tag:blogger.com,1999:blog-327455962024-03-06T15:01:48.982-05:00Laughing All the Way... Through Chronic IllnessJust another mid-life crisis with cancer, stem cell transplant, teenagers, and the occasional unexpected speed bump. Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.comBlogger88125tag:blogger.com,1999:blog-32745596.post-88173118191377890902013-09-10T11:34:00.000-05:002013-09-10T11:34:29.148-05:00September is the month for Blood Cancer Awareness<br />
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Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com0tag:blogger.com,1999:blog-32745596.post-11416919251685328482013-09-09T11:12:00.001-05:002013-09-09T11:12:11.231-05:00Some Life Lessons Take a Lifetime<h3>
<span style="font-family: Trebuchet MS, sans-serif;">Patience and Pacing</span></h3>
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<span style="color: #38761d; font-family: Trebuchet MS, sans-serif;"><i>If you let go a little, you will have a little peace.</i></span></div>
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<span style="color: #38761d; font-family: Trebuchet MS, sans-serif;"><i>If you let go a lot, you will have a lot of peace.</i></span></div>
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<span style="color: #38761d; font-family: Trebuchet MS, sans-serif;"><i>If you let go completely, you will know complete peace and freedom.</i></span></div>
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<span style="color: #38761d; font-family: Trebuchet MS, sans-serif;"><i>Your struggles with the world will come to an end.</i></span></div>
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<span style="color: #666666; font-family: Trebuchet MS, sans-serif;">~ Ajahn Chah, <u>A Still Forest Pool</u></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i>I believe that challenges (including people) show up in life because there is something I need to work on, learn, or accept.<span style="background-color: white;"> </span></i><i><span style="background-color: white;">Sometimes I'm an exceptionally slow learner.</span></i></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white;">Patience and self-pacing have never been my strong suit. </span><span style="background-color: white;">I like to live fully and make the most of every heartbeat: no regrets.. don't take life for granted.. live out loud.. expand my comfort zone.. learn something everyday.. help others.. push through fears.. you get the picture. </span><span style="background-color: white;">Living with urgency has served me well. I've always had more interests than time. I lived a full, active life; I</span><span style="background-color: white;"> was highly productive and able to achieve many things. Sure, I'd crash periodically. But I could always recover and carry on. </span></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Pacing for Dummies</span></h3>
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white;">Then along came blood clots and Polycythemia Vera... my body said "No more!" to my career in community development at a particularly difficult time in the real estate and lending markets (circa 2007). I went from fast-forward to the ICU. No one saw it coming. </span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikfYuDOs-OrCTTyNXYLpX40S1sdW1RHCtbIXo-FhyphenhyphenldaYaNuu8lINaf1W_RwXIFDxb4AWJuVgFZNYDyiq7dD5QfSWwNoJA0cvAIvhoi3psIj7CyTpVdGwQFIAOJXhu56ahlBamWA/s1600/rec-post-it-note-to-do-list-07-25-11-md.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikfYuDOs-OrCTTyNXYLpX40S1sdW1RHCtbIXo-FhyphenhyphenldaYaNuu8lINaf1W_RwXIFDxb4AWJuVgFZNYDyiq7dD5QfSWwNoJA0cvAIvhoi3psIj7CyTpVdGwQFIAOJXhu56ahlBamWA/s200/rec-post-it-note-to-do-list-07-25-11-md.jpg" width="200" /></a><span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white;"><br /></span></span>
<span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white;">It took my body more than 3 months to recover from the surgery and my normal energy never returned. When I went back to work, I was hard-pressed to work 8 hours; I would collapse on the sofa as soon as I got home. Less than a year after the surgery I had to resign from my job. I was crushed!</span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white;">I then kept my brain active with some part-time consulting and a lot of volunteer work that had flexible timelines. I also got more involved with my kids' activities. </span></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white;">I believe the illness occurred to make me slow down and to re-direct me to be more present for my children during the teen years. I became the mom that could cart smelly kids to/from sports practice and help at school functions that took place during business hours. It became a gift for my soul. </span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white;">Pacing for Big Dummies</span></span></h3>
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white;">When I pushed through the extreme fatigue, headaches, and other symptoms of the <a href="http://www.mpnresearchfoundation.org/" target="_blank">Polycythemia Vera</a>, the Universe devised a new challenge: </span><span style="background-color: white;"><a href="http://www.behcets.com/" target="_blank">Behcet's Disease</a> (a rare auto-immune disorder). </span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The physical manifestations were excruciatingly painful. Both the disease and the treatments caused severe physical issues that limited my mobility. For a time I needed a cane to walk, couldn't climb stairs, and certainly didn't leave the house unless absolutely necessary. I gained 60 pounds (and had the steroid "moon face"). I was so miserable, self-conscious and depressed. I became resigned that old age wasn't in my future. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">That slowed me down big time. I tried to make the most of "good days" even though a productive day would cost me a couple of days in bed afterwards. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Apparently, that wasn't enough.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Patience and Pacing for Obtuse Big Dummies</span></h3>
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<span style="font-family: Trebuchet MS, sans-serif;">This February came the curveball we didn't anticipate: aggressive <a href="http://www.myelofibrosisawareness.org/" target="_blank">secondary myelofibrosis</a>. My bone marrow is no longer able to produce enough blood. Without a blood stem cell transplant, I could look forward to maybe two years of a transfusion-dependent life. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Since none of my siblings "matched" me, we put our hopes and faith in the US and International Marrow Donor registries. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The waiting was a real test of patience. I felt like the crocodile in Peter Pan who swallowed the clock: tick tock, tick tock, tick tock pounded in my head.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Then my chance for a miracle: a 22 year old young man from Germany is my perfect match! </span><span style="font-family: 'Trebuchet MS', sans-serif;">Talk about a 2nd chance!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><b>45 Days Post-Transplant</b></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The "typical" allogeneic transplant (donor cells) shows engraftment between days 10 - 25 after the transplant. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLFCZk9GhzyKYaeD_lXQuIrebhffzXbGUGNNat1-vLVNgK8QutCqPhxqkn0cFffBoU5HXHSI8PzMiCH1da7GolsbvTmuysvSggSPZ6CllllpfLZz6I_hajg_pS1rM3pBjviVjbEA/s1600/Infinity-Time1.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="119" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLFCZk9GhzyKYaeD_lXQuIrebhffzXbGUGNNat1-vLVNgK8QutCqPhxqkn0cFffBoU5HXHSI8PzMiCH1da7GolsbvTmuysvSggSPZ6CllllpfLZz6I_hajg_pS1rM3pBjviVjbEA/s200/Infinity-Time1.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">What is time anyway?</span></td></tr>
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<span style="font-family: 'Trebuchet MS', sans-serif;">My new stem cells are still not fully-engrafted. The whites are all donor cells. But they aren't producing platelets nor red cells yet. I'm still transfusion dependent; I need platelets every week and red blood cells every couple of weeks. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The doctors and clinic staff remind me that it will take a lot longer because my bone marrow is hard (full of fibers), making it difficult for the stem cells to find a place to settle in. Over time, the bone marrow should return to its original spongy form (at least enough for a successful transplant). </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Here is where my patience is thin. Objectively I know that my body is starting over ~ in producing blood to support the organs. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The feeling of helplessness and lack of control can be overwhelming some days. I try visualizing spongy marrow, talk to my precious donor cells, and count my numerous blessings. I'd eat broccoli and brussel sprouts if it would help (they would need to show me studies first). </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCvh6wpu80TZ01hwFGkFm22NSulunKxGZPphd5WLxWowp8OmcIM3K1zFYYIv2EDRQ6HSKVoMxBwL7DcVj8rx1lidYjL0_HW8wTauTsCqrvOOX2L3ygFX32_i36U1-hLm80zd4X5Q/s1600/DSCN4741.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCvh6wpu80TZ01hwFGkFm22NSulunKxGZPphd5WLxWowp8OmcIM3K1zFYYIv2EDRQ6HSKVoMxBwL7DcVj8rx1lidYjL0_HW8wTauTsCqrvOOX2L3ygFX32_i36U1-hLm80zd4X5Q/s200/DSCN4741.jpg" width="150" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I do know it will all be worth it in the end. And I try my best each day (some day's "best" is better than others). One thing that helps A LOT is reinforcement from family, friends, and the medical staff that this is just part of the deal; I haven't done anything wrong; and resting is the best thing to give those fighting stem cells the chance to dig in and do their jobs.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I'm hoping to become a calm, cool, collected person through this experience. One who feels and exudes patience. One who enjoys life reasonably without creating physical burnout the next day. Patience and Pacing. These are my lessons.</span></div>
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Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com1tag:blogger.com,1999:blog-32745596.post-37141338821429060092013-08-31T12:00:00.000-05:002013-08-31T12:03:58.372-05:00Life Saving Eagle Scout Project: Building the Marrow Donor Registry<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6xqepe24jFEPSBU0My_fg2H5wAD069b8ycuPSMbQUa0PhtkgqwO7siL2GyAQQ8HT0y6CNupSNlNqht6rrm3IYNyhRX1PTaromklE3qiosT_0ptlgFHyzceDmwC_0DznKapOdEyg/s1600/21653_10201742548428731_1697871083_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6xqepe24jFEPSBU0My_fg2H5wAD069b8ycuPSMbQUa0PhtkgqwO7siL2GyAQQ8HT0y6CNupSNlNqht6rrm3IYNyhRX1PTaromklE3qiosT_0ptlgFHyzceDmwC_0DznKapOdEyg/s200/21653_10201742548428731_1697871083_n.jpg" width="132" /></a><span style="font-family: Trebuchet MS, sans-serif;"></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="font-family: Trebuchet MS, sans-serif;">Tween Saves Lives</span></span></h3>
<span style="font-family: Trebuchet MS, sans-serif;">When the time came for my nephew Patrick to design a project for his Eagle Scout, he decided to take on something that is usually done by adults. He organized a registry drive to get healthy adults to join the National Marrow Donor Registry. Did I mention he is 12 years old?</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Creative Collaboration</span></h3>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxCih4oHhH7HPN8DmBhtUqhyphenhyphenBQuYXwSTZ1xuC4pz-VfFpFzyhyphenhyphenCD9TIvKAiWxettgNUhuFpFMbIWb36F4Fz-nRaMp8O2hYql7YX2xGQOf-b3Uq0-pnFNg5YHFNptsleeeGN6bsoQ/s1600/21653_10201742548468732_1441260414_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="132" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxCih4oHhH7HPN8DmBhtUqhyphenhyphenBQuYXwSTZ1xuC4pz-VfFpFzyhyphenhyphenCD9TIvKAiWxettgNUhuFpFMbIWb36F4Fz-nRaMp8O2hYql7YX2xGQOf-b3Uq0-pnFNg5YHFNptsleeeGN6bsoQ/s200/21653_10201742548468732_1441260414_n.jpg" width="200" /></a><span style="font-family: Trebuchet MS, sans-serif;">Patrick worked with <a href="http://www.getswabbed.org/" target="_blank">DKMS Delete Blood Cancer</a>, the nonprofit registry that provided the swab kits and educational materials. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When considering ways to get the most donors possible, he looked to see what big events were coming up that would already bring people together. When he saw that the <b><a href="http://www.waterford-wi.org/fm4m_hmmm.html" target="_blank">Full Moon Four-Miler</a> race</b> was coming up, he contacted race officials and asked if he could run the swab drive during the race. They readily agreed. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><i>"I figured healthy people run, so that would be a good event."</i> Patrick told me. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Then Patrick approached local businesses to promote the event. One man told him he would try to stop by the event, but he had a busy schedule. Patrick said, "I've got swab kits in my mom's car. Do you want to join now?" The man said yes and Patrick got him registered.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">He designed flyers and distributed them all over Waterford. He and his family talked it up at ball games, at the park, and anywhere people with healthy stem cells would be.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-p604E9eCtM1f9sYPrcqQkfAJXY-E3PiqO30FFDAqxSG3jUS4zennIJr85Xv5iQnX2wBsjmn_EPI3yFkS2Ze_C0w-gII0W6azC_-kUYU4euLdyClg3X0ReBpergYeSAiDHJdLBg/s1600/970837_10201742707432706_484566024_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-p604E9eCtM1f9sYPrcqQkfAJXY-E3PiqO30FFDAqxSG3jUS4zennIJr85Xv5iQnX2wBsjmn_EPI3yFkS2Ze_C0w-gII0W6azC_-kUYU4euLdyClg3X0ReBpergYeSAiDHJdLBg/s320/970837_10201742707432706_484566024_n.jpg" width="213" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSzhVz7gp4v3kRYQbhKLqG_nJF1PG1ZV8Lw0kBiUk_8a0VBTasWSQwLjlBlccWWNM93y03cXilJvUua5slnvbV9N6mkIi_v0OPysSLDsXliqlRh4RkPemSsO7xAPPe7Qe3YGz7Ww/s1600/8649_10201742274701888_855105739_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSzhVz7gp4v3kRYQbhKLqG_nJF1PG1ZV8Lw0kBiUk_8a0VBTasWSQwLjlBlccWWNM93y03cXilJvUua5slnvbV9N6mkIi_v0OPysSLDsXliqlRh4RkPemSsO7xAPPe7Qe3YGz7Ww/s320/8649_10201742274701888_855105739_n.jpg" width="320" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Flyers like these were distributed throughout the town, at ball games, and to neighbors and friends.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Patrick recruited volunteers from his Scout troop, neighborhood, and ball team (including his parents and 3 siblings) and they set off for a big day of public education and donor recruitment. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">"Here's a bracelet! Go to the blue tent and save a life!"</span></h3>
<span style="font-family: Trebuchet MS, sans-serif;">The kids walked around with signs and handed out red rubber "delete blood cancer" bracelets and guided people to the swab tent. Who can say no to adorable youth?</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJihZmGtzzFhsg3khtBcKyhF_Jo9eNEGn1UnEV5tiBnl1TZW2S7Q7iGQiaVeDtpcDuEURE3V91BtCpLU9NKxmrKdnOxTn0zWOx5_KQ9KSNxD-AMqIH0fXNZdnUJMN1Hvvn27Wt3A/s1600/47718_10201742451146299_1664046829_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJihZmGtzzFhsg3khtBcKyhF_Jo9eNEGn1UnEV5tiBnl1TZW2S7Q7iGQiaVeDtpcDuEURE3V91BtCpLU9NKxmrKdnOxTn0zWOx5_KQ9KSNxD-AMqIH0fXNZdnUJMN1Hvvn27Wt3A/s320/47718_10201742451146299_1664046829_n.jpg" width="320" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6v0q9mucMpNOLhzJNNaqntLStnkhMg1rpsJaJJleSRZo-qgGHpBJhsAUueHAp3J53JK4we8OJePpBrD-f6Zh4FeSY9DBfoKU27AQspDr5BahVPrPXjrA_yXzXtjsnJGBDGdIwvg/s1600/8649_10201742274861892_498819435_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" height="132" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6v0q9mucMpNOLhzJNNaqntLStnkhMg1rpsJaJJleSRZo-qgGHpBJhsAUueHAp3J53JK4we8OJePpBrD-f6Zh4FeSY9DBfoKU27AQspDr5BahVPrPXjrA_yXzXtjsnJGBDGdIwvg/s200/8649_10201742274861892_498819435_n.jpg" width="200" /></a><span style="font-family: Trebuchet MS, sans-serif; margin-left: 1em; margin-right: 1em; text-align: center;">Runners in the race and spectators stopped by the tent to learn more about marrow/stem cell donation. A few people shared stories of loved ones who were saved by donors. </span><br />
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<span style="clear: right; float: right; font-family: Trebuchet MS, sans-serif; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaLBnVk06lgm75DSO6thZP-CEuKRFadaOynUSZk7aS4F_-xjBkqoQRMx7XkQe2kJ4PqbHo0bpMjWFKkj2FOplqE49VOcn5P0_m2pzqf9Q0tsUAoc7lJMQ65yNGWVzh2DlDN7TsfA/s200/944606_10201742618270477_1454913360_n.jpg" width="200" /></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwfG2LqNe8wXuvjEB1u-_j4ELSVXIP0M6-SFBUvjBH_n-KNgToWJaJpW65D7i9MWOWx-QLD1AWRQ2-88jEK2QahgmqCTy6jOvRTsRnHwLbF3iPPpuCWXBEZylwDQxEPmVkJkvt6g/s1600/1012106_10201742520508033_1679746974_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwfG2LqNe8wXuvjEB1u-_j4ELSVXIP0M6-SFBUvjBH_n-KNgToWJaJpW65D7i9MWOWx-QLD1AWRQ2-88jEK2QahgmqCTy6jOvRTsRnHwLbF3iPPpuCWXBEZylwDQxEPmVkJkvt6g/s320/1012106_10201742520508033_1679746974_n.jpg" width="320" /></a><span style="font-family: Trebuchet MS, sans-serif;">The winner of the race joined the Registry after the awards ceremony. He posed with the young drive organizer here.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Donors were invited to sign the <b>"Heroes On Call"</b> poster. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvD9TzXYKOeQiqCvLOSNGG0DiDgy3T1dEQBZzWyP_kiZ8yFsyLnyTwyygZDVzjhVL-am2xhXPdLLSY5bZS9AuxawzBCsP7kDjTMBYEH_7TRsp7qP9cuY1gcrOaIxj9Cdg_ASDvRA/s1600/100_4393.JPG" imageanchor="1" style="clear: right; display: inline !important; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvD9TzXYKOeQiqCvLOSNGG0DiDgy3T1dEQBZzWyP_kiZ8yFsyLnyTwyygZDVzjhVL-am2xhXPdLLSY5bZS9AuxawzBCsP7kDjTMBYEH_7TRsp7qP9cuY1gcrOaIxj9Cdg_ASDvRA/s320/100_4393.JPG" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMUCm_NUN0B7gkJMNBz1W_-Emo5C0Z9EnOS_xvIQomJZU5WusP00Vk4_KGq57XewiTZXm98nOiCUHBwi6NxfWtbe0l_X0W6tcC-z11TRSO_A8L8iMzweMmMBfJaJSjlK_WJZjVvQ/s1600/1002348_10201742338663487_1762264203_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMUCm_NUN0B7gkJMNBz1W_-Emo5C0Z9EnOS_xvIQomJZU5WusP00Vk4_KGq57XewiTZXm98nOiCUHBwi6NxfWtbe0l_X0W6tcC-z11TRSO_A8L8iMzweMmMBfJaJSjlK_WJZjVvQ/s320/1002348_10201742338663487_1762264203_n.jpg" width="320" /></span></a></div>
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<span style="font-family: 'Trebuchet MS', sans-serif;">I'm told that 87 people joined the registry at the Full Moon race and another dozen or so joined before and after the event. </span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">And hundreds more learned about or were reminded of their power to save lives. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Patrick says he will join the registry when he turns 18. But he's not waiting to start saving lives! </span><br />
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Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com0tag:blogger.com,1999:blog-32745596.post-5299200796934600222013-07-27T08:19:00.002-05:002013-07-27T08:19:38.895-05:00Stem Cell Transplant Journey<span style="font-family: Trebuchet MS, sans-serif;">Over the last few weeks, I've focused my stem cell transplant experience through the <a href="http://www.caringbridge.org/visit/marinapeed" target="_blank">CaringBridge</a> website. I'll continue there as it seems easiest for my extended family to keep up. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">You are welcome to follow the journey there. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">When my energy picks up, I will resume improved (hopefully) writing here. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Thank you and cheers!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Marina</span><br />
<br />Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com0tag:blogger.com,1999:blog-32745596.post-45329289916006153252013-06-26T19:37:00.000-05:002013-06-26T19:37:13.592-05:00STEM CELL TRANSPLANT STEP 1: MEDICAL EVALUATION <h3>
<span style="font-family: Trebuchet MS, sans-serif;">DONOR NEWS!!</span></h3>
<span style="font-family: Trebuchet MS, sans-serif;">I learned this week that my life saving blood stem cell donor is a 22 year old man who lives outside the United States. He has agreed to the stem cell collection schedule my doctor proposed. How cool is that?! Young, healthy stem cells ~ it doesn't get any better. <i>As a patient,</i> I am grateful that this young man agreed to take time out of his summer to save my life. <i>As a mother,</i> I feel a sense of pride that this young person learned about the need for bone marrow/stem cell donors, joined the registry, and agreed to help a stranger in another country. Both my kids say they hope they can do for someone what this young man is giving me. I get teary every time I think about this.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">As people share wishes, prayers, and positive thoughts for my health, I ask that you include my selfless, nameless donor in those efforts. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">COUNTDOWN TO TRANSPLANT</span></h3>
<span style="font-family: Trebuchet MS, sans-serif;">We are ONE MONTH from my Re-birthday! The process begins with a thorough Medical Evaluation. </span><span style="font-family: 'Trebuchet MS', sans-serif;">Tomorrow (June 27, 2013) is my big test day.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">7:00 am: Pre-BMT labs, Vitals</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><i> I was told they will draw the blood from my Power Port, so I take that to mean they need a lot of blood.</i></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">7:30 am: Drink jug of Barium. What a refreshing treat!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">8:00 am: Bone Marrow Biopsy [need another 'tag line' for my rump!]</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">8:30 am: Meet with Clinical Health Psychologist (this one is most worrisome ~ what if they realize I'm a bit nuts?)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">9:00 am: Meet with Research</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">10:00 am: Pulmonary Function Test w/DLCO</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">10:30 am: Meet with Atlanta Blood Services re: my need for platelet donors</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">11:00 am: Register for CT scans</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">11:30 am: CT scan of Brain / Chest / Abdomen / Pelvis</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">1:00 pm: Lunch (probably the highlight of my day)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">1:30 pm: Register for Echocardiogram/EKG</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">2:00 pm: Echocardiogram</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It is no secret that among my numerous quirks, I have 'text anxiety.' </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Whether it's my car's emissions test, the vision test to renew my driver's license, or weekly blood tests, I get a rush of the 'heebie jeebie jitters'. This may not yet be a recognized technical term, I think you know what I mean. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">To calm those jitters, I mindfully picture the test administrator in his/her underwear and focus on my breathing. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">In this situation, I recognize that all these tests will form a baseline of the health status of all my systems pre-transplant. My biggest threat to surviving the transplant is organ failure. The results of these tests enable the doctors to anticipate issues that may arise during chemo and post-transplant and plan accordingly. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I will find out the results of all these tests on my Education Day, scheduled for July 10th.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">As the song goes, the waiting is the hardest part.</span><br />
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<br />Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com1tag:blogger.com,1999:blog-32745596.post-19756426020954132112013-06-26T08:00:00.000-05:002013-06-26T08:00:01.170-05:00Jakafi to the Rescue<br />
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<span style="font-family: Trebuchet MS, sans-serif;">Myelofibrosis Treatment Banishes Behcet's... Coincidence? I think Not</span></h4>
<span style="font-family: Trebuchet MS, sans-serif;">About one month after my Autumn 2009 PV (polycythemia vera) diagnosis, I started getting unexplainable lesions in most inconvenient locations (I've shared this over a year ago). After several months of excluding many possibilities, it was diagnosed as "<a href="http://www.behcets.com/" target="_blank">Behcet's Disease/Syndrome</a>" or "Probably Behcet's" in March, 2010. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I found it odd that I would acquire an MPN (myeloproliferative neoplasm) and an auto-immune disease around the same time (mid-40's). My internist said anything is possible; my hem/onc and rheumatologist said there was no connection. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">While the medical literature didn't show any links with Myeloproliferative Neoplasms (MPNs) and auto-immune diseases, the question persisted in my mind.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Chemical Reactions or Physiological Changes?</span></h4>
<span style="font-family: Trebuchet MS, sans-serif;">I took Hydroxyurea (HU) to manage the polycythemia vera, along with occasional phlebotomies. </span><span style="font-family: 'Trebuchet MS', sans-serif;">When the Behcet's became unbearable, I was treated with prednisone for over a year to manage the flares. I then switched to <a href="http://www.remicade.com/" target="_blank">Remicade</a> infusions when I couldn't stand all the side effects of prednisone. The Remicade worked like a dream for six months. The last six months of using it, however, I endured debilitating inflammation and joint pain. My rheumatologist pointed to the PV and my hem/onc pointed to the Behcet's. Even getting second opinions in both fields kept me in a painful mobius loop. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Last November, a gastroenterologist friend said that the inflammation symptoms were consistent with what some of his Crohn's patients experience after a time on Remicade. I was in a conundrum: which pain do I prefer -- the hands, feet, and joint pain or the lesions pain in other equally important body parts. It was a false choice. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">At the same time, all my blood counts were on a slow but stead descent and we knew something new was happening. </span><span style="font-family: 'Trebuchet MS', sans-serif;">I quit taking the Remicade and decided to use prednisone when a flare was just beginning. It took about eight weeks for the Remicade to fully leave my body.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Enter <a href="http://www.jakafi.com/" target="_blank">Jakafi</a>... After being diagnosed with post-PV <a href="http://www.myelofibrosisawareness.org/" target="_blank">Myelofibrosis</a> in February 2013, I began a low-dose regimen of Jakafi to shrink my spleen, ease bone pain and night sweats.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">My last Behcet's encounter was the first week I started Jakafi. I hit it with prednisone to keep it from going full flare. It subsided within 4 days. I haven't had another flare since.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Apparently, there has been research on the JAK pathways and their relationship to auto-immune diseases. </span><span style="font-family: 'Trebuchet MS', sans-serif;">Pfizer now has TV ads for Xeljanz (tofacitinib), a "JAK inhibitor for Rheumatoid Arthritis." RA is another auto-immune disease.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><i>I realize that I am but a sample of one, but this experience gives me solace that my hunch that these two rare/oddball diseases share something in common. The JAK pathway!</i></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When Focus Needs Perspective </span></h4>
<span style="font-family: Trebuchet MS, sans-serif;">We are living in a most remarkable time of scientific discovery. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Researchers are able to focus on changes at the molecular level and tie to proteins, genes, kinases and other terms I can barely pronounce. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Many times I've been frustrated by the very narrow scope of this research because it doesn't help me NOW when I'm hurting. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I must remember the adage: Follow the money. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Research funding is tied to very specific research questions and tight timeframes, influenced by the funder(s). Funding is extremely competitive. And those research dollars rarely fully-fund a project, much less encourage researchers to follow new paths that emerge as they do their work. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So blood cancer researchers continue their diligent work and auto-immune disease researchers continue their work. All the work is vital to understanding the disease processes which will ultimately inform us on effective prevention strategies. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">At the same time, a funding mechanism that supports tying all this knowledge together must occur to make the whole larger than the sum of its parts.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><a href="http://www.standup2cancer.org/" target="_blank">Stand Up to Cancer</a> is a funder of innovative and collaborative research and information sharing among experts of different types of cancers. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Perhaps it's up to patients/trial subjects (whole beings) to share our experiences, observations and questions. We can help the subject matter experts "connect the dots" in ways that may be outside a study protocol, but useful nonetheless.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">After all, we are not only <i>the patients</i>, we are <i>the consumers</i> of the eventual treatment or cure.</span><br />
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Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com2tag:blogger.com,1999:blog-32745596.post-23748318775576667552013-06-13T18:00:00.000-05:002013-06-13T18:00:00.791-05:00I Blame the Hemoglobin<span style="font-family: Trebuchet MS, sans-serif;">There seems to be an inverse relationship between my Hemoglobin level and Anxiety level. </span><span style="font-family: 'Trebuchet MS', sans-serif;">Hemoglobin is a protein in the red blood cell that carries oxygen through the body. </span><span style="font-family: 'Trebuchet MS', sans-serif;">As the hemoglobin decreases, I become more easily annoyed -- with myself and everyone around me. </span><span style="font-family: 'Trebuchet MS', sans-serif;">I get the anemia double-whammy from the alpha thalassemia trait (red cells are smaller and oddly shaped) AND low hemoglobin count. </span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">The difference between me with hemoglobin at 12.0 and 9.5 is 'Marina the Upbeat, Can-do Gal' and 'Marina the Grouch.' 12.0 is fun to be around; 9.5 and below is best to avoid.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The filter between my thoughts and my voice has thinned over the course of prolonged illness. I used to be a pretty tactful person, able to smooth ruffled feathers and still get a point across. Active listening, patience, body language and good humor are reliable communication techniques. I've studied non-violent communication and practiced appreciative inquiry as a part of my spiritual growth and leadership development. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Yet when the hemoglobin dips below 9.5, all bets are off. </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">Active listening morphs into "what the heck were you thinking??" </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">Patience evaporates in the midst of household procrastination (isn't it a good idea to save big clean-up projects for the hour before company is to arrive?). </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">Humor is replaced with sarcasm: "of COURSE I know where your [insert any random item] is. Let me turn on my magical internal GPS device that tracks items I've never seen or used and find it for you." </span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">While I'm not quite ready to appear on the Jerry Springer show, it seems like I'm trying out the role. My gripes, rants, and sarcasm are not how I'd like to be remembered, especially by those who get the brunt of my mis-placed frustration ~ my loved ones. </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">If life is my Advanced Placement exam, I'm clearly not ready for graduation.</span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;"><b>I offered several "reasons" for my crankiness: </b></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">* teenagers are self-aborbed * </span><span style="font-family: 'Trebuchet MS', sans-serif;">it's the anemia talking </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">* 'no one' shares my sense of urgency * not enough oxygen to the brain </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">* we don't live in a barn * fatigue causes frustration</span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;"><br /></span>
<span style="font-family: 'Trebuchet MS', sans-serif;"><i>The correct answer may be "all of the above PLUS fear"</i></span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">When my blood levels are closer to normal, I feel good enough to keep busy with the kids, help with the marrow registry drives, and spend time with friends. I don't make time to contemplate the upcoming stem cell transplant.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">When the need for a blood transfusion approaches, I am so fatigued (this is different from feeling 'tired') that I physically cannot do as much. Climbing the stairs sets my heart pounding and I rely on the handrail to rest. I spend time in bed or on the sofa with hopes of 'recharging' enough to complete a basic household task.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">When I'm forced to be still, questions and thoughts about what lies ahead bubble up in my head. Will I get a matched unrelated donor? Will it come through in time? </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">What happens if the myelofibrosis progresses too fast to acute leukemia before a donor is found? </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">What kinds of complications could happen during transplant process? </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">My organs have endured a lot of stress the last 6 years with the blood clots and medications. Will I be strong enough to over come the challenges? </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">How will my marriage change? What about Alex's senior year in high school ~ how will I keep track of him? What about Katrina's first year in college? I've seen enough movies on the Hallmark channel to know that mom's illness can reek havoc on kids' academic performance.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">These thoughts remind me that control is truly an illusion, albeit one of my favorites. The feelings of vulnerability and powerlessness over my future stir an inner rage. It is not my happy place. I've read enough pop-psychology books to know that anger is a mask for fear. No amount of scenario planning can sooth the ever-present frustration that lies beneath a seemingly smooth, confident veneer.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">It seems that I can accept the uncertainties when I'm busy. I comfort myself by doing what I can to help others, be present with my family and friends. I embrace my positive outlook and an </span><span style="font-family: 'Trebuchet MS', sans-serif;">inexplicable but real</span><span style="font-family: 'Trebuchet MS', sans-serif;"> sense of peace that everything will work out for the best. </span><br />
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Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com2tag:blogger.com,1999:blog-32745596.post-9106409667910723872013-06-12T18:20:00.000-05:002013-06-12T18:21:47.946-05:00The Call and The Twitter<h2>
<span style="background-color: white; color: #37404e; line-height: 18px; text-align: left;"><span style="font-family: Trebuchet MS, sans-serif; font-size: large;">The CALL</span></span></h2>
<span style="background-color: white; line-height: 18px; text-align: left;"><span style="font-family: Trebuchet MS, sans-serif;">Yesterday afternoon I received "The Call" we've been hoping for. </span></span><span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">I had to pull the car off the road so I could concentrate. It was my stem cell transplant coordinator. She said that there are 2 perfect matching donors (10 for 10 match of HLA tissue sequence) for me. One of them is bound to come through for me so we can transplant next month (July). We should have confirmation and a scheduled date sometime next week. </span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">Of course, nothing is final until it's final. But we are over the moon happy with anticipation.</span></span><br />
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<span style="color: #37404e; font-family: Trebuchet MS, sans-serif; font-size: large;"><span style="line-height: 18px;">The TWITTER</span></span></h2>
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">On my way home, I managed to reach Robert, my mom, my dad, and my siblings by phone to share the news. When I returned home, I gathered Katrina and Alexander to let them know. I then told some dear friends. </span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">I was too excited yet too tired to cook, so the kids and I went out to dinner. </span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">Before we place our food order, </span></span><span style="font-family: 'Trebuchet MS', sans-serif; line-height: 18px;">their phones began vibrating and beeping like they were about to explode.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">The kids were trying to ignore their phones and focus on me. Between their furtive glances and the sounds and vibrations from the phones, my curiosity got the best of me. "What is going on with your phones? Go ahead and check them," I said. </span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">"It's Twitter."</span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">"And Instagram."</span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">"Your news is getting re-tweeted all over the place, mom!"</span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">Just then, my phone started dinging with text messages.. </span></span><span style="font-family: 'Trebuchet MS', sans-serif; line-height: 18px;">Congratulations from friends who learned from their kids that I've got a match.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;"><br /></span></span>
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">My head started spinning. How could my news be tweet-worthy?</span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;"><br /></span></span>
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">I confess to be in a bit of shock and quite tired. Here is how I can answer the questions most of you have.</span></span><br />
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<span style="color: #37404e; font-family: Trebuchet MS, sans-serif; font-size: large;"><span style="line-height: 18px;">FAQs</span></span></h2>
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;"><b>Q: What do you now about your donor?</b></span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">A: I only know that this person has a big heart for others and our HLA sequence is a great match. We will be anonymous to one another for a year. I don't know gender, age, ethnic background, or where this person lives.</span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;"><b>Q: When will the transplant occur? Does the donor come to Atlanta?</b></span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">A: I should know the transplant date and prep schedule next week. The MUD (Matched Unrelated Donor) Coordinator at Northside Hospital will coordinate with the marrow donor registry with whom the donor registered (e.g., Be the Match or Delete Blood Cancer). The registry staff will communicate with the donor to determine timing and logistics and report back to the MUD Coordinator. The MUD Coordinator shares the info with my Transplant Coordinator who gives me the transplant schedule and plan.</span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">My hero (aka donor) doesn't leave his/her community. The donor will get a daily injection of Neupogen (filgrastim) to stimulate stem cell production for several days before the stem cells are </span><span style="line-height: 18px;">collected from the bloodstream. </span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">When the blood stem cells are collected, they are shipped to Atlanta immediately so I can receive them via transfusion the next day.</span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;"><b>Q: What happens between now and the transplant?</b></span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">A: I'm told my primary job is to remain healthy ~ no colds, viruses, infections. I need to learn to count backwards, too. </span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">- 3 Weeks: </span></span><span style="font-family: 'Trebuchet MS', sans-serif; line-height: 18px;">I will undergo a series of tests to check the condition and health of all my major systems. </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif; line-height: 18px;">- 2 Weeks: Meet with all medical personnel to go over test results, my care plan, what to expect, etc. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">- 1 Week: Prepare for Transplant Day with daily chemotherapy.</span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> My donor receives Neupogen shots to stimulate stem cell production</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> Day -1: Donor's stem cells are collected by apheresis; stem cells shipped to Northside Hospital.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">Day Zero: Transplant Day (also known as my "Re-birth day") </span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;"> I receive my donor's stem cells by transfusion.</span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;"><br /></span></span>
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">When I get the official transplant date, you can be sure I will be filling my calendar with lots of "to do's" ~ mostly around getting Katrina ready for college, Alex and his college applications, scheduling bills, etc.</span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;"><br /></span></span>
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">Also, I'm setting up a Caring Bridge page so we can keep anyone interested up on the latest in my big adventure.</span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;"><br /></span></span>
<span style="font-family: Trebuchet MS, sans-serif;"><span style="line-height: 18px;">I need a nap and a transfusion, so that's it for now.</span></span><br />
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<span style="color: #37404e; font-family: Trebuchet MS, sans-serif; font-size: x-small;"><span style="line-height: 18px;"><br /></span></span>Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com2tag:blogger.com,1999:blog-32745596.post-13258899233834294962013-06-02T18:31:00.000-05:002013-06-02T18:31:20.134-05:00Beating the Odds Starts with a Swab<br />
<h4>
<i><span style="font-family: 'Trebuchet MS', sans-serif;">When I began this journey 3 months ago, I was pretty confident that one of my four siblings would be my match (a 10 for 10 match of HLA-types; it's not about matching blood type). Each had a 25% chance, so wouldn't 1 of the 4 </span><u style="font-family: 'Trebuchet MS', sans-serif;">have</u><span style="font-family: 'Trebuchet MS', sans-serif;"> to match? That's not how probabilities work, I learned. </span></i></h4>
<h4>
<i><span style="font-family: 'Trebuchet MS', sans-serif;">I figured the Northern European ancestry on my mom's side would ensure several potential donors. Apparently our Greek ancestry is a bit more diverse than we thought. </span></i></h4>
<span style="font-family: Trebuchet MS, sans-serif;">My family and friends immediately jumped on my challenge, determined to find me a donor. <b><i><span style="color: #073763;">They</span></i></b></span><span style="font-family: 'Trebuchet MS', sans-serif;"><b><i><span style="color: #073763;"> have already run nine (9) Bone Marrow Donor registry drives</span></i></b> ~ in Houston, Tempe, Grand Rapids, and four here in Georgia.</span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;"><br /></span>
<span style="font-family: 'Trebuchet MS', sans-serif;"><i>My mom even brought donor registry kits to her retirement party yesterday in Dallas ~ I believe she swabbed 32 new willing donors! </i></span><br />
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<h2 style="text-align: center;">
<span style="color: #990000; font-family: Trebuchet MS, sans-serif;"><i><b><span style="font-size: x-large;">556</span></b> new healthy people have joined the </i></span></h2>
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<span style="color: #990000; font-family: Trebuchet MS, sans-serif;"><i>National Marrow Donor Registry </i></span></h2>
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<span style="color: #990000; font-family: Trebuchet MS, sans-serif;"><i>because of these efforts!</i></span></h2>
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<span style="font-family: 'Trebuchet MS', sans-serif;">Need for Marrow Donor Goes 'Viral'</span></h3>
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<span style="font-family: 'Trebuchet MS', sans-serif; font-weight: normal;"><span style="font-size: small;">My plight has hit social media! While I've been public about my journey, I struggle with asking for help for myself ~ especially from perfect strangers. </span></span><span style="font-family: 'Trebuchet MS', sans-serif;"> </span></h3>
<span style="font-family: Trebuchet MS, sans-serif;">Friends convinced me that a <b>Facebook</b> page would help promote awareness and organize volunteers. I've seen similar pages (<a href="https://www.facebook.com/GennysHopeFoundation?fref=ts" target="_blank">Genny's Hope Foundation</a> and <a href="https://www.facebook.com/HelpNaliniNow?fref=ts" target="_blank">Help Nalini Now</a>) that share a common goal: <i>to increase the number and diversity of healthy people registered to be bone marrow/blood stem cell donors. </i></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So now we have <span style="font-size: large;">"</span></span><a href="https://www.facebook.com/MarinaNeedsUs" style="font-family: 'Trebuchet MS', sans-serif;" target="_blank"><span style="font-size: large;">Marina Needs Us</span></a><span style="font-family: 'Trebuchet MS', sans-serif;"><span style="font-size: large;">"</span> to promote the marrow donor drives and blood drives that are organized in my honor across the country. </span><span style="font-family: 'Trebuchet MS', sans-serif;">We'll see how helpful it is and how it changes organically as conditions change.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">Donor drives have been done in partnership with <a href="http://www.ahepamarrow.org/" target="_blank">AHEPA</a>, <a href="http://www.bethematch.org/" target="_blank">Be the Match</a>, and <a href="http://www.getswabbed.org/" target="_blank">DKMS Delete Blood Cancer</a>. All the donor information feeds into the National Marrow Donor Program. </span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">Some use SignUpGenius, a free on-line volunteer organization site for community organizations to post volunteer opportunities. We learn as we go.</span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;"><br /></span>
<h4>
<span style="font-family: 'Trebuchet MS', sans-serif;"><b>Goal #1: Register 1,080 New Potential Donors </b></span></h4>
<span style="font-family: Trebuchet MS, sans-serif;">Since I always work best with a goal, I set my sights on adding 1,080 donors to the registry. </span><span style="font-family: 'Trebuchet MS', sans-serif;">Why 1,080? Because 1 in 540 people on the registry end up donating their blood stem cells to a patient like me, I'd like to pay it forward to cover a matching donor for me and one more patient. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I continue to be humbled when I see neighbors, friends, friends of friends, and parents & siblings of my kids' friends volunteering to work these donor drives, get swabbed, and talk it up in support of our efforts to increase the donor pool. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><i><br /></i></span>
<span style="font-family: Trebuchet MS, sans-serif;"><i>Helpful hint: students can earn volunteer / community service hours for their assistance with these efforts.</i></span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;"><b>Goal #2: Dispel the Myths</b></span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">I readily admit that I didn't know anything about bone marrow transplants until I met people with various MPNs (myeloproliferative neoplasms) that progressed to burn-out the bone marrow. </span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">What's worse that no information? BAD information!</span></div>
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<span style="font-family: 'Trebuchet MS', sans-serif;"><b><u><span style="color: blue;">A Friend In Deed for a Friend In Need</span></u></b></span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;"><i>None of this happens in a vacuum, and I certainly have not done much to make these drives happen.</i></span><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio9KDygN959vSSOh6dCUIlvugwP4nyeiydjPPvIrXoPhB-lE3k3ipSovXeQ7JwiyJpd3a7T3LBWS_oroq9eqw1yQR4ZM0UEqQNZhHEhwkc8R7bs9DEdhvOGAIaqyvU4UeBOS7y-w/s1600/LynnAgnes+head+shot.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio9KDygN959vSSOh6dCUIlvugwP4nyeiydjPPvIrXoPhB-lE3k3ipSovXeQ7JwiyJpd3a7T3LBWS_oroq9eqw1yQR4ZM0UEqQNZhHEhwkc8R7bs9DEdhvOGAIaqyvU4UeBOS7y-w/s200/LynnAgnes+head+shot.jpg" width="154" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Lynn Agnes, fearless friend</i></td></tr>
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<span style="font-family: 'Trebuchet MS', sans-serif;">I must take a moment to openly thank <span style="font-size: large;">Lynn Agnes</span> for taking on this challenge of finding my match. </span><span style="font-family: 'Trebuchet MS', sans-serif;">We haven't seen each other in quite some time, yet Lynn showed up to help with our big drive at Peachtree Ridge High School on May 10th. Lynn researched my illness, the transplant process, and how marrow donor matching is done. <i>During the drive at my kids' high school, she began brainstorming and calling people to schedule more drives.</i></span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">Lynn secured several drive locations in a matter of days: Gwinnett Chamber of Commerce, TPC Sugarloaf Country Club, Gwinnett Medical Center, Gwinnett Technical College, downtown Duluth (Georgia), and the Annunciation Greek Orthodox Church in Atlanta. And she has more activities in the works. </span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">Lynn inspires me and my family with her bold tenacity. She is teaching my kids how to take action when there is an urgent need. We know that her efforts will save lives.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><i>Thank you, Lynn!</i></span><br />
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Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com0tag:blogger.com,1999:blog-32745596.post-61935074727101906592013-05-13T08:01:00.000-05:002013-05-13T08:01:00.254-05:00We've Got Some Great Cheeks in Gwinnett County!<span style="color: #990000; font-family: Trebuchet MS, sans-serif; font-size: large;"><b>252 and Counting!</b></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">That's how many living angels came to Peachtree Ridge High School last Friday and joined the National Bone Marrow Donor Registry.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8RBM9tjQ7r6gKudZD57bq31DX34JjjstMXS2x10GVS5ZZpAn_nPA2EbPQV8_N0MbWCMGxUYRYDqbqLi0l1yRSh6Fx_pBCUGKTrd2tdAsDRZI2uIFYLj-zjuHmnmQ9qPuYvguGoQ/s1600/Wengryns+%2526+Peeds+at+Drive.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="121" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8RBM9tjQ7r6gKudZD57bq31DX34JjjstMXS2x10GVS5ZZpAn_nPA2EbPQV8_N0MbWCMGxUYRYDqbqLi0l1yRSh6Fx_pBCUGKTrd2tdAsDRZI2uIFYLj-zjuHmnmQ9qPuYvguGoQ/s200/Wengryns+%2526+Peeds+at+Drive.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: xx-small;">Libbi, Dave, Marina, Robert at the close of the drive</span></td></tr>
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<span style="font-family: 'Trebuchet MS', sans-serif;">Our dear friends and neighbors, Libbi and David Wengryn, asked our kids' high school officials if we could hold a Bone Marrow Donor Registry drive on the campus. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">May is a hectic month for high schools ~ AP exams, Final exams, Seniors Graduation, the spring musical, athletic competitions, and thousands of details of which I'm pleasantly ignorant.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">And yet, Dr. Kevin Tashlein (our Principal) and the entire administration and faculty gave us a resounding, "Yes! Let's Do It!" </span><span style="font-family: 'Trebuchet MS', sans-serif;">Mr. Jon Weyher (the AP for Athletics, Health/PE, Cafeteria, & Clinic) ensured we had use of a gym and opportunities to promote the event to students the week of the drive. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We worked with <a href="http://www.deletebloodcancer.org/" target="_blank">DKMS Delete Blood Cancer</a> and our local donor recruiter, Kimberly, trained our incredible volunteers and made sure the event went smoothly. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Two Peeds Join the Registry</b></span></h3>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-TjAbkxJuMg8QDaqzORhN9ljwL6AHp5-ql2DgvTM7X8L9fUXZc849Xp1giaWzPPOzhTrIONBB_Xr7dWwapuq-6w3Pfk4DljAILtV7CTbV2jorY5YRItA8R4vYorkOd3UXsxB9Sw/s1600/DSC_0103.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="131" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-TjAbkxJuMg8QDaqzORhN9ljwL6AHp5-ql2DgvTM7X8L9fUXZc849Xp1giaWzPPOzhTrIONBB_Xr7dWwapuq-6w3Pfk4DljAILtV7CTbV2jorY5YRItA8R4vYorkOd3UXsxB9Sw/s200/DSC_0103.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Alex & pals photo-bomb Robert's swab shot.</td></tr>
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<span style="font-family: 'Trebuchet MS', sans-serif;">My husband, Robert, joined the registry. "I would have done this years ago if I knew then what I know now," he said between swabs.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Our daughter, Katrina, is 18 years old and she also joined the registry. She will graduate from high school in 2 weeks. </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">"I hope I get the call some day so I can save someone's life," Katrina told me as she showed me her donor registry card. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Katrina studied the educational videos on bone marrow/ blood stem cell transplantation and worked hard to educate her peers on the importance and ease of joining the registry. She used Facebook to create an 'event' and invited hundreds of people. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Some of her teachers had her speak to their classes about the Bone Marrow Donor Registry and what's involved for donors. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">T</span><span style="font-family: 'Trebuchet MS', sans-serif;">he most common question kids asked her about donating is, "Does it hurt?" </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">When she describes the two methods of transplant and types of discomfort for each, she adds, "It's nothing compared to the pain my mom has lived for years." </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>DNA from Around the World Urgently Needed</b></span></h3>
<span style="font-family: Trebuchet MS, sans-serif;">Because ethnicity and heritage influence our HLA composition, race/ethnicity matters when it comes to finding a life saving donor match. </span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">It really is a numbers game. The more people who join the registry, the higher likelihood a leukemia patient will find a donor and survive. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I found varying statistics on websites that stated likelihood of finding a match based on race and ethnicity. </span><span style="font-family: 'Trebuchet MS', sans-serif;">Rather than claiming specific percentages here, it is clear that Caucasian (white) leukemia and lymphoma patients have SIGNIFICANTLY</span><b style="font-family: 'Trebuchet MS', sans-serif;"><i> higher likelihood</i></b><span style="font-family: 'Trebuchet MS', sans-serif;"> </span><span style="font-family: 'Trebuchet MS', sans-serif;">of finding a match from the donor registry than non-white patients. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">People of African, Asian (including South Asian), Native Hawaiian or other Pacific Islander, Hispanic/Latino, Native American, and Alaska Native descent have <i><b>far less chance</b></i> of finding a matching donor. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Why is there a large difference?</b></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">One reason is because there are more HLA combinations in the genetic composition of descendants from continents other than Europe. Another reason is because there are far fewer people of color in the donor registry. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I've learned that there are several reasons why people don't join the registry. Most people lack awareness of the need. Many don't trust how 'the system' will treat and use their DNA. Recent <a href="http://www.huffingtonpost.com/2013/03/19/bone-marrow-donation-research-why-minorities-opt-out_n_2903157.html" target="_blank">research</a> is illuminating. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Let's Be the Change</b></span></h3>
<span style="font-family: Trebuchet MS, sans-serif;">I figured </span><span style="font-family: 'Trebuchet MS', sans-serif;">our kids' school was a a great place to launch our education & donor registry efforts. </span><span style="font-family: 'Trebuchet MS', sans-serif;">Our student body is quite multi-cultural ~ check out my kids' Junior-Senior Prom group.</span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjejp0wNty0OT53Mg8KqJ7bTjmvzoCg9NWzpeSVJ4qRt2F-CHhkU9dnOPGJSrkzqNs-CL3c1iVKFepglDtsxSSt9vuBs_utW5NvdwvmhZC83Dj3cVG7EJjcjp4NHQARg7vBDMMxIg/s1600/DSCN4284.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjejp0wNty0OT53Mg8KqJ7bTjmvzoCg9NWzpeSVJ4qRt2F-CHhkU9dnOPGJSrkzqNs-CL3c1iVKFepglDtsxSSt9vuBs_utW5NvdwvmhZC83Dj3cVG7EJjcjp4NHQARg7vBDMMxIg/s640/DSCN4284.JPG" width="640" /></a><span style="font-family: Trebuchet MS, sans-serif;"><br /></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">These healthy, bright 17 and 18 year olds are inspiring. Their world views are more expansive than their parents' and grand parents' generations. They restore my optimism in humanity's future (particularly in light of how we 'grown-ups' continue to poison and neglect our ecosystem). </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjejp0wNty0OT53Mg8KqJ7bTjmvzoCg9NWzpeSVJ4qRt2F-CHhkU9dnOPGJSrkzqNs-CL3c1iVKFepglDtsxSSt9vuBs_utW5NvdwvmhZC83Dj3cVG7EJjcjp4NHQARg7vBDMMxIg/s1600/DSCN4284.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaHT-Mi3c40_UNIjPIWcijMDbh04nRLGcS_yt10L_VbbnUYf_PidQJC9mQZClwwJK3MAqummirDA8ygdol_HFvsiVT3ZmYNqimjdKePUwcvXnPhS3PP8hPzz-7FQgh4CVQv3H1_g/s1600/2013+Prom+Girls+Rainbow.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="187" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaHT-Mi3c40_UNIjPIWcijMDbh04nRLGcS_yt10L_VbbnUYf_PidQJC9mQZClwwJK3MAqummirDA8ygdol_HFvsiVT3ZmYNqimjdKePUwcvXnPhS3PP8hPzz-7FQgh4CVQv3H1_g/s200/2013+Prom+Girls+Rainbow.jpg" width="200" /></a></div>
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<span style="font-family: 'Trebuchet MS', sans-serif;">I was overwhelmed by the outpouring of concern and well-wishes during the drive. </span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">Members of the Senior class, faculty, and administration dropped in to swab and join the registry. Some students who are not yet 18 helped to recruit those of age to come in and register. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLhPyERsxbSF8jOzUlPUcti2gLcurKoI6EQ8Kmc0MJ3L9W_35L2WeMpSwQXK0FvhwRp73Bh32k7cuYlTRU9lFEexUbiEZ4to3O8dsP4ygHbVJBV5Ew8j5QRy33wwxGZbIHXYdyUw/s1600/Coach+Hellman+swab.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLhPyERsxbSF8jOzUlPUcti2gLcurKoI6EQ8Kmc0MJ3L9W_35L2WeMpSwQXK0FvhwRp73Bh32k7cuYlTRU9lFEexUbiEZ4to3O8dsP4ygHbVJBV5Ew8j5QRy33wwxGZbIHXYdyUw/s200/Coach+Hellman+swab.JPG" width="195" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Trebuchet MS, sans-serif; font-size: xx-small;">Coach Hellman, the Varsity Boys Tennis Coach swabs in</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5upqGThv-y4KIIVjP3_kFmCrpIQt3y4AZx3K5fGhtfkzX-JxVOhWbXjFmUQ54pgnsYc-J9h0guaW-S7bUmV6f6Fd4J1-Ujj2tX6PmD9M3bng6MDLvM4IzkZcY0x04Air1bQ4lCg/s1600/DSC_0026.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="131" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5upqGThv-y4KIIVjP3_kFmCrpIQt3y4AZx3K5fGhtfkzX-JxVOhWbXjFmUQ54pgnsYc-J9h0guaW-S7bUmV6f6Fd4J1-Ujj2tX6PmD9M3bng6MDLvM4IzkZcY0x04Air1bQ4lCg/s200/DSC_0026.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Trebuchet MS, sans-serif; font-size: xx-small;">Gotta love these healthy, athletic stem cells! Thanks, guys!<br /></span></td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDmN2y9Chu30TbD3TiDjUNng0vxNmrwScArpOE4yzjEG4kndjTdWKtJ4QDgS4yL8F79w0ucqgslvmYMW5Tsn__PW7D7M9YjoyxOnt1O3pHWQkB1Cow9iYxvCpGuL_Xhie-h46kJA/s1600/DSC_0034.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="131" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDmN2y9Chu30TbD3TiDjUNng0vxNmrwScArpOE4yzjEG4kndjTdWKtJ4QDgS4yL8F79w0ucqgslvmYMW5Tsn__PW7D7M9YjoyxOnt1O3pHWQkB1Cow9iYxvCpGuL_Xhie-h46kJA/s200/DSC_0034.JPG" width="200" /></a><span style="font-family: Trebuchet MS, sans-serif;">Friends, neighbors, parents of my friends' kids, and people I worked with in various community endeavors also came to the school to get swabbed. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwO2anRcCOkW94zv5ObEb358uaIZUgeckbn3jGeHlaQktsidX92-vINOAX8VXoE6DU3p2bIAbEncYQQGvhYoYDcSjPUKCoGMPmsKUeMvDeBRxx_N0k9lIGU0DYNVX6mna7DDHYOg/s1600/DSC_0027.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="131" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwO2anRcCOkW94zv5ObEb358uaIZUgeckbn3jGeHlaQktsidX92-vINOAX8VXoE6DU3p2bIAbEncYQQGvhYoYDcSjPUKCoGMPmsKUeMvDeBRxx_N0k9lIGU0DYNVX6mna7DDHYOg/s200/DSC_0027.JPG" width="200" /></a><span style="font-family: Trebuchet MS, sans-serif;">Some who are over the age of 55 dropped in to let me know they would donate if they could (none pictured here, unfortunately).</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdtC9uLykNvhFIyoxOVDVZIlcsBG7qddxfQ9hhMTNXF7HYO8EyFHsxBlyMnhgBEJWcLcskimG2UfarUcybJepFvuSZurF-oAUS2OAQLZRsg7gZnV_2N4UQKMkc2TAReR3Ry2cRNw/s1600/DSC_0028.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="211" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdtC9uLykNvhFIyoxOVDVZIlcsBG7qddxfQ9hhMTNXF7HYO8EyFHsxBlyMnhgBEJWcLcskimG2UfarUcybJepFvuSZurF-oAUS2OAQLZRsg7gZnV_2N4UQKMkc2TAReR3Ry2cRNw/s320/DSC_0028.JPG" width="320" /></a></div>
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<span style="font-family: 'Trebuchet MS', sans-serif;">My friend Kimberly Cho encouraged many people from her church to come and join the registry.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Here are a few more photos from the day.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwO2anRcCOkW94zv5ObEb358uaIZUgeckbn3jGeHlaQktsidX92-vINOAX8VXoE6DU3p2bIAbEncYQQGvhYoYDcSjPUKCoGMPmsKUeMvDeBRxx_N0k9lIGU0DYNVX6mna7DDHYOg/s1600/DSC_0027.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="131" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwO2anRcCOkW94zv5ObEb358uaIZUgeckbn3jGeHlaQktsidX92-vINOAX8VXoE6DU3p2bIAbEncYQQGvhYoYDcSjPUKCoGMPmsKUeMvDeBRxx_N0k9lIGU0DYNVX6mna7DDHYOg/s200/DSC_0027.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: xx-small;"><i><b>I am grateful to the friends who came out to run the drive.</b></i></span></td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwphHRkLl61w665WZGHVU8tli_zW3l3sFsUbaT5CNZ7Ly_Kx6rTkjPkGncGdgIVCtRu90-bw5h7AekVm6tDWMv3GCIYZAwBlyFmqgfnvi4wndhQJHczch6rq25hMaBJPYaR-RAdQ/s1600/DSC_0053.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="131" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwphHRkLl61w665WZGHVU8tli_zW3l3sFsUbaT5CNZ7Ly_Kx6rTkjPkGncGdgIVCtRu90-bw5h7AekVm6tDWMv3GCIYZAwBlyFmqgfnvi4wndhQJHczch6rq25hMaBJPYaR-RAdQ/s200/DSC_0053.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: xx-small;"><b>Sareena, Joella, and Lindsay are <br />Great Volunteers & Potential Donors</b></span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxrRHMxVnzFoLD7yTE6KNN9MCS9_c9TS2YZJIJHwgv3mkhPyZkM9hvXMGZvPFlSBelqhCg29dhu8a6PgKh1k2DGZwMg-ispushKLawSYI4lTW2IQSZtLUCVvvAMH9tCIiozD4lRA/s1600/DSC_0072.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="131" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxrRHMxVnzFoLD7yTE6KNN9MCS9_c9TS2YZJIJHwgv3mkhPyZkM9hvXMGZvPFlSBelqhCg29dhu8a6PgKh1k2DGZwMg-ispushKLawSYI4lTW2IQSZtLUCVvvAMH9tCIiozD4lRA/s200/DSC_0072.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: xx-small;"><b>More healthy stem cells!</b></span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWxl5xcHlidgtsIX-TFDgUclOKNAR4z47zlTy29DU7NxIRvnwNqjuVOGnbvkS8pbuYncJVDyOXlCKrswugOwchCHYuPMn6BBG3f4q8pbqk-PJABAexpubeiWY4ek-tf7EmiqdZPg/s1600/DSC_0073.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="131" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWxl5xcHlidgtsIX-TFDgUclOKNAR4z47zlTy29DU7NxIRvnwNqjuVOGnbvkS8pbuYncJVDyOXlCKrswugOwchCHYuPMn6BBG3f4q8pbqk-PJABAexpubeiWY4ek-tf7EmiqdZPg/s200/DSC_0073.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: xx-small;"><b><i>Thank you for signing our board after joining the registry!</i></b></span><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: xx-small;"><b>Dr. Tashlein joins the registry!</b></span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDdtzbiFHayS0Jzq963FLpfQrtL7h_waohQCcRV88GFYrOaENBXVBWs5AAZdSUltfO4Gt-_XdV_dC2CgLrxoMuxhOYrdWvgR6YWrUMserRupgym6KFNbGzTu8rJ93N405r6212hA/s1600/DSC_0119.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDdtzbiFHayS0Jzq963FLpfQrtL7h_waohQCcRV88GFYrOaENBXVBWs5AAZdSUltfO4Gt-_XdV_dC2CgLrxoMuxhOYrdWvgR6YWrUMserRupgym6KFNbGzTu8rJ93N405r6212hA/s200/DSC_0119.JPG" width="175" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: xx-small;">Ana, Aliya, & Lindsey registered &<br />helped during the drive.</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: xx-small;">I have amazingly caring & supportive friends ~ <br />here with Sara, Madison, & Eva Orazi with Libbi Wengryn.</span></td></tr>
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<tr><td style="text-align: center;"><img border="0" height="131" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipxZI-9YoBhWVCSCPGpmMwoAEIPjG6jvwMKfGlmS-ZxedZVcEbfrXJPBqaIFlQoO-NL0r0e3jcTkqcb18psRiC_5QHI_he67kwmhxkTaxI495kG9XnsZQ75OO7syaQshiLAixnvw/s200/DSC_0085.JPG" style="margin-left: auto; margin-right: auto;" width="200" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: xx-small;">I just LOVE all my kids. Here with Harrison,<br />Christina, Kevin, and Alexander.</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: xx-small;">Alexander & Katrina are all smiles at the <br />end of a successful donor registry drive.</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: x-small;">Mr. Feldman, Director of the Theatre Department<br />presents $425 to Delete Blood Cancer<br />through donations raised by patrons after each show<br />of Legally Blonde, the Musical.</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Kimberly Duncan of DKMS Delete Blood Cancer and I are<br />all smiles after a successful drive.</span></td></tr>
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Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com0tag:blogger.com,1999:blog-32745596.post-61717054539874948732013-05-08T16:16:00.001-05:002013-05-08T16:16:34.224-05:00Family Recruits More Life Savers <span style="font-family: Trebuchet MS, sans-serif;"> My extended family lives the maxim "One for All and All for One!" (</span><span style="background-color: white; color: #333333; line-height: 16px;"><span style="font-family: Trebuchet MS, sans-serif;">"Unus pro omnibus, omnes pro uno" for my Latin linguist friends)</span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When word got out that "Big Marina needs a blood stem cell transplant and none of her siblings are a match" everyone got busy. </span><i style="font-family: 'Trebuchet MS', sans-serif;">(In case you're wondering, "Big Marina" refers to me as the eldest of two first cousins named after our Yia-yia, our Greek grandmother. I am also physically larger than my talented and beautiful cousin, "Little Marina")</i></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> Cousins, in-laws, out-laws, and friends have joined the Bone Marrow Donor registry in hopes of being my match ~ at donor drives in their communities and by <a href="http://www.deletebloodcancer.org/" target="_blank">ordering a kit online</a>. These great people are prepared to donate their bone marrow/stem cells to <i>anyone</i> in need. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Our Race to Beat the Odds</b></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">With more than 4,000 characteristics of HLA types, there are literally millions of potential combinations. The odds of finding a full genetic twin are staggeringly small. Transplant doctors look for 10 matching HLA types of donor and patient. <b>Only 1 in 540 donors</b> in the registry end up donating their bone marrow/stem cells. </span><span style="font-family: 'Trebuchet MS', sans-serif;"><i>It's no wonder that 3,000 children and adults die each year waiting for a match.</i></span></div>
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<span style="font-family: 'Trebuchet MS', sans-serif;">Race and ethnic heritage (in terms of genetic history, not man-made political jurisdictions) influence these combinations.</span><span style="font-family: 'Trebuchet MS', sans-serif;"> I'm still learning that my genetic ancestors are more diverse than Greek, Irish, French, and German. (The info from the DNA I sent to <a href="http://www.23andme.com/" target="_blank">23andMe</a> continues to grow.)</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">WIth all this in mind, it is in everyone's best interest to increase the number of donors in the registry. My 'Matched Unrelated Donor' (MUD) is likely to register through a donor drive run somewhere else. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Since we are a goal-oriented people, we hope that the donor drives done on my behalf result in at least 1,080 new donors; a life saver for me and another could be in the mix. All it takes is a cheek swab. Can it be any easier to pay it forward?</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><b>My Family Diaspora Swabs the US</b></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">In two months time, family and friends will complete five bone marrow donor drives across the country.</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: xx-small;">My mom, Eileen, with sign created by Thea Nini & Little Marina</span><br /></td></tr>
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<span style="font-family: 'Trebuchet MS', sans-serif;"><b>Houston, Texas</b></span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">My Thea Nini (Aunt Elaine) Sampanes Badoian orchestrated a Bone Marrow Donor Registration drive at the Greek Orthodox Church in </span><i style="font-family: 'Trebuchet MS', sans-serif;">Houston, Texas</i><span style="font-family: 'Trebuchet MS', sans-serif;"> in April. She worked with </span><a href="http://www.bethematch.org/" style="font-family: 'Trebuchet MS', sans-serif;" target="_blank">Be the Match</a><span style="font-family: 'Trebuchet MS', sans-serif;">.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Tempe, Arizona</b></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: xx-small;">Mtn Pointe HS in Tempe, AZ ran a great drive!</span></td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">Donna Barry Sampanes, my sister-in-law, organized a donor drive at Mountain Pointe High School in <i>Tempe, Arizona</i> two weeks ago. Donna is doing a follow up this weekend! She also worked with Be the Match. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">My neighbors and dear friends, Libbi and Dave Wengryn, organized a drive to register donors at our kids' high school ~ Peachtree Ridge High School in <i>Suwanee, Georgia</i>. Katrina is making posters, Alex is distributing information and the Peed and Wengryn kids are recruiting donors and will assist during the drive. The drive is this Friday, May 10th from 10 am - 3 pm.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Marietta, Georgia</b></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">My cousin Christina and her parents (Ted and Linda Sampanes) are organizing a donor drive at the Greek Orthodox Church in <i>Marietta, Georgia</i> later this month (also with Be the Match).</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The home church for our Sampanes family is Holy Trinity Greek Orthodox Church in <i>Grand Rapids, Michigan</i>. Family friends are organizing a donor drive on my behalf.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Waterford & Milwaukee, Wisconsin</b></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">My amazing nephew and godson, Patrick Goldammer, is going to run a big donor registration drive as his Eagle project with the Boy Scouts. It's a big task for a 12 year old! Stay tuned for more information.</span><br />
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Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com0tag:blogger.com,1999:blog-32745596.post-48780669507615791622013-04-24T18:10:00.000-05:002013-04-24T18:10:12.494-05:002 Reds Straight Up, with a Platelet Chaser<span style="font-family: Trebuchet MS, sans-serif;">Now that I have my new Port in place and can no longer partake of my favorite wine and beer, the wine analogies have taken over my impoverished brain. If someone tells you, "Don't even THINK about apple pie!" then all you'll see are apples, pies, pie a la mode... I'm sure there is a psychological term for that, but I digress.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Monday's blood work showed Low's & High's:</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Hemoglobin: 7.9 (low)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Hematocrit: 24.9 (low)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Platelets: 62 (low)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Whites: 3.1 (low)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Neutrophils: 33 (low)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">MCHC: 31.6 (low)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">High are Bands, Metamyelocytes, Myelocytes, Anisocytosis, Poikilocytosis, Polychromasia, and Schistocytes. (I'm still looking up all these from the Manual Differential test).</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Next thing I know, I'm here at Gwinnett Medical Center's Out-patient Transfusion Center.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX3NUEDGZXTkKMv1kBbBSJOm0gsI8wF9ZrZSoLv9IFpAPXEMQq_Mj22J-JVSvekCgcKn64soG8CZpIs_jnNDOrd4ggypEk-cV526UNojWbluKTFdOs2B4FIPN2vX-NbDfE0brhhw/s1600/DSCN4315.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX3NUEDGZXTkKMv1kBbBSJOm0gsI8wF9ZrZSoLv9IFpAPXEMQq_Mj22J-JVSvekCgcKn64soG8CZpIs_jnNDOrd4ggypEk-cV526UNojWbluKTFdOs2B4FIPN2vX-NbDfE0brhhw/s200/DSCN4315.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Good to the last drop!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4JSRWgFHYc8DZDgmz1-ElAIDkSnfR0oPJiCzvHjBWLpsEjd3yNpAT1s3UAE1wWN81mC1rslpstwgSAQZJeOKB7jDDf8wgRaPI3sjj6zp0N6pkbV7TQQm_izdgHVu9v0L318-UlA/s1600/DSCN4318.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4JSRWgFHYc8DZDgmz1-ElAIDkSnfR0oPJiCzvHjBWLpsEjd3yNpAT1s3UAE1wWN81mC1rslpstwgSAQZJeOKB7jDDf8wgRaPI3sjj6zp0N6pkbV7TQQm_izdgHVu9v0L318-UlA/s200/DSCN4318.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">2 units of platelets</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">My appointment is for 7:00 am EST. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Yes, you read that right! <b>7:00 AM</b></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Hells bells, I wasn't a morning person on my best, healthiest days!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Kudos to my wonderful daughter who brought coffee to my bedroom this morning ~ at least it got one eye open.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I'm getting two units of Red Blood Cells and 2 units of Platelets. This is the first time I'll receive platelets and third time receiving RBCs. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I must give a shout-out of THANKS to the blood donors from Gainesville, Florida who made their precious B negative blood available to me. </span><span style="font-family: 'Trebuchet MS', sans-serif;">Thanks also go out to the platelet donors who are saving me today. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><i> Thank you! Thank you! Thank you!</i></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwVZE_7r0I48EB13YUBY99HTHnzV-nfSveBQsLY5Bws6fJuQQAth5IVGmZHZO2R7ByoGyd5hWrH0DYtRmU_TSZxjK2xMjtVhIbyKzjmnc0wEFTHWl5Sp5P3SuXQVpuN4ePjnEqtw/s1600/IMG_2988.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="192" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwVZE_7r0I48EB13YUBY99HTHnzV-nfSveBQsLY5Bws6fJuQQAth5IVGmZHZO2R7ByoGyd5hWrH0DYtRmU_TSZxjK2xMjtVhIbyKzjmnc0wEFTHWl5Sp5P3SuXQVpuN4ePjnEqtw/s200/IMG_2988.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Close up look at the port in use.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUlvIkcP3KygRxiM-NUMIaZBN9mjYomLTdnd1pdRBac0Oxedk0_3zna7ay32pOz63Huv3jZOWheBE00pRGWXJ5iRs714yvEXIdMi_VeEhdmxnVEbQNzDIqmpy670BK7IicrmSPwA/s1600/IMG_2986.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUlvIkcP3KygRxiM-NUMIaZBN9mjYomLTdnd1pdRBac0Oxedk0_3zna7ay32pOz63Huv3jZOWheBE00pRGWXJ5iRs714yvEXIdMi_VeEhdmxnVEbQNzDIqmpy670BK7IicrmSPwA/s200/IMG_2986.jpg" width="150" /></a><span style="font-family: Trebuchet MS, sans-serif;">My last blog entry shows what the port looks like (please excuse the leftover betadyne stain on the skin. Here are pics of the port in use. With great advice from another patient, I applied a dollop of lidocaine 5% on the port and covered it with a clear sticky sheet the nurse gave me the day before when I went in for the blood match and cross. I put the lidocaine cream on the port site about 20 minutes before my scheduled appointment. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">The nurse, Amy, was fastidious in her preparations and the IV hook-up. We both wore masks during the process. </span><span style="font-family: 'Trebuchet MS', sans-serif;">I barely felt the needle go in through the skin! Yay me!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Turns out she worked in the transplant unit at Northside Hospital (where I will be). I was quick to recognize her knowledge of blood stem cell transplantation and peppered her with questions throughout our day together. Her candor was professional and refreshingly frank. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When I asked about how to best prepare for the big fight (other than eating well, avoiding illness, and exercise), she recommended that we prepare for the enormous physical and emotional toll it will take on me. It can be frightening to someone who doesn't understand that it is part of the process. Others have told me that the intense chemo takes you to death's door, leaving you to crawl back to the land of the living. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Well folks, I'm not sure we'll be sharing photos of that grandeur (but you never know).</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">While the platelets were dripping in, the hospital chaplain stopped by. Now, I don't know why, but when an official person of God shows up in my hospital room my first reaction is, "Why am I the last to know? How long do I have? Holy crap! What sins should I be confessing? Is eating ice cream out of the carton (double dipping of course) and sticking it back in the freezer a deal breaker?"</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy4sDiP5sIhBtC3rUyFGTXDfhU5ddPP4i3YEqmcgJOPLuwTRbyqvLG2EuSUMt7hG4QKSoyOJU8S_ck7RHOunU6fKUzBQO7sLzGngXq454X6Y9CNWl-cuKQ4Lj_R8rWF4y8shNM_Q/s1600/DSCN4317.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy4sDiP5sIhBtC3rUyFGTXDfhU5ddPP4i3YEqmcgJOPLuwTRbyqvLG2EuSUMt7hG4QKSoyOJU8S_ck7RHOunU6fKUzBQO7sLzGngXq454X6Y9CNWl-cuKQ4Lj_R8rWF4y8shNM_Q/s200/DSCN4317.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Platelet Pole Dancing</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">We talked for awhile, while I was under the influence of Benadryl, and I think I confessed to a lot of anxiety about this whole silent sickness / need a transplant / need an unrelated donor situation. The speed at which this seems to be progressing is really throwing off my well-intended plans to hit some Bucket List items before the transplant. She listened attentively, likely wishing she picked another room. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">As I talked, my eyeballs got a bit sweaty and I decided to lighten the mood. I asked the minister to take a picture of me pole dancing with my platelets. She kindly indulged me as you see here.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I'm home now and feel exhausted. Time for a nap!</span><br />
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<br />Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com0tag:blogger.com,1999:blog-32745596.post-82430711023284560002013-04-24T09:08:00.000-05:002013-04-24T09:09:54.515-05:00Marina's Port ~ Reflections on the Experience<span style="font-family: Trebuchet MS, sans-serif;">It's in! A PowerPort is now a part of me.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgPPAID1n7JAOOp6vqh1kMT1J5DEW-5tSuOTlxRtMev5-OFE5cbJ7ecY9iNO0hX8SbR3yBRspRopdEN327BQyGGUQxLDl3uwdJ8S31o6CZbIAuhT2_QuON73bKzIe4eaLUfRAqww/s1600/IMG_2924.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgPPAID1n7JAOOp6vqh1kMT1J5DEW-5tSuOTlxRtMev5-OFE5cbJ7ecY9iNO0hX8SbR3yBRspRopdEN327BQyGGUQxLDl3uwdJ8S31o6CZbIAuhT2_QuON73bKzIe4eaLUfRAqww/s200/IMG_2924.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Goofy grin courtesy of anesthesia! Glad the head cap matches my shirt, too.</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">I was relieved to learn that they would give me anesthesia before cutting into my chest to place the port and guide the catheter through a large vein (superior vena cava). While I have a pretty high pain tolerance, I have a low blood and gore tolerance. I don't want to see or hear them cutting into me.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It was an out-patient procedure done in the Radiology department of the hospital. That seemed odd to me until I learned that the doctor uses technology to guide the placement of the port and the catheter into the superior vena cava. We don't want them poking around hoping for the best, do we?!</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU4KPWbKpDm0llkk4BL48o0s7kWgyT_BarTcu1O_QydKxrKppzo0DSZ92t1Eh7yX3ZEFZYGMUK6GsEXQ_6ji1EDYOXMy_svX-nHkgCbmLLvXmelMbMmhOncGIk8mOTcl0EqmCSfQ/s1600/IMG_2979.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU4KPWbKpDm0llkk4BL48o0s7kWgyT_BarTcu1O_QydKxrKppzo0DSZ92t1Eh7yX3ZEFZYGMUK6GsEXQ_6ji1EDYOXMy_svX-nHkgCbmLLvXmelMbMmhOncGIk8mOTcl0EqmCSfQ/s200/IMG_2979.jpg" width="150" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Trebuchet MS, sans-serif;">The port is the raised spot beneath the red stitches.</span></td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">There are 2 cuts ~ the one on top (on my collarbone) is tiny and was used to thread the catheter into the vein. The larger one (about 2" below) was made to insert the PowerPort. I have no idea how the actual installation process occurs - it's a macrame or crochet technique beyond my pay grade.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I don't remember much of my time in the procedure room. I do recall a couple of occasions where I said something or started to turn my head (from looking left to right), the nurse would say in a soothing voice, "Everything's okay. Close your eyes and relax, baby." as she injected sleepy juice into my IV. Those are words worth remembering.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Robert, my marvelous husband/best friend/partner in life, was my driver and companion for this particular procedure. I really wanted him to be with me for this one and he was able to arrange his work travel to depart late that evening (after getting me home and settled). </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Yet, as we sat in a sterile exam room waiting for the procedure, I wanted him to leave. I didn't tell him that, of course ~ that would be rude. At the time, I couldn't even articulate to myself why I wanted to be alone. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Now, a week later, I think I get it. Sitting in a cool hospital room in a no-frills "gown" that is open in the back (nothing you would see at Victoria's Secret), I felt small, weak, and vulnerable. The IV was in place (for the fluids and anesthesia) and I signed several information and consent documents. </span><span style="font-family: 'Trebuchet MS', sans-serif;">The magnitude of the illness hit me like a ton of bricks. Tears started streaming down my face, silently, like a slow, quiet leak at first.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">All of a sudden it hit me: I'm sitting in this room, about to have a port implanted in my body, because my veins are shot from years of phlebotomies, infusions, and blood draws. I need the port because I require blood from other people to stay alive until another donor enables me to receive a blood stem cell transplant. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I have a deep belief that the stem cell transplant will not only save my life, it will restore my health to great condition. I will use this gift to do great things for others, although I do not yet know what direction this will take. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Even with this belief, I still get frightened. Yet I don't want my momentary lapses of fear to add concern for my loved ones. They have enough to deal with - my everyday limitations, doctor visits, the many uncertainties of the disease process...</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">My husband has the added burden of being our sole provider of financial and insurance security. To distract him from his work seems counter-productive to me...especially hours before he departs for a business trip. Perhaps it's my feeble attempt to protect him. He has been nothing but kind, supportive, and patient with me through this process. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The only thing worse than being a sick patient is being a loved one of a sick patient. Watching any of my family members suffer with no ability to "fix it" would make me crazy. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">In the end, I did not ask him to leave. I did not hide my tears. I did not bellow out Boo Hoo's or break into heaving sobs, either. I told him that I get scared sometimes and this is one of those times. He took it all in stride. I am so glad he was there with me.</span></div>
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Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com2tag:blogger.com,1999:blog-32745596.post-59199837165295734532013-04-13T11:45:00.000-05:002013-04-13T11:45:01.284-05:00A Port for Weary Veins<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitLZVqVjqO1OkZEzMGEL2Ikkm080T4bWNaOPBzUYOB7Q0WNy77a9hS5Vw8G5yBzyZNxjVyZ3Ll9EOwSH8zjIEzEAWRcFcmts2slJL2fo_IVzJRbjKmPDmeUaqNWHlK0MVpyj3FvQ/s1600/Port_of_Piraeus.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="" border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitLZVqVjqO1OkZEzMGEL2Ikkm080T4bWNaOPBzUYOB7Q0WNy77a9hS5Vw8G5yBzyZNxjVyZ3Ll9EOwSH8zjIEzEAWRcFcmts2slJL2fo_IVzJRbjKmPDmeUaqNWHlK0MVpyj3FvQ/s200/Port_of_Piraeus.jpg" title="Port of Pireaus" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Port of Pireaus, Greece</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2JZDYL1WammXsrZ5W08kUE1MJDOFRrbzOP1HcQS-rgx-IanlM9KcmeJ1JZ_0LegYAwr-uxHM3i8_x86cqNoNxeIdSRibf2NFPzvteW9TC0pXmxBiKdNMT310cH5z4WGuft-SvBg/s1600/port-wine.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2JZDYL1WammXsrZ5W08kUE1MJDOFRrbzOP1HcQS-rgx-IanlM9KcmeJ1JZ_0LegYAwr-uxHM3i8_x86cqNoNxeIdSRibf2NFPzvteW9TC0pXmxBiKdNMT310cH5z4WGuft-SvBg/s200/port-wine.jpg" width="133" /></a><span style="font-family: Trebuchet MS, sans-serif;">When I think of a Port, I first imagine a place near land for boats to find shelter from rough seas or load and off-load goods and passengers. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The second thing I imagine is a glass filled with a dark, heavy, rich dessert wine made in Portugal.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">This coming Wednesday, I will experience another kind of port - up close and personal. I'm having a port installed in my chest. But it is for loading something other than libations.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When I went in for my second transfusion of Red Blood Cells (RBCs), the nurses told me it was time to get a port installed. My good veins for IVs are shot due to phlebotomies and Remicade infusions over the last few years. There is scar tissue and some veins have flattened out. Other veins are covered by <a href="http://orthoinfo.aaos.org/topic.cfm?topic=A00631" target="_blank">lipomas</a> (benign fatty tumors) on my arms and legs (fat isn't limited to cellulite, my friends!). </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The port installation is an out-patient procedure with local anesthetic. I do hope they will give me something to calm my nerves, because watching people run tubing through my chest will trigger some of my natural anxiety.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>IV Educational Moment:</b></span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">In preparing for this, I've learned that there are three types of intra-venous (IV) catheter mechanisms: Ports, PICCS, and Lines. Each is used for different medical purposes.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Ports</b>: Ports are funky-looking things that are implanted just below the skin's surface on the upper chest. A tube connected to the port is fed through a central vein towards the heart. Ports can stay in ones body for years if necessary. Ports are good for chemotherapy, transfusions, and delivering medication and other necessities. A special needle is required to connect to the port. Ports have lower infection risk because there are fewer points of entry to the body than the tubes from PICCs and Lines.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><a href="http://www.portadvantage.com/patient/about_implanted_ports.html" target="_blank">How Does A Port Work?</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>PICCs</b>: Peripherally Inserted Central Catheter </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">I had one of these when I had the whopper hospitalization in 2007. They can draw blood, give medication and liquid nutrition without sticking me every time. A purple tube went from my right arm into a vein that led to my heart. I was unconscious when it was installed, but I do remember that when the nurse pulled it out it was no big deal.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">PICC lines are not used for chemotherapy. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Lines</b>:</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">There are 2 types of lines, tunneled and not tunneled. Tunneled catheters / lines are used for chemo, blood draws, delivery of nutrition, medication, etc. They are not for long term use.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">An on-line friend shared this <a href="http://www.sentara.com/Services/Vascular/Documents/12%20SAT%201100%20AM%20PICCs%20PORTS%20Dr%20Almaroof.pdf" target="_blank">brief summary</a> of these 3 types of IV catheter approaches.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I'll post a photo or two of Marina's Port (sounds nautical, doesn't it?!) on Thursday or Friday.</span><br />
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<br />Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com0tag:blogger.com,1999:blog-32745596.post-45584135466217462032013-04-04T14:00:00.000-05:002013-04-04T14:00:01.871-05:00Blood Stem Cell Transplants in the 21st Century<span style="font-family: Trebuchet MS, sans-serif;">When I first heard about bone marrow transplants, I envisioned the donor getting drilled in the hips for bone marrow extraction (like the bone marrow biopsy and aspiration) and then a surgeon drilling into my large bones to implant the donor marrow. I am happy to say that I was way wrong!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">In most cases, blood stem cells are harvested from the donor through a process called <a href="http://www.apheresis.org/%7EASSETS/DOCUMENT/Fact%20Sheets/Peripheral%20Blood%20Stem%20Cell%20Collection.pdf" target="_blank">Apheresis</a>. It is like donating plasma (some of you may remember college students doing this for weekend money). </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-small;"><i>Over the years, the stem cells that get transplanted have many names: </i></span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: x-small;"><i>bone marrow, stem cells, hematopoietic stem cells, peripheral blood stem cells, and pluripotent stem cells. These are the stem cells that become red blood cells, white blood cells, and platelets. </i></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><b><u>What's Involved in the Transplant Process</u></b></span></h3>
<span style="font-family: Trebuchet MS, sans-serif;"><i><b>For me:</b></i><span class="Apple-tab-span" style="white-space: pre;"> </span> Patient and her caregiver must live near the transplant center for 6 months.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">The week leading up to the transplant, I get blasted with chemo that will kill all the cells in my bone marrow (among other things) and also receive immune-suppressants to prevent my body from rejecting the stem cells. I’ll lose my hair, get mouth sores, feel like crap…</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b><i>For my donor:</i></b><span class="Apple-tab-span" style="white-space: pre;"> </span>The week leading up to the transplant, my donor will have labs updated (to ensure no new infections) and get a growth hormone shot each day for 5 days. Then will have blood drawn out of one arm; the stem cells are separated in a bag for me, and the blood is returned to the donor in the other arm. Generally takes 4-6 hours. S/he will likely feel fatigued for the next couple of days. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b><i>For me:</i></b><span class="Apple-tab-span" style="white-space: pre;"> </span> I will receive the donor’s stem cells by IV. Then I sit and wait for those brave stem cells to engraft in my bones and begin producing blood (takes 2-3 weeks).</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">I’ll also continue to receive anti-rejection medications for the first 6 months post-transplant.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>At day 100:</b><span class="Apple-tab-span" style="white-space: pre;"> </span>a bone marrow biopsy will be done to see if the transplant is successful.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b><u>Major Risks of SCT</u></b></span></h3>
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<span style="font-family: Trebuchet MS, sans-serif;">Transplants for secondary Myelofibrosis are very different than transplants for other leukemias and much more intense than organ transplants.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The risks are highest in the first year of transplant.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">1.<span class="Apple-tab-span" style="white-space: pre;"> </span>Risk of Graft Vs. Host Disease:<span class="Apple-tab-span" style="white-space: pre;"> </span>30-50% with sibling donor. Of those 20% will not be responsive to steroids (aka steroid refactory). MF patients have more GVHD than other leukemia patients.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">2.<span class="Apple-tab-span" style="white-space: pre;"> </span>Risk of Death:<span class="Apple-tab-span" style="white-space: pre;"> </span>15-20% within the first year. Organ failure is most common cause.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">3.<span class="Apple-tab-span" style="white-space: pre;"> </span>Relapse Rate:<span class="Apple-tab-span" style="white-space: pre;"> </span>20% within the first 1-3 years</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">4.<span class="Apple-tab-span" style="white-space: pre;"> </span>Graft vs. MF effect: treated with donor lymphocyte transfusions</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">These are odds I'm confident I'll beat.</span><br />
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Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com1tag:blogger.com,1999:blog-32745596.post-12871760638796888482013-04-04T12:00:00.000-05:002013-04-04T12:00:01.232-05:00When a Match = Life <span style="font-family: 'Trebuchet MS', sans-serif;">I see lots of ads for matching companies -- match.com, e-harmony, christian singles... </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">They sell the dream of happiness for life by promising to find your </span><span style="font-family: Trebuchet MS, sans-serif;">compatible, perfect match.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Here is a way to help someone (like me) find a perfect match that saves life -- and there are no monthly membership fees: </span><span style="font-family: 'Trebuchet MS', sans-serif;"><i>Bone Marrow/Stem Cell Donation </i></span><br />
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<b style="font-family: 'Trebuchet MS', sans-serif;">First Fact:</b><br />
<span style="font-family: Trebuchet MS, sans-serif;">A bone marrow or stem cell donor is determined by HLA (Human Leucocyte Antigens), NOT blood type.</span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">Why match the HLA?</span></b><br />
<span style="font-family: Trebuchet MS, sans-serif;">HLAs are protein markers which sit on all our cells. The immune system recognizes them and therefore does not attack them as foreign or infection. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When the donor and recipient have matching HLAs, the likelihood of stem cell rejection or the new stem cells attacking the host body (Graft vs. Host Disease) is decreased. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The ultimate match is when the patient and donor share 10 out of 10 HLAs. Most transplant centers require a 10 out of 10 or 9 out of 10 match for a standard transplant.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">"Haploid match" is when the patient and donor have half of the HLAs in common. Biological parents and children of the patient are haploid matches. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">These transplants can also be successful with special care to decrease risk of Graft Vs. Host Disease (GVHD).</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Get more info here: <a href="http://marrow.org/Patient/Transplant_Process/Search_Process/HLA_Matching__Finding_the_Best_Donor_or_Cord_Blood_Unit.aspx" target="_blank">HLA Match education</a></span><br />
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<u><span style="font-family: Trebuchet MS, sans-serif;"><b>HLA Match Priorities</b></span></u></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The priorities for my HLA match are as follows:</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">1. Full-match sibling </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">2. Full-match Unrelated Donor (10 out of 10)</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">3. Partially-matched family member </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">4. Cord blood</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">All four of my siblings did the cheek swab test through <a href="http://bonemarrowtest.com/">bonemarrowtest.com</a>, as I did.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">It cost $175 each, yet we got the info quicker than waiting for the doctor referrals and insurance approvals.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">There is a 25% chance that a biological sibling is a perfect match. With 4 siblings, we figured that we had a good chance. </span><span style="font-family: Trebuchet MS, sans-serif;">One brother and one sister are haploid (half) matches with me and full matches to each other; the other two are identical matches to each other.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The doctor said that my son, Alexander, would be a haploid-match with me, and his stem cells would be preferred to my siblings because of Alex's youth. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">They also prefer younger male donor to younger female donor, so Katrina is excluded if Alex is willing to help his mom. In light of his upcoming car repair bill, I think he can be persuaded (wink, wink... both kids asked if they could be donors when this first came up).</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We are now in the process to search for a 10/10 Matched Unrelated Donor (aka MUD) through the <a href="http://www.marrow.org/" target="_blank">National Marrow Donor Program</a>. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The process takes 2-3 months, and the doctor believes that we will find a donor.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">If you are between 18 and 44 years of age and interested in being a Bone Marrow/Stem Cell donor, check out these options:</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><a href="http://bethematch.org/">bethematch.org</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><a href="http://deletebloodcancer.org/">deletebloodcancer.org</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">They both contribute to the national and international donor databases. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">In the circle of life, I'm reminded that we receive what we put out in the world. Donation of bone marrow/stem cells, blood, plasma, and organs are the ultimate Random Acts of Kindness. Give with love and know that your gifts are received by the patients (and their families) with love and immense gratitude.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">peace & love,</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Marina</span></div>
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Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com0tag:blogger.com,1999:blog-32745596.post-70025770587030509162013-04-03T22:00:00.000-05:002013-04-03T22:00:03.226-05:00How We Chose the Transplant Center for Me<span style="font-family: 'Trebuchet MS', sans-serif;">After an absolutely wonderful escape to Sicily, Robert and I returned home ready to tackle the next big adventure. Where should I go for the stem cell transplant? Who will be my donor?</span><span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"></span><br />
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Robert, Mom, and I met with Dr. Lawrence Morris of Bone and Marrow Transplant Group of Georgia in Atlanta. This group is under contract with our health insurance provider.</div>
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Here's what we learned:</div>
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<u><b>About the Blood and Marrow Transplant Group & Facilities at Northside</b></u></div>
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Dr. Lawrence Morris came into our appointment well-versed in my condition and situation. Right off the bat he noted that I must be tired of hearing doctors say that I have an unusual and complicated case. </div>
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The transplant group did 186 transplants in 2012 and their success rate exceeds the "Confidence Interval" (the expected success rate is determined for each center after controlling for the diseases transplanted, age of patients, co-morbidities, etc.). He said only 10 centers in the US exceeded their confidence interval. </div>
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This center is well-within the top 10% of transplant centers in terms of scale. It's not a mega-center (like MDAnderson, City of Hope, Hutchinson, or Sloan-Kettering...)</div>
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<b><u>Transplant Protocol</u></b><br />
The transplant process would be managed mostly on an out-patient basis. This is very different from the Mayo process (5-6 weeks in the hospital). The chemo and the transplant would take place in their out-patient transfusion center. About one week after the transplant, I'd be admitted to the Transplant floor at Northside for 10-20 days, depending on how the engraftment is going, my vitals, any signs of rejection, etc. After release from the hospital, I will still go to the out-patient center daily and then every other day for check-ups. He said that at any point in the process, I could be admitted immediately to the hospital's transplant unit should that be necessary. </div>
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They have better outcomes with the out-patient process, and I'd rather barf in my own toilet anyway. </div>
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<b><u>About My Situation</u></b></div>
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Dr. Morris explained the reasons why a stem cell transplant (SCT) is appropriate for me and the additional risks that I face. The Behcet's auto-immune issue is a bit of a wild-card. The portal vein thrombosis is also an issue; since my body has created new varices to deliver blood from the liver, we need to look and see if a similar thing has occurred in the esophagus (treatment would be required).</div>
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<u><b>Transplants due to Myelofibrosis</b></u></div>
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He also identified the issues specific to transplants due to myelofibrosis: there is additional stress on the body due to years of medications, fibrosis in the bone marrow, and concern for stress on spleen, liver, heart, and lungs. That was a huge piece of helpful information for me because Dr. Fauble at Mayo said that there are unique post-transplant issues for MF patients but didn't specify what they are.</div>
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Given the stress on my body, he expects that the preparation regimen will be something between a full-in ablative chemo and the reduced intensity protocol.</div>
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<u>Decisions, Decisions</u></h3>
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After our Mayo and Northside appointments, Mom, Robert and I talked about the big, burning question: where to have the transplant. We want to go to the center that will have the best chance for a favorable outcome. </div>
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The primary considerations: quality of care/experience; quality of life for me & family; insurance/financial considerations.</div>
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In the end, we are in agreement to have the transplant here in Atlanta.</div>
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Here's our rationale: </div>
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<u>Quality of Care/Experience</u>:</div>
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<li>We looked at outcomes data and experience at Northside, Mayo-Scottsdale, MDAnderson, and others. Since there are very few transplants for MF, the disease specific data is hard to get. None of them do more than 2-3 per year for myelofibrosis. </li>
<li>Northside does enough transplants and participates in research; it's not a side business. It also does a great job - the docs have outcomes that exceed expectations and the transplant unit is state-of-the art. </li>
<li>They know the risks and issues associated with my particular situation. </li>
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I don't believe we are compromising the care by staying here. This group would be my local post-transplant support regardless of where the procedure is done. </div>
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<u>Quality of Life</u>: </div>
<div>
<ul>
<li>I really want to be close to Alexander during his Senior year in college. Whether I'm in the hospital, an apartment near the hospital or at home, he will be able to come visit regularly.</li>
<li>Robert can do his job and he won't have to choose whether to stay with Alex on weekends or fly to see me somewhere. </li>
<li>Staying local will also help me stay out of the depression zone because I won't feel as isolated from my loved ones. I do better keeping my game face on when I've got good reasons to do so. </li>
<li>The out-patient protocol appeals to me a great deal. I recall going stir-crazy the last few days of my 2 week hospital stay back in 2007. Being confined for weeks is not appealing to me at all. </li>
<li>We have many friends who are willing to form a 'care team' to help out as the journey continues (it will be a marathon, not a spring). </li>
</ul>
</div>
<div>
<u>Insurance/Financial</u>:</div>
<div>
<ul>
<li>I was initially inclined to go to Mayo-Scottsdale (as you all know). After looking at the data and meeting with the Northside doc, we'd have an uphill battle to get insurance to pay out of network. I don't think we can make a compelling case that I'll get superior care elsewhere based on the data. </li>
<li>I don't want the added stress of insurance and financial burdens.</li>
<li>Kaiser Permanente has excellent coverage if we do the procedure here. </li>
</ul>
</div>
<div>
<div>
I'm glad we got the diagnosis and recommendations from Mayo first. Not only did it give us time for the info to settle into our minds and hearts, it gave me time to do more research, both data and anecdotal, before meeting with the folks that our insurance will cover.</div>
</div>
<div>
<br /></div>
<div>
We ran through several scenarios and the biggest question: If things go poorly here at Northside, is there going to be any shoulda/woulda/coulda discussions? </div>
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<br /></div>
<div apple-content-edited="true">
There really isn't a stand-out, slam dunk transplant center that we dismissed. So we are in agreement.</div>
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<br /></div>
<div apple-content-edited="true">
So on we go... no regrets!</div>
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</span>Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com0tag:blogger.com,1999:blog-32745596.post-46463359806100135972013-02-21T16:57:00.000-05:002013-02-21T16:57:05.269-05:00The Outs and Ins of MPNs<span style="font-family: Trebuchet MS, sans-serif;">My last phlebotomy was on June 29, 2012. It took about 15 minutes to withdraw 500 ml of that RBC-rich blood from my body. Now, almost eight months later, I'm receiving my first transfusion of packed red blood cells. What a ride this is!</span><br />
<br />
<span style="font-family: Trebuchet MS, sans-serif;">When my <a href="http://www.lls.org/#/diseaseinformation/managingyourcancer/newlydiagnosed/understandingdiagnosis/labimagingtests/bloodtests/bloodcounts/" target="_blank">hemoglobin (hgb) and hematocrit (hct)</a> was not stabilized with Hydrea last summer, I needed a couple of phlebotomies to get me back in the zone. Since last fall, these counts have slowly but steadily fallen. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Now, with Hgb at 8.2 and Hct at 27.4, I can't walk up the stairs without my heart pounding. I get light-headed and dizzy when I walk or stand for much time around the house. </span><span style="font-family: 'Trebuchet MS', sans-serif;">(You know something is not right when you find yourself looking for things to lean against as you move around. Similar to when I was pregnant and had to scope out the nearest restrooms)</span><br />
<br />
<i><span style="font-family: Trebuchet MS, sans-serif;">One of the great take-aways from the <a href="http://www.mpninfo.org/" target="_blank">Joyce Niblack MPN Patient Conference</a> held in Arizona this month was encouragement from experts like Susan LeClair, PhD and Ruben Mesa, MD that <u>blood counts and ranges are not absolutes for every patient</u>. We are encouraged to pay attention to our individual symptoms and let our doctors know.</span></i><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">This gave me the confidence to let my local hematologist know that I need a blood transfusion now (with at Hgb of 8.2) -- I don't want to wait for it to reach 8.0 (the standard accepted level to begin transfusions). I've been very fatigued with it in the 9's for the last few weeks; when it fell lower this week, I had to cry "uncle."</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<br />
<span style="font-family: Trebuchet MS, sans-serif;">Additionally, I plan to start taking <a href="http://www.jakafi.com/" target="_blank">Jakafi</a> when it's approved by my insurance. Since blood counts often drop during the first few weeks, I want to start from a position of strength.</span><br />
<br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">So yesterday I went to the hospital's outpatient infusion center to get my blood typed and cross-matched. Here is a good explanation of the <a href="http://www.cc.nih.gov/ccc/patient_education/pepubs/transfusion.pdf" target="_blank">blood transfusion process</a>.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiufhisc1owPzOzesRHK3LVyt6BfLsrxkPoWJQ88cA5mkMxlsKBIuEsgW5nvhwouI2CaDdb8a_17c1yGAH54Uc-2Af-2WQlDnXFeEBzyKbxKMIg8PySa635FICVFaWwENyY98Ttww/s1600/Transfusion%231.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiufhisc1owPzOzesRHK3LVyt6BfLsrxkPoWJQ88cA5mkMxlsKBIuEsgW5nvhwouI2CaDdb8a_17c1yGAH54Uc-2Af-2WQlDnXFeEBzyKbxKMIg8PySa635FICVFaWwENyY98Ttww/s200/Transfusion%231.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;"><i>My "energy pack"</i></span></td></tr>
</tbody></table>
<span style="font-family: Trebuchet MS, sans-serif;">Today I'm getting 2 units of B negative packed red blood cells from a donor in Riverdale, Georgia. A nurse came in with a cooler that contained what I'm now calling my "energy pack." </span><span style="font-family: 'Trebuchet MS', sans-serif;">After verifying the info on the blood bag with the info on my wristband, the transfusion commenced.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">As I sit here and write this while someone's generous gift is flowing into my veins, I feel quite humble. Someone took time (and energy) from his/her daily routine to help a stranger. It is an unconditional gift. No questions or judgments about my race, religion, age, gender, political views, sexual orientation, family situation, employment status, or the reason I need the blood. A pure gift of care and concern for others. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxXgQOCHgFASevD3X4ld415Vo2s-hrTq4e4X6qOxBG0KdMlOFT4_2UdkiFyflQCDIQTdbzTpMQBdks0NtadofN1vt2fRMQgqAM9-0rgBpMPA3e2tgww8qZ-a9X4xJmLNAtF_PEbg/s1600/Feb+21,+2013+4:26:01+PM.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxXgQOCHgFASevD3X4ld415Vo2s-hrTq4e4X6qOxBG0KdMlOFT4_2UdkiFyflQCDIQTdbzTpMQBdks0NtadofN1vt2fRMQgqAM9-0rgBpMPA3e2tgww8qZ-a9X4xJmLNAtF_PEbg/s200/Feb+21,+2013+4:26:01+PM.jpg" width="200" /></a><span style="font-family: Trebuchet MS, sans-serif;">One of the nurses explained that this donor helped me with the red cells, and another with the white cells, and a third person with the platelets. How is that for leveraging a donation? </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: 'Trebuchet MS', sans-serif;">My mom was an ICU nurse while I was growing up and we learned how important blood donation is to saving lives. </span><span style="font-family: Trebuchet MS, sans-serif;">I started donating blood when I was 18 and in college. Because "B negative" is not a common <a href="http://www.redcrossblood.org/learn-about-blood/blood-types" target="_blank">blood type</a>, the blood bank would sometimes call me in. I continued donating until my early 30's and quit due to chronic anemia. Later, in my 40's, I became symptomatic and diagnosed with Polycythemia Vera. I've been assured that my blood was good and safe for donation in my early years; the JAK2 mutation that triggered the PV occurred later. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">I have no idea how much blood I donated in my healthy years. But I'm sure it not enough to cover the blood I will be receiving over the coming months. Some have told me that they would like to donate to someone they know. I remind them that should they ever need blood (due to illness or accident), the donor who saves them will likely be someone unknown to them. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Blood donation is the ultimate random act of kindness. I receive this gift of kindness and life with love and gratitude. It is yet another reminder of the interdependent web of life. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<br />Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com1tag:blogger.com,1999:blog-32745596.post-52712544572438502702013-02-18T15:10:00.001-05:002013-02-18T15:10:06.277-05:00These Tired Bones Need a Makeover<span style="font-family: Trebuchet MS, sans-serif;">After several days of tests and consultations with experts at Mayo Clinic Scottsdale, I returned home with a worse-than-expected diagnosis. Here's the quickie Bad News/Good News version:</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;"><u>My bone marrow has gone from over-achievement to under-achievement</u>. Instead of producing too many red blood cells, it is now in the "spent phase" and is not producing enough blood. This transition called my spleen and liver into action to produce blood. They are working hard, but will not be able to sustain their efforts forever. I'll soon need blood transfusions to keep my hemoglobin at a livable level. What irony! From phlebotomy to transfusion in less than one year.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;"><u>A blood stem cell transplant is in my near future</u>; a successful transplant will cure me of the myelofibrosis AND the auto-immune conditions that rage inside.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Without a transplant, I'm at great risk for acute leukemia (no cures) and could expect less than three years on the sunny side of the ground.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Now that the test results and reports from Mayo are in my local doctors' hands, I'm preparing for the insurance approval / denial / appeal process. Quite frankly, I'm more anxious about getting the transplant approved (with the best transplant center for my particular leukemia) than the transplant process itself.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">The kids and Robert are taking the news like champs. So are my mom, dad, and siblings. We're going to get through this together as we do all challenges ~ with love, laughter, the occasional cuss word, and toasts to the present and a bright future. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Some have asked what they can do to help. If you are so inclined, please consider:</span><br />
<br />
<ol>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">Become a blood donor. You can be sure that me, or someone like me, is grateful for your gift of life.</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">Join the </span><a href="http://www.marrow.org/" style="font-family: 'Trebuchet MS', sans-serif;" target="_blank">National Bone Marrow Donor Program</a><span style="font-family: 'Trebuchet MS', sans-serif;">. With a simple swab of your cheek, you will be "typed" (not blood type, by the way) and entered into the database. When a patient needs a donor, our info is compared. Donors are contacted and must agree to be considered for donation before the patient is contacted. Donors can say no at any time. Also, I won't need your bone marrow ~ just your blood stem cells (it's like donating platelets).</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">Keep us in your happy thoughts, prayers, meditations. My mom alerted her international, multi-faith 'God Squad' and I am here to tell you that I do feel the love. It manifests in hope, energy, and strength. </span></li>
</ol>
<br />
<span style="font-family: Trebuchet MS, sans-serif;"><i><br /></i></span>
<span style="color: #cc0000; font-family: Trebuchet MS, sans-serif;"><i>NOTE: I especially encourage my friends of Asian, African, Jewish, and Native American descent to sign up. Matches for are very limited for children and adults of color compared to white European descendants. </i></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Here are some specialty donor programs (they tie into the large database): </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><a href="http://www.asianmarrow.org/" target="_blank"><span style="color: blue;">Asians for Miracle Marrow Matches</span></a></span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="color: blue; font-family: Trebuchet MS, sans-serif;"><a href="http://www.blackbonemarrow.com/" target="_blank">BlackBoneMarrow</a></span></div>
<div style="text-align: center;">
<span style="color: blue; font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="text-align: center;">
<span style="color: blue; font-family: Trebuchet MS, sans-serif;"><a href="http://www.giftoflife.org/" target="_blank"><span style="color: blue;">Gift of Life Bone Marrow Foundation</span></a></span></div>
<div style="text-align: center;">
<span style="color: blue; font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"># # #</span></div>
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">If you like more technical terms, read on:</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<br />
<span style="font-family: Trebuchet MS, sans-serif;"><b>I.<span class="Apple-tab-span" style="white-space: pre;"> </span>My Polycythemia Vera (PV) has transformed to post-polycythemic Myelofibrosis (MF) in recent months.</b></span><br />
<br />
<ul>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">I have completed the “spent phase” of Polycythemia Vera and my bone marrow now has lots of reticulin, which crowds out the blood-making stem cells. </span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">Extra-medullary</span><span style="font-family: 'Trebuchet MS', sans-serif;"> hematopoiesis is now at work – the spleen and liver are beginning to produce blood due to the bone marrow fibrosis. Over time, this puts extreme stress on both organs.</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">The overall goal is to prevent the MF from progressing to an acute leukemia from MPN; it is very difficult to treat and very high mortality.</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">The auto-immune conditions and portal vein blockage add complexities to my circumstances. </span><span style="font-family: 'Trebuchet MS', sans-serif;">My “youth” is an advantage.</span></li>
</ul>
<br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;"><b>II.<span class="Apple-tab-span" style="white-space: pre;"> </span>I will start a newly-approved medicine called Jakafi to help improve the symptoms of the disease.</b> </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">While it won’t slow the progression of the disease, it should reduce the spleen size, night sweats, itching. May cause more anemia. I’ll likely need blood transfusions (when hemoglobin falls below 8.0</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;"><b>III.<span class="Apple-tab-span" style="white-space: pre;"> </span>Need to plan for a blood stem cell transplant in the next year or so.</b></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Because of the rapid rate of disease progression, I'm not a candidate for a clinical trial.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">We need to prepare for a transplant:</span><br />
<br />
<ul>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">“Type” me</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">Look for a match – my siblings, then <a href="http://www.bethematch.org/" target="_blank">www.bethematch.org</a></span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">Get insurance & local docs on board with this plan</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">Stay as healthy as possible</span></li>
</ul>
<br />
<div>
<span style="font-family: Trebuchet MS, sans-serif;">I was hoping that a transplant could occur after Alexander graduates high school and heads out to college (mid-2014). The doctors said that is highly unlikely. There is a window of opportunity for successful transplants and weekly monitoring of my blood counts will inform us of the timing. That bums me out because I want to be fully present for his last year at home. He said, "Don't worry about me, mom. The sooner you get the transplant, the sooner you feel good enough to do all the things you want to do." </span></div>
<div>
<span style="font-family: Trebuchet MS, sans-serif;">As long as I make sure he has gas money... (wink, wink)</span></div>
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<br />Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com3tag:blogger.com,1999:blog-32745596.post-471549411563281292013-02-06T23:59:00.000-05:002013-02-06T23:59:00.470-05:00The Power of Expiration Dates<br />
<span style="font-family: 'Trebuchet MS', sans-serif;">How would you live your life if you knew your expiration date? </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">Would you live differently today if you knew you had 20 years? 10 years? 5 years? 1 year?</span><br />
<div style="min-height: 13px;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<span style="font-family: 'Trebuchet MS', sans-serif;">Now, I have no idea at this writing of the state of my health condition. I’m not going to borrow worry;</span><span style="font-family: 'Trebuchet MS', sans-serif;"> </span><span style="font-family: 'Trebuchet MS', sans-serif;">it will be what it will be.</span><span style="font-family: 'Trebuchet MS', sans-serif;"> </span><span style="font-family: 'Trebuchet MS', sans-serif;">And besides, I could get hit by the proverbial bus or picked off by a random shooter before the disease calls 'time'.</span><span style="font-family: 'Trebuchet MS', sans-serif;"> </span><span style="font-family: 'Trebuchet MS', sans-serif;">I refuse to live in the state of fear, disease or no disease.</span><br />
<div style="min-height: 13px;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<span style="font-family: Trebuchet MS, sans-serif;">Some say they wouldn’t want to know, it would make them paralyzed to do anything. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">After a sudden illness five years ago that I wasn’t supposed to survive, I have a new perspective. I consider it a gift because it pulled me off the treadmill of life and forced me to learn how to be present instead of focusing on the future. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">This present circumstance is a reminder to ask the questions I like to avoid: </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;"><b>1. How do I want to be remembered? </b></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;"><b>2. What memories do I want to make to fuel me when I can't get out and do as much as I can now?</b></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHvj9tSl5GdHm_kdQdWLVFJFac5mw0daWCGVgk2aB0ukXWPcGaKdr9KAQFaSfVRjBmb2SCH1qvXwvQidBiW79v_3_GVWtbhc5eX23Z0vTOnvNVQVZK6DARijSgfZXouEwnSitn0A/s1600/Family+pic+2012.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="128" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHvj9tSl5GdHm_kdQdWLVFJFac5mw0daWCGVgk2aB0ukXWPcGaKdr9KAQFaSfVRjBmb2SCH1qvXwvQidBiW79v_3_GVWtbhc5eX23Z0vTOnvNVQVZK6DARijSgfZXouEwnSitn0A/s200/Family+pic+2012.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">2012 Family Reunion</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicdNBuveEHbKuCg1l93amt4cPnCqdmILCfgSKLQ2e9IOmBR_rdIbJLfOH8NpmkrfdDnayk2wDg1Xz2G3TXz6_ACI1BONa15FyXU6v9KYXHPEG4zOasqkSCMxodHapjwoy9oZfIxw/s1600/P1040881.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicdNBuveEHbKuCg1l93amt4cPnCqdmILCfgSKLQ2e9IOmBR_rdIbJLfOH8NpmkrfdDnayk2wDg1Xz2G3TXz6_ACI1BONa15FyXU6v9KYXHPEG4zOasqkSCMxodHapjwoy9oZfIxw/s200/P1040881.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fun w/Roman Street Performer</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7h_z_d5mufin9Bh4cWGG8H3RIgxk9EGzye9gBqmVsEQgVaa8MTY_NG6TGMmHxd0Z68CGX1o-tgTJskCZ7rrlPyzm_eFnRwCx8XWldSXkthH5zO1XbiALna9m_qp4ob_HPmf84sQ/s1600/DSCN1902.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7h_z_d5mufin9Bh4cWGG8H3RIgxk9EGzye9gBqmVsEQgVaa8MTY_NG6TGMmHxd0Z68CGX1o-tgTJskCZ7rrlPyzm_eFnRwCx8XWldSXkthH5zO1XbiALna9m_qp4ob_HPmf84sQ/s200/DSCN1902.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Visit with Theas Estelle, Kay & Angie</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;"><b>3. What is keeping me from being the person I want to be and making the memories I crave?</b></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Here are some steps I am working on this year:</span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">Simplify, Simplify, Simplify</span></b><br />
<span style="font-family: Trebuchet MS, sans-serif;">I have a well-known clutter problem. Paper is my arch-nemesis; it is everywhere! </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">But it is also difficult to part with certain things because 'someone' may need them 'sometime'. My neighbors call me when they need an odd kitchen gadget, super large mixing bowls, or platters. The kids’ friends come over to borrow wigs, costumes, capes, and all sorts of art supplies for school projects. </span><span style="font-family: 'Trebuchet MS', sans-serif;">And then there are books – pick a topic and I’m likely to have at least one book on the subject (I’m not kidding – any topic).</span><span style="font-family: 'Trebuchet MS', sans-serif;"> </span><span style="font-family: 'Trebuchet MS', sans-serif;">To me, it is absolutely terrible to throw books away. Who wants some books?</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I still have a dozen boxes full of conference binders, books, and articles I authored when I was working.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><i>News flash:</i> the Smithsonian has no interest in my 20 year adventure in creating nonprofits and developing affordable housing. And shockingly, neither are my kids. Ouch! </span><span style="font-family: 'Trebuchet MS', sans-serif;">Time for purge mode!</span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">Attachment to Things</span></b><br />
<span style="font-family: Trebuchet MS, sans-serif;">I am less attached to things. Don’t get me wrong, I still like nice things. But I don’t wish for much anymore. For example, I love Waterford crystal. My husband won several beautiful large bowls and vases in golf tournaments over the years. We’ve purchased and received as gifts wine goblets, tumblers, and other pieces over the years. They are beautiful and are rarely used.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I also have a collection of more than 300 cookbooks. I really enjoy reading them and purchased many along my travels. But truthfully, I only cook out of about a dozen of them. Today I’m more likely to go online for a recipe because I can print out the shopping list and have the nutritional value calculated for me.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Yet, I've hesitated to thin the herd because it would mean my collection wouldn't be as big. Notice the irony -- thinking bigger is better… in the food department!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Who wants some cookbooks?</span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">Use the Good Stuff</span></b><br />
<span style="font-family: Trebuchet MS, sans-serif;">I’ve decided that as the “every day” items dwindle, due to a hungry garbage disposal, poorly loaded dishwasher, or clumsy food runner, I’m going to switch over to using our “good stuff.”</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Like every good Greek-American girl, when I was engaged and preparing for marriage, I registered for “everyday” place settings, flatware, glasses, and serving pieces. I also registered for “formal” place settings, silver utensils, crystal, and serving pieces. These formal dining pieces are used approximately two times a year. Since I’ve been married for 22 years, that’s less than 50 times, while the everyday pieces have been used thousands of times (and been replaced as needed).</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">What am I waiting for? If I know my expiration date is coming up in a decade or two instead of 30-40 years, I’m going to enjoy what I’ve got. The same goes for my shoes, bedtime attire, Parmagiano/Reggiano …</span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">Demonstrate Gratitude Everyday</span></b><br />
<span style="font-family: Trebuchet MS, sans-serif;">The practice of gratitude is a constant in my life. It is a spiritual practice as I make note throughout the day and every night of the things, actions, and people for which I am grateful. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When the illness became overwhelming and required me to quit working, I was furious. I pushed as far as I could at my nonprofit and then with part-time consulting until my body and brain wore out. My work provided psychological as well as financial income and I was accustomed to pushing through adversity. 98% of the time, I prevailed. This was when I realized how much of my stressful yet wonderful life I took for granted. I thrived on spinning plates at work, at home, and in community activities.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I am forever grateful that my two children are darn near perfect in health, spirit, and abilities. I’m grateful that my husband is a loving, funny, and dedicated father and husband; he handles the new me with great care and good humor. My extended family has always been incredibly loving and supportive. I have some of the truest friends anyone could hope for.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Now I need to remind myself that even small things are worthy of gratitude. Since I developed chronic illness and accompanying side effects such as extreme fatigue, foggy brain, bone and joint pain, muscle pain, migraines, and depression, I sometimes have to dig deep. Hey! I put my bra on all by myself! </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Some days, I’m grateful I can get out of bed without assistance, walk down the stairs, or sleep through the night. Other times I’m grateful the medicine took away the pain; or I went an entire day without a headache. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Since I’ve accepted the value of appreciating things that once seemed small, I’m taking the next step this year. I am going to demonstrate my gratitude to others every day. I want to be sure that people know what they mean to me, that I appreciate them, that they make a difference in the world. Some gratitude will be expressed verbally, in writing, in person – who knows what I’ll come up with. </span><br />
<b><i><span style="font-family: Trebuchet MS, sans-serif;">But being grateful isn’t enough for me now; I need to express it as I feel it.</span></i></b><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">Accentuate the Positive</span></b><br />
<span style="font-family: Trebuchet MS, sans-serif;">I will also demonstrate gratitude by not piling on the negativity in the world – through social media, movies, the "news," gatherings, or other means. I can be sarcastic and snarky with the best of them, and sometimes it feels like a good release (especially when I'm in pain or depressed). But does it do anything to improve the human condition?</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When I read comments to on-line articles and some facebook posts, I’m struck by the number of people who write things that they probably (hopefully) wouldn’t say to someone’s face. I'm guilty of it, too. It’s as if cynicism makes one feel superior. Not only do the Negative Neils and Nellys usually post opinions based on incomplete and sometimes absolute fiction, the result is raising their own and the readers’ anxiety, anger, and blood pressure. Really? Is this how you want to be remembered? Showing your amygdala to the world? </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">From now on, I'm working hard to moderate my expressions with the simple question: will what I say/post/write help or hurt the situation or other person? </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">The old adage, “if you don’t have something nice to say, keep your mouth shut.” Is my new mantra. </span><span style="font-family: 'Trebuchet MS', sans-serif;">Of course, I still like the southern version sometimes:</span><span style="font-family: 'Trebuchet MS', sans-serif;"> </span><span style="font-family: 'Trebuchet MS', sans-serif;">“If you don’t have something nice to say, come sit by me!” (wink, wink)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><i>People often don't remember what you said or what you did, but they always remember how you made them feel.</i> </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">This imperfect person is focusing on spreading love in hopes that it puts a bit more healing and motivation into the world.</span><br />
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Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com2tag:blogger.com,1999:blog-32745596.post-33679757849231956672013-02-06T14:23:00.000-05:002013-02-06T14:23:36.034-05:00Let's Kick It Up a Notch (or more) -- to Mayo Clinic<span style="font-family: Trebuchet MS, sans-serif;">I had a Bone Marrow Biopsy done at Northside Hospital on January 24th. </span><span style="font-family: 'Trebuchet MS', sans-serif;">The bone marrow biopsy and aspiration report came back with some news: lots more reticulan fibers and fibrosis "consistent with post-polycythemic myelofibrosis." </span><span style="font-family: 'Trebuchet MS', sans-serif;">The report didn't look good from this patient's perspective but I was pleased that I wouldn't have to wait too long for Dr. Mesa's review.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We decided over the holidays to try to get a consultation with Dr. Ruben Mesa, hematologist/oncologist at Mayo Clinic Scottsdale. I really must thank my mother for making this happen. She prepared a concise yet thorough letter to Dr. Mesa explaining the changes in my symptoms and asked questions regarding my suitability for a clinical trial that we've been pursuing. All this before we had the BMB.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"> </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Dr. Mesa is one of the top experts in the world on Myeloproliferative Neoplasms (MPN), which includes Polycythemia Vera and Myelofibrosis.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Since Mayo Clinic Phoenix is hosting the </span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; text-align: center;">Joyce Niblack Memorial Conference on Myeloproliferative Neoplasms </span><span style="font-family: 'Trebuchet MS', sans-serif;">this coming weekend, we wanted to schedule the consultation for the same trip. This conference is organized by the <a href="http://www.mpninfo.org/" target="_blank">MPN Education Foundation</a> and is rich in sharing the latest research in language patients and their loved ones can understand. This will be the 3rd such conference mom and I will have attended. I'll be reporting on the conference as it occurs.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So yesterday (Tuesday) I had the initial consult with Dr Mesa. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Unfortunately, the chronic leukemia has progressed from Polycythemia Vera (PV) to post-PV Myelofibrosis (MF). </span><span style="font-family: 'Trebuchet MS', sans-serif;">This means that my bone marrow has gone from producing <i>too many red blood cells</i> to producing not enough of any blood cells (eventually makes one transfusion-dependent).</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">He explained that all the MPNs are on a spectrum -- my PV appears to be on the aggressive end of the PV spectrum. <span style="font-size: x-small;"> [Blood clots in 2007; uncontrolled hemoglobin and hematocrit in 2009 (when it was diagnosed) to now: low blood production, unexplained weight loss, increased anemia, bone pain, excessive fatigue, etc.]</span></span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">Myelofibrosis (both primary and secondary), like the Polycythemia Vera, is a chronic leukemia -- meaning one can live for quite some time with appropriate medications and monitoring. (Acute leukemias are much more aggressive). </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">He needs more info to determine where my MF is in the DIPSS 4 stage range. It's likely somewhere in the middle -- not early and not severe. This is good news.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The 20+ pounds I've lost in the last 2 months is likely from increased calories that the cancer is burning. I'm still not to my Weight Watcher's goal weight, so no concern about it yet. I finally found an advantage to being chubby ~ it gives cancer more to chew on while the doctors prescribe more toxins to help you get better.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We were hoping that my treatment would change from hydroxyurea to pegylated interferon. Despite the potential side effects, the peg-interferon has reversed fibrosis in many PV cases. Unfortunately, the interferon is likely not an option for me now (too late in the disease process AND it may exacerbate the inflammation problems). We were considering this in 2012 and it never came to fruition. </span><span style="font-family: 'Trebuchet MS', sans-serif;">The hydroxyurea (pill chemo) has run its course, too. No need to continue suppressing the bone marrow.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">One of the new JAK-2 inhibitors will likely be a good fit, along with other meds to address the anemia. He mentioned Jakafi (it's a pill, not an exotic tropical island where cancer patients sun and heal).</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">There are no medicines to cure secondary MF at this time; what is available can slow the progression of the disease and reduce the likelihood that it transforms to acute myeloid leukemia.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Before Dr. Mesa develops his recommendations, he needs more information. So off for more tests:</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">* I had lots of blood drawn that is on its way to Mayo Rochester for evaluation.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">* I had a chest X-ray in part because he noticed my fingernails are "clubbing" which is a sign of pulmonary problems. It could also be a result of all the inflammation.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">* I had an ultrasound on my big spleen and gut.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Dr. Mesa also wants to consult with a rheumatologist for the Behcet's and the other mystery inflammation (see my earlier posts). </span><span style="font-family: 'Trebuchet MS', sans-serif;">The inflammation is not related to the blood problems. While it may not be due to Behcet's, he wants the rheumatologist's opinions. </span><span style="font-family: 'Trebuchet MS', sans-serif;">The rheumatologist can't see me until next Tuesday morning, so I have to extend my trip.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Also, he believes that at some point a bone marrow/stem cell transplant may be a good option for me. This is the only known cure for MF. He says you don't want to do it too early nor too late in the disease process. He wants me to consult with their SCT doctor. That appointment is this Thursday morning. I'll know a lot more about SCTs as a result.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">Dr. Mesa also says that my "youth" is a big advantage (most are diagnosed around age 65). </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The kids know I haven't been feeling well and are glad that I'm seeing a world-renowned expert. Their love and teenage chaos pulls me out of self-centered funks and remind me of all things good. Laughter is truly the best medicine!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I will know a lot more on Friday and will also learn a whole bunch about the state of MPNs and other patients' experiences at the symposium this weekend.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Stay tuned! Never a dull moment!</span><br />
Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com0Tempe, AZ, USA33.4255104 -111.9400054000000233.2133919 -112.26272890000001 33.6376289 -111.61728190000002tag:blogger.com,1999:blog-32745596.post-37718611770988333492013-01-23T23:59:00.000-05:002013-01-23T23:59:59.191-05:00Yippee! It's Time for Another BMB<span style="font-family: Trebuchet MS, sans-serif;">I never thought I would look forward to getting another bone marrow biopsy & aspiration, but today I am eager for new information. The first BMB was done in March, 2010. It will be interesting to see how my busy bone marrow has changed in almost 3 years. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Why a BMB Now?</b></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">In 2012, the first few months were the best I've had in a few years. The Remicade was keeping the Behcet's flares at bay and Polly was managed well with hydroxyurea. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">In April, I began getting all sorts of odd inflammation in my hands and feet (shared in earlier posts). At the same time, my hemoglobin and hematocrit were climbing high and we had to increase the hydroxyurea dosing and add phlebotomies. Now that I've been off of the Remicade for over two months, the inflammation is greatly reduced. It's still here, but the disabling pain is gone. In the fall, the hemoglobin and hematocrit started falling, even after <i>decreasing</i> the hydroxyurea dosage. Hgb was 9.3 and Hct was 30.4 on Christmas Eve. No wonder I get so tired so fast. Something is not right. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">The Diagnosis Information on the referral says: Neoplasm Uncertain Behavior Polycythemia Vera. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Homework for a BMB - Yuck!</b></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Since I need to take Lovenox injections for a few days leading up to the procedure, I've talked my daughter Katrina and my friend Kimberly into pinching my gut and shooting me up. I know I'm a wimp, but for some reason I just can't give myself an injection. Yes, this from one who gets blood drawn at least monthly and has had many phlebotomies over the years. Katrina is doing a fine job standing in for her dad (he's in Germany this week).</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I've been taking warfarin (aka Coumadin) since the life changing thromboses of my mesentary, portal, and splenic veins in 2007. The clots are still there and fortunately the body has an incredible way of creating new pathways to circulate blood. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">To prepare for any invasive procedure, we have to adjust my blood's ability to clot to prevent excessive bleeding during or after the procedure. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Then, after the procedure, it's more Lovenox and warfarin until the blood returns to a safe "thin-ness" (It's not really thinner, it's just slipperier to slow down clotting).</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>The BMB Procedure</b></span><br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXh6yX60N5R4xTVPP84_4GbifeH3YG7CGDQPqD-YqrUaX5MHA-tx8cIJ1KCUyUmyW3T8mpd6RAi54iUBeU1HRfSGdTv5s_Gdm7u4X5Z7c2-kwBKzdxV36LZgI5wZkBVvS5aHBSKg/s1600/BMB_illustration.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="" border="0" height="256" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXh6yX60N5R4xTVPP84_4GbifeH3YG7CGDQPqD-YqrUaX5MHA-tx8cIJ1KCUyUmyW3T8mpd6RAi54iUBeU1HRfSGdTv5s_Gdm7u4X5Z7c2-kwBKzdxV36LZgI5wZkBVvS5aHBSKg/s320/BMB_illustration.jpg" title="Bone Marrow Biopsy illustration" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>image from University of Chicago Medicine website</i></td></tr>
</tbody></table>
<span style="font-family: Trebuchet MS, sans-serif;">It's a really straight-forward procedure. The doctor injects some numbing medicine at the rump site and the anesthesiologist gives me some twilight meds so I can be awake but not really care that someone is drilling into my tailbone (posterior iliac crest). </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Thanks to one of the most authoritative resources, YouTube, I showed Katrina and Alex some BMBs that patients had recorded and posted. The numbing of the bone is really painful. Some go through the procedure without the twilight (conscious) anesthesia. I thought about it... for a nanosecond. I've been dealing with so much chronic pain that if I have a chance at some legal relief, I'm all in! I may have "chemo brain" but I haven't <i>totally</i> lost it. I gave up the martyr crown a long time ago. And thank goodness I have great health insurance!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When Katrina saw the one where the doctor said, "Oops!" a couple of time, she started to become real sympathetic. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>This Year's "Rumper Sticker"</b></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">I want the medical staff to see me as a person, not a procedure. Thanks to the creativity of many friends on Facebook, I got lots of suggestions for what my daughter would write on my rump. Last time, she wrote "Private Property" and "Bad 2 the Bone" above each cheek. </span><span style="font-family: 'Trebuchet MS', sans-serif;">Some of this year's top suggestions:</span><br />
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<ul>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">You Break It, You Buy It</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">Objects in rear are closer than they appear</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">Left Right</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">You'd better buy me dinner first</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">Warning -- Blast Zone</span></li>
</ul>
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<span style="font-family: Trebuchet MS, sans-serif;">Here's the winner:</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_nIQW-Lr_D-dA73ysbU2dE1u8b97ndviE8RaBysBopOpv-5QzEs1QPuYJQrH_P6PVyAhXsJ8qIPto_gAne5ECYH_Ajl5LM6Cb8Wf_3ktsqArioDnfHOFhyYS960L2KyAaaQ4ngw/s1600/RumpNote.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_nIQW-Lr_D-dA73ysbU2dE1u8b97ndviE8RaBysBopOpv-5QzEs1QPuYJQrH_P6PVyAhXsJ8qIPto_gAne5ECYH_Ajl5LM6Cb8Wf_3ktsqArioDnfHOFhyYS960L2KyAaaQ4ngw/s200/RumpNote.jpg" width="200" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We'll see how the doctor reacts!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com0tag:blogger.com,1999:blog-32745596.post-63069159244164678402012-12-14T13:17:00.000-05:002012-12-14T13:17:06.140-05:00MPNs Gain Attention of Hematologists<span style="font-family: Trebuchet MS, sans-serif;">In case you haven't heard, hundreds and hundreds of hematologists gathered in Atlanta, Georgia for the 2012 ASH (American Society of Hematology) conference this past week.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Until I was diagnosed with Polycythemia Vera, I had <i>no</i> inkling how complicated our blood is. I also didn't realize how much 'we' (including the medical and scientific communities) don't know about about blood functions at the protein and molecular levels. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It's a beautiful thing when blood functions properly. But when it doesn't, well, it turns a person into a patient. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Fortunately, we've got some very inquisitive, intelligent people studying many aspects of MPNs. This year's conference featured several presentations on new learnings about Myeloproliferative Neoplasms (MPNs) -- from PV phenotypes to drugs that impact the disease processes and side effects like anemia. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Here are a few helpful summaries of the MPN highlights from the conference. The videos features Dr. Ruben Mesa of the Mayo Clinic, Scottsdale, Arizona.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><a href="http://mobile.imedex.com/ELC/2013/6363/mp4/6363_mesa1.mp4" target="_blank">Dr. Ruben Mesa summarizes MPN updates from ASH conference</a> </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">(updates on Polycythemia Vera and Ruxolitinib in Myelofibrosis patients)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">In the next video, Dr. Mesa discusses the molecular abnormalities of MPNs (especially those with Polycythemia Vera):</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><a href="http://mobile.imedex.com/ELC/2013/6363/mp4/6363_mesa2.mp4" target="_blank">Genetic Profiling Shows Promise for Customized Treatments</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I want to learn more about this, as each fellow PV-er I meet seems to have a unique experience. Varied severity of symptoms, responses to treatments, and outside factors make living with MPNs all the more frustrating. Human beings want certainty, predictability, and a sense of control. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It seems we are in the midst of the MPN learning curve. At this point in human history, we can be grateful for the forward momentum of knowledge in this relatively obscure area of blood science.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Check out the ASH <a href="http://www.hematology.org/" target="_blank">website</a>.</span><br />
<br />Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com0tag:blogger.com,1999:blog-32745596.post-85724253089421130622012-12-01T08:00:00.000-05:002012-12-01T08:00:10.746-05:00Let's Play Medical Pinball!<span style="font-family: Trebuchet MS, sans-serif;">Apparently, I'm a slow learner. I believe that when things/people/events show up in one's life they present opportunities for introspection, learning and growth. Sometimes it's to practice patience, listen better, explore other perspectives, remember to be grateful. </span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">The latest "opportunity" in my life is arthritis and chronic pain. I've been dealing with increasingly frequent and more painful swelling in my hands and feet and arthritis in all my joints since April of this year. (I posted pictures on an earlier post). Some days I cannot get out of bed without assistance. Seven months is a long time to live like the rusty Tin Man from Oz.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b><u>Not My Department</u></b></span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">At first, the doctors put me back on prednisone (despite my previous horrible experience with it) because it is considered the "gold standard" for dealing with inflammation. It helped for awhile, but never completely knocked out the inflammation and pain. By August, the side effects of the prednisone outweighed any benefit. Tests for Rheumatoid Arthritis and Lupus came back negative. Whew!</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">All the while, my rheumatologist who treats me for Behcet's Disease was sympathetic to my plight but didn't have any answers. This would be an extremely rare side effect of the Remicade treatments, so he ruled that out. His hunch is that it is caused by the Polycythemia Vera disease process. He prescribed Colchicine (now called Colcrys) and I've been taking it for two months with no relief.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">My hematologist/oncologist believes it is rheumatological and not caused by the PV.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">My internist said that because I am a "complicated case with two rare diseases." The inflammation could be a result of one of the disease processes, a side effect of the Remicade infusions I get every 6 weeks, or something altogether new. </span><br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjTD0HwRe_ASlNeSlVPlcwKhq59c7d7T160PPl94FiCLyVpvkiXlCOv5uK2sjJePw8ImkL3HmaCu1BlpNQsTF5ZbkrODQpUL5rXqT0ConU2iFh1et891enhL3DynO5NKIBx4jgiQ/s1600/MedicalPinball.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjTD0HwRe_ASlNeSlVPlcwKhq59c7d7T160PPl94FiCLyVpvkiXlCOv5uK2sjJePw8ImkL3HmaCu1BlpNQsTF5ZbkrODQpUL5rXqT0ConU2iFh1et891enhL3DynO5NKIBx4jgiQ/s320/MedicalPinball.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Still Haven't Won this Game!</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;"><b><u>Living the Life of a Pinball</u></b></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">This fall, we "kicked it up a notch" and sought specialists at Emory University Hospital.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">I've been wanting to change my treatment for Polycythemia Vera from Hydrea to Pegylated Interferon because my blood counts are difficult to manage, even with higher dosage of the Hydrea.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">There is a non-randomized clinical trial through Emory that I might be able to join. It appeals to me because the study will document the effects of peg-interferon on PV patients. I find comfort in the notion that this illness has meaning if it contributes to greater knowledge for future patients.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Dr. Winton, the trial manager at Emory, requested I consult with their rheumatologist who is experienced treating Behcet's patients. That doctor viewed my parts that were swollen at the time of the visit as well as photos I've kept of previous flares. He concurred with my Kaiser rheumatologist that the inflammation process was not related to Behcet's, Remicade, or any other rheumatological disorder. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">With the mystery inflammation acting up, Dr. Winton is reluctant to have me start taking interferon. Interferon can have many undesirable side effects; it can trigger auto-immune responses. I don't need gasoline on the fire!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b><u>Ask the Experts: Fellow Patients</u></b></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Accessing the wisdom of my extended, international PV family, I shared pictures and queried whether anyone else has these issues. Turns out, it's rare, but YES. I was directed to explore Erythromelalgia (EM), another rare disease. Some PV patients develop symptoms best described as EM. It turns out that EM manifests in several shapes and forms. It is a clinical diagnosis (the only test is for patients who have a genetic pre-disposition -- generally younger onset). There are no tests for folks like me who may have "secondary EM." </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So, back to my doctors I go, armed with this new information. "Not likely" is the response I get from all but my internist. Still, I try a few of the treatments that work for some EM patients. </span><span style="font-family: 'Trebuchet MS', sans-serif;">I've tried taking antihistamines (both H-1 and H-2 inhibitors), plain old aspirin, and colcrys. All to no avail.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">My Next Experiment: </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">I am going to hold off on Remicade infusions (the next one is scheduled 3.5 weeks from now) and see if the inflammation resolves when the Remicade leaves my system.</span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">Why shouldn't a very rare side effect occur in someone who appears to specialize in "rare" conditions? Know I've got to keep fingers crossed that Behcet's stays away when the Remicade wears off. There aren't many other treatment options available to me.</span><br />
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<b><u><span style="font-family: Trebuchet MS, sans-serif;">Let's Try Another Approach: Acupuncture</span></u></b><br />
<span style="font-family: Trebuchet MS, sans-serif;">Two weeks ago, I began seeing an acupuncturist (professionally, of course -- Robert approves!). </span><span style="font-family: 'Trebuchet MS', sans-serif;">She determined that the primary cause of this painful inflammation is too much "heat" in my system. My blood, in particular, carries too much heat; likely due to the toxins in my system. </span><br />
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<i><span style="font-family: Trebuchet MS, sans-serif;">Toxins... really? You mean all those chemo pills, warfarin, and host of other meds can be toxic?</span></i><br />
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<span style="font-family: Trebuchet MS, sans-serif;">She explained that the acupuncture process will take awhile for meaningful results because it is working against all the medications I put in my body every day. [Note: she is not encouraging me to leave Western medicine, nor claiming to have the cure for the PV or Behcet's]</span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPa7eHZQAwRIaLOw59yz86Zeu6l_ho9muwZKLJpSFFzXLP2Y-NkYG_J2uiGr5HiSZ367Ueq6YT2sZA2niWl7ztlKeTCOobmB-YeIfTlMnmkpouzLMe8rBTxXtTiZvHLUoxxVQeKQ/s1600/IMG_2260.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" height="97" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPa7eHZQAwRIaLOw59yz86Zeu6l_ho9muwZKLJpSFFzXLP2Y-NkYG_J2uiGr5HiSZ367Ueq6YT2sZA2niWl7ztlKeTCOobmB-YeIfTlMnmkpouzLMe8rBTxXtTiZvHLUoxxVQeKQ/s200/IMG_2260.JPG" width="200" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Trebuchet MS, sans-serif;">Judge these non-retouched images at your own risk! I'm pretty cranky these days. ;)</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI5W61gK-I3QzNVXY_OszfbQBWT3qdO-cL1ugz55Fkf6pexcCHhYmHQgrR6o5WrBOFets7YGxWsPh2C7NTOiurK0vjd3FflQLkw3c6VvZgkg8d4KGAVUM5rbMcBvvvzKiJwdXw0A/s1600/IMG_2261.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: Trebuchet MS, sans-serif;"><img alt="" border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI5W61gK-I3QzNVXY_OszfbQBWT3qdO-cL1ugz55Fkf6pexcCHhYmHQgrR6o5WrBOFets7YGxWsPh2C7NTOiurK0vjd3FflQLkw3c6VvZgkg8d4KGAVUM5rbMcBvvvzKiJwdXw0A/s200/IMG_2261.jpg" title="Needles in my head." width="193" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Trebuchet MS, sans-serif;">The needles don't hurt a bit!</span></td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;"><b><u>Frustration Galore</u></b></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">The frustration has become overwhelming. It conjures up a slew of non-productive questions in my mind:</span><br />
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<span style="color: #660000; font-family: Trebuchet MS, sans-serif;"><i>How come so many intelligent, highly-trained doctors cannot determine the cause, or at least identify some treatment options for the inflammation?</i></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Sometimes it feels like they can't wait for my office visit to time out. It can't be easy for them to have no answers.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><i><span style="color: #660000;">How much worse would it be if the physical symptoms of the pain could not be visibly observed?</span></i> </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Even I think I'm making this crap up sometimes!</span><br />
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<span style="color: #660000; font-family: Trebuchet MS, sans-serif;"><i>How many days of intense pain can a person reasonably endure?</i></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">The pain can consume one's thoughts and make it difficult to think of, let alone tackle, everyday life. I'm taking low doses of Lortab (hydrocodone & tylenol) and have resisted stronger pain meds for fear of addiction. Some patients are really struggling with this issue, on top of everything else. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="color: #660000; font-family: Trebuchet MS, sans-serif;">How much are these illnesses harming my wonderful kids and hubby?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Moms are supposed to protect their children, be strong, and set good examples for their kids. "What's for dinner?" is a reasonable question; it shouldn't be answered with "I don't know ~ go fix yourself something."</span><br />
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<span style="color: #660000; font-family: Trebuchet MS, sans-serif;"><i>What would happen if I stopped taking all medications and let my body de-tox?</i></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Not sure if my body could de-tox before the blood thickens, new clots form, strokes occur, and Behcet's sores take off again.</span><br />
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<span style="color: #660000; font-family: Trebuchet MS, sans-serif;"><i>What the heck am I supposed to learn from all this?</i></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Now this question prompts me to find the humor in this.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Stay tuned for the next post!</span><br />
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<br />Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com1tag:blogger.com,1999:blog-32745596.post-14200003014196277272012-11-15T22:42:00.005-05:002012-11-15T22:49:48.476-05:00URL Pharma Price-Gouging of Colcrys Is a Pain in the Foot<span style="font-family: Trebuchet MS, sans-serif;">When I had my first gout attacks as a result of my Polycythemia Vera, the doctor prescribed colchicine to provide relief. Colchicine is a generic drug that is 1,500 years old (it comes from the seeds of the autumn crocus) and was used by the ancient Egyptians and others to reduce inflammation and other pains. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">In 2010, my $10 prescription co-pay priced the pills at $0.16 each.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Last month, my rheumatologist prescribed colchicine again -- this time for extremely painful and inflammed joints and tissue inflammation (erythromelalgia). </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Bring back the colchicine!</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">I went to pick up the medicine and the pharmacy tech asked, "Are you <u>sure</u> you want this Colcrys? It's <b>$328.75</b>."</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">"What? I want the generic version, colchicine. I don't need the name brand version." was my reply.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">She went back to the pharmacist to ask about this.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>How could a single pill go from costing $0.16 to $5.48? </b> What the heck? </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Here's what I learned:</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">In 1962, the FDA began a drug testing and approval process to make sure that new medications on the market are safe, effective, and accompanied with helpful information for physicians, pharmacists, and patients. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">In 2006, the FDA began the "<i>Unapproved Drug Initiative</i>" to get old medicines that have not gone through the FDA approval process off the market. These old drugs were about 2% of the prescriptions written at that time. The intent is good: protect us from bad drugs and potential dangerous side effects and interactions of medications. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It turns out that in 2009, <i>URL Pharma</i> agreed to take Colchicine through the FDA's review and approval process. In return, it gets three (3) years of exclusive rights to sell the Colcrys for gout and seven (7) years to sell for Familial Mediterranean Fever (through the Orphan Drug Act). </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It also can price it however it chooses. The FDA does not regulate pricing of drugs.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><b><i>But how much is too much???</i></b> </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">I believe increasing the price by <i>34 times higher</i> is beyond greedy... it is downright <b>cruel</b> to people who are ill and in significant pain.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So here's the practical rub: </span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">The study with 1,000 patients conducted by URL Pharma met FDA requirements, and it did not provide any new insights about the drug, contraindications, or interactions that were previously unknown to the medical community.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We are no safer today with colchicine (aka Colcrys) than before URL Pharma came along. What was a generic drug (and quite affordable) has become a brand-name drug owned and sold in a monopolistic, predatory manner.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">A rheumatologist told me that in a few years, it will go back to the $0.16 per pill.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I double-checked with my rheumatologist about this medicine, given my sticker shock. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">We decided that I would bite the bullet and get the colcrys.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Today, I went for my refill and learned that the price dropped a whopping $4.00 for 60 pills. So this month, each pill costs me $5.41. That's still predatory pricing in my book.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">This drug that costs $5.41 per pill used to cost me $0.16 per pill.</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">The pharmacy tech that dispensed the Colcrys to me said, "Wow! I couldn't afford to take this medicine if I had to. You're lucky you can afford it."</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I asked him if he sees a lot of patients who leave prescriptions at the counter because they are too expensive. "Several times a day," he replied. "Some people ask for a week's worth of a prescription because that's all they can afford this week or this month." </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">His words really hit home... <i>I am indeed lucky.</i> </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I am married to a wonderful guy who has a great job with excellent health insurance coverage. I have not been able to work in a meaningful way since struck by illness and that has taken a huge toll on me mentally and emotionally. (We miss the earnings in our household budget, too).</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">If dear hubby lost his job and health insurance, I would be among the millions of "Un-insurables" with serious pre-existing conditions. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The State of Georgia defers to the federal government's High Risk Insurance Program for people like me. To qualify for the federal program, I would have to be uninsured for 6 months. I'm pretty sure we wouldn't be able to afford 6 months of specialist visits and all my medications (we'd likely make too much money to qualify for patient assistance programs). </span><span style="font-family: 'Trebuchet MS', sans-serif;">I would likely experience thromboses again and maybe a stroke out before I could access the medications again.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It's no wonder that medical bills are the #1 cause of personal bankruptcies in the United States. People will do anything they can to ease the pain of their loved ones.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">My parents taught us this maxim: <i>Just because you <b><u>can</u></b>, doesn't mean you <b><u>should</u>.</b> </i></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">This concept applies to many aspects of life, including price gouging. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Imagine a world where people, corporations, organizations, and governments adhered to this!</span><br />
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<br />Marinahttp://www.blogger.com/profile/05869137043563129009noreply@blogger.com0