0 0 1px 0 rgba(0,0,0,0.5),0 1px 10px 0 rgba(0,0,0,0.15); margin: 1px; max-width:540px; min-width:326px; padding:0; width:99.375%; width:-webkit-calc(100% - 2px); width:calc(100% - 2px);"><div style="padding:16px;"> <a href="https://www.instagram.com/p/CnTZw5-LTd-/?utm_source=ig_embed&utm_campaign=loading" style=" background:#FFFFFF; line-height:0; padding:0 0; text-align:center; text-decoration:none; width:100%;" target="_blank"> <div style=" display: flex; flex-direction: row; align-items: center;"> <div style="background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;"></div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center;"> <div style=" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;"></div> <div style=" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;"></div></div></div><div style="padding: 19% 0;"></div> <div style="display:block; height:50px; margin:0 auto 12px; width:50px;"><svg width="50px" height="50px" viewBox="0 0 60 60" version="1.1" xmlns="https://www.w3.org/2000/svg" xmlns:xlink="https://www.w3.org/1999/xlink"><g stroke="none" stroke-width="1" fill="none" fill-rule="evenodd"><g transform="translate(-511.000000, -20.000000)" fill="#000000"><g><path d="M556.869,30.41 C554.814,30.41 553.148,32.076 553.148,34.131 C553.148,36.186 554.814,37.852 556.869,37.852 C558.924,37.852 560.59,36.186 560.59,34.131 C560.59,32.076 558.924,30.41 556.869,30.41 M541,60.657 C535.114,60.657 530.342,55.887 530.342,50 C530.342,44.114 535.114,39.342 541,39.342 C546.887,39.342 551.658,44.114 551.658,50 C551.658,55.887 546.887,60.657 541,60.657 M541,33.886 C532.1,33.886 524.886,41.1 524.886,50 C524.886,58.899 532.1,66.113 541,66.113 C549.9,66.113 557.115,58.899 557.115,50 C557.115,41.1 549.9,33.886 541,33.886 M565.378,62.101 C565.244,65.022 564.756,66.606 564.346,67.663 C563.803,69.06 563.154,70.057 562.106,71.106 C561.058,72.155 560.06,72.803 558.662,73.347 C557.607,73.757 556.021,74.244 553.102,74.378 C549.944,74.521 548.997,74.552 541,74.552 C533.003,74.552 532.056,74.521 528.898,74.378 C525.979,74.244 524.393,73.757 523.338,73.347 C521.94,72.803 520.942,72.155 519.894,71.106 C518.846,70.057 518.197,69.06 517.654,67.663 C517.244,66.606 516.755,65.022 516.623,62.101 C516.479,58.943 516.448,57.996 516.448,50 C516.448,42.003 516.479,41.056 516.623,37.899 C516.755,34.978 517.244,33.391 517.654,32.338 C518.197,30.938 518.846,29.942 519.894,28.894 C520.942,27.846 521.94,27.196 523.338,26.654 C524.393,26.244 525.979,25.756 528.898,25.623 C532.057,25.479 533.004,25.448 541,25.448 C548.997,25.448 549.943,25.479 553.102,25.623 C556.021,25.756 557.607,26.244 558.662,26.654 C560.06,27.196 561.058,27.846 562.106,28.894 C563.154,29.942 563.803,30.938 564.346,32.338 C564.756,33.391 565.244,34.978 565.378,37.899 C565.522,41.056 565.552,42.003 565.552,50 C565.552,57.996 565.522,58.943 565.378,62.101 M570.82,37.631 C570.674,34.438 570.167,32.258 569.425,30.349 C568.659,28.377 567.633,26.702 565.965,25.035 C564.297,23.368 562.623,22.342 560.652,21.575 C558.743,20.834 556.562,20.326 553.369,20.18 C550.169,20.033 549.148,20 541,20 C532.853,20 531.831,20.033 528.631,20.18 C525.438,20.326 523.257,20.834 521.349,21.575 C519.376,22.342 517.703,23.368 516.035,25.035 C514.368,26.702 513.342,28.377 512.574,30.349 C511.834,32.258 511.326,34.438 511.181,37.631 C511.035,40.831 511,41.851 511,50 C511,58.147 511.035,59.17 511.181,62.369 C511.326,65.562 511.834,67.743 512.574,69.651 C513.342,71.625 514.368,73.296 516.035,74.965 C517.703,76.634 519.376,77.658 521.349,78.425 C523.257,79.167 525.438,79.673 528.631,79.82 C531.831,79.965 532.853,80.001 541,80.001 C549.148,80.001 550.169,79.965 553.369,79.82 C556.562,79.673 558.743,79.167 560.652,78.425 C562.623,77.658 564.297,76.634 565.965,74.965 C567.633,73.296 568.659,71.625 569.425,69.651 C570.167,67.743 570.674,65.562 570.82,62.369 C570.966,59.17 571,58.147 571,50 C571,41.851 570.966,40.831 570.82,37.631"></path></g></g></g></svg></div><div style="padding-top: 8px;"> <div style=" color:#3897f0; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:550; line-height:18px;">View this post on Instagram</div></div><div style="padding: 12.5% 0;"></div> <div style="display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;"><div> <div style="background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);"></div> <div style="background-color: #F4F4F4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;"></div> <div style="background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);"></div></div><div style="margin-left: 8px;"> <div style=" background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;"></div> <div style=" width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg)"></div></div><div style="margin-left: auto;"> <div style=" width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);"></div> <div style=" background-color: #F4F4F4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);"></div> <div style=" width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);"></div></div></div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center; margin-bottom: 24px;"> <div style=" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 224px;"></div> <div style=" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; width: 144px;"></div></div></a><p style=" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; line-height:17px; margin-bottom:0; margin-top:8px; overflow:hidden; padding:8px 0 7px; text-align:center; text-overflow:ellipsis; white-space:nowrap;"><a href="https://www.instagram.com/p/CnTZw5-LTd-/?utm_source=ig_embed&utm_campaign=loading" style=" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:normal; line-height:17px; text-decoration:none;" target="_blank">A post shared by Jessica Oldwyn (@jessica_oldwyn)</a></p></div></blockquote> <script async src="//www.instagram.com/embed.js"></script>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-6951027584834725236.post-68326689827043161402023-01-12T09:24:00.002-08:002023-01-12T09:36:21.750-08:00Toot Tooting into 2023<p><br />This is a lazy way to update the blog by posting my Instagram post. I just want anyone who comes to the blog to know that I'm still here. If a person writes a comment on the blog it goes straight to my email. Other ways to check in are Instagram (clearly), which directly posts to my Facebook account. Apparently, I have 2 Facebook accounts, which can't be merged - bummer - so I don't even really know how to navigate that. </p><p>Anyway, thank you for checking in! </p><blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/Cm51KBBO9j-/?utm_source=ig_embed&utm_campaign=loading" data-instgrm-version="14" style="background-color: white; background: #FFF; border-radius: 3px; border: 0px; box-shadow: rgba(0, 0, 0, 0.5) 0px 0px 1px 0px, rgba(0, 0, 0, 0.15) 0px 1px 10px 0px; margin: 1px; max-width: 540px; min-width: 326px; padding: 0px; width: calc(100% - 2px);"><div style="padding: 16px;"><a href="https://www.instagram.com/p/Cm51KBBO9j-/?utm_source=ig_embed&utm_campaign=loading" style="background-color: white; background: #FFFFFF; line-height: 0; padding: 0px; text-align: center; text-decoration: none; width: 100%;" target="_blank"><div style="align-items: center; display: flex; flex-direction: row;"><div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;"></div></div></div><div style="padding: 19% 0px;"></div> <div style="display: block; height: 50px; margin: 0px auto 12px; width: 50px;"><svg height="50px" version="1.1" viewbox="0 0 60 60" width="50px" xmlns:xlink="https://www.w3.org/1999/xlink" xmlns="https://www.w3.org/2000/svg"><g fill-rule="evenodd" fill="none" stroke-width="1" stroke="none"><g fill="#000000" transform="translate(-511.000000, -20.000000)"><g><path d="M556.869,30.41 C554.814,30.41 553.148,32.076 553.148,34.131 C553.148,36.186 554.814,37.852 556.869,37.852 C558.924,37.852 560.59,36.186 560.59,34.131 C560.59,32.076 558.924,30.41 556.869,30.41 M541,60.657 C535.114,60.657 530.342,55.887 530.342,50 C530.342,44.114 535.114,39.342 541,39.342 C546.887,39.342 551.658,44.114 551.658,50 C551.658,55.887 546.887,60.657 541,60.657 M541,33.886 C532.1,33.886 524.886,41.1 524.886,50 C524.886,58.899 532.1,66.113 541,66.113 C549.9,66.113 557.115,58.899 557.115,50 C557.115,41.1 549.9,33.886 541,33.886 M565.378,62.101 C565.244,65.022 564.756,66.606 564.346,67.663 C563.803,69.06 563.154,70.057 562.106,71.106 C561.058,72.155 560.06,72.803 558.662,73.347 C557.607,73.757 556.021,74.244 553.102,74.378 C549.944,74.521 548.997,74.552 541,74.552 C533.003,74.552 532.056,74.521 528.898,74.378 C525.979,74.244 524.393,73.757 523.338,73.347 C521.94,72.803 520.942,72.155 519.894,71.106 C518.846,70.057 518.197,69.06 517.654,67.663 C517.244,66.606 516.755,65.022 516.623,62.101 C516.479,58.943 516.448,57.996 516.448,50 C516.448,42.003 516.479,41.056 516.623,37.899 C516.755,34.978 517.244,33.391 517.654,32.338 C518.197,30.938 518.846,29.942 519.894,28.894 C520.942,27.846 521.94,27.196 523.338,26.654 C524.393,26.244 525.979,25.756 528.898,25.623 C532.057,25.479 533.004,25.448 541,25.448 C548.997,25.448 549.943,25.479 553.102,25.623 C556.021,25.756 557.607,26.244 558.662,26.654 C560.06,27.196 561.058,27.846 562.106,28.894 C563.154,29.942 563.803,30.938 564.346,32.338 C564.756,33.391 565.244,34.978 565.378,37.899 C565.522,41.056 565.552,42.003 565.552,50 C565.552,57.996 565.522,58.943 565.378,62.101 M570.82,37.631 C570.674,34.438 570.167,32.258 569.425,30.349 C568.659,28.377 567.633,26.702 565.965,25.035 C564.297,23.368 562.623,22.342 560.652,21.575 C558.743,20.834 556.562,20.326 553.369,20.18 C550.169,20.033 549.148,20 541,20 C532.853,20 531.831,20.033 528.631,20.18 C525.438,20.326 523.257,20.834 521.349,21.575 C519.376,22.342 517.703,23.368 516.035,25.035 C514.368,26.702 513.342,28.377 512.574,30.349 C511.834,32.258 511.326,34.438 511.181,37.631 C511.035,40.831 511,41.851 511,50 C511,58.147 511.035,59.17 511.181,62.369 C511.326,65.562 511.834,67.743 512.574,69.651 C513.342,71.625 514.368,73.296 516.035,74.965 C517.703,76.634 519.376,77.658 521.349,78.425 C523.257,79.167 525.438,79.673 528.631,79.82 C531.831,79.965 532.853,80.001 541,80.001 C549.148,80.001 550.169,79.965 553.369,79.82 C556.562,79.673 558.743,79.167 560.652,78.425 C562.623,77.658 564.297,76.634 565.965,74.965 C567.633,73.296 568.659,71.625 569.425,69.651 C570.167,67.743 570.674,65.562 570.82,62.369 C570.966,59.17 571,58.147 571,50 C571,41.851 570.966,40.831 570.82,37.631"></path></g></g></g></svg></div><div style="padding-top: 8px;"> <div style="color: #3897f0; font-family: Arial, sans-serif; font-size: 14px; font-style: normal; font-weight: 550; line-height: 18px;">View this post on Instagram</div></div><div style="padding: 12.5% 0px;"></div> <div style="align-items: center; display: flex; flex-direction: row; margin-bottom: 14px;"><div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; transform: translateX(0px) translateY(7px); width: 12.5px;"></div> <div style="background-color: #f4f4f4; flex-grow: 0; height: 12.5px; margin-left: 2px; margin-right: 14px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px;"></div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; transform: translateX(9px) translateY(-18px); width: 12.5px;"></div></div><div style="margin-left: 8px;"> <div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;"></div> <div style="border-bottom-color: transparent; border-bottom-style: solid; border-bottom-width: 2px; border-bottom: 2px solid transparent; border-left-color: rgb(244, 244, 244); border-left-style: solid; border-left-width: 6px; border-left: 6px solid #f4f4f4; border-top-color: transparent; border-top-style: solid; border-top-width: 2px; border-top: 2px solid transparent; height: 0px; transform: translateX(16px) translateY(-4px) rotate(30deg); width: 0px;"></div></div><div style="margin-left: auto;"> <div style="border-right-color: transparent; border-right-style: solid; border-right-width: 8px; border-right: 8px solid transparent; border-top-color: rgb(244, 244, 244); border-top-style: solid; border-top-width: 8px; border-top: 8px solid #F4F4F4; transform: translateY(16px); width: 0px;"></div> <div style="background-color: #f4f4f4; flex-grow: 0; height: 12px; transform: translateY(-4px); width: 16px;"></div> <div style="border-left-color: transparent; border-left-style: solid; border-left-width: 8px; border-left: 8px solid transparent; border-top-color: rgb(244, 244, 244); border-top-style: solid; border-top-width: 8px; border-top: 8px solid #F4F4F4; height: 0px; transform: translateY(-4px) translateX(8px); width: 0px;"></div></div></div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center; margin-bottom: 24px;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 224px;"></div> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 144px;"></div></div></a><p style="color: #c9c8cd; font-family: Arial, sans-serif; font-size: 14px; line-height: 17px; margin-bottom: 0px; margin-top: 8px; overflow: hidden; padding: 8px 0px 7px; text-align: center; text-overflow: ellipsis; white-space: nowrap;"><a href="https://www.instagram.com/p/Cm51KBBO9j-/?utm_source=ig_embed&utm_campaign=loading" style="color: #c9c8cd; font-family: Arial, sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none;" target="_blank">A post shared by Jessica Oldwyn (@jessica_oldwyn)</a></p></div></blockquote> <script async="" src="//www.instagram.com/embed.js"></script>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6951027584834725236.post-43566930909901314542021-09-12T10:37:00.003-07:002021-09-12T10:54:43.131-07:00Trauma Had Overcome Me<p>For the longest time, I have shoved my feelings, my pain, and my hurt to the deepest recesses of my soul. I stopped blogging because I couldn't fathom being vulnerable anymore. My own mental state was too raw, it had become too fragile, frail, even. </p><p>I would find myself unable to respond to beautiful texts and emails, I physically couldn't budge to lift a finger to type. That doesn't mean that those words, those messages didn't haunt my psyche. I hated myself for feeling paralyzed. I hated that I would panic about my inablilty to respond to so many special, kind, loving souls that just wanted to show me love, but I was trapped in my own suffering. And one day, became the next day, which became months, then what has almost become a year, yet nothing had changed. I couldn't bring myself to respond to any of them. The trauma had overcome me, my pain was a blackness and I couldn't find even a sliver of light.</p><p>I have been sheltering myself from the trauma that I have refused to acknowledge, or feel. My coping mechanism has been to put one foot in front of the other and walk, and clean, and cook, and listen to podcasts and organize, and avoid all of my painful memories. I felt like there was no good way to address the magnitude of the 11 years of fear, stress, the bone saws that split my skull so many times, the pain in my skull that never subsides, the struggles to walk without injuring myself, that I can't see out of the side of one eye, or the numbness of my full right side, the raw ache of constant loss. Or my pathetic attempts of holding a pen, or a fork, or cut with a knife, or spell, or find words up in this messy brain. I try to hide my deficits from others because I'm embarrassed and frustrated. But it's always there, traveling everywhere I go, there is no escape, no reprieve. </p><p>The best (cancer) friends I have bonded with, laughed with, fell in love with their strength, their brilliance, only to watch their bodies wither, holding space for the conversations about their imminent death, the devastation of the loss of their dreams, to watch them struggle to breathe until they die. To watch my ultimate cancer soulmate have her brain get riddled with 10 brain tumors after 11 years of metastatic cancer, the pain, the fear, the defeat. The struggle to find anything that could help, until her body just couldn't function any longer. Then she was just gone. There was nothing I could do. With all of these friends, they just die and I'm left devastated, crushed and often despondent. There is so much anguish, such a loss of camaraderie, of knowingness. With all of their deaths I find myself even further isolated, which pulls me deeper into my mental lair, where I can tuck away my feelings and pretend that I'm not broken. I put on a smile, I become more vague, I brush over any hurt, and then I deflect. </p><p>These 11 years have been a marathon of loss, and I have avoided dealing with the majority of that pain because it doesn't feel good to be sad. I prefer to pivot in uncomfortable situations, to find the good, to put things in a perspective that makes me feel positive, but there has been so much death around me, of best friends, that I stopped being able to find the good. So I shut down and went to the most basic survival mode I could think of. One foot in front of the other. Don't think too deeply. Deflect questions. Downplay my struggles. Hide my pain. Ask people more about them so that I don't have to be vulnerable. Smile. Laugh. </p><p>It worked for several months, maybe even a year or so, but the deep pain has never gone away. In fact, it has just festered, and then I ended up feeling even more isolated because I have a real hard time asking for help, or admitting that I'm struggling. I hate to bring people down, I would rather lift them up, to make them laugh, or bake a loaf of bread for a friend, or lend an ear for what they're going through. But what I've come to realize is that the blog was this beautiful place to express myself, with zero pressure for people to read it. People can read it if they choose, but unlike initiating a conversation with a friend who may or may not be able to support my emotional needs at that time - because face it, we all have a lot of shit going on - perhaps it's time for me to get back to sharing my life for those interested in following along.</p><p>It's scary to come back here, to share my deepest, most vulnerable thoughts, the reality of what's going on with my tumor and my treatments, but I am hoping that this can be what it once was, a gift of connection with others. And a place for my raw uncensored private thoughts, and the nuances of my cancer life.</p><p>I can't say when I'll be able to respond to any messages, or comments, I really don't want to backtrack into anxiety or fear, I want to work toward a healthy relationship with openness. Thank you for all of the patience and graciousness over this quiet time. I am truly blessed with your love and kindness. The fact that anyone even cares to see how I'm doing is a beautiful gift. Thank you. I will read every comment, even if I don't respond. xo</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhj0p4sQI1ogn4bGTPB5hzhRf_UN4zBpdQc7nGgrysmANgJCzDIcdStdM33nJrIFUuwdcaMWipCM4DjEzAloVTZJUNhl9jh5f1kmzlmCcGJep_8_8Bu8jtG8_pFLWpVuakczECxEpXo_AQ/" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="2048" data-original-width="1536" height="492" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhj0p4sQI1ogn4bGTPB5hzhRf_UN4zBpdQc7nGgrysmANgJCzDIcdStdM33nJrIFUuwdcaMWipCM4DjEzAloVTZJUNhl9jh5f1kmzlmCcGJep_8_8Bu8jtG8_pFLWpVuakczECxEpXo_AQ/w369-h492/IMG_3164.jpeg" width="369" /></a></div><br /><p></p><p> </p>Unknownnoreply@blogger.com29tag:blogger.com,1999:blog-6951027584834725236.post-79607499829442381222020-11-09T19:34:00.000-08:002020-11-09T19:34:27.495-08:0011/01/2020 MRI Results<p>I just got my MRI results; they popped up with a "DING" in my cell phone notifications. The scan was over a week ago, and usually it takes much longer for results, so a fast turnaround dropped my heart into my tittle toe. Usually, in the medical world, the faster the results, the more concerning the situation. (Not always, but often in my experience.) </p><p>I've been on an experimental drug, and although it clearly seems to be working, you never know when the ball might drop. I mean, I've had to hustle ever since I was diagnosed, ten years ago, so the idea of something really working is completely foreign. But it truly is working! My tumor has not grown since May of 2019. Call that what you will, but it feels like a freaking miracle!!!</p><p>For the record, I tracked this drug for over 6 years before I could access it. No joke. I have been calling and emailing the drug company to see if they participated in <a href="https://www.cancer.org/treatment/treatments-and-side-effects/clinical-trials/compassionate-drug-use.html" target="_blank">compassionate use</a> yet. I watched it because although it's for a different type of cancer, the drug targets a mutation that I share. I have flown across the country a few times tying to gain access. I have tried to impress doctors, or tried to see if I could get access through mutual connections. I have turned down risky treatments, hoping for access for this safer option. I have been told that I had to do a 5th brain surgery in order to access this drug. I was told that the drug is too expensive ($25,000/mo). Thankfully, all of the hard work, the literal years and years, the doggedness, the fear, the listening to my gut when I was being pressured to tow the medical "line", are paying off. I never know how long the good new will last, but damn if I'm not going to have a glass of champagne tonight, and run in the rain in the morning! </p><p>I'm clearly rusty with my delivery/writing skills, but I wanted to give you an update, and thank everyone for sharing this journey with us. For loving and supporting us. The next MRI will be in January or February. </p><p>I am THRILLED to get the honor - and as cheesy as it is, it is a true honor - to get to be here, and feel sore from a workout, or try a new recipe, or laugh at my dog when she barks in her sleep. </p><p>I still get to be here!!!! I am still here, and life is such a gift.</p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN2rf6fJiGpVZw7VUxSsQT0f5il3J6iMtNtE0UzKkJ9QkAfqmfoK1F7f-G44kgn6HtKYCjdf4JrPiul3XiIWDK1EZrfMyNjcMj5_EHq5Ed4u60NpXC3lfAnV01uCEji8yARlAfKYqCoA/s320/Screenshot+2020-11-09+at+7.18.09+PM.png" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="320" data-original-width="319" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN2rf6fJiGpVZw7VUxSsQT0f5il3J6iMtNtE0UzKkJ9QkAfqmfoK1F7f-G44kgn6HtKYCjdf4JrPiul3XiIWDK1EZrfMyNjcMj5_EHq5Ed4u60NpXC3lfAnV01uCEji8yARlAfKYqCoA/w399-h400/Screenshot+2020-11-09+at+7.18.09+PM.png" title="Early morning walk after the MRI" width="399" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">First patient MRI of the day, then a celebratory lap around Green Lake<br /></td></tr></tbody></table><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUKquRz6M3hjKh4xsaUTGL-2Qc5AP97IyBxYcC4WaVp-TQ6B1ggWrdqkRWbhjB_bArh8rTVcOSXz70J9i5V-uCRjAxxLswWGWrjlhyRd-8W7oVALFbS2RyhgOJ8VOtmJ6BNVKkQlD65Q/s320/Screenshot+2020-11-09+at+7.19.31+PM.png" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="317" data-original-width="320" height="396" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUKquRz6M3hjKh4xsaUTGL-2Qc5AP97IyBxYcC4WaVp-TQ6B1ggWrdqkRWbhjB_bArh8rTVcOSXz70J9i5V-uCRjAxxLswWGWrjlhyRd-8W7oVALFbS2RyhgOJ8VOtmJ6BNVKkQlD65Q/w400-h396/Screenshot+2020-11-09+at+7.19.31+PM.png" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Never had any sort of "cool" factor. (Ha!)</td></tr></tbody></table>Unknownnoreply@blogger.com27tag:blogger.com,1999:blog-6951027584834725236.post-18324740788247105922020-04-13T20:35:00.000-07:002020-04-13T20:51:00.083-07:00My 10 yr Cancer Anniversary <div class="separator" style="clear: both; text-align: center;">
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Today is my 10 year DD (diagnosis day). I know I'm not very good at sharing my health status, or managing my social media, but there is such a beauty, and safety, when you slow your external life. Not much has changed with my health, I'm still navigating cancer, and jumping through health hoops, trying to follow my intuition, and fighting for what I feel is right for me. There have been plenty of scares, disappointments, bad news, and I have turned down several treatments as I continue on this journey. Currently I'm hoping that an experimental drug will keep my tumor at bay.</div>
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I am sorry that I can't be as open as I used to be, but I want you all to know how grateful I am for your kindness, support, and patience over the past 10 years. I remember hoping for 5 years. Then hoping to survive the 4th brain surgery. I truly can not believe that I am sitting here, 10 years after being told that I had a "massive brain tumor" and that the doctor "wasn't sure if I would live."</div>
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Especially today, I keep thinking about how grateful I am to be here on Earth, in this human body, able to smell the spring flowers, to see the little sprouts popping up from our vegetable garden. I can't believe that I'm here - that I'm alive. There is so much wonder and mystery in this human experience, and I get to be here to witness and participate. What a monumental joy!</div>
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Since these are unusual times, with necessary adjustments to daily life, instead of celebrating with friends and family, I woke up at my usual 6 am, wandered toward the kitchen to start the kettle for our French press, expecting to get a few moments with Dan before he would head out for work, but instead, the house was lit by candles, with handmade cards. It was magical, and romantic, and very unexpected. He had taken the day off, to celebrate our life together. To acknowledge the hard work that I (we) have put in, the sacrifices I (we) have made, the memories that we have created, the life that we get to relish in.</div>
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As an immune compromised human, I'm scared of any threat, let alone this pandemic, so I have been in self quarantine since February. I rarely even go for walks because the few times that I've tried, there's inevitably random runners that sweat past me causing great anxiety (valid or not). But, as I was watering our vegetable garden this morning, all of a sudden there were SO many car horns! And as I rounded the corner, I saw a literal parade from my girls in the Edmonds Walking Group (see the video below). Dan barely managed to grab his phone to record part of it. These ladies are angels. I honestly don't know what my life would look like without them. I learn so much from their prospectives. We laugh, they give me a lot to think about, and they're gracious considering I'm opinionated and often naive. They have taken care of our house, and our pets, during brain surgeries. They even mended our garden, mowing the lawn, making everything better. These women treat me as an equal, and help me feel strong and capable even when I feel that I'm not. I love that we take care of each other. And as they paraded by our house, three times in a row, beeping all the way, I laughed gratefully, as my heart continued to mend from all of the hidden pain that I've tried to ignore. </div>
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I don't know why I get to live this fabulous life, but I'm so very grateful!</div>
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Unknownnoreply@blogger.com24tag:blogger.com,1999:blog-6951027584834725236.post-91098927762135624442019-10-27T12:17:00.003-07:002019-10-27T12:17:57.175-07:00Update on Isabel BuesoThank you so much to all of you who have spread the word about my friend Isabel's situation regarding her immigration situation. In fact, there are currently almost 200,000 signatures on her change.org petition! In case you aren't familiar with my sweet friend, here's her episode from the show My Last Days, which is how I met her in the first place. I will also post my episode at the bottom of the page.<br />
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Here's a little update...<br />
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<span class="type-no-wrap type-uppercase type-weak" style="box-sizing: border-box; color: rgb(115 , 114 , 115); text-transform: uppercase; white-space: nowrap;">SEP 12, 2019 — </span></div>
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Isabel went before the House Committee on Oversight and Reform today to tell her story and to continue pushing for Congress to find a solution to protect her life and the lives of thousands of people affected by USCIS’ denial of medical deferred action petitions. Speaking before a panel of Congresspeople, Isabel urged “This is not a partisan issue. This is a humanitarian issue. I ask Congress and the Administration to come together and right the wrong of this change in policy.” <a href="https://oversight.house.gov/legislation/hearings/the-administration-s-apparent-revocation-of-medical-deferred-action-for" rel="nofollow" style="box-sizing: border-box; color: #ec2c22; cursor: pointer; text-decoration-skip: objects;">Watch the full testimony here starting at 28:25.</a></div>
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Our campaign to #SaveIsabel continues to gather momentum and we are gaining the ear of many powerful people on both sides of the aisle in Washington D.C., but we still need your help to make sure that we are able to achieve our goal. Currently, members of the House are working to pass a bill to protect Isabel. We are also hoping to find a path forward that will help all families. In order to make sure we are able to get this legislation through, we ask that you please <a href="https://www.house.gov/representatives/find-your-representative" rel="nofollow" style="box-sizing: border-box; color: #ec2c22; cursor: pointer; text-decoration-skip: objects;">contact your Representative</a> and urge them to support the push to #SaveIsabel.</div>
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Many thanks,</div>
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#SaveIsabel</div>
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<span class="type-no-wrap type-uppercase type-weak" style="box-sizing: border-box; color: rgb(115 , 114 , 115); text-transform: uppercase; white-space: nowrap;"><i>OCT 17, 2019 — </i></span></div>
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<i>Senator Dianne Feinstein (D-CA) and Senator Lindsey Graham (R-SC) have introduced a new bill, S. 2612, for Isabel and her family to become permanent residents. This is remarkable and is a direct result of the public support shown to Isabel and her family. We are all grateful to Senator Feinstein and Senator Graham. Congressman Desaulnier previously submitted a similar bill for Isabel in the House, HR 4225. <br style="box-sizing: border-box;" /> <br style="box-sizing: border-box;" />The support for Isabel also lead to US Citizenship & Immigration Services’ reopening the denials and reinstating the medical Deferred Action program. However, there is still no official word on the medical Deferred Action extension approval for Isabel or any of the other 420 people who received medical Deferred Action denials in August. A House hearing on this topic was cancelled today due to Committee Chair, Congressman Elijah Cummings' passing. We are hopeful that the hearing will lead to the resolution of the medical Deferred Action extensions by the US Citizenship and Immigration Services. <br style="box-sizing: border-box;" /> <br style="box-sizing: border-box;" />Thank you again for all your help. Your support has helped us #SaveIsabel.</i><br />
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<br class="Apple-interchange-newline" />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6951027584834725236.post-29041582323015537002019-08-29T11:23:00.000-07:002019-10-27T10:50:55.600-07:00<span style="color: #201f1e; font-family: "times" , "times new roman" , serif;"><span style="background-color: white; caret-color: rgb(32, 31, 30);"><b>SAVE ISABEL!!! (Please) </b></span></span><br />
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<span style="background-color: white; color: #201f1e; font-family: "times" , "times new roman" , serif;">Many of you know that a few years ago I was invited to share my story about living with a terminal illness via a television show called, My Last Days <a href="https://youtu.be/EYFy9r6X_9Q" target="_blank">CLICK TO WATCH</a>. I was one of five others who have been valiantly trying to serve others, make a small difference on this planet while also trying to save our own lives. Tragically, we already lost Claire Wineland to the angels (<a href="https://www.youtube.com/channel/UCTw8xGVrk4FTAJwMG6mw22w" target="_blank">CHECK OUT HER MAGNIFICENCE HERE</a>). Now, one of the sweetest, strongest people I know, another cast member, desperately needs help to stay alive. Please read an update to her story, and sign her petition to continue to get the life saving treatment that she so desperately deserves. She and her family have done everything legally to stay here in this country to keep Isabel alive. I implore you to at minimum sign her petition, and if you have any resources to help, please, please, please let me know and I can connect you to her and her lovely family. Thank you for taking the time to read this, I am incredibly grateful to you!</span><br />
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<a href="https://www.instagram.com/p/BJTbCkvgbJI/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">Two of my favorite people! I swear @isabel.sparkles's aura is just heart bubbles exploding from her soul. 💕💕💕</a></div>
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A post shared by <a href="https://www.instagram.com/jessica_oldwyn/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> Happy Coconuts</a> (@jessica_oldwyn) on <time datetime="2016-08-19T20:20:39+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Aug 19, 2016 at 1:20pm PDT</time></div>
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<span style="background-color: white; color: #201f1e; font-family: "times" , "times new roman" , serif;">(The following has been copied from her <a href="https://www.change.org/p/save-isabel" target="_blank">change.org</a> page)</span><br />
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<span style="background-color: white; color: #201f1e; font-family: inherit; font-size: large;"><i><b>Save Isabel</b></i></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i><br /></i></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>Told that she would die by the age of 7 due to a rare medical condition, Isabel moved to the U.S. to access life-saving medication and care not available in her home country. Now she is being deported, with just 33 days notice, despite 16 years of living in the U.S. a legal resident.</i></span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i><br /></i></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>Help keep Isabel in the U.S. so she can continue to access life-saving medical care.</i></span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i><br /></i></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://twitter.com/intent/tweet?text=%40realDonaldTrump%20Please%20ask%20USCIS%20to%20put%20Maria%20Isabel%20Bueso%20Barrera%20%26%20her%20family%20back%20in%20Deferred%20Action%20status.%20They%27ve%20been%20in%20the%20US%20legally%20for%2016%20years%2C%20work%20full%20time%20%26%20pay%20taxes.%20It%20is%20wrong%20to%20deport%20a%20person%20who%20will%20die%20without%20her%20medications.%20%23SaveIsabel&original_referer=https://clicktotweet.com&related=clicktotweet" target="_blank"><i>Tweet the White House & President Trump</i></a></span></span><br />
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<span style="font-family: inherit; font-size: large;"><b><i>About Isabel</i></b></span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i><br /></i></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>Isabel is an inspiration to everyone who meets her. She is smart, lively, lovely and full of plans. Despite being told that she would die by the age of 7, Isabel has defied the odds through life-saving medication and care. She recently graduated from college with honors and is an active member of her community.</i></span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i><br /></i></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>In 2016, Isabel was featured on the popular TV series, My Last Days. To see her episode and learn more about her story please <a href="https://www.youtube.com/watch?v=87q8HvGmTes." target="_blank">CLICK HERE</a>.</i></span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i><br /></i></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>Isabel is severely disabled - wheelchair bound with a tracheotomy. She suffers from a rare, life-threatening disorder called Maroteaux-Lamy Syndrome, also known as Mucopolysaccharidosis Type VI (MPS-6). She receives weekly day-long treatments at UCSF Children’s Hospital in Oakland, which is paid for through her private medical insurance.</i></span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i><br /></i></span>
<span style="font-family: inherit; font-size: large;"><b><i>About Her Situation</i></b></span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i><br /></i></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>In 2003, Isabel and her family moved to the United States to participate in a clinical trial to treat her rare condition. Upon FDA approval of the treatment, the family stayed in the U.S., legally, in accordance with a medical deferred action status, so that Isabel could continue receiving treatment and additional medical care crucial to her health. The treatment is not available in Guatemala.</i></span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i><br /></i></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>Isabel and her family have lived in the U.S. legally for 16 years. Isabel’s mother is her primary caregiver, while her father works and provides for the family. They own a home, pay taxes, are active in their community, and have complied with all legal requirements of their visa.</i></span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i><br /></i></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>On August 13, USCIS denied extension of their Deferred Action Status, ordering Isabel and her family to return to Guatemala. If the family does not leave within 33 days, deportation proceedings will be initiated. Immigration attorneys are reporting similar denials across the U.S., except to U.S. military families. Lack of notice prevents the family from making any accommodation for Isabel’s care.</i></span></span><br />
<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i><br /></i></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>According to Martin Lawler, Isabel’s San Francisco immigration attorney, “Isabel and her family have followed all the immigration rules. She is not a burden to the government and has private medical insurance. It is outrageous to deport a young person with a serious illness that can only be treated in the U.S. Where has our compassion gone? USCIS should extend Isabel and her family’s deferred action status.”</i></span></span><br />
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<span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b><a href="https://www.change.org/p/save-isabel" target="_blank">SIGN THE PETITION HERE</a></b></span></span><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6951027584834725236.post-61766516459163322912019-01-30T16:50:00.000-08:002019-01-30T18:27:02.548-08:00Medical Update<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; line-height: normal;">
<span style="-webkit-font-kerning: none;"><span style="font-family: inherit;">Thank you for being understanding and patient! I've been very private about the status of my health, but what I'm learning is that me not blogging hasn't removed the questions, the texts, the emails. So I'm thinking it might be easier to revisit the blog updates, that way if people want to know what's going on, they can read the blog, and even comment if they choose to, but hopefully I won't be asked so many direct questions all the time. I've learned that I really value the times I get to live without my cancer always getting brought up in social situations.</span></span></div>
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<span style="font-family: inherit;">Since the most recent brain surgery on 3/3/17 I have been doing regular MRIs, as we track another brain tumor. Radiation and chemo have been recommended at each appointment, but I have declined so far. Now, since I do my MRIs locally in Seattle, then upload them to UCLA's brain tumor board, the only results that I receive is the radiology report from UW. I get zero feedback from UCLA. They don't call, they don't send a report, I just read the official radiology report and compare it to previous MRI reports and make my own decision on whether or not to completely panic or not (ha!).</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdeU0fieP2-5X3uLZG6SoBTj_9Az_8bHjTFQew0CvDC1baZzdd3hyOHlSsOV5puGhhYEKIpeUB43V8npPlqW8Ex13AAy6Z5djAN-Xm8X9EAsRI3hP8Ww6cBnjy2ezWCokujLbCCkfL4A/s1600/12.18.MRI.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" data-original-height="1246" data-original-width="959" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdeU0fieP2-5X3uLZG6SoBTj_9Az_8bHjTFQew0CvDC1baZzdd3hyOHlSsOV5puGhhYEKIpeUB43V8npPlqW8Ex13AAy6Z5djAN-Xm8X9EAsRI3hP8Ww6cBnjy2ezWCokujLbCCkfL4A/s640/12.18.MRI.png" width="489" /></span></a></div>
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<span style="font-family: inherit;">After reading that radiology report, I wanted to vomit. My entire heart dropped to the floor. It was scary, and I immediately believed that the tumor had grown significantly. I saw, "interval enlargement" and "additional areas" and my head started spinning.</span><br />
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<span style="font-family: inherit;">Then I saw dan walk over to a comfortable chair with his phone. I asked what he was up to, and he said he was trying to pull up previous rad reports to compare. (He's so smart!) So I logged into my UW portal that holds all of my medical reports, and we sat there while I dictated the tumor measurements from all the previous reports while Dan wrote them down.</span><br />
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The MRI scans are set at 3 mm slices, so any slight movement of my head </div>
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(which is impossible to avoid) skews measurements. </div>
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So there is no way to get exact quantifiable results with an MRI, it's more of a window.</div>
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<span style="font-kerning: none;"><span style="font-family: inherit;">After comparing measurements, I felt more comfortable. It's never easy living with the knowledge that there is a mass in my brain (possibly, according to the rad report, three masses), but I also feel strongly that I am going to make health decisions based on what feels good to me, not what is expected of me. So basically I'm flying by the seat of my pants. (Kidding, but not kidding.) I'm still doing some treatments, drugs, foods, lifestyle choices, but it all has to line up with my ethos. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: inherit;">So there we have it folks! A solid, raw, technical health update. Now Emma and I can get back to gardening!</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ0spJUEkeil1j8GS2RQF3dOUKpv-xLxdC3YBQmQsNJPPf1jbAKANYPNVRpSwZRixs_DiDvZNgJR1rBdO1yOTP61pYuelTBo0OLsKWblcdsjaZHNjRUKvci5010UeehrsA1YwaIQo0jw/s1600/emma.kisses.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ0spJUEkeil1j8GS2RQF3dOUKpv-xLxdC3YBQmQsNJPPf1jbAKANYPNVRpSwZRixs_DiDvZNgJR1rBdO1yOTP61pYuelTBo0OLsKWblcdsjaZHNjRUKvci5010UeehrsA1YwaIQo0jw/s320/emma.kisses.jpg" width="320" /></span></a></div>
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Unknownnoreply@blogger.com42tag:blogger.com,1999:blog-6951027584834725236.post-28662321929182501432018-04-28T17:18:00.000-07:002018-04-28T17:19:10.505-07:002018 Update<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: inherit;">Hi blog readers,</span><br />
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<span style="font-family: inherit;">I took a necessary hiatus, and truthfully I’m not sure how much blogging I will continue to do in the future. I’ll have to feel it out.</span></div>
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<span style="color: #212121; font-family: inherit;">I have been focusing on my brain surgery recovery. I still have various therapies several times a week, and I'm trying to enjoy my life as much as </span><span style="color: #212121;">possible. I have several new deficits that I'm trying to correct, but it's a lot of work, and headway has definitely slowed.</span></div>
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<span style="font-family: inherit;">I became very overwhelmed with this last brain surgery. In fact, there were some unexpected and damaging events that are taking me a long time to process. When I get severely overwhelmed, my whole body starts shutting down. Since I’ve been living with these brain tumors, and experiencing surgery after surgery, the stress created an autoimmune disease called Hashimoto’s Thyroiditis. From the advice of my various doctors, and specialists, I chose to stop the blog, and stop social media including emails and texts. </span></div>
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<span style="font-family: inherit;">Over the past several months I also had my DNA sequenced, and the most interesting finding is that I have two mutations on the same gene (one from my mom and one from my dad). These mutations are on the genes that detox stress hormones (like cortisol). Instead of being able to hear stressful things, witness stressful things, or experience stressful things, and process it out of my system, my body just keeps recirculating all the damaging hormones for weeks, or even longer. Because of these two mutations, I can feel the stress hormones in my body. I have anxiety attacks frequently, I get stress rashes, hives, and rarely sleep through the night. The circulating stress hormones do a number on my quality of life. But the most damaging aspect is that it causes the release of inflammatory cytokines that feed cancer. So anything that is negative, or hurtful, or overtly aggressive, or even <i>perceived</i> negativity, triggers a cycle of debilitating anxiety, and tumor growth. Stress literally kills me, it's written in my DNA.</span></div>
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<span style="font-family: inherit;">I’m trying to mitigate my stress response, and release stressful things in my life, but I have a lot of internal fear and anxiety already. I have regular nightmares about my surgeries, and I still have a lot of physical and emotional pain. Because of all that, I have had to completely change my life.</span></div>
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<span style="font-family: inherit;">I really appreciate those of you who have been patient and loving toward me at this time. And to those of you who voiced frustration, you are exactly why I had to protect myself from unkind, hurtful statements. </span></div>
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<span style="font-family: inherit;">I started this blog to keep my friends and family abreast of health developments. I could never have imagined it would bloom into a massive web presence. But at the core of this blog is just me. I’m just a woman trying to navigate her life as she lives with MRI after MRI, brain surgery, after brain surgery, after brain surgery, after brain surgery. And as if the demands of normal daily life weren’t enough, I have to find a way to remain positive in a nearly impossible situation.</span></div>
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<span style="font-family: inherit;">I have been very fortunate to have so many kind, thoughtful, and special people that I have met along this journey. I hope to continue to blog, but I have to put my health first, even when it upsets people. I wish I wasn’t so sensitive, but so far, I can't seem to be able to adjust that aspect of my personality. I hope you can understand, and that no one takes my choices personally. </span></div>
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Unknownnoreply@blogger.com66tag:blogger.com,1999:blog-6951027584834725236.post-33487280587044489742017-12-25T15:02:00.000-08:002017-12-25T15:02:14.796-08:00Merry Christmas & Happy Holidays <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="background-color: white; color: #212121; font-family: inherit; text-align: left;">Merry Christmas everyone! </span></div>
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<span style="background-color: white; color: #212121; font-family: inherit;">You, friends, are a true gift in our lives. You have supported us from the moment I was diagnosed, and you continue to lift us up as the challenges persist. My heart is full, my soul is full of gratitude! I thank you IMMENSELY!!</span><br />
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<span style="background-color: white; color: #212121; font-family: inherit;">We feel your love, and we are sending it right back to you! </span><br />
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<span style="background-color: white; color: #212121; font-family: inherit;">I plan to write a post soon with a health update - sorry I've taken such a long hiatus. For now we love you, we appreciate you, we hope you are well! </span><br />
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<span style="background-color: white; color: #212121; font-family: inherit;">Xoxo</span><br />
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Unknownnoreply@blogger.com21tag:blogger.com,1999:blog-6951027584834725236.post-38092472483472674802017-11-11T12:52:00.000-08:002017-11-11T12:52:53.421-08:00Triannual MRI Results<div dir="ltr" style="text-align: left;" trbidi="on">
Things always change in a blink.<br />
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Yesterday I was Googling hair styles, trying to decide if I had the balls to rock shorter hair to match those little post surgery stragglers. I had no reason to believe that there were problems in my brain. I mean, ya, this dome has problems for sure, but I didn't think there were tumor problems.<br />
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Apparently, I was wrong.<br />
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Soooooo, they want me to do another brain surgery. In three months.<br />
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I'm not kidding.<br />
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Another surgery? Two brain surgeries in nine months?!?! But I don't even have a glioblastoma. What the hell is happening?<br />
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I wish you could see the look of disbelief on my face.<br />
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I'm still waiting for the written radiology report, before I truly panic. Actually, I'm probably not going to panic anyway. I mean, what's the point.<br />
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So. What do I do? I want to start with the basics: lower my inflammation, increase my anti-cancer regiment, dose up my off-labels, be consistent with my meditation, my exercise, lower my stress, and my worrying. And I kicked that mean girl out of my head. I don't know if you have one, but I do, and she's a real B. She says things like, "You don't deserve good health, you can't even function in society. You can't even have a career. You can't even have a kid. You can't even drive a car. What good are you? Look at how much help you need, you're a drain, always taking. Just give up. You don't deserve to live."<br />
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I'm serious, she's really mean.<br />
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So she's gone. Eff her. I don't have to listen to her lies. I wish I would have kicked her out a long time ago.<br />
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Anytime I get life shifts like this, it launches me to a new level of personal best. I have no idea what I'm going to learn, what I'm going to explore, or how it will all unfold, but I'm here. I'm excited. I'm curious. I have no idea why this is my path, my journey, or why these are my struggles, but they're mine to live and experience.<br />
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I wonder where this is going to take me now...<br />
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PS I'm open to suggestions. Please leave ideas in the comments section. I will be managing very limited emails and calls. And it would be <b>really</b> helpful to keep the information in one place to stay organized. Even if you think it's something I've done in the past, that's okay! I can't remember all of the things I've tried. Your help would be incredible. You can even post a comment anonymously.<br />
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Thank for helping me. Yet again. (Wink and a kiss.)<br />
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Unknownnoreply@blogger.com19tag:blogger.com,1999:blog-6951027584834725236.post-61919759422343992182017-11-02T15:40:00.001-07:002017-11-02T18:41:25.365-07:00Triannual MRI<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";">I've been feeling vulnerable for so long. And truly sad.</span></div>
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<span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";">My heart has been raw.</span><br />
<span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><br /></span><span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";">I haven't been able to write because I couldn't pretend. The whole point of the blog has been to have an outlet. It's where I can be me, but I never expected it to grow like this, and it puts me in a unique position. Sometime this summer the blog surpassed 1,000,000 hits. </span><br />
<span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><br /></span><span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";">It's flattering, and terrifying. My stomach just cramped with the thought.</span><span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><br /></span><br />
<span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";">With that understanding, how do I write my feelings, my hopes, my dreams, my pain, the details of my life? I mean REALLY be authentic? </span><br />
<span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><br /></span><span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";">I have so much to tell, the missing links in my life. I would love to get it off my chest, to share my truth, but I can't do it. </span><br />
<span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><br /></span><span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";">And it suffocates me.</span><br />
<span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><br /></span><span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";">It's been a very challenging year, full of heartache, and family drama. And it hurts daily. </span><br />
<span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><br /></span><span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";">Maybe just stating that truth will give me some peace.</span><br />
<span style="background-color: white; color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><br /></span>
<span style="color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><span style="background-color: white;">Fortunately, I've been seeing a therapist weekly for months, and months, and she's helping me navigate this dynamic life full of oddities that involve living with cancer, going through treatments, recovering from the damage from surgery, the emotional toll of facing Death all the time, the complicated family relations</span></span><span style="background-color: white;"><span style="color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";">. And with all of that, I'm trying to stay present, and happy, while understanding that my life is not what I dreamt it would be (kids, career, driving a car, being able to handwrite, type, trim my own nails, etc.) And I'm losing too many of my cancer friends, like Crush. I mourn that loss everyday. </span></span><br />
<span style="color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><span style="background-color: white;"><br /></span></span>
<span style="color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><span style="background-color: white;">Sometimes I overthink, and wonder why I'm even here. </span></span><br />
<span style="color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><span style="background-color: white;"><br /></span></span>
<span style="color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><span style="background-color: white;">It's a lot of heavy stuff.</span></span><br />
<span style="color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><span style="background-color: white;"><br /></span></span>
<span style="color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><span style="background-color: white;">So that's where I've been. And Saturday, I have my brain MRI. I'll let you know how it pans out.</span></span><br />
<span style="color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><span style="background-color: white;"><br /></span></span>
<span style="color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";"><span style="background-color: white;">Thank </span>you for listening, and your patience while I have been unable to write or respond. I really appreciate your kindnesss/patience!</span><br />
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<span style="color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont";">xo</span><br />
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Unknownnoreply@blogger.com10tag:blogger.com,1999:blog-6951027584834725236.post-57055031113219611472017-07-20T19:34:00.000-07:002017-07-20T20:01:46.051-07:00Current MRI Results<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="background-color: white;"><span style="color: #212121; font-family: inherit;">Last night we got news that my MRI scan (taken a week and a half ago) showed stable results. There's scar tissue, which is to be expected, but because of the fabulous pathology from surgery, and these results, they are not necessarily pushing radiation and chemo at this point. Yay!!!</span></span><br />
<span style="font-family: inherit;"><br style="color: #212121;" /><span style="background-color: white; color: #212121;">My next MRI will be in three months, which means I'm safe to heal and continue to recover from surgery, and have some fun!</span></span><br />
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<span style="font-family: inherit;"><span style="background-color: white; color: #212121; font-family: inherit;">I've resorted to using my left hand for most things, and my handwriting is atrocious, but I am having so much fun focusing on what I CAN do, rather than what I can't.</span></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><br style="color: #212121;" /></span><span style="background-color: white; color: #212121;">When my lymphs started retreating after two weeks of antibiotics, my GP prescribed 4 more for a total of a month and a half. I'm about halfway through and these little nuggets are clearing up! So, maybe this ISN'T some sort of new cancer. <a href="https://jessicaoldwyn.blogspot.com/search?updated-max=2017-06-24T17:56:00-07:00&max-results=1&start=1&by-date=false" target="_blank">Thanks for putting that in my head, Mrs Ear, Neck & Throat Dr.</a></span></span><br />
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<span style="font-family: inherit;"><span style="background-color: white; color: #212121; font-family: inherit;">When I spoke to my neurosurgeon last night about the MRI results, we also discussed the enlarged lymph nodes, and the antibiotics, then she told me about a recent patient who she had to operate on because of a brain abscess. The patient had previously undergone a craniotomy years prior. Point is, the abscess was from a severe long term sinus infection. Wait, what? That can happen!?</span></span><br />
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<span style="background-color: white; color: #212121; font-family: inherit;">It looks like people who have undergone brain surgeries have increased chance of sinus infections. <a href="https://jessicaoldwyn.blogspot.com/2017/07/the-plot-thickens.html" target="_blank">What if I wouldn't have read that report and asked for antibiotics?</a> I was seriously headed for a brain abscess! Frick, that's terrifying!!! I seriously love my brain surgeon, but I DO NOT want to do another brain surgery ever again.</span><br />
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<span style="font-family: inherit;"><span style="background-color: white; color: #212121;">The swelling in the lymphs has not completely resolved, but the fact that they're abating, is huge! As my surgeon, and GP point out, lymphomas do not get smaller with antibiotics. I am so grateful that I dug deeper, that I didn't shutdown when the ENT doc cavalierly threw around the word "cancer". I hope this infection continues to resolve, and that this turns out to be a cautionary tale about personal advocacy and ownership. I wish we didn't have to work this hard to find answers, and heal our bodies, to protect our health, but no one knows your body like you do. And no one has as such a vested interest, that's for sure.</span></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiabS3wbkLllCTHVddZlM9Mqf6EhfeTwvF3eqr5rYzrD529Tw9F0jQaj66aK2jX4uwjqcKyv2K42y6_s37SIdZ-w3uwzI0wQ68YW8uwS6eqfwk1IAruZqnPcKbf-dzU7Gvd0XLrCDflg/s1600/07.19.2017.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiabS3wbkLllCTHVddZlM9Mqf6EhfeTwvF3eqr5rYzrD529Tw9F0jQaj66aK2jX4uwjqcKyv2K42y6_s37SIdZ-w3uwzI0wQ68YW8uwS6eqfwk1IAruZqnPcKbf-dzU7Gvd0XLrCDflg/s320/07.19.2017.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Feet in the sand today, was like coming up for air.</td></tr>
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</div>
Unknownnoreply@blogger.com12tag:blogger.com,1999:blog-6951027584834725236.post-23839853677864919212017-07-02T19:08:00.000-07:002017-07-02T19:08:21.451-07:00The Plot Thickens<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: inherit;"><span style="background-color: white; color: #212121;">It happened again. I caught another medical oversight, and it could prove to be huge!</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">For those that have been following the blog for a long time, you know that after every procedure and scan, I request the radiology and surgical notes. I review, and read between the lines, assessing if my doctors are giving me the full scope of each situation. Fortunately, this has saved my ass many times. (I've been prescribed the wrong drugs, I have had information withheld about my tumor growing, I have caught inappropriate procedures just in the nick of time, etc.)</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">Well, here's another one to add to the books...</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">My ENT's (ear, nose, and throat) office called to see about scheduling the removal of the largest of my swollen lymph nodes, to analyze if we're looking at another cancer. Before I was comfortable doing that, I asked for copies of my CT and ultrasound reports. I got the usual runaround, "Um....we don't normally do that." After some gentle persuading, I was assured the documents would be uploaded to my online chart.</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">And this is where it starts to get good...</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">I woke up, a few days ago, and sure enough the reports were available. I hungrily scoured the pages for medical clues. They start by detailing the enlarged lymph nodes. They talk about the locations, the sizes, their characteristics. Also, when they retrospectively compared my current CT scan with the images from my January brain MRI, they noticed the slightly enlarged lymph nodes. This means that this is not a byproduct of brain surgery. Then, the final curiosity toward the very end of the page, was that they started talking about my nasal cavity, and how it's infected! "Wait....what?", I thought to my self. I mean, I was feeling the beginnings of a tickle in my throat, and a runny nose, but this CT scan showed an invasive situation.</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">Now, at this point you might be thinking, "Goss. Why is Jess telling me this???" And trust me, I would rather keep it private, but in my research and conversations with a buddy who works in the medical field, I'm aware that a chronic sinus infection can definitely cause prolonged enlarged lymph nodes!!!! And to clear it up, it just takes some antibiotics.</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">I know antibiotics are a hot button topic. In fact, my own father raised us on garlic, going just shy of calling them murderous, but I kid you not, I have never loved the idea of taking a drug more in my life. What if this whole lymph node mystery could resolve this easily???</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">So after reading the report, I was lucky enough to sneak in the same day with my awesome GP, excited to with this new possibly. </span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">The main point of this post, though, is that the ENT doctor didn't catch the infection. And she should have!</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">It is possible, even probable, that all of this craziness is because I have been dealing with a chronic infection. I won't bore you with all the details, but suffice to say there are many factors that fell into place. Always waking up with a mild sore throat, feeling mildly congested - that kind of stuff.</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">This infection was not going away, and it had been a huge reason why I've been commenting for over a year about being bone tired. This kind of infection makes you exhausted, just like living with mono.</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">Now, before we close the case, I have two weeks of antibiotics (paired with probiotics), and thankfully we will know pretty easily if this resolves my enlarged lymph nodes. They're palpable, so feedback will be practically immediate. I realize I still could have lymphoma, but this makes sense, and it is worth a shot!</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">What if I hadn't requested the report? And read it? And called my GP? And requested antibiotics? (She was pretty shocked, even disappointed perhaps, that the specialist had missed something so obvious.) </span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">Let's really hope that in two week's time, my lymph nodes will be clear, and my system back to functioning happily. </span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">I share this post in the hopes that you feel empowered to advocate for your body, and your health. We might not aways know why we need copies of reports, or why we keep getting the same premonition, but try to listen. It doesn't aways make sense right away, but life is a series of puzzles. You get clue after clue, and it's up to you piece it together.</span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #212121;"><br /></span></span>
<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/AVvXsEg9yBBVNaWgn4fQ0rxrlFvAarxffV3P28tusK7jBSOBZJ93j3x5Ak2_LhYKPxhnxyQ1xjRrePAsu4La06LyyQZkV9vWjLeUgwINy6MaqRgIyg6OKyue7W5hp_GEcE9_a-6bzOu_MVS9nQ/s1600/bing.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9yBBVNaWgn4fQ0rxrlFvAarxffV3P28tusK7jBSOBZJ93j3x5Ak2_LhYKPxhnxyQ1xjRrePAsu4La06LyyQZkV9vWjLeUgwINy6MaqRgIyg6OKyue7W5hp_GEcE9_a-6bzOu_MVS9nQ/s320/bing.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bing wasn't impressed, either.</td></tr>
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<span style="font-family: inherit;"><span style="background-color: white; color: #212121;"><br /></span></span></div>
Unknownnoreply@blogger.com10tag:blogger.com,1999:blog-6951027584834725236.post-13048420685466191532017-06-24T17:56:00.001-07:002017-06-24T17:56:48.902-07:00Lymphoma or No Lymphoma<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="separator" style="clear: both; text-align: justify;">
<span style="background-color: white; color: #212121; text-align: left;"><span style="font-family: inherit;">Sorry for the delay. Tuesday we received the results of the CT scan. No large, hidden mass, however, the doctor saw concerning things in my thyroid. She said things like, "Well, maybe what's going on here is thyroid cancer that has metastasized to the lymph nodes. You need an ultra sound." So we waited a few hours, and snuck in for an ultrasound. Since then we were awaiting results. </span></span></div>
<br />
<div style="text-align: justify;">
<span style="background-color: white; color: #212121; font-family: inherit;">Yesterday evening, we got a call saying the nodules in my thyroid seem within the normal scope of a woman. Apparently, us women have extra lumpy thyroids.</span></div>
<div style="text-align: justify;">
<span style="background-color: white; color: #212121; font-family: inherit;"><br /></span>
<span style="background-color: white; color: #212121; font-family: inherit;">So where does that leave us? My lymph system is still under the impression that my body is under attack. My doctor keeps bringing up a type of lymphoma, but it's slow growing, and most of the time, it's just monitored. </span></div>
<span style="background-color: white; color: #212121; font-family: inherit;">
</span><br />
<div style="text-align: justify;">
<span style="background-color: white; color: #212121; font-family: inherit;">Could I find out for sure, if I do have lymphoma? Yep. But, they would need to remove one of the lymph nodes to run it through tests. Thing is, I don't have it in me right now. I can't handle more pain, more needles, and cutting. Right now, I need rest. I need a break, with laughter, and naps, and distractions, and air, with exercise, and a routine. I need to detox, and breathe, go for walks, and meditate. </span></div>
<span style="background-color: white; color: #212121; font-family: inherit;">
</span><br />
<div style="text-align: justify;">
<span style="background-color: white; color: #212121; font-family: inherit;">I can't handle the possibility of further health problems, and I don't really believe that's what we're dealing with. I just had a fourth brain surgery. My body, from head to toe, my subconscious and mind, even my poor spirit, they have been thru the gauntlet. </span></div>
<span style="background-color: white; color: #212121; font-family: inherit;">
</span><br />
<div style="text-align: justify;">
<span style="background-color: white; color: #212121; font-family: inherit;">I'm still clawing my way back to normalcy, and it makes sense that my lymph system is completely out of whack.</span></div>
<span style="background-color: white; color: #212121; font-family: inherit;">
</span><br />
<div style="text-align: justify;">
<span style="background-color: white; color: #212121; font-family: inherit;">If I start panicking, if it's too stressful to watch and wait, I'll schedule the procedure to remove one of those enlarged nodes. For now, I need to chill, and give my body some extra love. This could have gone very differently, and I am so freaking relieved! No big old tumors, yay! If I am living with a little lymphoma, so what (which probably isn't the case anyway). I'm living healthy, and happy. And, for right now that's good enough for me.</span></div>
<span style="background-color: white; color: #212121; font-family: inherit;">
</span><br />
<div style="text-align: justify;">
<span style="background-color: white; color: #212121; font-family: inherit;">Now I can schedule my brain MRI. (Never a dull moment.)</span></div>
<span style="background-color: white; color: #212121; font-family: inherit;">
</span><br />
<div style="text-align: justify;">
<span style="background-color: white; color: #212121; font-family: inherit;">Oh, and to clarify, the possible lymphoma, would not be related to the glioma. Also, my doctor is comfortable waiting 3 months before I have to remove a node.</span></div>
<span style="background-color: white; color: #212121; font-family: inherit;">
</span><br />
<div style="text-align: justify;">
<span style="background-color: white; color: #212121; font-family: inherit;">So, in a nutshell, we're going to triage and we'll deal with the current status of my brain tumor, which will help me make decisions regarding treatment. Lymphs are on the back burner, but I'll keep exercising them, and hopefully all that crazy stuff will work itself out. </span></div>
<span style="background-color: white; color: #212121; font-family: inherit;">
</span><br />
<div style="text-align: justify;">
<span style="color: #212121;">Thank you for the love and support - when things get crazy, and I don't know what to do, or what is going on in my body, you guys aways lift me up, and say the nicest things. I appreciate you all so very much! Sometimes I wonder how I'm going to face these obstacles that constantly keep popping up, then I remember I'm not in this alone. So thank you!</span><br />
<span style="color: #212121;"><br /></span></div>
<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/AVvXsEi_xNeLjv6deaWZKDJu1ZSSMsxHsV0r3NY45-BZF65oIY7xna-Z50PdQG2dbfSwD_MDYB4IQoifz4eTXpKzFQDLw3cCTWyIbHk2482DH51_TvkP7Apa8Iu_8V7rOBM10AE4y3dWCaqXSQ/s1600/painthouse.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_xNeLjv6deaWZKDJu1ZSSMsxHsV0r3NY45-BZF65oIY7xna-Z50PdQG2dbfSwD_MDYB4IQoifz4eTXpKzFQDLw3cCTWyIbHk2482DH51_TvkP7Apa8Iu_8V7rOBM10AE4y3dWCaqXSQ/s320/painthouse.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="background-color: white; color: #212121; font-family: inherit; font-size: small; text-align: left;">I don't have time for health problems, this house won't paint itself!</span></td></tr>
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<br style="color: #212121; font-family: wf_segoe-ui_normal, 'Segoe UI', 'Segoe WP', Tahoma, Arial, sans-serif, serif, EmojiFont; font-size: 13.333333015441895px;" /></div>
Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-6951027584834725236.post-66224298657632511832017-06-18T20:33:00.001-07:002017-06-18T20:45:23.369-07:00Lymph Nodes in Full Attack<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: inherit;"><span style="background-color: white; color: #212121;">Remember that enlarged lymph node I mentioned last post? That anomaly? Well, we've been monitoring, and I've remained anxious, unsettled. Then, Monday, my GP found a second enlarged lymph node in my lower neck/chest area. Friday I was referred to an ENT (ear, neck, and throat) oncologist/surgeon, and she found a bunch more. A LOT more.</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">As the doc prodded, she discussed my medical history, we talked about my recent brain surgery, and how that might effect my lymph system. She also discussed lymphoma, and requested a CT scan to rule out a large tumor that could be hiding in my chest cavity.</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">So that's where we're at. I have a CT scan Tuesday. I'm not sure when I'll have results, but Dr said probably this week.</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">I'm still willing it to be some sort of wild reaction to the past three months. Maybe this fourth brain surgery kicked up some proverbial cancer dust and now I need my lymphatic system to clean out the pipes and take it away. I mean, that's what the lymph system does anyway, takes away the cellular debris, remove toxins, etc.</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">I'm confused, and scared, but hopeful, and curious. I'm a lot of things. </span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">If you have any extra, please send prayers/positive energy/anything. I'm trying not over analyze, trying not to panic, but dang if I'm not over-ripe dealing with medical stuff. I am overdue with my MRI as well, and UCLA is expecting me to start radiation and chemo this month (I haven't consented or said no). </span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">I'm so happy to be here, but as I've been recovering, something like this completely throws things out of balance, when I'm barely getting by sea legs anyway.</span><span style="background-color: white; color: #212121;"> </span></span><br />
<span style="font-family: inherit;"><br style="color: #212121;" /><span style="background-color: white;"><span style="color: #212121;">Life is being lived minute by minute, experience by experience, breath by breath. I know that sounds melodramatic, but everything is so up in the air.</span></span></span><br />
<span style="background-color: white;"><span style="color: #212121; font-family: inherit;"><br /></span></span><span style="background-color: white;"><span style="color: #212121; font-family: inherit;">One thing is for sure, I'm not ready for ready for a full system shutdown.</span></span><br />
<span style="background-color: white;"><span style="color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont"; font-size: x-small;"><br /></span></span>
<br />
<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/AVvXsEj38I_AVZHV2_EyAxPWzpXG-b6WyspUyYt0qOv07untEqZasrv4F7JNnUX2_Dc8UKAiuIlB8rJB_h2FVVWk4nJWZzzOPFFnVTOxK9JLKQlyrLCOuFCndj4W_7zmbB54jLaudzxkHeEKDQ/s1600/puppies.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj38I_AVZHV2_EyAxPWzpXG-b6WyspUyYt0qOv07untEqZasrv4F7JNnUX2_Dc8UKAiuIlB8rJB_h2FVVWk4nJWZzzOPFFnVTOxK9JLKQlyrLCOuFCndj4W_7zmbB54jLaudzxkHeEKDQ/s320/puppies.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sometimes it's hard to find joy, <br />
and that is why it's awesome to have friends with puppies. :)</td></tr>
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<span style="background-color: white;"><span style="color: #212121; font-family: , "segoe ui" , "segoe wp" , "tahoma" , "arial" , sans-serif , serif , "emojifont"; font-size: x-small;"><br /></span></span></div>
Unknownnoreply@blogger.com16tag:blogger.com,1999:blog-6951027584834725236.post-31310036227939365602017-04-27T15:59:00.001-07:002017-04-27T15:59:46.102-07:00Seven Years Already?<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: inherit;"><span style="background-color: white; color: #212121;">Yesterday was two months post surgery, a whopping sixty days. How is that possible? It feels like forever.</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">Major accomplishments include tying my shoes, putting earrings on (first time took 45 min, but I didn't give up), and most recently learning how to use scissor - that was two days ago. Still trying to master singing the alphabet, and handwritten word, among other triumphs.</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">I am stubborn, and continue to feed myself, and have dabbled with some makeup incidents. Needless to say, we had to get a new stain remover - we temporary brought in the big guns - for our carpet, all my clothes, and the wall. Oops.</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">I'm exhausted every day, but that makes sense, I'm recovering from brain surgery. (Even when I say it in my head, it doesn't seem real.) </span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">I stopped getting on to social media weeks ago (but am planning on posting this). I'm horrible about texting, emailing, and all forms of communication. I just don't have the energy. I really appreciate your understanding. </span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">On a side note for brain surgery friends, have you ever had a lymph node in the neck swell up after your craniotomy? We've been tracking one for over a month. It's hard, and not painful. It's about the size of a peach bit. My surgeon says that if it doesn't go away, or if it gets bigger, I need to get it checked out. Boo. I've never had this happen. I'm hoping it's a random immune response, but it is also scary. </span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">With all this stuff going on, trying to recover, and monitoring that blob in my neck. I'm just focusing on baby steps. And breathing. And books on tape. And not gripping my fork like <a href="https://en.wikipedia.org/wiki/Encino_Man#/media/File:EncinoMan.jpg" target="_blank">Encino Man</a></span></span><span style="background-color: white; color: #212121; font-family: inherit;">.</span><span style="background-color: white; color: #212121; font-family: inherit;"> </span><br />
<span style="font-family: inherit;"><br style="color: #212121;" /><span style="background-color: white; color: #212121;">Fun Fact: Today 7 years ago, I had my first brain tumor resection! (And now I'm four deep!)</span><br style="color: #212121;" /><br style="color: #212121;" /><span style="background-color: white; color: #212121;">I really look forward to feeling capable of daily life. And writing my own name. For now, I think I'll go take a little nap.</span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #212121;"><br /></span></span>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrwxOvkHLIGEZ1KCUYq1Jf34_5jLEwZoCWtSlGHyQMm-CnZCW9AHELZzmXCN199cW0_rxO6nQKBhf9IUwk_swt_bmmgMMQ-VpfS_rQ9pRzKxSrEIINRaNtf5hZg8QwyGUXAF404F1TCQ/s1600/IMG_1495.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrwxOvkHLIGEZ1KCUYq1Jf34_5jLEwZoCWtSlGHyQMm-CnZCW9AHELZzmXCN199cW0_rxO6nQKBhf9IUwk_swt_bmmgMMQ-VpfS_rQ9pRzKxSrEIINRaNtf5hZg8QwyGUXAF404F1TCQ/s320/IMG_1495.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Another favorite milestone was when Dan cut my hair for me last week. <br />He even added in some layers. Ha! </td></tr>
</tbody></table>
<span style="font-family: inherit;"><span style="background-color: white; color: #212121;"><br /></span></span></div>
Unknownnoreply@blogger.com15tag:blogger.com,1999:blog-6951027584834725236.post-50618624172034401402017-04-02T08:54:00.001-07:002017-04-02T09:04:42.301-07:00Truely Home<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="color: rgb(69 , 69 , 69); font-family: "uictfonttextstylebody"; text-decoration: -webkit-letterpress;">We arrived home a few days ago, and damn if I didn't sorely underestimate the transition!</span><br />
<div style="color: #454545; font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">
<br /></div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">
The area where they resected the brain tumor damaged my sense of space, and how I perceive my body in my environment. That means that my right side of my body feels grossly, over or under estimated, depending on the moment. </div>
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It's wild, but I see half of my body like a funhouse mirror, eerily distorted. Most of the time I pretend it isn't happening, because it's preeeetty weird. Fortunately for me, it was pretty easy to remain unaware while recovering, because although my eyesight is fine, the perception complication allowed me rarely notice my right side. While in Malibu, my environment was brand new, so I had no reference points to work with. </div>
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It works a little like this, I don't see/perceive/feel the right side of my body, except for the rare when times I'm stimulated by a shock (walking into something), being startled (new stimuli usually during a perceived threat), or if I'm focusing intently (which somehow demands an act of coordination).</div>
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Moving home forced me to take stock of my reality, and with that, the oddities in my brain.</div>
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Traveling wasn't as bad as it could have been, as far as pain, movement, or altitude, but surprisingly, taking stock our home was rough. I can only liken it to what waking up from a coma could feel like. I didn't recognize our things, or where our things went. The sights, the sounds, the smells, sensations, were all foreign. I am relearning my own home. From the hight of our bed, to analyzing where I might find my closet, how to flush the toilet, turn on water, open a window, find a cup, or find a blanket. With all that necessary exploration comes a lot of thinking/analyzation and that brings a whole new level of exhaustion and neural pain. It's exciting to push, and grow, but it's damn exhausting too. I love having more challenges, to continue to feel alive, that's for sure, but I didn't anticipate this level remapping,</div>
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I'm taking things slowly, not taking guests per Dan's request. It continues to be a challenge to adjust to each step of our life and all the nuances. It feels like I'm living in my own choose your adventure book, blended with a sci-movie, and it's pretty far outside my own capacity to comprehend. I'm fascinated with what's happening in my brain, and body. I'm watching my writing rapidly eclipse my verbal capacity, which is exciting because it shows clear progress, but also hints that I might need to start considering some speech, cognitive, physical and occupational therapy so that I don't leave other areas of my brain behind.</div>
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We are down to pills every four hours, and the dosing is less and less. I'm shocked by the amount of pain this requires to endure, then I'm reminded by what my brain is trying process, and relearn and heal. Then it somehow makes sense. It's all part of the process. </div>
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Life requires so much to process that I'm unable to communicate the same way that I can post, so thank you for being patient with me. I don't email, or text, or call, because it's still too much. In fact, this has taken three days for me to complete, but it's worth it. To express myself is such a powerful gift! </div>
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I'm choosing to remain calm, to focus on what I can control, which is to be kind to myself, and to take Dan's lead. Resting, and patience, are paramount, and feel sloth-like and boring, but realistically I am aware that I have some major limitations. I believe these limitations won't effect me forever, so it's not that big of a deal, but I also don't want to go backward by overdoing things. My bigger drive is not making Dan's life harder. Every choice has a consequence, and he is the one having to pick up the pieces. Sometimes quite literally. </div>
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Thank you for continuing to travel this journey with me! Your continued support, your love, your encouragement is absolutely integral. You guys lift me up, make me feel strong, and capable. You know just how to encourage me, make me laugh, and say just the right the things when I need them the most. I appreciate you all very, very much!<br />
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Unknownnoreply@blogger.com19tag:blogger.com,1999:blog-6951027584834725236.post-15497603568043893042017-03-29T04:09:00.001-07:002017-03-29T04:32:33.007-07:00Treatment Recommendations<span style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">We haven't exactly shared our cancer plan yet, because everything was so confusing. With my brain still healing, me trying to process information, we chose to table it so that Dan and I could just breath. I wanted to be able to explain what's been happening, and make sense. </span><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">All in all, we feel it's pretty damn good news. And who doesn't like a plot twist? </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">1. The tumor areas are still remained within the same grade.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">2. Dr Liau masterfully competed a gross total resection - the best possible outcome. There are still cancer cells in my brain, as my type of tumor does not grow within clean margins, instead growing little fingers, infiltrating healthy brain, but that is just to be expected.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">3. There was an area where the pathologist noted "treatment effect". That was described to us as something to be seen after radiation, usually. Magically, however, as you guys know, I have not done radiation. So is causing it??? I had stopped all my treatments many months ago, and have been focusing reiki, removing negative influences, and exploring spiritually. Our radiation oncologist tells me that my brain looks I've undergone some treatment to effect the growing tumor in my brain, as if I had undergone a level of radiation - that's wild! And encouraging. It feels like hope. Do you believe in miracles? I do! I feel like I'm in the midst of a metaphysical miracle. I am on the cusp, a little speck, with so much to learn and experience. This development is profound. It's everything I've ever dreamed of! Remember how I was determined to get the MRI days before the surgery? My gut KNEW that something was different. I'm still pleased that I went through with the surgery, but the power of intuition is not lost on me. I did my MRI at a different center, that glossed over the results. It was a resurgical report that wasn't trying to measure new data, which gave me nothing to work from.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">4. The Ki67, or growth rate, has actually decined. The tumor in 2012 was 7-8%, this tumor is rated at less than 5%. Things like this don't happen. Gliomas don't behave like this. I have become an anomy. It's everything I have worked for, everything I have dreamed of! Granted, my cancer has not been cured, and there is still cancer in my body, but still - do you see the significance? Something real is happening. Something tangible. Something GREAT, is happening in my body. I'm getting an immune response!! Even my gracious surgeon and radiation oncologist stated it. Just mater of fact. It's undeniable! We have it in the cells, on the microscopes. I'm not cured yet, what who knows what happens next! A tangible immune is what every patient dreams of, this is epic and I can't help but think of all your prayers, and how they elate. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">5. Some of my doctors are curious, requesting further tests, trying to see what could be going on, but I've done so many treatments, tried so many things, it's impossible to isolate the causality. Other doctors don't care, and choose to gloss over the whole mystery. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">6. Ultimately, the tumor board at UCLA, is recommending radiation and chemo, in 2-3 months. They want my brain swelling to go down. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">7. There had been three areas of tumor that they been tracking, via the MRIs. We are curious to find further info to see how the various tumors had been behaving to see what the growth patterns were. In January there was an area of increased intensity within the tumor itself, that had been lightly suggested that it was more aggressive tumor. We now know it was NOT more aggressive tumor, but seemingly treatment effect. Curious, isn't it? What if that corresponds directly with work with Maureen, my reiki master? </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I can't seem to wrap my mind around idea of starting radiation and chemo when I'm getting some really interesting, and exiting results withou actually having to go through the downsides, of those treatments. I mean, I don't know what it all means, or how it translates to my survival, but I owe it do myself to explore. Shouldn't we be celebrating, and digging into this, not sweeping it under the table? I'm not surprised, but it's sad, that I had a neuro oncologist not only pooh pooh the Ki67 changes, but he also recommended an inaccurate chemo drug (he argued with us, then we discussed with our surgeon, who confirmed we were accurate). This is not the time for auto pilot. This is my life. These choices have impacts, and coincidences. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Thankfully, I have until May to decide on radiation and chemo, to reflect, analyze, to work on my healing, and see what is and isn't working in my life. The more I let go, and explore this journey, more I remove I negativity, stress, expectations, the more space I have for healing. It feels indulgent, and self absorbed, but I have to explore this, and give it everything I have. I have no choice, other than to choose my self. There is nothing I want more than healing.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I'm in an era of growth, of exploration. I feel like unknowing is an advantage. I don't have the answers and that feels freeing. I am learning to see the world in a whole new way. Even to look at my health in a whole new way. I am finally integrating all pieces of myself. It's science, medicine, spiritual, it's metaphysical. A few months ago, the first time of my life, I went all in. Decided that I'm open to all healing, that miracles are not finite. That we all deserve health, but we that we have to be active participants in order to receive. From that moment, it has been a snowball effect of growth and excitement. Dan comments on it all the time - we're loving this! I wish I could bottle it, even write it all down, to share all the nuances, but it's lightning speed. I can't even express myself accurately and I must be terribly confusing, but suffice to say, it all feels positive, and it's fun, and soul affirming. You must feel it in my words, in my spirit, in Dan's spirit.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I have no idea what I will find tomorrow, or the day after, I don't place things in concrete. I'm learning to let go of expectations, and learning about what "life" means to me. This the happiest I've ever felt, and yet I just had a brain surgery, I have cancer, and they want me to start treatment that will not cure me, that could cause my cancer to become more aggressive, that could kill me faster. There are no easy solutions, and if things were different, if I was different, I could easy be pretty terrified. And it's not that I'm immune to fear, but it's not my focus. I'm dumping the gunk, and I only have the energy and space for things that serve positivity, and things that heal. I want and I choose to have fun, and love on my gorgeous husband, to soak up these moments, and memories, and friendships. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"> </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">As far recovery goes, I have been working on this posting for days. I don't how many hours, but it has been double diggits, with spell check, guessing, and apps that predict what you're trying to say. And Dan, he's always helpful, can't discount him. I'm very fatigued, sleep, quiet are the majority of my days, but I almost aways sneak a walk in and lots of unorganized stretching. I'm working on recognizing the beauty of calm, of just being. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I am plugging along left handed (not my regular side), my right side of my body is almost completely numb (with phantom hints of hope), and often weak. I drop things, I run into things, like it's a hobby. From the tip of my head to the bottom of my toes, I feel nothing's. The line is exactly half of my body, half my face. I drool a bit on one side but he thinks it's cute. People never know because Dan keeps me in check. My hero helps me put on a great show, taxing my limits, when I'm connecting with friends on rare occasions. They never quite see the realities. But I'm perfectly happy with that, I love the blog because people can engage as much or as little as they want. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"> </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I am not safe to cook, clean, navigate most objects, handle mail, my medications, or trim a fingernail, fold anything, I still get dizzy, and dan catches me, or helps me gently so I can deep trying to gain independence. I'm crafty, though, and can disguise my deficients. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I don't know numbers and dates, or days of the week. I can barely count, so basically it's a beautifully simple life for me, for now. Dan handles it all, and I just chill and do what I can, or laugh it off.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">We have so much going on in our lives, and it will definitely be quite the transition soon when Dan gets back to work, but this past month has been one of the best times of our lives. To share this journey with the love of my life, to make such dear friends, to be completely cared for by all of you, has been one of the most beautiful things to witness. This everything I could have dreamed of, and I thank all of you from the depth of my heart. Every single one of you continue to play role in my healing, and I am deeply grateful!</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEBxDCDAYkyELoczEvFF17SPKIP2nHFxMou6azvPqV9k7DZxysG2B0qKLphyphenhyphenOYLvaIQkT2IgWAy2IAAtPZ3fNsHJxmId5MBZZNvhmm0zGi090oC7ZMh10vDLg6Jt1RpTx2R9ErDKFTJg/s640/blogger-image--577593385.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEBxDCDAYkyELoczEvFF17SPKIP2nHFxMou6azvPqV9k7DZxysG2B0qKLphyphenhyphenOYLvaIQkT2IgWAy2IAAtPZ3fNsHJxmId5MBZZNvhmm0zGi090oC7ZMh10vDLg6Jt1RpTx2R9ErDKFTJg/s640/blogger-image--577593385.jpg"></a></div><br></div>Unknownnoreply@blogger.com15tag:blogger.com,1999:blog-6951027584834725236.post-59480815121956994352017-03-26T07:00:00.001-07:002017-03-26T07:59:02.577-07:00On My Terms<div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);">I've been resting. I've been healing. My progress is obvious, and it's exciting!</span><div><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="background-color: rgba(255, 255, 255, 0);">Origenaly, while in the hospital, the speech, occupation, and physical therapists, told me that I needed to spend 2-3 weeks in acute care home where I would work 6-8 hours a day on my deficits. The worst part, I was told I would have to live on campus, alone. I remember the second their door shut and I turned to Dan. We looked at each other, and I said, "Dope." He smiled, and I whispered, "Is that okay?" </span></div><div><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="background-color: rgba(255, 255, 255, 0);">I knew I couldn't be apart from him, not for that not during such a traumatic time. Dan and I laugh so much, we have the ability to keep things in perspective, we ground each other, and literally have fun in everything we do. There's nothing more therapeutic than my time with Dan. So I respectfully declined and said I would revisit therapy after I moved home in a month. </span></div><div><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="background-color: rgba(255, 255, 255, 0);">I had been told from my surgeon, whom I implicitly trust, that a complete recovery was expected, but to be aware of swelling which could take sever months to recover. In my mind, her words vindicated my gut feeling, that this time should be for healing, compassion, patience, and not brow beating.</span></div><div><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="background-color: rgba(255, 255, 255, 0);">As this is my fourth brain surgery, I'm different in how I evaluate the process. I'm much more calm. I'm able to analyze what will serve me on an independent level. For me, I knew being away from Dan would dampen my soul, extinguish my light. It would actually be carmful.</span></div><div><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="background-color: rgba(255, 255, 255, 0);">So, instead of weeks working in frustration, we were cocooned with a magical beach home in Malibu. It was through a friend of a friend, but now it already feels family. We have been nurtured by everyone, even friends of friends. Each day, I get better and better, oftentimes even between naps. I started with a walker, and yesterday I walked over three miles. I no longer require assistance.</span></div><div><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="background-color: rgba(255, 255, 255, 0);">You can see in my language, in my writing, that I am fast improving. I have no fears of deficites, I have have no fear of much. Each challange is an adventure, and each opportunity is a gift. </span></div><div><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="background-color: rgba(255, 255, 255, 0);">I have never felt so provided by the universe. From our friends, and family, holding down our home with our pets, to Dan's employers, and work buddies, the emotional support of your payers, and blog comments with pure love. All of the generous donations and gifts. We have made new friends, we have made unbelievable memories. We have found joy in the wildest circumstances, and it's because of all you! You lift us up, you nurture us, you choose to send us strength, and compassion. You are healing us. Please never underestimate your role! </span></div><div><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="background-color: rgba(255, 255, 255, 0);">The world continues to bring surprises, and we continue to have so much fun regardless of the subject or context. Sometimes life feels like a movie, full of lessons and growth. It leaves me with hope, and recharges my soul, regardless of the ending. In those moments, as often as I can remember, I soak it up, lift my face to the heavens, with a jubilant expression, and praise God, praise the Heavens, and I thank whomever is responsible. </span></div><div><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="background-color: rgba(255, 255, 255, 0);">Life is so damn fun!</span></div><div><br></div><div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUJ-kcnVEQvdyuMWnG1quSNJvXOelUyYqcRbwJJniFscaCaKfsoVE5o-JOAAtbsiBqsT_Z4QEqSDQNjU0VjzNJgp95kIfwv0UM17jKHmA2Tlr-gvV0MkU8lmBxDeQtguKc2m0X2CAqGQ/s640/blogger-image--764048801.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUJ-kcnVEQvdyuMWnG1quSNJvXOelUyYqcRbwJJniFscaCaKfsoVE5o-JOAAtbsiBqsT_Z4QEqSDQNjU0VjzNJgp95kIfwv0UM17jKHmA2Tlr-gvV0MkU8lmBxDeQtguKc2m0X2CAqGQ/s640/blogger-image--764048801.jpg"></a></div><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq0It8_79pdwEyaXTo_T0jRNGyn9_3C1k0aPcEN7EOWN9HR0aW2phDZ89JCh3hmaWzrniqwMPSaAgGk5pzJNhTHSIMykQws1WCUXeILHqjrNGSgLwzLVlTlFQWRM9q7PtGY-Vy3W96gg/s640/blogger-image--823975340.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq0It8_79pdwEyaXTo_T0jRNGyn9_3C1k0aPcEN7EOWN9HR0aW2phDZ89JCh3hmaWzrniqwMPSaAgGk5pzJNhTHSIMykQws1WCUXeILHqjrNGSgLwzLVlTlFQWRM9q7PtGY-Vy3W96gg/s640/blogger-image--823975340.jpg"></a></div><br></div></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">These pictures show the milestone that is my first shower after three weeks of suture. Damn that felt good to remove and clean!!!</div>Unknownnoreply@blogger.com12tag:blogger.com,1999:blog-6951027584834725236.post-83553438513774570042017-03-23T07:31:00.001-07:002017-03-23T08:26:47.965-07:00We Are Not Stuck<span style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Sometimes I wonder why my lift continues to be so magical. I am so full of happiness? Why do I get to feel this way? How us it possible to me this happy? Shouldnt I be scared? Or angers?</span><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">During the lead up in LA, presurgert, I was waiting for a doctor, and while sitting in a room, I heard gurgoral sobbing, then wretch screams that could not be calmed. After a few minutes I got up, and walked over to the nurse to see if there was anything I could do. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I was gently told that a patient had been notified of a tumor recurrence. I asked she was going to be okay, if she needed help, and the nurse reassured me that she went back and hugered her and she was with our doctor. I thanked her for sharing that hug, and hugged her too. Life is a circle of comcassion, and sometimes that's all you can do.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">By the time the doctor got her settled, the office was running falf an hour late, and my rushed physician, mussled in worried I word be mad at him. I let out a laugh so loud that I even stunned myself. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I shrinked and said, "Hey, that's life!"</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">We got settled it, and we<span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"> </span>got to checking in. We had never met as it was<span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"> he was there to assess the safty of my surgery. To see my risks, and conduct extra blood work - things like that. </span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"><br></span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">As we reviewed my years of surgeries, the lenthly treatments, and touched on my scheduled brain surgery, only a day or some away, he stopped me and asked in awe, how I can handle this with smiles and laughter. He said wants to research people like me to learn and figure out more so help for other patients. He is aways fascinated by the differet perspectives of people, and how they analyze there situations. I told him I feel the same too! It's wild, really, wow different people see things.</span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">He ashed it he could me some pointed questions about my attitude, and I askered him best I could. I told hi am in absoute awe that I get to be alive. And that means all of it - not just the good stuff. I choose to be happy. Because it really is a decision. I am easy to laugh, because it makes me feel good. I work hard to give people grace. And I'm easy distracted. I love making people laugh, and smile. Those two tings are my favorite things to give. And that I try to limit negativity.</span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">I was very clear that I'm no master, but these are my goals. This is how I try to life my life. And damn if it isn't fun! </span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"> </span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">World is a very special place, full of choices. Don't like your attitude? Change it. Don't like how that person treats you? Stop spending so much time with them. Feel scared? Start saying aloud, everything you're grateful for. Feeling down? Pick people that lift you up! </span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"><br></span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">I probably sound simpistic, but you just start little by little. And it requires analyzing your environment, your feelings. We are not stuck, unless we chose to be. </span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"><br></span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">I choose to be happy, and I do it because it is saving my life. That might sound confusing, but regardless of my cancer, I feel deep joy in my soul, and THAT is what I mean about healing. I can feel healed every day, in my own attiute. It's viseral, palpable, it is with intention and it's my choice.</span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">We are alive as much we want to be. We are present as we want to be.</span></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY1n41Mc2DEOwrtLOA4SQi9_R8CBqtkfZOjGZOv6FwOD3eVgDCiiuHsIfLMnEVoLc52wqr1wBFeN1uKuW7IvmrbAV-ztDuOARYY6alxC9NSBvnSdVOfdwNKhI2MSbVWu__ZaKr9arBPg/s640/blogger-image-479230318.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY1n41Mc2DEOwrtLOA4SQi9_R8CBqtkfZOjGZOv6FwOD3eVgDCiiuHsIfLMnEVoLc52wqr1wBFeN1uKuW7IvmrbAV-ztDuOARYY6alxC9NSBvnSdVOfdwNKhI2MSbVWu__ZaKr9arBPg/s640/blogger-image-479230318.jpg"></a><div class="separator" style="clear: both;"><br></div></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLb-YkixWOlCv4HFMuymysCXcmlLuOXmKgBuud4iGRivuOHjOAB3QfwxrhJzH40Z5UFND0uGqtoRqrPHhpoiXf4y1HvYaVZRY-NafpGJtvfvSoVLv3jmxcgHP93PoRWoKaRMKpj_qCDg/s640/blogger-image--803325746.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLb-YkixWOlCv4HFMuymysCXcmlLuOXmKgBuud4iGRivuOHjOAB3QfwxrhJzH40Z5UFND0uGqtoRqrPHhpoiXf4y1HvYaVZRY-NafpGJtvfvSoVLv3jmxcgHP93PoRWoKaRMKpj_qCDg/s640/blogger-image--803325746.jpg"></a></div>Unknownnoreply@blogger.com10tag:blogger.com,1999:blog-6951027584834725236.post-64968940509952598562017-03-22T02:27:00.001-07:002017-03-22T02:48:48.617-07:00Rad Apt<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="color: rgb(69 , 69 , 69); font-family: "uictfonttextstylebody"; text-decoration: -webkit-letterpress;">We met with a raduatiopn oncolocgest yesterdar, and have been digestinging her opinion everever sence.</span><br />
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I opted away from radiation atleast 3 times onthis these 7 years. I am aware there are risked. I'm aware of possible humatiotations, of secondary melyglancies. If short and long term effects. </div>
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The radiatiotion oncology doctor was a gem, though. A werd way to describe her, I'm sure, but what a wonderful woman. She was the perfect combo of information, science, reality, humor, humility, and respect. </div>
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She feel strong that that we need to act on now while tumor murdan is low - from the surgery. The trick there is still no baruntee that it would sow tumor growth, and there will be <i>now</i> side effects, and later effects, and it not possible to say how severe the damage would be. Her argeue is that our tumors clearly keep protesting, aways grow back so we need to act. For me, I don't string those that too clothether. Radiation not a simple choice, nor the only, or even the most promesting.</div>
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I hear what she is saying, and I'm not ruling out, but we are meeting with our oncolog Friday, and will discuss chemo, some possible medical deivises, off-label drugs and lord only what. Maybe we would do all. Maybe we will do none. Most likely combo. </div>
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I no idea what we will decide, but I'm in no rush. I have minimal stress about treatment. I feel in my soul a depth that I can't explain. I'm living my live with no regrets, analyzing my options, listening to my inner voice. This is my rescission to make. I can't phone this in, or copy some else's notes. I need to look at all my options, even outlandish ones, longshots, exporemtal ideas, and of corse revisit the convential combos. The answers will come, I know, so there is no need to be scared, or stress. I feel free, and content. I am alive in this moment, so I soak up each moment. </div>
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I am still mimin 3 hour of pills, but I snooze day and night, sneaking whenever I can. I relish when I awake and I relish my naps. I love it all. That helps it when I find myself tapping away, sharing with you how I feel, analyzing my life and where I want do.</div>
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It's wild to live in a moment, or environment, where I not competely capable of major decisions, yet I have to push thro. I am heal daily, but I don't trust my mind. Thank god for Dan yet again. We discuss, he explains, we discuss, I nap, then we try again. A lot in invain. I will make dense agang, and with his patience, I feel calm, and safe. The harder this is, the more he steps up.</div>
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I wish didn't have to ask to ask him of this mich, but he never companes. He's full of graces, and compasson. The reality of what we go throug is often indescribable, but his love is never escaping me. I don't have a lot that I can take of, I need to relian dan, but I can live him grace, gratitude, smiles, and laughter. And gratefuly he is trilled with these small gifts. </div>
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Unknownnoreply@blogger.com15tag:blogger.com,1999:blog-6951027584834725236.post-80948598137856217592017-03-19T05:46:00.001-07:002017-03-19T06:04:45.526-07:00Jess Offcial Post <div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: inherit;"><span style="color: #454545; font-family: inherit; font-size: 17px;">It's jess nere, and I am so happy to try my first post I am pecking away left finger, my right sisde is no good. My whol right body is messed up, to the pont thap oor Dan must take care of my potty. And all needs do most all. We just laught, these days, and I smile in haditude. </span>
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<span style="font-family: inherit;">Dan approved ny plan for a new post so that I could connect. Ok I need to rest, and I do, but I am a connecter. I ty to try with friends but not allmakes sensebse, I'm hoping you will understand me, and we can hulp me grow and love and live. Becasuse your comments make me feel so loved, soroted, and cared for. You encourage me, and espires me.</span></div>
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<span style="font-family: inherit;">Just right now I ecstatic to be trying this right now!</span></div>
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<span style="font-family: inherit;">I feel my brain grow, my soul expand. In ripe now I hear a deecate owl, so gentle, just a house rear.</span></div>
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<span style="font-family: inherit;">I have so many insighteests, so many feelings. I feel rure joy and raditude, every second. I laugh nobsop, and oooo at my husband, ahat he has no lomit on what he will do for me. And my love and respect to him shaters expectations. I never krew I could love him more, bit I can, and I am now. </span></div>
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<span style="font-family: inherit;">Dan makes me feel powerful, capable, funny, sexy - and ge sill has to hive me sasppotores, for consetation, so this no small feat. </span></div>
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<span style="font-family: inherit;">I thank god ever moment for each moment, I scuggle softly bed, and coress his mack while he purrs med app benween meds. Be probably doesnt even know as he is easy to snooze cause he's fitred. </span></div>
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<span style="font-family: inherit;">Im dedicated to his happiest life. I live to make him smile, and feel my love. This time together is a dream, and gift, and is completely evolve our bond. We are our own habitat, our own rare species. </span></div>
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<span style="font-family: inherit;">We don't yet biw the treatment reatment, or all the things to expect - my status, what my life will look, but I have dan with me, and for now, that's all I need to know. We always choose happy, even when life is scary and uncertain. All life is unsertan, it's a so fang fun. We choose joy. And gratitude. And laughter.</span></div>
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<span style="font-family: inherit;">I share in the blog because I can, because it's real. I don't know this is why is nine to live, but it's beautiful, and I am so happy to ne here! </span></div>
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<span style="font-family: inherit;">Tens of times a day I choose choices to cloose happy or be cranky. Or be sad, or bitter or elated. By I see no joy in being wasting time. Even in sadness. Sometimes I have to stop and say to dan sorry for being short, when trying to do small things I used to able to do. And he smiles, and he hugs me, and we kiss. Life really is basic. We try to give grace, hug, thank all the time, no thing is too small. This journey is clearly dufty, but I love it too. The challenge, the exploration, and the beauty. </span></div>
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<span style="font-family: inherit;">I am so happy to be here on Earth. Thank for helping me facilitate this dream, of life. I am loving you.</span><br />
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Unknownnoreply@blogger.com28tag:blogger.com,1999:blog-6951027584834725236.post-10241679385104096622017-03-18T18:41:00.000-07:002017-03-18T18:41:06.214-07:00Snake Charmer <div dir="ltr" style="text-align: left;" trbidi="on">
This is Dan,<br />
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We decided to venture away from the beach today and went the opposite direction into the hills for a quick hike. It was about a 20 minute drive, which is enough of a challenge for Jess in itself, then we proceeded to walk for another 30-45 minutes. We were on our way to a lookout point, when our hike was abruptly cut short by the familiar, but still terrifying, rattle of a rattlesnake. We both have had encounters with rattlesnakes before which helped us determine what was going quickly. It was sunbathing on the side of the trail and did not appreciate the intrusion. Luckily it gave us plenty of warning and we were more then happy to simply turn around and proceed back the way we came. Jess was walking in the front (to show her independence) and did a good job of recognizing what was happening by standing still, but did not have the dexterity to walk backwards or to turn around abruptly. I picked her up (probably rougher then i intended) and pointed her in the direction we had just came from. We continued for rest of our hike without any more excitement, but did appreciate the change of scenery and the challenge of walking off road. Between the driving, hiking and the excitement of the snake, Jess was pretty drained when we got back and shortly took a nap. I think if anything, the snake was simply reminding Jess that she should not overdue things and should probably head home to rest up. If only Jess listened to me as intently as she does a snake.<br />
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6951027584834725236.post-69107285719728385012017-03-17T21:09:00.002-07:002017-03-17T22:59:35.131-07:00Is This Your Brain On Drugs?<div dir="ltr" style="text-align: left;" trbidi="on">
This is Dan,<br />
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During these past few days of recovery Jess has experienced some strange phenomena. She felt it necessary to describe to people what was going on even though she did not really understand it herself. Often during the night Jess has manifestations of things occurring that are not actually happening. She will have lengthy conversations with people who are not there. She will believe she had conversations with people who are there (me). She will often have the sensation of being back in the hospital. One particular time she was awaiting a blood draw and kept asking when the nurse was going to come in. Regardless of how many times I explained that she was not in the hospital anymore her questions and concerns lingered. Only once I told her that the nurse said there was not going to be any blood work tonight did she relax and fall asleep. It would appear that the trauma of being in the hospital is still very much with Jess. Getting her Blood drawn was always a source of apprehension due to the fact that she had categorically difficult veins to puncture. Because of this she would experience a tremendous amount of pain while the technician maneuvered the needle in her arm attempting to hit a vein.<br />
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Two nights ago, I woke to find her awake in bed. We spoke for a few moments and I could tell that she was not exactly 100% in the here and now, with her believing she was at the hospital again. She calmly asked me a question that quickly cleared the fog from my head and woke me up. "Are they going to hang me?" she asked. I assured her that no one wanted to hang her and she responded with another equally calm question "Am I going to hang myself?" she asked slightly confused. Again I assured her that she did not want to hang herself and that nobody else wanted to hang her either. "Then why is there a noose?' she said to me as she pointed to an area somewhere above the foot of the bed. Again, I assured her that there would be no hanging of any kind, which seemed to satisfy her, and she went back to sleep. This is the conversation I remember the most because of the strange topic, but there are many perceived conversations that she has during these odd hours on the fringe of sleep. She can remember them in the morning but needs some prompting to recall the details. Whether it is the vast amount of drugs she is taking or some new addition to her life caused by the brain surgery we are not yet sure. She is confused and fascinated by this new development. I think it stems from her curiosity. How can the brain create such vivid actions without one being aware of it? <br />
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On to a new topic..<br />
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Jess is continually getting better and better. As we expected, some things are coming much quicker then others. Her walking has improved drastically, to the point where there is hardly a noticeable mis-step or awkward stride. Uneven terrain can cause some apprehension, and the stamina of her healing brain cannot keep up with her legs, but overall it has, and continues, to improve dramatically. Her vocabulary continues to become more elaborate and her word finding problem is decreasing steadily. We are working on dexterity activities for her right hand and although improving, Jess is still operating strictly left handed. Some words and letters are slowly coming back, but they are hit or miss with no logical pattern that I can decipher. In all, Jess is taking it in stride and with a tremendous amount of grace. She is not attempting to constantly break through these barriers, but rather letting skills come back naturally as her healing progresses. This was something we had difficulty with after the previous surgeries. She felt that if she worked hard enough things would come back to her. We realized that if the brain was not ready for a particular skill it did not matter how hard you tried to learn it. It is the equivalent of breaking your leg and trying to run before the bone is healed.<br />
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Starting on Monday we begin our follow up appointments at UCLA. We will be meeting with radiologists, neurosurgeons, neurosurgeon assistants, oncologist and many more. We should hopefully get more information on the pathology of Jess's tumor. Up to this point it has been wonderful to solely be focused on Jess getting better without any other distractions or major questions looming over our heads. We always appreciate more information to help us make our decisions, but it was nice to have some time to breath. Anyway, next week we will have more information to provide you with as to what direction we will be heading from here.<br />
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As always, we appreciate everybody's support and Jess wants everyone to know that she can "feel everybody's love and prayers, and it carries me"<br />
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It does not feel like rehab when you get this as your walking path, but between walking in the sand and traversing over rocks it is a great exercise for her to get her coordination back.<br />
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Unknownnoreply@blogger.com7