tag:blogger.com,1999:blog-5049055856620675862024-03-15T21:09:40.108-04:00eyes peeled, alwaysMy Peppe always told me: "Keep your eyes peeled–you don't want to miss anything" everywhere we went together. With eyes wide open, this is how I see the world - the world of a twentysomething cancer survivor.Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.comBlogger368125tag:blogger.com,1999:blog-504905585662067586.post-65261837793146542942013-10-08T10:26:00.002-04:002013-10-08T10:26:54.287-04:00Quotes by Karin - Book Request<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ0CRgrqecNWwesK219YY7SxfNnXJvHYLBenhK9aeHVZriw8OfiWUIopUg-T_e0yUsLucmT0Q4cncLMH6pifDvA9ZrHijSswZwhB-GENIOjCcYLLtpd5u8iEF4xpDcOxhtjSrSC07cGTo/s1600/Screen+Shot+2013-10-08+at+10.16.04+AM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ0CRgrqecNWwesK219YY7SxfNnXJvHYLBenhK9aeHVZriw8OfiWUIopUg-T_e0yUsLucmT0Q4cncLMH6pifDvA9ZrHijSswZwhB-GENIOjCcYLLtpd5u8iEF4xpDcOxhtjSrSC07cGTo/s400/Screen+Shot+2013-10-08+at+10.16.04+AM.png" width="256" /></a></div>
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At the Celebration of Life event on October 5th, hundreds of quote books were distributed as keepsakes. This 74 page collection of quotes was compiled by the readers of Karin Diamond's blog. Karin was a lover of words and storytelling. Since 2009, she publicly shared her prose with the world as she navigated trials and celebrations while deeply exploring all of human emotions. This collection is dedicated to her readers, whom she treasured, respected, and loved.<br />
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There are still some books available that have been set aside to be mailed to Karin's readers and friends who were not able to attend the Celebration of Life event. Simply fill in your information in the form below and a book will be mailed to you. Indicate if you have the need for multiple copies. That's all you need to do.<br />
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Email Craig Diamond with questions or other requests: craigtdiamond@gmail.com<br />
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"The only thing you take with you when you're gone is what you leave behind." -John Allston<br />
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<iframe frameborder="0" height="500" marginheight="0" marginwidth="0" src="https://docs.google.com/forms/d/1iNWq-bFv3NnU2Wa1NsnMeiph6nQHLIcQ8DA7biN0jtU/viewform?embedded=true" width="660">Loading...</iframe>Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com99tag:blogger.com,1999:blog-504905585662067586.post-40611187252119248642013-10-02T13:08:00.000-04:002013-10-02T13:08:34.774-04:00Celebration of Life - October 5th, 2:00<span id="docs-internal-guid-4014dc0a-79ac-2cce-5bad-727e78e42607"><div dir="ltr" style="font-weight: bold; line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="color: #222222; font-family: Arial; font-size: 16px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;">The Celebration of Life event for Karin Diamond is only a few days away. It is shaping up to be a fantastic gathering filled with musical and dance performances, speakers, pictures, food, non-alcoholic drinks, and beer and wine. The collective talent and collaboration for this event is extraordinary and will be unlike any other event of its kind. We are excited to honor and celebrate Karin at this family-friendly event on Saturday. There is no shortage of space for the many people who loved Karin. Here are some details to help you plan. </span></div>
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<span style="color: #222222; font-family: Arial; font-size: 16px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;"><a href="http://sscsummerwind.org/about/directions/" target="_blank">SummerWind address</a>: </span></div>
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<span style="color: #222222; font-family: Arial; font-size: 16px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;">40 Griffin Road N, Windsor, CT 06095</span></div>
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<span style="color: #222222; font-family: Arial; font-size: 16px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;">Please arrive on time for the 2:00 start of the program. Leave yourself time for the short walk over to the SummerWind venue from the parking lot. The seated portion of the program will start on time - this is not a drop in style event. If you have arranged with us to drop off food/drink, you may bring it by anytime Saturday morning or arrive a few minutes early to bring it to the food /drink tables. </span></div>
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<span style="color: #222222; font-family: Arial; font-size: 16px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;">There is no dress attire expectation. The program will be held under SummerWind’s beautiful large open sided tent. Dress for the weather and expect the temperature to drop significantly as the sun lowers in the sky. Wear whatever you’d like. FYI, Karin loved the color yellow. </span></div>
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<span style="color: #222222; font-family: Arial; font-size: 16px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;">After the seated program, there will be time to sign the guestbook in the adjacent tent, watch the slideshow that will be playing on repeat, view and take printed photograph keepsakes, flip through your copy of the Quotes by Karin book, and gather with friends old and new while enjoying light fare and drinks. </span></div>
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<span style="color: #222222; font-family: Arial; font-size: 16px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;">Leave when you need to, or stay as long as you want. When event cleanup begins, you’re welcome to join friends and family at the Cracker Barrel Pub at 30 Main St, Tariffville, CT. This local watering hole is a short 2.5 mile drive from SummerWind where a cash bar for pub food and drink is available. (The after-event gathering at the Cracker Barrel Pub is not to be confused with the similarly named Cracker Barrel restaurant franchise known for savory home-cooked style biscuits and gravy.) </span></div>
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<span style="color: #222222; font-family: Arial; font-size: 16px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;">Below is a preview of the program: </span></div>
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</span>Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com25tag:blogger.com,1999:blog-504905585662067586.post-18482797664035282812013-09-23T10:43:00.003-04:002013-09-23T10:43:42.968-04:00Obituary <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3-v0eOGXBvX5dqJWtR3CyBwp_XWhgzKLeTbtnafF5IbmCAVorBOESVFUL5CMukP__8utXAh_PEtjw5PmbCRzxfQO5nvoFsIHiqF3N0bKAKW82i092kTNk4ZHbEAucTn2xSaROcEUe4HM/s1600/DSCN0876.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3-v0eOGXBvX5dqJWtR3CyBwp_XWhgzKLeTbtnafF5IbmCAVorBOESVFUL5CMukP__8utXAh_PEtjw5PmbCRzxfQO5nvoFsIHiqF3N0bKAKW82i092kTNk4ZHbEAucTn2xSaROcEUe4HM/s320/DSCN0876.jpg" width="240" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Karin (Dubreuil) Diamond, 31 of Tariffville, CT, passed away in the comfort of her home on September 21, 2013, surrounded by her husband, family, and friends after a courageous four-and-a-half year fight with Hodgkin Lymphoma. Karin inspired others through her love of life, her respect for everyone, and her gift of words. She was passionate about people, wellness, learning, and living with intention. Karin enjoyed being active and connecting with her many friends from all around the world. Karin was beautiful, gentle, compassionate, smart, outgoing, and she radiated love.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">She took great pride in crafting her writing that she posted on her website <a href="http://eyespeeledalways.com/">EyesPeeledAlways.com</a>. Her work was featured in The Huffington Post, The Hartford Courant, Hartford Magazine, Cure Magazine, and other publications. Karin was a graduate of Torrington High School (2000) and the University of New Hampshire (2004), then worked in the Greater Hartford area in editing, marketing, writing, public relations, and communications.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Karin is survived by her husband Craig Diamond and her Sammy-dog of Tariffville, CT; her parents Paul and Laura Dubreuil of Torrington, CT; her sister Kristen Dubreuil of Denver, CO; her brother Michael Dubreuil and wife Rachel Pianta of Westbrook, CT; her brother and sister-in-law Eric and Rachel Diamond, nephew and niece Jake and Anna of Norfolk, MA; Uncle Kevin Brothwell; Uncle Mark Brothwell and his wife Roberta; and countless others who loved her.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">A Celebration of Life gathering will be held on Saturday, October 5th, 2013 from 2:00 - 5:00 PM at <a href="http://sscsummerwind.org/" target="_blank">SummerWind Performing Arts Center</a>, 40 Griffin Road North, Windsor, CT. In lieu of flowers, donations can be made in Karin’s memory to <a href="http://firstdescents.org/">First Descents</a>, which provides outdoor adventures for young adult cancer survivors, or <a href="http://www.mskcc.org/cancer-care/counseling-support/writing-visible-ink">Memorial Sloan Kettering Cancer Center’s Visible Ink</a> writing program.</span></div>
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<a href="http://vincentfuneralhome.com/book-of-memories/1674910/Diamond-Karin/index.php" target="_blank">Funeral Home Book of Memories</a>Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com13tag:blogger.com,1999:blog-504905585662067586.post-65479236739446426992013-09-22T20:29:00.000-04:002013-09-24T17:23:20.346-04:00A Crowdsourcing Special Project <i><span style="color: red;"><b id="docs-internal-guid--1fe124c-4831-dd89-5ec4-eff6a23959d5"></b>UPDATE: Thank you for the amazing and selfless work that Karin's readers have done to review her entire blog over the past 2 days. I've changed the status of the Google Doc and it is no longer active at this time. Your help is much appreciated and this project would make Karin so proud. I cannot wait to share the final quote book project with her readers! </span></i><br />
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<b style="line-height: 1.15;"><span style="font-family: Arial; font-size: 15px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;">Karin took so much pride in expertly crafting each word of each sentence that you have been following in this blog. She was working hard to publish a book, but sadly her time was cut short. To help preserve some of the best parts of her writing, I have started a special project to collect and print quotes from her blogs in a printed keepsake for those that loved her. Karin wrote over 350 blog entries since 2009, so this is a huge project. That’s where you come in. Let’s crowdsource her hundreds of pages of writing by each taking a small portion. I’m soliciting support to read through all entries and cut and paste the best lines into a shared Google Doc. These quotes will be organized into a printed collection so Karin’s words will be preserved in printed form.</span></b></div>
<b id="docs-internal-guid--1fe124c-4831-dd89-5ec4-eff6a23959d5"><br /><span style="font-family: Arial; font-size: 15px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;"></span></b>
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<b id="docs-internal-guid--1fe124c-4831-dd89-5ec4-eff6a23959d5"><span style="font-family: Arial; font-size: 15px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;">If you want to contribute to this project by reading through 1 or 2 entries (or however many you want), here are the directions: </span></b></div>
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<b id="docs-internal-guid--1fe124c-4831-dd89-5ec4-eff6a23959d5"><span style="font-family: Arial; font-size: 15px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;">Please first open the shared Google Doc from the link below. Scan through the Doc “Quotes from Karin Diamond” and find a blog date and title that has not already been reviewed. Add your name to the last column (Reader’s Name) so that others do not duplicate your efforts. Use the blog archive from the right side of eyespeeledalways.com to select the year, month, and blog(s) that you are going to review. If the blog includes any sentence(s) that are particularly poignant, special, funny, or awe inspiring, please copy and paste it into the shared Google Doc in the appropriate space, add quotation marks, and put -KD on the same line at the end of the quote. If Karin included a quote from someone else in her blogs, please include it in the Google Doc. Attribute the author’s name when you paste that quote. Please include the best lines only from Karin’s writing. Some entries will have more than others and there will be many that don’t have any quotes to preserve. That’s fine and to be expected. Record “None” in the Quotes to Preserve text field to indicate that the blog entry has been read and reviewed. Please read and review as many entries as you’d like but just be sure to finish an entry when you start it. Let’s avoid having multiple people review an individual blog entry until all have all have been reviewed by at least one person. When you paste in the Quotes to Preserve text field, please keep a consistent text size and style. Insert 1 line space between multiple quotes from same entry.</span></b></div>
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<span style="font-family: Arial; font-size: 15px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;">NO LONGER ACTIVE LINK - Link to the shared Google Doc: <a href="https://docs.google.com/document/d/1rx-pbYy9MBSYTK91QMdkQ1yTaAQNwtvgLVXfMqAFTA8/edit?usp=sharing" target="_blank">https://docs.google.com/document/d/1rx-pbYy9MBSYTK91QMdkQ1yTaAQNwtvgLVXfMqAFTA8/edit?usp=sharing </a></span></div>
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<span style="font-family: Arial; font-size: 15px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;">Of course your participation in this project is optional and not for everyone. If you are uncomfortable using a Google Doc, you may want to pass up participation in this project to ensure that the document does not accidently get messed. </span></div>
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<span style="font-family: Arial; font-size: 15px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;">Thank you to all who have read and supported Karin and me. Many thanks to everyone who will help with this project. I hope for Karin’s Quotes to Preserve to be ready to have as a keepsake at her Celebration of Life Memorial Service (details to follow). Contact Craig Diamond with ideas or if you’re experiencing problems with the shared Doc, but please understand if a quick reply is not possible at this time. </span></div>
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<span style="font-family: Arial; font-size: 15px; font-weight: normal; vertical-align: baseline; white-space: pre-wrap;">-Craig</span></div>
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</b>Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com8tag:blogger.com,1999:blog-504905585662067586.post-47689847070186102642013-09-21T20:25:00.000-04:002013-09-21T22:32:04.648-04:00Goodbye for Now 6/29/82 - 9/21/13By my side along with friends and family, Karin passed out of this world today, peacefully and calmly.<br />
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It's been a most difficult week. The cancer metastasized to her liver and toxins quickly built up. But not before many many more wonderful moments together. Karin maintained her poise, warmth, and beauty throughout her entire life, and her written words are a legacy that will keep her memory alive and well. Her writing has helped us all in different ways and will continue to benefit all who take the time to read, listen, and think. <br />
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Karin was able to maintain such an incredible outlook because of the people around her, especially those in her blog community who shared so much of their own lives with her. From the bottom of my heart, than you for your support and love that you've shown to both of us.<br />
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The energy that she has left behind for all of us is palpable. We must promise never to lose sight of the valuable lessons we learned from her. Embrace one another, share, learn, stretch yourself, embrace your passion, listen, love, and keep your eyes peeled.<br />
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I will love you forever, Karin Diamond. Goodbye for now.<br />
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-Craig<br />
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<i>Memorial Service details will follow. </i>Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com76tag:blogger.com,1999:blog-504905585662067586.post-25885824869233858552013-09-09T20:51:00.000-04:002013-09-09T20:51:23.653-04:00Lucy in the Sky with Diamonds
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<span style="font-family: Georgia, Times New Roman, serif;">I desperately miss writing and apologize for not giving any
updates and being so way behind on getting back to emails and messages. Things
have been very difficult. I was in the hospital for 5 days last week. Extreme
pain and the need for more blood products brought me in. I had severe pain over
Labor Day weekend in my knees and my ankles, so bad that I could not walk. The
nights were awful. Poor Craig had to deal with my screaming, crying anxiety
attacks as I tried to handle the pain. I’d have Craig get me heat, then ice,
then stack my legs on pillows, try to straighten them in front of me. Nothing
worked. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">While in the hospital, the goal was to titrate the pain
medicine so that we had a good balance between the woozy side effects of the
pain meds and keeping the pain under control. I’m home now and we’re not there
yet. Today was very difficult. I felt sloshed and so weak. I puked last night
after trying to get together my nighttime routine, then puked up a decent
amount of OJ this morning after all the exertion of bringing my laptop, foods,
and meds out onto the porch so I could enjoy some sun. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Everyone is very worried about me and wants me to accept
more help and keep in better touch, but honestly, to send a text message or
answer a phone call is so much work. I fall asleep and drop my phone while
trying to reply all the time. I can spend extended amounts of time just staring
into space and I hate it so much. I need to find some clarity. Obviously this
amount of pain medication is too much but I’m so afraid of the level of pain if
I come down.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">My family and friends have been incredible whether it’s
taking me to the hospital, visiting me in the hospital, or Craig and my mom
being right there to get me whatever I need and make sure that I am
comfortable. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">My platelets are still very low, hanging around 10,000.
Because of this, I am not able to continue on CEP oral chemo right now. I need
to be at least 75,000 to take it. However, I am still able to take the Rituxan
as it is a targeted antibody vs. traditional chemo and should not affect my
blood counts. I got my second transfusion on Friday. I’m putting a lot of hope
in this drug as I don’t know where else to turn. Again, thank you for the supportive emails and comments. I
look forward to when my head is clear again and I can get back to the craft
that brings me so much happiness. Right now however, it takes me 20 minutes to
write a short text message, so there won’t be any eloquent prose coming from
this girl. In fact, I’m dictating this to Craig right now. </span></div>
<!--EndFragment-->Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com22tag:blogger.com,1999:blog-504905585662067586.post-23903680831456636452013-08-27T22:23:00.000-04:002013-08-27T22:25:23.849-04:00Rhode Island Escape and CEP Start <!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">No energy to write a long blog, though I’ve got many story
nuggets collected. Consider this an executive summary of what’s been going on
with me. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">We spent two weeks in Narragansett, Rhode Island. It is
beautiful, especially the beaches. We rented a cottage the first week with
Craig’s brother and his wife and our niece and nephew; the second week with my
parents and sister. We had visitors on top of that and it was relaxed and easy
– for the most part. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Highlights: </b></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Getting to play with our niece and nephew in the sand and
water and be with them for their morning and evening routines. They are
adorable. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Spending time together with our brother and sister-in-law
who we rarely get to see. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-The sun and ocean and sand: warm, sparkling and soft. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Bringing our beach chairs right down into the water and
reading a book while the waves rode over our feet. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Being with my parents and sister on the beach all day
bringing back so many childhood memories. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Steamers. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Lobster rolls. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Del’s frozen lemonade. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Sunset cruise in Newport Harbor.</span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Staying for a night at a special friend’s fabulous Newport
ocean-side beach house – even though Craig lost the key and the debacle that
followed. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Escaping for a favorite couple’s wedding and reconnecting
with many college friends from UConn. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Watching Jaws on the beach with thousands of others on
beach chairs under blankets with the ocean and a full moon behind us. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Visits from friends and their kids and even an overnight
with my parents’ longtime best friends and their son. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Fantastic outdoor showers. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-A visit from my brother and his wife on the last night. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Lowlights: </b></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Adjusting to the side effects of the difficult CEP oral
chemotherapy I am currently on – incredible fatigue, lightheadedness, thrush
and mouth coating, no appetite. I started it on vacation so every day brought a little surprise. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Difficult mornings/early energy then big crash that didn’t
jive well with other’s schedules. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Major frustration surrounding how weak I am and not being
to help out much with the kids or beach packing or anything, having to be so
focused on not throwing up, and on garnering the strength to get my bum from
the house to the beach. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Breakdown moments missing my old days of swimming and
boogie boarding and biking and paddle boarding – all of which I couldn’t do.
Tried to push resentment away but it was difficult. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Breakdown moments surrounding people having to help me and
again, not having the energy I wanted. I had to keep shifting expectations and
knowing that everyone else was there for a slow, relaxing time too and all did
their own thing in our own time. It was very hard to let go. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-After one week on the CEP, I had to get my blood counts
checked at the local hospital. Got a call that night from Dr. O that it was
unsafe for me to go through the night without a transfusion. My platelets
dropped to 6,000 and my hematocrit was under 23%. I spent the night in the
ER/hospital with Craig receiving both blood and platelets. My port leaked and I
woke up covered in a bloody mess. Otherwise, the nurses were very kind and the
facility beautiful. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Because my counts dropped too low, I have been pulled off
the CEP regimen until they rise. This was not unexpected as we knew it’ll be a
fluid process as we watch how my body reacts to it; that’s the only reason I
signed onto the idea knowing that there were no hard and fast rules but that we
would listen to my body. I have not been on treatment for about 9 days now,
only remaining on the Prednisone which is the “P”. I’ve been on Prednisone for almost
two years now regardless, but it still makes me crazy. I’m very emotional and
still dealing with breakthrough pain, pain management and functioning on
narcotics trying to find some kind of balance. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I was in the hospital again for the day yesterday needing
more blood. It is obvious that we will need to reduce the dose of this regimen
or move on from it. I’m worried about playing catch-up again. The longer I am
off of treatment because of low counts, the more chance there is of the cancer
growing. Again, seeking that magic drug that won’t knock me down and will just
keep things at bay. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">We’re now talking about adding in Rituxan, which has just
started being used off-label for CD-20 positive Hodgkin Lymphoma. It is a
targeted antibody that has proven effective in NHL and CLL. Supposedly no side
effects since it is even more targeted than SGN-35, however, big risk of scary
infusion reactions. I think that
it is worth a shot though. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I took a complete break from all correspondence, social
media, writing, blogging, etc. so it’s been a bit of a crash landing getting
back into reality. Having everything scattered and unopened does not help my
anxiety level. I can’t run and hide from reality forever. I just want to be
comfortable physically and emotionally again and am working day by day to get
there: some days are easier than others. Ones spent on the beach with the
people I love were certainly the easier ones. Now it’s back to being alone
every day and trying to figure all this shit out. What do I do with this time?
How do I make these decisions? What if I’m just plain tired and don’t want to
deal with any of it? Why can't I just keep burying my head in the Rhode Island sand?</span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFjuyQFEYLzhU51vE2k3Yt8qJYe6cg6oEhRFykr5NO5bwKmAHVSJMPNiSJw_afc8CzlZFo9ulquk53L9qNBtFDn_SdesDUthJwnyDkWMFmGgW18gdKoFKEsX1t55VbrUl0_f-AR_0i50E/s1600/IMG_1323.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFjuyQFEYLzhU51vE2k3Yt8qJYe6cg6oEhRFykr5NO5bwKmAHVSJMPNiSJw_afc8CzlZFo9ulquk53L9qNBtFDn_SdesDUthJwnyDkWMFmGgW18gdKoFKEsX1t55VbrUl0_f-AR_0i50E/s320/IMG_1323.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: right;"><i>Wild child, Anna. </i></td></tr>
</tbody></table>
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjKmwsQP5pN3LZBmOiIC0L2n91vy2OKLJmYvUjavltzFSlkR5CKgAdEJc_SaIL6yG5hGsvqjN_x_tn7CvmG_cg-FQc3__6ndtxkNmoHm21aZkBoOzXzlA6usXJL52rDKIGLTIJM8ANHLg/s1600/IMG_1349.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjKmwsQP5pN3LZBmOiIC0L2n91vy2OKLJmYvUjavltzFSlkR5CKgAdEJc_SaIL6yG5hGsvqjN_x_tn7CvmG_cg-FQc3__6ndtxkNmoHm21aZkBoOzXzlA6usXJL52rDKIGLTIJM8ANHLg/s320/IMG_1349.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: right;"><i>Big boy, Jake. </i></td></tr>
</tbody></table>
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzlKn8cRRrfptTF2rVESz-Ki3M2_-c6NMG4KsdsVjgEeBbkMdzszZ92txvLKHKkETiFJCVUwJKVfdG6zJvjPbNj7MMMLmbiiUzS2E5RRwl7W9hV2vkhmpoIrr9fnD7lIUflx61YUZgdl8/s1600/IMG_3785.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzlKn8cRRrfptTF2rVESz-Ki3M2_-c6NMG4KsdsVjgEeBbkMdzszZ92txvLKHKkETiFJCVUwJKVfdG6zJvjPbNj7MMMLmbiiUzS2E5RRwl7W9hV2vkhmpoIrr9fnD7lIUflx61YUZgdl8/s320/IMG_3785.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: right;"><i>Our Bonnet Shores rental - perfect.</i></td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrjeOzv7PF8sD-DNrM73tOOsJuAD_EDNCgrH0jTV4yI5opGNB3IwLAJTVvltQTeWCHSJaZirsHIt7N2Y1e5ezBZrhInr6Roc14JlSbkbNkBQwW4KQRi_F0ubUwI41a3N5RGIt_FxQMzq4/s1600/IMG_3796.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrjeOzv7PF8sD-DNrM73tOOsJuAD_EDNCgrH0jTV4yI5opGNB3IwLAJTVvltQTeWCHSJaZirsHIt7N2Y1e5ezBZrhInr6Roc14JlSbkbNkBQwW4KQRi_F0ubUwI41a3N5RGIt_FxQMzq4/s320/IMG_3796.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: right;"><i>The ladies in the back of the Jeep. </i></td></tr>
</tbody></table>
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-Lf_ToqtoHXy9-MBd57aRmLyFD6mCULdXyo7NBGCQEcImK-veKPY-YkL6MXghyphenhyphenBiKxKDcMtMgX4LGo2bXIHUr7-Na_H8efxjc4bSP0lv4Pkh6kxxLGsB3C7lWDFKKoUmCD1QYtG1r88A/s1600/IMG_3843.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-Lf_ToqtoHXy9-MBd57aRmLyFD6mCULdXyo7NBGCQEcImK-veKPY-YkL6MXghyphenhyphenBiKxKDcMtMgX4LGo2bXIHUr7-Na_H8efxjc4bSP0lv4Pkh6kxxLGsB3C7lWDFKKoUmCD1QYtG1r88A/s320/IMG_3843.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: right;"><i>Fellow sailors.</i></td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHucZ-152ACOdqeoLIUETsISWeOgVYUPfOIBNEA8bzZSYcRJxA9QPqTdHfgZXg8YWPJ2cuU4KnsSdEKVv2gean31CfASsk6OoZYc9coWcE9M5yESO8S7GAPYv6WbEtM8HVCRqlb_3f_Sc/s1600/IMG_3848.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHucZ-152ACOdqeoLIUETsISWeOgVYUPfOIBNEA8bzZSYcRJxA9QPqTdHfgZXg8YWPJ2cuU4KnsSdEKVv2gean31CfASsk6OoZYc9coWcE9M5yESO8S7GAPYv6WbEtM8HVCRqlb_3f_Sc/s320/IMG_3848.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: right;"><i>Newport sunset cruise. </i></td></tr>
</tbody></table>
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<tr><td class="tr-caption" style="text-align: right;"><i>Beautiful Buddha in the sand. </i></td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIkxoo39peI74DNjfrE9PY6zyAR_0RGrOmDwzgoqqs_w0vULaTlOQlds6C7TI3GQSOafhachrWwtst3aFnvrgicmGiWBH_SobubnrJXWgZbfnASnm08sPGtUAdc8W8cbzaIkFNWcFpxqU/s1600/IMG_3883.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIkxoo39peI74DNjfrE9PY6zyAR_0RGrOmDwzgoqqs_w0vULaTlOQlds6C7TI3GQSOafhachrWwtst3aFnvrgicmGiWBH_SobubnrJXWgZbfnASnm08sPGtUAdc8W8cbzaIkFNWcFpxqU/s320/IMG_3883.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: right;"><i>Flowers bigger than my face at the Umbrella Factory - and I have a big Prednisone-swollen face. </i></td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn7wxjizKnJNqspd2Rx-1OwEGvhMQ1TZsslqc1nX-VA567Z5o8kNvyWZ6MnDhbSoaEaJ4wSczEuE8WkXlIAgTCFRdkgAL-sNbOIO5CrpPNrTTlpB7SQEp5uJ4X21GIfY8lFUNTr0zy5o4/s1600/IMG_3890.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn7wxjizKnJNqspd2Rx-1OwEGvhMQ1TZsslqc1nX-VA567Z5o8kNvyWZ6MnDhbSoaEaJ4wSczEuE8WkXlIAgTCFRdkgAL-sNbOIO5CrpPNrTTlpB7SQEp5uJ4X21GIfY8lFUNTr0zy5o4/s320/IMG_3890.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: right;"><i>Perfect set-up. </i></td></tr>
</tbody></table>
<br />
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<tr><td class="tr-caption" style="text-align: right;"><i>The whole gang on the last night. </i></td></tr>
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<!--EndFragment-->Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com9tag:blogger.com,1999:blog-504905585662067586.post-75205190420873536822013-08-09T10:24:00.002-04:002013-08-09T10:27:57.469-04:00Shift in Plan<!--[if gte mso 9]><xml>
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<span style="font-family: Georgia, Times New Roman, serif;">I am here and okay. There have been some changes but I feel
strongly that they are the right ones. I am no longer pursuing inpatient IVAC.
It did not hold the disease for more than a couple of weeks and for the massive
side effects it caused and all the required transfusions and hospital time it required,
it seemed against all logic to keep going with more cycles. I’m having
unmistakable lymphoma pain.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">We’ve regrouped – long conversations with Dr. D, Dr. O, my
therapist, family, special friends and most importantly, myself, over the past couple
of weeks. I have decided not to pursue a third transplant at this point. I am
trusting my gut and my instinct on this one, which are speaking to me very
strongly. I am not on board mentally, physically or emotionally and I’m most
concerned about quality of life right now. I would need to be in
close-to-perfect remission<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Georgia, Times New Roman, serif;">With that said, tomorrow we head for a beach vacation in
Rhode Island where we’ll spend time with my brother- and sister-in-law and
niece and nephew and then my parents, sister and maybe brother and wife with
friends dropping in and out as well. Sam Dog is coming, too. I know that the
sea and the sand will do wonders. We secured the house rental months back, and I'm so excited that the timing actually worked out for us to make it. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I’m starting up an oral low-dose chemotherapy regimen today,
which I’ll be able to bring with me. I’m getting hooked up with at-home Neupogen
shots in case I need them. I’m able to get bloodwork checked at a lab down
there. I’m in the hospital right now getting two units of red blood cells to
boost my energy as my counts were very low and I’ve been very symptomatic
(hematocrit of 7.4). Dr. O and his team are doing everything to accommodate
this vacation realizing, as always, the importance of being able to manage this
disease while still living my life. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I hope to have some quality writing time with my laptop over
these two weeks away as well. I’ll write in more detail about what this all
means but that’s the gist. I’m looking forward to sunsets over the ocean,
lobster rolls, outdoor showers, and plopping my toes in the water, ass in the
sand. <o:p></o:p></span></div>
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<br /></div>
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<br /></div>
<!--EndFragment-->Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com20tag:blogger.com,1999:blog-504905585662067586.post-37498665845573715772013-08-01T18:02:00.000-04:002013-08-01T18:02:04.571-04:00IVAC At-Home Recovery
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<br />
<span style="font-family: Georgia, 'Times New Roman', serif;">Welcome, August. I’m proud to say I made it through July –
barely, but I made it.</span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I’ve been home since last Thursday when I was deemed ready
to leave my hospital bubble. This past week has been one of recovery and
discovery of my limits and my capabilities. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">There has been a whole lot of sleeping happening and resting
in general, but also some actual summer fun mixed in. I refuse to be robbed of
the entire experience of summer 2013, so I’ve done what I can with the
incredible help of Craig and my mom and sister who have been here to nurse me
back to health and keep me entertained so I don’t totally lose my shit focusing
on what I’m facing at the moment. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I can’t say enough about how kind my husband is. Since the
very beginning he has ensured that I keep normalcy in my life and knows what
makes me happy and wants to make sure I do it. Even if I complain at the onset
and say that I can’t, he pushes me just enough so that I don’t fall down the
rabbit hole and disappear. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<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/AVvXsEgM00ySe-NlLnY-wh_CAKbEQk-Pv0F6eZnnkihLddEXldCcwf75G0pNvOjq8M2MVUvH4oSGTobZvLHxzeJy-YWoSzz4mCg5A8Mi43wwOZhWX28989E_Ox-CiuUluoluI9_qzQbsfqM5ggM/s1600/IMG_0339.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM00ySe-NlLnY-wh_CAKbEQk-Pv0F6eZnnkihLddEXldCcwf75G0pNvOjq8M2MVUvH4oSGTobZvLHxzeJy-YWoSzz4mCg5A8Mi43wwOZhWX28989E_Ox-CiuUluoluI9_qzQbsfqM5ggM/s320/IMG_0339.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: right;"><i>Incredible ladies</i></td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">It’s very easy to push people away when I’m not feeling
well, but he knows I always feel better when surrounded by the very, very
special friends I have in my life (in balance with my much-needed alone time).
With that in mind, this week we went to an outdoor Rolling Stones tribute
concert with friends, had a few friends here in the evenings just to hang, had
a date night of a delicious dinner in one of our favorite parks, and I had a
girls night at my home where six of my closest friends since high school (or
earlier) brought over tons of food and albums of old photos and we spent the
night laughing and talking out on the porch under the summer stars until the
mosquitos sent us indoors to continue there. It’s been a lovely and wonderful
week. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I feel so very loved and so much more comfortable in
allowing myself to talk more openly and honestly and to allow others to help me
– whether by talking with me, bringing us food, sending adorable gifts and
treats that brighten our days. I am much more accepting of those who want to
spend time with me and help out because I realize that it’s not a burden to
them - they truly want to – and I truly
appreciate them being in my life. I’ve also accepted those who are not there
and realize that this is difficult for others to handle, too. Yes, it’s taken me
being fantastically weak to get to this point socially, but I’ve been testing
the boundaries and have been so pleased with how receptive and loving everyone
has been – not that I ever doubted it, just that I was always scared and
guarded. Right now I don’t really have a choice but to let it all hang out. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<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/AVvXsEim6xde_u1Syo4cte4RHzx9UpuDXv7CBpWXNrLCsgNgpWFZel485KYLKnHSvAtfJ2DrG32d05hHfj8Cxvsos2rb7EqChc5i80MxAhC4fNK8gW0X7sV1il_vwIwusOwxuiPx8EiLvjLibyI/s1600/photo-1.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim6xde_u1Syo4cte4RHzx9UpuDXv7CBpWXNrLCsgNgpWFZel485KYLKnHSvAtfJ2DrG32d05hHfj8Cxvsos2rb7EqChc5i80MxAhC4fNK8gW0X7sV1il_vwIwusOwxuiPx8EiLvjLibyI/s320/photo-1.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: right;"><i>wooded beach</i></td></tr>
</tbody></table>
<div class="MsoNormal" style="text-align: right;">
<span style="font-family: Georgia, Times New Roman, serif;">I’ve also been spending many days with my mom and my sister
(who is home from out west to spend time with family for a while). My mom is
beyond incredible and has always been. She swoops in and cleans my house,
changes my sheets, helps me with paperwork, rubs my feet and calves with
lotion, waits outside the bathroom door to make sure I don’t fall in the
shower, escorts me to appointment after appointment, cooks for me, tucks me in,
all while able to laugh and bitch right along with me about this crazy
conundrum we find ourselves in. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">My sister has been here to relax with me, watch over me,
cook me food and just hang like sisters do. We don’t have to impress each other
and it’s so nice to have her around. I can talk or not talk, fall asleep or be demanding and she's cool with it. As going to an actual
ocean/beach would take way too much out of me, we spent one day together set up
on a blanket, me under an umbrella, at a little pond beach in my town. It was
so nice to be out enjoying some sun and summer breeze amid the pine trees. We
made our own “beach” experience. She’s been so helpful and thoughtful in so
many ways. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I just started driving again – short distances – for the
first time in weeks and that feels good. Every day I am getting a little more
strength. But it’s taken a while to get here and I’m still <i>far</i> from perfect. Tuesday marked three weeks since the start of
IVAC. It is as brutal as they promised. Even since being home I have been so
weak. I could barely walk up the stairs for the first few days and taking a
shower and getting dressed was a big accomplishment for the day. I would need
to go to bed afterward. The nausea has lingered and the fatigue is phenomenal.
I really have to pace myself. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I barely have an appetite, but I do have overall body aches
and some pain. Yes, in my damn hips. It’s nearly impossible to know if it’s
pain from cell death, pain from the Hodgkin’s flaring despite the harsh
treatment, pain from my bone marrow working hard after the Neupogen shots. I
try so hard to stay in tune, but things are all over the place right now. But
what I do know is that it is nowhere near the pain I was in pre-treatment and
I’ve also still been remiss of high fevers, so this must mean something! <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Same goes for the palpable lymph nodes in my neck, which I
touch no less than 129 times a day. Some days I feel that they’re growing,
others that they’re shrinking and even others that new ones are popping out.
It’s certainly difficult not to let paranoia take over. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">We’ve been watching my blood counts closely. My white cells
are great – high in fact. My reds are low, but no more than usual. It’s my
platelets that are lagging. At most recent check, they are 59,000. It is unsafe
to do a second round of IVAC until I am closer to 100,000, especially knowing
how low my platelet level dropped and how minimally effective transfusions were
after the first round. If I don’t have enough reserve there could be
life-threatening bleeding complications. Dr. Dailey and I also agreed that I should
get my body stronger before more treatment. I’ll get my counts checked again tomorrow
and we’re tentatively aiming at starting up Monday. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">However, if I am having Hodgkin’s symptoms, then we need to
strongly consider not doing another round of this. It would not be worth
putting my body through that extreme toxicity again. It is very dangerous. We’re
going to see how I feel. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">In the meantime, we’ve been back and forth with the
haplo-transplant team at Fred Hutchinson in Seattle. My parents, brother and I
are all getting our HLA typing redone and having to get special bloodwork done to
be sent back to them so that they can determine who of the three of them would
be my strongest match. The doctors there are in touch with Dr. O and everyone
is working so that if I do hit a remission and I do decide that I want to do a
third transplant that all is ready to go as quickly as possible. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I haven’t gotten any closer to making that decision. I don’t
think I’ll be able to until I see the results of my PET Scan post cycle 2.
That’s going to reveal a whole lot. And, whatever way it goes, each scenario
carries a whole lot of baggage. No evidence of disease? Great, but that leaves
me with a huge decision to make. Do I go for transplant, which could
potentially cure me despite the very real risks, or does it mean that I opt for
much less toxic, novel therapies in clinical trial that will give me quality of
life but we have no idea how much life if the remission starts to slip away.
The chemo didn’t work? Does this mean it’s over? I was told if IVAC doesn’t
work, nothing will work. Do I continue to pursue more trials if and when
something opens that I haven’t tried already, or do I just focus on comfort and
quality of life, spending time enjoying it instead of in and out of the
hospital all the time? I’m predicting a pretty hellish time leading up to that
scan and have no idea how I’ll stay sane. One test has the potential to seal my
fate. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">But before I deal with all of that, I first have to somehow
gear up to knock myself down to zero again <i>just</i> when I’m getting a little
glimpse of feeling better. It’s that old scenario of knowingly placing my palm
on a hot burner. It will hurt. Isn’t this the definition of insanity? Banging
your head on the wall continuously and expecting a different outcome? Well,
this is one final bang, one big hopeful push that for once I will have a
different outcome: instead of growth, retreat. </span><o:p></o:p></div>
<!--EndFragment-->Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com8tag:blogger.com,1999:blog-504905585662067586.post-66639971467191616872013-07-24T23:35:00.003-04:002013-07-24T23:35:33.501-04:00IVAC Cycle 1 Hospital Recovery
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<br />
<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/AVvXsEjN_0u-9p6MndkDj3MoHn8t7XwcSFDoboDs8znK6k6xWz6NeAoma0WXPreETt4ntaBqmKTXCA4mhLF0t2_6FnvH4TKs7CbLjVpBNrXrUWJgMWI4swPkOAxfcrsM4ERUuRCwhponqb0I5h4/s1600/IMG_3750.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN_0u-9p6MndkDj3MoHn8t7XwcSFDoboDs8znK6k6xWz6NeAoma0WXPreETt4ntaBqmKTXCA4mhLF0t2_6FnvH4TKs7CbLjVpBNrXrUWJgMWI4swPkOAxfcrsM4ERUuRCwhponqb0I5h4/s320/IMG_3750.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: right;"><i>Goodbye sweet, curly ringlets. </i></td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">It is now Wednesday, July 24. I have been in the hospital
for a week. That’s after being in the hospital for six days the previous week.
I’ve been in the hospital something like 16 out of the last 20 days. But, my
run will hopefully be ending tomorrow. As long as I can get through the night
without any fevers and nothing moves backward in my bloodwork results, then I
am going home tomorrow. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">This truly is where I needed to be. In the very beginning I
was so depressed, upset that I couldn’t do anything more than lie in bed and
Craig said to me: “You’re in a cocoon right now. This is what you’re supposed
to be doing.” And that’s what it was. I’ve been in a cocoon receiving the support,
supplements, care and monitoring to bring me back to stability so that I could
emerge a butterfly (completely metaphorically – I am far from a dainty,
colorful butterfly right now.) </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I will go home tomorrow and I will have one week to enjoy a
little summer. Then, next Wednesday I am back in for a second cycle of IVAC.
This time we will reduce the doses I receive of the drugs so that it is not so
harsh on me. I can expect that I’ll probably have to return to the hospital
after the six days of inpatient therapy to once again cocoon in a safe place. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>IVAC Cycle 1 Recovery Highlights: </b></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Every day but two I received a blood product: sometimes red
blood cells, sometimes platelets, sometimes both. Thank you blood donors. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Though I was getting daily platelet transfusions, they just
weren’t sticking. It was starting to get unnerving when every morning’s
bloodwork would reveal numbers like 5 and 6 (norm is 143) despite having
received a whole bag the night prior. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-It was just as discouraging to keep hearing my white cell
numbers being read at “0” or “less than 0.1” day after day – no movement. This put me in the "neutropenic" category, which meant that I had essentially no immune system. With that comes lots of restrictions: no fresh flowers, no fresh vegetables, no fresh fruit, no takeout. </span></div>
<div class="MsoNormal">
<br /></div>
<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/AVvXsEjuhLfIjwjLOYJTWYBM35XtIjsOYlNrT_V6RKR4VqdUD1InTS89b0jNZQY_hf07yA9d0jYVS7pnvFjy2RvDdNtC9XSCPPH3RTJvbFJQP-9xkadncur-EiU8zpx-oublLDl_29JURenmG-s/s1600/IMG_3751.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/AVvXsEjuhLfIjwjLOYJTWYBM35XtIjsOYlNrT_V6RKR4VqdUD1InTS89b0jNZQY_hf07yA9d0jYVS7pnvFjy2RvDdNtC9XSCPPH3RTJvbFJQP-9xkadncur-EiU8zpx-oublLDl_29JURenmG-s/s320/IMG_3751.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: right;"><i>Lips swelling, throat closing, mildly concerning. </i></td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-I kept running low-grade fevers, so they ran every kind of
test and blood culture imaginable. Everything came back negative, though they
had me seen by the infectious diseases team and kept me on broad spectrum IV
antibiotics just in case. I think it’s safe to assume now that they were just
the neutropenic fevers that happen when the body’s disease fighting white cells
are super low. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-I had an incredible allergic reaction to a bag of
platelets. My body became covered in hives, all my skin became red and raised,
my upper lip swelled with a bulge on its inside, the back of my throat swelled
and I felt as if I would scratch my entire skin off my body the itch was so
intense. My sweet, sweet nurse stayed with me and talked me down as she
injected more and more Benadryl, on top of the Benadryl I had already been
pre-treated with. It seemed to take forever for the reaction to fade and I
admit I was very scared. If I didn’t have Susan with me to talk me through it I
probably would have lost it. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-To prevent reactions the next day, I was pumped with extra
IV Benadryl, super Tylenol and Pepcid. I avoided reaction but didn’t see the
rest of the day. Obviously, with all of this Benadryl surrounding daily
transfusions, most days were spent doing a whole lot of sleeping it off. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-I was able to leave the room with a mask on, so got some
laps in around the floor. I also got two free massages and a Reiki session. </span></div>
<div class="MsoNormal">
<br /></div>
<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/AVvXsEjzL3cgUW9wzgCT51gUO-bWTUlP8WbIq6AAC2YC8L2junoMb4UWmnuWIfJv3QCv2zo-vplbdqCyzCAbB8SYuZGgwKoEkwBO-lU7WI1ahx_5idf_lQbUIEjBLbYcb2K89OWIKPE7bVMdmBc/s1600/IMG_3740.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzL3cgUW9wzgCT51gUO-bWTUlP8WbIq6AAC2YC8L2junoMb4UWmnuWIfJv3QCv2zo-vplbdqCyzCAbB8SYuZGgwKoEkwBO-lU7WI1ahx_5idf_lQbUIEjBLbYcb2K89OWIKPE7bVMdmBc/s320/IMG_3740.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: right;"><i>Handfuls of hair. </i></td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-All of my hair fell out. On Saturday night, my follicles
died and let it all go. I ran my fingers through my hair and would come back
with handfuls. Of course, once I discovered this, I couldn’t stop touching it.
I sat in my bed, not crying, just staring blankly into space as for the fourth
time I watched my hair tumble out of my head. For a few hours I wrapped it
around my fingers and pulled out chunks, made ponytails that would fall right
out and ran my hands from front to back coming away with fingers wrapped in
dark curls. The beautiful curls I had just had reshaped with a $50 haircut. I
filled a teacup with all of the hair I yanked then had to force myself to stop by
tying my headband over what remained and called for Ativan to force me to fall
asleep. The next day, Craig brought his hair clippers and finished the deal for
me. For the fourth time, I am now bald and look like a very identifiable cancer
patient. It’s disheartening. Nothing to hide behind now. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
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<tr><td class="tr-caption" style="text-align: right;"><i>Frothy tea, anyone? I realize I am disgusting.</i></td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-I got through 13 days in the hospital, including days
receiving severely strong chemo, without vomiting, nor really any nausea to
speak of. Today, the first day I’m not even hooked up to the IV pole – no
antibiotics, no fluids, no blood products and I get hit with a huge bout of
nausea. As fast as my nurse ran, the IV Zofran didn’t make it in time and she
had the pleasure of wiping me down with a cool cloth as I wretched into the
standard Pepto pink bucket – my absolute favorite. The nausea hung out for the
rest of the evening. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>What Got Me Through It: </b></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-nurses that went absolutely above and beyond. We shared a
lot of laughs and a lot of tender moments. I always felt safe and so well cared
for. I could relax knowing I was in good hands. Same goes for the Patient Care
Associates who were always there to bring me whatever I needed, to make my bed
nice and tight, and after being here so long they knew exactly what I wanted at
my bedside when I woke up and could anticipate my schedule. I didn’t have one bad experience or
clash. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-the mac and cheese, which was actually decent</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Mindless TV: Jimmy Fallon, Ellen, House Hunters
International, anything Kardashians </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-piles of blankets</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-lots of family time with my parents, sister, brother and
sister-in-law, even though I slept through a lot of it </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-visits by my sweet, sweet friends full of laughs and
stories from the outside world</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Craig’s nightly visits after work when we’d catch up on our
days, trying to recreate what we have at home. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-FaceTimeing with Sammy Dog and seeing the pictures our
teenage neighbor would text us of her while she was taking care of her. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Netflix movies </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-A nice window view overlooking a gazebo and garden </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-naps, naps and more naps </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-laps around the floor with my IV pole (Jinx) </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-Facebook/Pinterest/Twitter – more stalking than commenting.
</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-dumb magazines </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-reading the cards and opening the packages Craig would
bring from home that people sent </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">-All the e-mails and texts of encouragement, jokes,
check-ins just to see how I was doing </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">My cancer pain is gone. My high fevers and night sweats have
stopped. My palpable lymph nodes feel smaller. Let’s hope these all are good
signs. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I’m ready as hell to leave tomorrow, but I believe
everything worked out as it needed to. I’m once again safe to be in the “real
world.” Being gentle with myself and keeping what my body has been through in
mind, I plan to take full advantage of this week of
freedom while I build back up and drink in the fresh air at every opportunity. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com12tag:blogger.com,1999:blog-504905585662067586.post-2332574116952018642013-07-18T15:09:00.001-04:002013-07-18T15:09:10.381-04:00Boomerang
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDjySCaXma8Mx32VE99KByXLIGlDiw48bjsUNhuGhaL5fn_kEbtvBfSD4Cidw-ue0KQqTeVhAl1pVO8Gq22F8HwyMNA8iLC3twp7jw8XIFvcnGeEuW41j7EhUh2rxjh_qVUO8Abxd9zh8/s1600/photo-88.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/AVvXsEgDjySCaXma8Mx32VE99KByXLIGlDiw48bjsUNhuGhaL5fn_kEbtvBfSD4Cidw-ue0KQqTeVhAl1pVO8Gq22F8HwyMNA8iLC3twp7jw8XIFvcnGeEuW41j7EhUh2rxjh_qVUO8Abxd9zh8/s320/photo-88.JPG" width="239" /></a></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I was released from the hospital on Sunday. I was able to
remain home until Wednesday afternoon when I was sent back to the hospital, where I still am. Everyone keeps saying it’s “where I need to be.” I understand
this and guess I agree, but that doesn’t make it easier being in here. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">My days at home were rough. I was very weak, lethargic,
alternating from nauseous to hungry to not knowing what I wanted. I’d go from
fevers to sweats to clamminess. Every tissue in my body hurt. It was obvious
that the chemo was ravaging through me. I could barely walk up and down the
stairs. My mouth began to fill with thrush and ulcers. I was not in any shape
to take care of myself. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Craig took care of me on the weekend and in the evenings and
my mom or sister or a combination of during the days. On Wednesday my mom and dad
came together to take care of me. I
was scheduled to go into the clinic for bloodwork, but I knew before getting
there that things would be very low. I woke up with dotted bruises along my
arms and my stomach and even around my eyes, indicative of low platelet count (the blood
cells responsible for clotting). I now know that’s called petechiae. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I could barely stand getting to the clinic in Avon. They
pricked my finger and ran my blood through the machine. My counts barely
registered. I am very neutropenic, meaning no immune system. My white blood
cells are 0.1 and the machine couldn’t even calibrate the breakdown of types of
cells within that. My absolute neutrophil count was unreadable. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Most concerning was that – as suspected – my platelet count
was only 6 K/uL. People are supposed to fall within the 140-440 K/uL range.
Transfusions are usually done around 12. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Dr. Dailey didn’t want me walking around like that and
didn’t like the low and high temperatures I was having, nor the symptoms I was
describing. I got a direct admission back to the cancer floor I had come from
just three days earlier. I’m still
here and probably will be for a few more days. Despite having received the bone
marrow-stimulating shot of Neulasta on Monday, my white cells haven’t started
climbing yet. I’m on broad-spectrum antibiotic just in case there is an
underlying infection. I’ve already received a bag of platelets and am right now
waiting on a bag of red cells. I guess this is like a tune-up. However, they
really don’t want to let me go until my white cells start trending upward and
it’s tough to know how long that will be. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I’m wiped out for sure. But I signed up for this. I knew it
was going to be hard. I guess it’s hard to imagine how hard it would get and it’s
hard to remember that I’ve been this low before and I have come out of it. My doctors told me before we
started that it was very likely I’d be back in the hospital after not too long
receiving blood products and rebuilding while being monitored. No one sugar
coated this for me, I just hoped I was going to slide through a little easier. </span></div>
<!--EndFragment-->Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com14tag:blogger.com,1999:blog-504905585662067586.post-51231443787760936102013-07-11T12:18:00.002-04:002013-07-11T20:43:53.926-04:00IVAC Day 3 Update I have been so moved by the comments left after my last two blogs. I am so touched and so in awe as to how we can all feel so connected by relating to each other through common human experience. When it comes down to it, I think we all just want to feel comfortable, loved and happy and I can't thank you enough for helping me to feel that in an incredible way even during these most difficult of times.<br />
<br />
Thank you for letting me into <i>your </i>lives by following along with my journey. I so much enjoy hearing how it relates to your own experiences - cancer or otherwise and cannot tell you how much joy it brings to think that my words could help spark a little inspiration or perspective shift. What an amazing thing language and technology are to be able to connect us around the globe! Forever humbled.<br />
<br />
I wanted to just give a quick update to say that I am three days into the inpatient chemotherapy IVAC at Hartford Hospital. I wouldn't say it's "fun," but there haven't been any big complications or reactions. I certainly know that I'm on chemo: bloated, swollen, achey joints, foggy headed, flushed, extremely fatigued, etc. I receive the Cytarabine twice a day, but only for a few days then I receive the Ifosfimide and Etoposide each evening in addition to a drug called Mesna to protect my bladder that I receive throughout the night.<br />
<br />
Because Cytarabine can cause neurological issues, I have to do the steps of a drunk driving test before each dose and sign my name and prove I can walk normally. It can also come out in my tear,s so I need to put steroid eye drops in twice a day.<br />
<br />
I may be having some of that expected urinary tract inflammation as I was in quite some pain this morning; we're monitoring that closely. I'm also a lot more tired today.<br />
<br />
Fevers have calmed down, so we're hoping this is a sign that the drugs may already be working. I have also not had any pain breaking through my Fentanyl patches. These are big changes to when I was admitted on Wednesday absolutely drenched having broken a 103 degree fever on my way in and in severe, severe pain that they had to immediately get me on meds for. These may be two very good signs. But I'm also on Decadron steroids along with the chemo, which could be helping these symptoms as well so don't want to make any assumptions.<br />
<br />
I am very comfortable here. I say it every time. The nursing and PCA staff are phenomenal. Plus, they have all treated me many times now and there's a lot of comfort in that. They gave me the "best room on the floor". It's private and large with a nice flat screen TV and a view out to a meditation garden.<br />
<br />
The hospital recently changed their food options as well. Items are much healthier and less processed and you are able to order off a select menu vs. the two tired choices they would offer for each meal. I've been really impressed.<br />
<br />
This whole thing is a six-day process. As long as I am doing okay then the schedule has me getting discharged on Sunday morning. It will be at home when the side effects will really set in. I'll be getting a shot here of pre-emptive Neulasta to kick up my WBC production as all three of these drugs are going to take a huge hit on my counts. It's expected that I'll be back to the clinic and maybe even hospital next week to get blood products or look into issues. I can expect to feel very weak and crummy, will have to be very careful around germs and all that jazz. I am also going to lose my hair again. I am beyond sad to say goodbye to my soft curls, but it's a small price to pay, I suppose.<br />
<br />
I have family and friends to help and will need to rely on them to get me through these next couple of weeks.<br />
<br />
When my blood counts do recover - probably at least two weeks, then the plan is to do a second and last IVAC cycle. We would not do more than that - too toxic.<br />
<br />
In the meantime, we are working with the transplant coordinator at Fred Hutchinson in Seattle to get things moving on background testing, evaluations, testing of my parents and brother as potential donors so that things are in place should I hit a magic remission and should I decide I want to go that transplant route. Time will tell.<br />
<br />
Right now, it's time for Mad Men, lunch and a nap.<br />
<br />
<br />
<blockquote class="tr_bq">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnel2Z1XAKaUh3V9VtD1jWMT7ZxRSMVhQXirjMSQqZpFqAXHUpsxTtl_vohLBiMuX_RyU8y6tEtc_idkhkgfkEhdW17_bbW1hSgMssRM7_qSxpjE8Dg0NnIWB6FH-R48hPHfpsv1qLdjA/s1600/HuffPo+full+logo.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnel2Z1XAKaUh3V9VtD1jWMT7ZxRSMVhQXirjMSQqZpFqAXHUpsxTtl_vohLBiMuX_RyU8y6tEtc_idkhkgfkEhdW17_bbW1hSgMssRM7_qSxpjE8Dg0NnIWB6FH-R48hPHfpsv1qLdjA/s1600/HuffPo+full+logo.jpg" /></a><br />
<i>For those of you who don't follow me on other social media outlets or through the HuffPo, here is a link to my latest piece: <a href="http://www.huffingtonpost.com/karin-diamond/cancer-is-not-all-i-have_b_3561696.html" target="_blank">"Cancer Is Not All I Have."</a> If you enjoy it, please share. You can <a href="http://www.huffingtonpost.com/karin-diamond/" target="_blank">"fan"</a> me here and receive updates anytime I have a blog published there. </i></blockquote>
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Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com26tag:blogger.com,1999:blog-504905585662067586.post-29232960428790615022013-07-09T12:58:00.002-04:002013-07-09T12:58:33.919-04:00Giving IVAC a Shot I am in the hospital starting the IVAC chemotherapy today. In the simplest terms, I'm doing it because I'm not done yet. I hope with everything in me that this will be strong enough to take down the disease and am visualizing hard that it will. I am prepared that it will take me down with it for a bit, too, but am confident that as I've bounced back up before, I will again.<br />
<br />
I am touched beyond belief by the outpouring of support I've received since my last blog post. I am one incredibly fortunate woman. Thank you for all your positivity and love.<br />
<br />
Here we go ... .Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com49tag:blogger.com,1999:blog-504905585662067586.post-2110258256565546972013-07-06T21:55:00.002-04:002013-07-06T21:55:39.185-04:00Difficult Realities
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmkeTfkUdshgsho6d86OXbzP5s_Ulm_CN7CH7Y0K7aj7CXvE4qLcyq4iLFmLzKFgObZRWGTse2ilV1u3hJ2RJ7d_si_2h9W1d8N_2hTfimdLCiU6cJ8RJI1j-HyFgMC76QymaHTaWBO0E/s1600/block+island+.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmkeTfkUdshgsho6d86OXbzP5s_Ulm_CN7CH7Y0K7aj7CXvE4qLcyq4iLFmLzKFgObZRWGTse2ilV1u3hJ2RJ7d_si_2h9W1d8N_2hTfimdLCiU6cJ8RJI1j-HyFgMC76QymaHTaWBO0E/s320/block+island+.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Block Island crew (minus 1) enjoying a perfect day.</i></td></tr>
</tbody></table>
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<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">I realize I’ve been absent from
blogging and thank you for the concerned comments. If I haven’t gotten back to
messages, e-mails, text, please don’t take offense. Life has been focused
highly on mere survival the past couple of weeks. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">Yes, I did celebrate my 31<sup>st</sup>
birthday with a wonderful trip to Block Island with Craig and a fantastic group
of fun people. After days of rain and storms, the skies opened for us to enjoy
a lazy day of perusing the adorable island- the native trip for Craig and me. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">That Monday previous was the first
time I’ve ever lost control crying in a doctor’s office. My mom took me in for
my second infusion of the VBM and when describing to Dr. Dailey the blinding
pain I was in, I couldn’t even get the words out. All I could do was cry and my
mom had to fill him in through her own teary eyes. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">I got through the chemo in hopes that
this pain was just a flare of disease being killed. The rest of the week got
progressively worse in the pain department and what I needed for pain control
was making me so tired and so woozy.
So was the chemo. So was the disease. I almost canceled on the weekend
birthday trip, but pushed and was so glad I did. What was the difference if I
was sitting at home on the couch in pain or sitting on an Adirondack chair
overlooking the harbor in the sun? Luckily, the non-narcotic Toradol was
holding my pain (an intense version of Aleve) so I was able to be clear-headed,
but I had to come off of it after the weekend due to possible liver damage it
can cause. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">Everything got worse. I started
having chills and fevers and my lymph nodes in my neck are only expanding by
the day. Pain was getting out of control. My parents took me into NYC to see
Dr. O at Columbia last Wednesday as he wanted to look at me in person after
hearing my symptoms. He agreed with my instincts that the chemo wasn't doing
anything. I should have felt some improvement. Instead, it was only making me
feel like shit on top of shit by dropping my blood counts and making me even
more weak and lethargic. We're discontinuing it. In looking at the long list of
treatments that I've had, there's really no sustainable options left. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">He started talking about what a
fighter I’ve been and what a trooper I’ve been to handle all of this and I just
wanted the talking to stop. He said he’s never seen someone that VBM did not
work in. I knew where the conversation was going. I was so tired, I felt like I
was just staring at him feeling so defeated and simultaneously trying not to
make eye contact with either one of my parents knowing that if I did I would
burst into tears. The disease is getting too out of control and there are scant
viable options left. This is coming from the doctor who flies to China,
Germany, Switzerland, Italy to speak specifically about Hodgkin Lymphoma. His
name is synonymous with research surrounding the disease and he has seen
hundreds of difficult cases like mine. He is also an extremely positive doctor
with so many creative solutions. Unfortunately, the strain of my disease is
real fucking creative, too. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
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<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">What he is suggesting as kind of a
last-ditch option is a blast of a very toxic chemo regimen called IVAC. It has
come up in the past as a kind of “save until the absolute end” option. I would
need to receive it in the hospital over four days with constant monitoring. It
will be very rough, I will get mouth sores and vomit and lose my hair again and
there's a slight worry that I wouldn't bounce back from it. However, it can
open some bridges for me. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
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<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">Right now my tumor burden is too high
to use any burgeoning, experimental drugs, Dr. O gently explained to me. Yes,
they may go at the cancer in a different way, but they are not going to be
effective against the high volume of cancer I have right now. They will not
make me comfortable and out of pain. Basically, I need a chemo strong enough to
match the disease right now or we're only going to be kicking pebbles and
making my body weaker and maybe even ruling out those clinical trial drugs for
the future when they would be more effective for maintenance. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">If I do not do the IVAC I will die
from too much stress in my body. I can't continue like this. Even though I
don't have disease involvement in or around major organs, my body eventually
will just shut down with the continued stress response it has to be in to deal
with the pain and tremendous inflammation. A recent blood test (Sed rate) came
in at 143 mm/hour marking the inflammation in my body. It should be under 10.
As Dr. Dailey explained to me, it is very difficult to know how long I would
have - weeks? months? Before a “near-death” experience. The lymph nodes in my
neck are so large that you can see them sticking out now. <o:p></o:p></span></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">Should I choose to do the IVAC (which
would start as early as Tuesday), it could bridge me to the following
things: <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">a) There is one more chance at a cure
and that is a second allo transplant. This one would be what's called a haploidentical
transplant and would use one of my parents or my brother as a half-match. It is
very risky and obviously would be very intense, as my first allo transplant
was. I would do this at the nation's leading transplant center: Fred Hutchinson
in Seattle. I've been in talks with a transplant doctor there who knows Dr. O
(everyone does) about seeing what we can do at this point. The two of them have
been in talks. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">I have too much disease to do it at
this point (which would be the purpose of the IVAC), but I don't even know if
there's anything else that would affect me being an eligible candidate. We also
don't know yet if there are any reasons that my parents or Michael (who would
need to be at least a 50% match) would not qualify as donors. We have to get as
much as possible in the works to see if this is even an option and to be ready
so that when the IVAC gives me a near-remission, we can jump on it, fly my ass
to Seattle and start up that whole process. Again, this choice would be a
tremendous risk that I might not make it out alive from or that I would end up
with permanent damage as a result of Graft vs. Host Disease. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">b) If it clears up a lot of my tumor
burden, I can move onto less toxic clinical trial drugs with the intent of
keeping things at bay. But if I do this I could lose the one opportunity from
the one remission I ever get to get a cure from it. I'd continue with
maintenance drugs as long as each one kept working and live out as much life as
possible relying on continued scientific developments to come up with new
things for me to try with hopefully a decent quality of life. There's no way of
knowing how much time this would earn me. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">c) This will help me to make the
decision of whether it is time to stop all of this. I'm told that if IVAC does
not work then it's safe to assume that nothing in the world will work, again
this is coming from the foremost expert in the world. We'll then know that
these tumors are just treatment resistant and then I'll need to make a decision
of what to do with that knowledge. At the least, I’ll know that I tried the
harshest thing I could (in addition to four years of constant treatment and two
stem cell transplants) and it didn't work and decide that now it's time to
focus on the quality of the end of my life and on being comfortable - not more
arbitrary treatments and hospitalizations. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">There have been a lot of tears among
my parents, Craig, me, my doctors. I am mostly in disbelief and just so
confused how this happened so fast. No, I am not ready to die. Even in pain, I
still love my life. I'm faced with some really big decisions right now about
how I can still try for some more time, and also how those decisions will
effect what very likely could be my last few months of life. Do I want to spend
it in intense treatment? Do I want to be far from home and again brought to the
rawness that was some of my experiences with my first transplant? I'm very
overwhelmed, very scared, so tired and very sad. I am not angry, just more
confused than anything as to how this could happen so quickly but then again I
guess I’ve been dodging bullets for a long time now. I've tried so hard and
feel so defeated. How do I make the most of the life I have left? When do I say
that enough treatment is enough and that it's time to just be comfortable and
enjoy what remains. No one has a crystal ball. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">I'm writing this from Hartford Hospital right now. I had
to come into the ER because I was having fevers upward of 103 and they wanted
to rule out infection. Plus, I was severely anemic and have already received
two bags of blood. Dr. Dailey came over after his shift at the cancer center to
talk with me. He too is concerned about how harsh the IVAC will be on me, but
has a great amount of respect for Dr. O and trusts his instincts. He too talked
about that if I don’t do this, then we’ll need to look at taking comfort care
measures as there is nothing else for me right now. He thinks I should give it
a shot and then I’ll know that I did everything that I could. <o:p></o:p></span></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">He talked candidly and softly and gently as he always does
to my mom, Craig and me. While he was saying all of these serious things like
how sad it would be for him and my family, but that they’d all support my
decision, all I could think about was how severely I had to pee. I had called
for a nurse to let me go several times. I was tethered to heart monitors and an
immovable bag of blood. I thought that I would literally wet the bed while
having one of the most important conversations of my life. I gave my mom the
glaring eyes and whisper across the room and she knew to go out and try to
recruit someone. Then, I finally had to just apologize to Dr. Dailey and say
that I couldn’t concentrate. I had to pee so bad. He picked up the call button
himself and said that there was a “bathroom problem” with his patient. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">Finally, someone came and I had to stumble out of my own
end-of-life meeting to the sweetest urination relief of my life. It was
especially funny because it reminded us all of when Forrest Gump got to meet
the president but had so many Dr. Peppers all he could say was “I gotta pee”
when he got to him. I – who very rarely drinks soda – had fittingly sucked down
a Cherry Dr. Pepper an hour before. The laugh took the sting out of things. <o:p></o:p></span></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">I’m on my second hospital overnight now. My fevers
continue. It’s obvious that they are tumor fevers, but they need to wait for
blood cultures to come back to confirm that and ensure I don’t have a blood
infection. I just continually rotate between fevers and sweats. The two bags of
blood helped a lot of with my energy and clarity and the extra steroids they’re
giving me has kept my pain at bay. I should be going home in the morning. <o:p></o:p></span></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">However, if I go for this IVAC (I am leaning toward yes,
after some mental prep) then I’ll be back in here on Tuesday to start and will
be in for at least four days. <o:p></o:p></span></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">I am not giving up hope, but rather communicating the
realities of the decisions we're faced with. I welcome miracles and assure you
that we're staying positive. Just because I am writing this out doesn’t mean
it’s going to go down this way. I’d welcome spontaneous healing with open arms.
Please keep all the good juju, prayers, chants, visualizations coming that have
gotten me through this far. I am forever grateful. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">I am also so fortunate to have a husband and a family that
are so respectful that these are my decisions to make for my life and for my
body and that they will support me fully in whatever I choose. I know it is
beyond difficult for them, but no matter what, they make me feel truly loved. <o:p></o:p></span></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">Same goes for my friends whose kind words as they found
out about how real my situation just got have already done so much to heal my
heart, which I thought was literally breaking. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">I am by no means in this alone. I will have help and I
will have comfort and I know that the love I already have all around me with
only explode further as we walk down this precarious path together. <o:p></o:p></span></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">Thank you to all my blog readers for your continued
support and positive messages of encouragement. Even when I can’t respond to
them all, please know that they truly mean the world and help to fill my soul
when I feel very helpless. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1a1a1a; font-size: 13pt;"><span style="font-family: Georgia, Times New Roman, serif;">I’ll be searching my heart and my gut for some answers and
when I make a decision, it will be the right one. I am confident in my
instincts and the strength and the drive and the fire that I still have within
me. I am the one with the power to direct that flame. Even if this is my time,
I know that all who love me will never let that light die. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com45tag:blogger.com,1999:blog-504905585662067586.post-84695047929431744362013-06-21T13:06:00.000-04:002013-06-21T13:06:18.011-04:002013 Visible Ink Staged Reading Video The Visible Ink program at Sloan-Kettering has posted the video from its 2013 staged reading. Here is a link to my piece, <a href="http://www.mskcc.org/videos/karin-diamond-guru-elevator" target="_blank">"The Guru in the Elevator,"</a> being performed by two Broadway actors who I was thrilled hit the sentiment on the head.<br />
<div>
<br /></div>
<div>
Please take the time to watch the others as well. Each showcased piece offers a very unique perspective. If you watch just one other, <a href="http://www.mskcc.org/videos/mark-jason-williams-s-play-recovery-scene-two-bob-amy" target="_blank">Mark Jason Williams's play "Recovery - Scene 2 - Bob and Amy"</a> is incredibly moving. </div>
<div>
<br /></div>
<div>
Enjoy!</div>
<div>
<br /></div>
<div>
<br /></div>
<div style="text-align: center;">
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Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com5tag:blogger.com,1999:blog-504905585662067586.post-80273068344661466202013-06-19T21:14:00.003-04:002013-06-19T21:20:12.820-04:00In Search of a Raft <!--[if gte mso 9]><xml>
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<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRXy7YEJ2SDzYki5CLwAKxgGuGO2eCcnt7C1RpwbSPjuzyRMS5eh6gMG2PROz4AdsWL8kPuA3KkcY4f0_e4GTPJKjRlIV0TrFudGwL-52G3J0SBjjTGhdMpQdLymdoyyWaYTI4pIEfbjI/s1600/photo-86.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRXy7YEJ2SDzYki5CLwAKxgGuGO2eCcnt7C1RpwbSPjuzyRMS5eh6gMG2PROz4AdsWL8kPuA3KkcY4f0_e4GTPJKjRlIV0TrFudGwL-52G3J0SBjjTGhdMpQdLymdoyyWaYTI4pIEfbjI/s320/photo-86.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><div style="text-align: right;">
<i>Ducking out in the rain with Craig for some </i></div>
<div style="text-align: right;">
<i>Thai food to celebrate his birthday between</i></div>
<div style="text-align: right;">
<i>a very hard-to-swallow doc appointment and</i></div>
<div style="text-align: right;">
<i>an always-enjoyably claustrophobic MRI. </i></div>
</td></tr>
</tbody></table>
<br />
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">June doesn’t seem to be my month this year. Really 2013 in
general hasn’t been treating me that well in terms of the whole cancer thang.
Everything else in life has been wonderful, but the lymphoma has really been
rearing its head far too much. Too many hospitalizations. Too many
transfusions. Too many side effects. Too much pain. Too many appointments.
Things have not been stable for over six months now, and the up and down is
tough. I know I can’t stop the waves and I’m doing my best to ride them
instead, but it is getting exhausting. I wish someone would throw me a freakin’
raft I could float on for a while. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Yes, it is confirmed that all of the pain and the fatigue I
was having were indicative of cancer growth. I had a PET/CT Scan done of my
full body and an MRI to take a close look at my pelvis and there is progression
in old spots and new spots have developed. We have to give up on yet another
treatment after just two cycles. Goodbye Gemzar. Hello VBM. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">VBM is a combination of Vinblastine, Bleomycin, and
Methotrexate. I have had both B and V in my frontline ABVD treatment and I’ve
also had V as a single-agent therapy when trying to get into remission for my
allo transplant. I have never had Methotrexate used as a chemotherapy agent.
This is a pretty rough, intense regimen but one that is proven to work.
Apparently it is very old school, something that was used before ABVD came to
the forefront of Hodgkin Lymphoma therapy and kind of got forgotten about,
though it had very good results. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">My scans look pretty horrendous and my pain has been equally
so. To get me out of this, we started up already with the new treatment. I had
my first infusion on Monday after having my PET/CT Scan that morning. Craig had taken me in for an MRI the week prior that kicked this all off. It was how he got to spend his birthday. Then this Monday was a
long day in the city for my mom and me. I vow to never again take the train
home after receiving treatment. It was pretty unpleasant. The train was extra
cold with A/C blasting and extra jostling. I was nauseous, then had a huge
onset of pain and then an uncontrollable bout of chills. I wanted to get off the
train so bad and cursed the entire 98-minutes. I tried to sleep or read but
nothing worked. The last 20 minutes were sheer torture. Then it was still an
hour-and-15-minute drive home, though it was much more comfortable to be in my
mom’s car on the heated seat. I could barely muster the strength to get from
the car to my living room couch. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">The post-chemo feelings continue to today. I’m very
lethargic, dry-mouthed, swollen feeling. The pain is pretty well controlled,
but my stomach is very unhappy and my body pretty angry. If I let myself, I
feel as if I could sleep for a week straight. But, I don’t. I’m determined to
still be a functioning human being even while being back on very traditional
chemo. The process is bringing back familiar feelings of my past and frankly, I
hate it. This is not a long-term treatment, but again, trying something to get
me out of the woods here. We have to stop this disease from growing and get rid
of what’s there so that I can move onto a treatment that is more tolerable and will
serve as maintenance to keep everything at bay. But right now it is just too
dangerous to put me on anything that is an experimental therapy.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">In the meantime, I’ve started the conversation with a
transplant doctor at Fred Hutchinson Cancer Center in Seattle about the possibilities
of a future second allo transplant so that if the time comes that I do get a
remission from this regimen, I know what all of my options are for what to do
with that remission. That whole thing is nauseating in itself to think about. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Last week/weekend I attended a writers’ conference at
Wesleyan University where I was saturated with teachings about the craft and
the business. It was a wonderful distraction and a good dose of much-needed
inspiration. It was exhausting commuting back and forth for long days feeling
like I was, but it was worth it. I need to have life balance of some sort even
if that means pushing it when I barely can. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Also of note: Sunday we celebrated my dad in honor of
Father’s Day and also marked my second transplantaversary. June 16, 2011, was
the day that I received my sister’s stem cells and began the growth of my new
immune system – my “rebirth,” so they say. It also would have been my friend Steve’s 38<sup>th</sup>
birthday had HL not finally taken him far too soon. I cried a lot, for him, for
his wife, for me and my family and thinking about what we’ve been through. I
cried also because I’m so happy to still be here two years after such a
traumatic experience. I cried because I’m still not cancer free and that I know
there is a lot more to endure. The memories of it all are still very raw: both
the ones that make me shudder and the ones that make me smile in triumph. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">No, where I am at right now is certainly not ideal. I need a
lot of help. But, I am here and that is what matters. I am doing my best to
make the most of it and to not allow myself to fall into the pits of
discouragement. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Sick or not, I still have to get groceries, cook meals, do
laundry, pay bills, keep up our house, research treatments, keep on top of my
medicine and appointment schedules. Sick or not, I still want to love on my
husband, play with my dog, hang out with friends, spend time with my family, go
out to dinners and breakfasts and see movies and plays, listen to poetry, read, write, go for walks and get
back into yoga again. Thank goodness for those things or I don’t know where I’d
be. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">No matter how shitty I feel, the summer weather is still
beautiful, the flowers striking, my love for those in my life stronger every
day. This is what I tell myself to calm myself down when the fears get to be
too much. I know we are teetering on the edge of no options. I’m not sure what
the plan is if the disease doesn’t respond to this traditional regimen either.
In truth, I am getting scared. I can’t do much else but cling desperately to
hope. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">In just a couple of weeks – June 29 – I’ll get to celebrate
my 31<sup>st</sup> birthday. 31. I couldn’t be more thrilled to keep reaching
these milestones, though I do wish I could be running, not crawling, to them. </span></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com10tag:blogger.com,1999:blog-504905585662067586.post-35265821404006945012013-06-11T17:05:00.001-04:002013-06-11T17:19:27.759-04:00A Complicated Relationship<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQUE1Gl0heObCFn6iWoraFQG4reQbXeM9Vx0hchO1xHGdU-GHpIskXK-JJu0dnr74-SdanxDpp9IprNtQCceH_o608ii2nz2YNvxpWNyO9HMCqpj8RXq1-0pggB1kQS8-6M3BFAD_imDM/s1600/HuffPo+full+logo.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQUE1Gl0heObCFn6iWoraFQG4reQbXeM9Vx0hchO1xHGdU-GHpIskXK-JJu0dnr74-SdanxDpp9IprNtQCceH_o608ii2nz2YNvxpWNyO9HMCqpj8RXq1-0pggB1kQS8-6M3BFAD_imDM/s1600/HuffPo+full+logo.jpg" /></a></div>
<br />
Hope you enjoy reading my latest piece for <i>The Huffington Post</i>'s Generation Why Series: "<a href="http://www.huffingtonpost.com/karin-diamond/a-complicated-relationship_b_3421897.html" target="_blank">A Complicated Relationship</a>." This essay personifies the cancer within me and focuses on the diseased relationship I have with this toxic lover that's got a stranglehold on me - the stuff of daytime television drama.<br />
<br />
If it sounds familiar it's because it's born from a <a href="http://eyespeeledalways.blogspot.com/2011/08/breakup.html">blog entry</a> I wrote back in 2011, when recently out of my allogeneic stem cell transplant and learning what it was like to be in recovery, thinking that my cancer relationship was finally over. With this reworked piece, I honed in on our complicated relationship status and reworked it to focus on the continued stresses my lover brings.<br />
<br />
As always, if you like it, please share it on your Facebook pages, "Like" it, Tweet it, comment here or on the Huffington Post page itself. I'd love to hear your thoughts! Thanks for reading.<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjshQ3O649F7wrLhHRNAKF32zfdDKsgzHnBb3S_Cp0587qJeWCwH5hUc399_Y5bJNASB88zUIRvMB32Bhyphenhyphen4PuMV2cPrS-to-azm89gNSCcCXfU5ZRQveGPAVHgJJIRUTciQ3jGPD2a_oxU/s1600/HuffPo+H.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjshQ3O649F7wrLhHRNAKF32zfdDKsgzHnBb3S_Cp0587qJeWCwH5hUc399_Y5bJNASB88zUIRvMB32Bhyphenhyphen4PuMV2cPrS-to-azm89gNSCcCXfU5ZRQveGPAVHgJJIRUTciQ3jGPD2a_oxU/s200/HuffPo+H.jpg" width="200" /></a></div>
Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com3tag:blogger.com,1999:blog-504905585662067586.post-44309083892068077022013-06-04T19:31:00.000-04:002013-06-04T19:31:04.244-04:00Pushing Through Like I Said I Would
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<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/AVvXsEgJmU30bO_8am0_l0dudmxaZ43RWBhnvLI82vWHrBIuF0k_jA34N2GB3xh6V6m1UZH9I4-05YHciqoi6I-UQ-dwjgnhyZwGIbCudHutCzmAzuRTtlhAAc2QF2HaHgh9kb9MkdTpyddWE84/s1600/DSC02377.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJmU30bO_8am0_l0dudmxaZ43RWBhnvLI82vWHrBIuF0k_jA34N2GB3xh6V6m1UZH9I4-05YHciqoi6I-UQ-dwjgnhyZwGIbCudHutCzmAzuRTtlhAAc2QF2HaHgh9kb9MkdTpyddWE84/s320/DSC02377.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: right;"><i>A throwback photo.</i></td></tr>
</tbody></table>
<br />
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Sometimes I am embarrassed by how I reacted to my initial
diagnosis, shocked at how immature and naive I was – invincible! cancer! fighter!
At other times, I’m so jealous of who that 26-year-old was. I feel that about
other aspects of my life, too, not just dealing with my disease. As time passes
and as I age, more difficult things happen, which can leave me guarded, jaded and tired at times. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I feel like things used to be so much simpler, though they
probably weren’t, they were just different. But what I can guarantee is that I
did not know as much and now that helps or hurts me depending on the situation.
</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I’ve never been one to say: “ignorance is bliss.” I’m
curious, an information gatherer and problem solver almost to a fault. I want to
figure everything out and know about not just everything that is happening in
my world, but in the greater world around me. I think that’s why I love books
and good news coverage and documentaries so much, because these are things that
are really happening even if we as people pretend they aren’t. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">But right now, in this moment, I know too much. I know that
the tremendous pain I’ve been in over the past four days means lymphoma is
growing. It is very intense and very concentrated right in my hips and pelvis
and sacrum, exactly where it always flares up. It’s at times like this when
maybe ignorance would be bliss, and I could just pretend that it’s a fluke –
too much squatting when planting our little herb garden. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">My doctors and I don’t even need to directly speak it: they
know I know and I know they know what’s going on. No one has said: “It’s cancer
in your bones that is causing you this pain” just like no one says the ground
is wet because it is raining. Why state the obvious, especially when we’re all
getting a little tired of acknowledging it? </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I’ve been prescribed a new cocktail of pain meds that got me
out of the blinding, seething pain that was Sunday and Monday and into the
uncomfortable, woozy, nauseating – though pain-free – high that has been last
night and today. Tomorrow we will stick with the plan of a higher dose of
Gemzar and the addition of the chemotherapy drug, Navelbine. We’ve got to stop
the growth as the pain is intolerable. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">When I was first diagnosed, I went at this so simplistically.
It was a challenge that I would conquer. I knew it wouldn’t be easy, but I
never thought it would be impossible. Now, I’m looking back at 26-year-old
Karin for some of that old positivity and confidence. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">In my post from May 8, 2009, entitled “Diagnosis,” I wrote: </span></div>
<blockquote class="tr_bq">
<span style="font-family: Georgia, Times New Roman, serif;">"So it's confirmed. I have been diagnosed with Hodgkin's
Lymphoma, a cancer of the immune system. </span> </blockquote>
<blockquote class="tr_bq">
<span style="font-family: Georgia, 'Times New Roman', serif;">I know I'll always remember where I was when the twin towers
were hit. In my dorm room at UNH in between classes as our floor mates all started
piling into our room to watch the news coverage huddled together. </span></blockquote>
<blockquote class="tr_bq">
<o:p><span style="font-family: Georgia, Times New Roman, serif;"> </span></o:p><span style="font-family: Georgia, Times New Roman, serif;">Now I'll always remember where I was when I got this news:
with three cocker spaniels, a hot dog dog, a giant poodle, a black and a
chocolate lab, two great danes, a furry, white mutt and Sammy at the Granby dog
park. With a slobbery baseball in my hand and Sammy wagging her tail at my feet
for me to throw it, I got the call from the oncologist. An odd place to receive
a life-changing phone call, but the whole thing has been so surreal that it was
almost fitting. </span><o:p><span style="font-family: Georgia, Times New Roman, serif;"> </span></o:p><span style="font-family: Georgia, Times New Roman, serif;">I'm feeling better having a diagnosis and am ready to take
on this challenge. I'm looking forward to getting better no matter what it
takes. My oncologist is "very optimistic" and assures me that the
chemotherapy is very effective and that I'm young and strong and will do
fine. </span><o:p><span style="font-family: Georgia, Times New Roman, serif;"> </span></o:p><span style="font-family: Georgia, Times New Roman, serif;">A couple more tests scheduled next week then Wednesday is
the big "plan of attack" talk with the doc, me and Craig and the
first chemo treatment by the end of the week. Feeling overwhelmed by the outpouring
of support from so many people, relieved to know what's going on in my body and
that there's a treatment, and anxious to zap these cancer cells out of my
system. </span><o:p><span style="font-family: Georgia, Times New Roman, serif;"> </span></o:p><span style="font-family: Georgia, Times New Roman, serif;"><b>I will beat this. It's just a matter of pushing through the
tough times.</b>"</span></blockquote>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">That last statement was at the time so simple and is now so
profound to me. I had absolutely no idea what I was in for. My wildest
imagination couldn’t have fathomed what “tough times” would mean. But whatever
was to come at me, I knew that I just had to push through it, like how we all
have to put our pants on one leg at a time. Simple as that. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I guess none of us ever know what we’re in for and because
of that, there’s not much we can do but promise ourselves that we’ll work
through the tough times because those are part of this good life, too. </span></div>
<!--EndFragment-->Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com7tag:blogger.com,1999:blog-504905585662067586.post-37164248391731490482013-05-29T22:25:00.003-04:002013-05-30T14:48:01.353-04:00Gemzar Cycle 2ish<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I am two infusions into my second cycle of Gemcitabine.
Today was supposed to be the last in the cycle, but it didn’t happen. Then
again, there’s really no “supposed to” in my situation. I am far outside of any
book regimens at this point. My doctors and I are just reacting and attacking,
using my pain syndromes and my blood count levels as indicators of when we’re not
using enough or hitting me with too much of the chemo drug. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">We scaled down my dosage in the first cycle as my blood-clotting
platelets were dipping dangerously low, disallowing me from getting the
treatment as frequently as my doctors would want. Now, in this second cycle, my
counts have been holding pretty well but I’ve had some bouts of wild pain set
in, which makes them think that we need to whack a little harder. A little
harder as in dialing up the amount of Gemcitabine I am receiving and also
possibly adding in another drug: Navelbine to make sure that we are staying
ahead of the lymphoma. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">To my maybe not-so-secret delight, that change did not
happen today. My platelet level was down to 50,000. It would be way too
dangerous to treat me at that level knowing I’d drop even further and would
very likely need a transfusion and be at risk for random acts of bleeding and
all of that fun stuff. I get a bi-week. This works out wonderfully as I am
hopping a train this weekend bound for Washington DC for some time with my
college roomie. I couldn’t be happier that I’ll have no chemo symptoms to
contend with (including the super swollen face look that I so adore.)</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">What I am having to contend with, however, is this on and
off pain. It sneaks in like a jungle cat, all stealth-like, then wham – attack
out of nowhere. It feels similar to having what I’d imagine the claws of a
jaguar might feel like if they were scraping around in my sacral and hipbones.
The nails dig in and then twist pulling all the muscles and tendons in around
the pain that then emanates from that hot epicenter. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Heat helps. Pain patches help. Stretching helps. An increase
in my steroid helps – though it’s incredibly frustrating to have to keep
popping back up to higher doses of Prednisone (20mg currently) when I know all
the side effects they come with. Even with these Band-Aids, sometimes the pain
still breaks through and that’s when things really suck. A Dilaudid pill and
sleep are really all that will help those times. I am grateful that it is not
by any means constant and that I do have options with treating the pain
syndrome. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">There is no real certain way to know what is even causing
the pain. My body could just be old and angry and arthritic, not at all unheard
of for all the steroid breakdown my bones have probably endured, the battles
going on within the bones, and how much work we’ve been asking my bone marrow
to do for four years. It’s not necessarily that the cancer is growing, which is
another reason why I wasn’t too keen on hitting it with more chemo today. I’d
like to just ride this out a bit and see what happens over the next week. Maybe
I just injured my lower back like any regular person. I mean, I was throwing
kayaks around … . I kid. I was in on and off pain before that. The big reason I went kayaking was because I finally was having a pain-free day. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">What’s important is that it didn’t stop me from enjoying a
weekend away with Craig, Sam Dog and longtime friends at one of their Vermont
lake houses. Okay, maybe we had to delay it by a night as I waited for my pain meds to settle out, but that's what flexibility means. We made it, and it was complete with a fire pit and boat, dinghy and ATV rides, blended
drinks, meat on the grill, and lots of laughs, reminiscing and catching up. Everything
Memorial Day weekend should be. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: Georgia, Times New Roman, serif;">[Vermont] </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlkQps0H19Xvdfm_bmBPncwI6G3SWovgft0OAfZPgtq1-5WTHJxFCHkDfwdA07nYaNM2yCbER65TSIlpMdkfaYYxpQlaR5Ve26WMUmqvnXJyqk0LUdmb4i-yQba67j6NvmJLdR4hiQ9zU/s1600/20130526_195701.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlkQps0H19Xvdfm_bmBPncwI6G3SWovgft0OAfZPgtq1-5WTHJxFCHkDfwdA07nYaNM2yCbER65TSIlpMdkfaYYxpQlaR5Ve26WMUmqvnXJyqk0LUdmb4i-yQba67j6NvmJLdR4hiQ9zU/s320/20130526_195701.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVhwUZvhQ8VZ5gd1deSthMIGCUQRQiDh387u4lw2Pd9pjghPCkuybQiYtnqO_bmDTip8PaoU6PM8C8_g5_9Dsd5hr6s0A5tlNCFEzcOxFv6xk23N8C9HkMzDxpmzyc9ouOocWh8IQuuFs/s1600/IMG_3647.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVhwUZvhQ8VZ5gd1deSthMIGCUQRQiDh387u4lw2Pd9pjghPCkuybQiYtnqO_bmDTip8PaoU6PM8C8_g5_9Dsd5hr6s0A5tlNCFEzcOxFv6xk23N8C9HkMzDxpmzyc9ouOocWh8IQuuFs/s320/IMG_3647.JPG" width="320" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<!--EndFragment-->Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com4tag:blogger.com,1999:blog-504905585662067586.post-45577464556691705202013-05-21T15:33:00.000-04:002013-05-21T15:33:00.443-04:00Up in the Clouds <!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">As I do most mornings, I woke up far too early and lay
in my bed for a while scrolling through my Facebook newsfeed until my body
caught up with my mind and together we could roll out of bed. On several friends’
and organizations’ pages, I learned that Zach Sobiech died last night. He was a
fellow young guy living with cancer – far younger than me. He was diagnosed at
14 and died at 18 from osteosarcoma, a bone cancer. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Maybe you heard his <a href="http://www.nydailynews.com/news/national/teen-wrote-cancer-hit-dies-article-1.1349332">story</a> already, but I felt compelled to
share it because of how much he has moved my life. I learned about him when his
now-viral YouTube video shared the online pages of Huffington Post’s Generation
Why section with a story I had written. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">His doctors had given him a year to live, and he made the
decision that he wanted to spend that time with the people that he loved, at
home, doing what he loved, which was songwriting and music. His song, “Clouds,”
is a bit of a farewell, written knowing that the time he had left was short.
Though what he sings about is tragically sad, its upbeat tone and positive lyrical spin demonstrate his zest and
appreciation for life, as well as his peace with his impending death. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">For anyone to reach that awareness is a beautiful gift, for
it to happen for such a young man, even more so. His music <a href="http://youtu.be/sDC97j6lfyc">video for "Clouds"</a> went viral and a
<a href="http://youtu.be/7zxXAtmmLLc">tribute</a> was made back to him with several celebrities who were moved by his
story and were filmed singing his song. I loved everything about this humble
young man who made it known that the solution to happiness really is so simple.
</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">This morning I watched a documentary about him,<a href="http://youtu.be/9NjKgV65fpo">"My Last Days: Meet Zach Sobiech," </a>created by
SoulPancake. It is more than worth the 22-minute watch. Settle in and your life
will be changed, too. Listen to what he has to say. I cried and cried all through it as I related on so many different levels. I cried because I am sad
that he is gone far too young, but I also cried because I was so happy to know
that he lived such a full life that he could be proud of, and at peace with, in
spite of dying from disease. As they say at the end of the film, he touched so
many lives not because he was dying, but because of the way he lived. That is
beautiful and something I aspire to every day. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Learning of Zach’s death, and then more intimate details of
his life, inspired me to seize my day. As he touches on in the documentary, I
too, often live in the extremes: really good days and really bad days. I woke
up pain-free and was determined that today would be a good day. I pushed my weak,
little body – with barely any red blood cells – to get my kayak out of the shed
from under the snow blowers and fertilizers and stand-up paddleboards, into the
Jeep and onto the river. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">It was the first time it’s been out this season and the
first time I had ever kayaked without Craig to help me. Though it took a <i>long</i> time and a lot of effort to get
everything together to get that boat in the water, I did it and I was proud. It
was 85-degrees and sunny today. The river was so peaceful, and I couldn’t help
but think that this total stranger’s spirit had helped to get me there
– helped to give me the perspective to even believe that I could. Fear and
excuses were washed away today and I just had to go. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">The Jeep is full of mud, the shed a mess from my struggle,
and I’ll be sore as hell from lifting and dragging the 50-pound kayak, but the
self-satisfaction and the peace felt floating with the current was worth every
effort. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Not including Zach, three people in my online cancer support
world died in as many weeks: two from Hodgkin Lymphoma and another from bone
cancer. It happens far too often, but that is my world, brutally aware of the
realities of this disease. As much as it’s a punch to the gut every time, it
also adds fuel to my own focus to not take this life for granted. I am still
going strong and for every added day I’m given, I am so grateful and I try to
live it in their honor. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Thanks for the song and your spirit, Zach. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal">
<br /></div>
<div style="text-align: center;">
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Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com5tag:blogger.com,1999:blog-504905585662067586.post-62428403083525584102013-05-14T11:57:00.001-04:002013-05-14T11:57:04.607-04:00To Oncology Nurses, From a Seasoned Patient <span style="font-family: Georgia, Times New Roman, serif;">Check out my latest contribution to <i>The Huffington Post</i>. It's addressed to oncology nurses and offers a patient's perspective on what works and what doesn't when it comes to nursing care. Please like and share if you find it at all thought-provoking. I'd love to hear your thoughts and experiences. Drop me a message in the comments section here or on the Huffington Post's site. </span><span style="font-family: Georgia, 'Times New Roman', serif;">Thanks for reading!</span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS2BFChJxhTH3dfd1BXjDDxOT5EdqTkKgGRQbWb6zIBi9CUsKr3PhST6wqs_2Kvz9I5Wutf7zbfKIDOzge5JfR856oZN_0v8OuHcPAMBt6OGXkD7dclcfnEU7yWVvtGiqxLo9LsPUlIkM/s1600/homepage.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /></a>
<blockquote class="tr_bq">
<div class="separator" style="clear: both; text-align: center;">
<img border="0" height="19" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS2BFChJxhTH3dfd1BXjDDxOT5EdqTkKgGRQbWb6zIBi9CUsKr3PhST6wqs_2Kvz9I5Wutf7zbfKIDOzge5JfR856oZN_0v8OuHcPAMBt6OGXkD7dclcfnEU7yWVvtGiqxLo9LsPUlIkM/s320/homepage.gif" width="320" /></div>
</blockquote>
<br />
<br />
<div style="text-align: center;">
<a href="http://www.huffingtonpost.com/karin-diamond/cancer-nurses-patients_b_3202345.html">"To Oncology Nurses, From a Seasoned Patient" </a></div>
<br />
<br />Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com2tag:blogger.com,1999:blog-504905585662067586.post-9873897664089629842013-05-13T13:25:00.000-04:002013-05-13T13:33:59.553-04:00Reflecting on Four Years<!--[if gte mso 9]><xml>
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<!--StartFragment-->
<br />
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhy-8dvuixXRy6A9rgXs1FUL4vTryZCU8YP4Je1vNOWUYZs6HKP_qh8M2MoGlCRtnzPlfsuw8eAutFyMM80QqZ_Uer1fhxoPutZHa3v6wkutjib2jb1VD4lWASiBaCRk-VNXcnd13Rj_xA/s1600/photo-75.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/AVvXsEhy-8dvuixXRy6A9rgXs1FUL4vTryZCU8YP4Je1vNOWUYZs6HKP_qh8M2MoGlCRtnzPlfsuw8eAutFyMM80QqZ_Uer1fhxoPutZHa3v6wkutjib2jb1VD4lWASiBaCRk-VNXcnd13Rj_xA/s320/photo-75.jpg" width="239" /></a><span style="font-family: Georgia, Times New Roman, serif;">When my mom takes notes at doctor’s appointments she likes
to star and quote the good stuff. She loves when doctors give me positive
comments and wants to be sure I remember them. Often, I don’t even hear them
because I’m so focused on the treatment and brush off the compliments on my
progress. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Case and point was last Wednesday’s check-in with Dr. O and
team who have been overseeing my care from afar while I receive the infusions
locally with Dr. D. In my notebook – the third one we’ve filled with appointment
notes since diagnosis – there are a few quotes by Dr. O that my mom felt
important enough to record: </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">“Mucho Fantastico!” (after hearing how my lymphoma pain and
b-symptoms have diminished)</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">“You look great!”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">“You are closer to normal than you think.” </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMzbwbrbs8ISHbroNxRHDVbg98Pnu6FTyScqZkC0lVDbQVs3t5oTodX_fFSvOCPtpoaD0HTiEGcsQuHn8WtuNNUBnueVpk_5KoHX4h1tJBTBDXnYTFHxTJ1OBvRuDEOFNR2OcXJH9GMfA/s1600/photo-74.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMzbwbrbs8ISHbroNxRHDVbg98Pnu6FTyScqZkC0lVDbQVs3t5oTodX_fFSvOCPtpoaD0HTiEGcsQuHn8WtuNNUBnueVpk_5KoHX4h1tJBTBDXnYTFHxTJ1OBvRuDEOFNR2OcXJH9GMfA/s320/photo-74.jpg" width="239" /></a><span style="font-family: Georgia, Times New Roman, serif;">The last quote did resonate with me. He said it after I
started peppering him with questions about what my restrictions are and getting
answers back that seemed like I had total freedom as long as I just listen to
my body. I am not used to this after so many years of feeling like I’m
shackled. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">He got where I was coming from when asking about Zumba and
yoga and just simply said: “It seems like many of these questions are related
to whether you’re normal or not and you are closer to normal than you think.” </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">This was a dream phrase for me to hear, but still hard to
process. Last Wednesday, May 8, marked four years since my <a href="http://eyespeeledalways.blogspot.com/2009/05/diagnosis.html">diagnosis date</a>. As I
was in NYC for my appointment and distracted by everything that entails, it
completely slipped my mind until I got home after a long day and Craig greeted
me with: “Happy Cancerversary.” </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Woah, gut check. Four years. I can either say: </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">“I’ve been going through this awful shit nonstop for four,
long years.” </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Or, I can say: </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">“I’ve been keeping ahead of cancer for four years and
thoroughly enjoying my time despite disease and its baggage.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Both are true, but this year I lean much toward the latter. It’s
been four years and I’m still alive – that’s kind of huge. I rarely get angry
about my situation anymore. I’ve come a long way toward integrating it into my
life and not letting it take over my life. I’ve learned over these four years
that it’s all about balance. Balance the bad with good. Balance the down days
with excitement. I slip up – often – and lose my focus, but I’m proud of the
coping mechanisms I have found to bounce back. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I don’t know if I quite think of myself as “normal,”
especially since I’m still getting weekly chemo injections, but am ecstatic
that my oncologist even entertains that concept. I am comfortable with thinking
of myself as “more normal than not” and that opens up a whole lot of doors for
me, which brings a lot of uneasiness and a lot of pressure, too. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, 'Times New Roman', serif;">I am trying to find my place in the great, big, wonderful world. Sometimes it’s difficult when I am feeling better because I want to go out and do everything: pick up work, learn an instrument, get into pique physical shape, conform back to my old life or everyone else’s life, then I end up in the ER with shortness of breath and heart palpitations and I realize that I’m not like everyone else.</span><span style="font-family: Georgia, 'Times New Roman', serif;"> </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Am I sick or am I not sick? Can I move forward or not?
There’s no clear answer and I work very hard not to get caught up in analyzing
it. Some things are just unknown. My fate – anyone’s fate – is one of
them. I just happen to have mine staring me very close in the face all of the
time, so I think about it more than most.
</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Whatever will happen tomorrow, or next month, or four years
from now, today I feel well and for that I am grateful. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">At the beginning of 2013 I set my <a href="http://eyespeeledalways.blogspot.com/2013/01/intentions-2013.html">intentions</a> and vowed to
frame my year around the John Borroughs quote: “Leap and the net will appear.” Looking
back on four years, I’d say that’s appropriate for where I’m at. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I’m making leaps. Big leaps. Small leaps. Planned and
unplanned leaps. So far, a net has always appeared and with each successful
landing my confidence has made its own leap upward – little by little. Jumping
isn’t so scary anymore. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com1tag:blogger.com,1999:blog-504905585662067586.post-48318155821026706812013-05-06T22:56:00.003-04:002013-05-06T22:56:49.220-04:00Can't Seem to Stay Away: Another Hospital Stint
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<br />
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">For three nights I’d wake up from a dead sleep gasping for
air. I’d sit up straight in attempts to get the blood moving then would be
acutely aware of my heart and its beats. My heart was trying too hard. It felt
tired and labored as if it were working overtime. As I’d sit there and try to
regulate both my heart and my breathing sometimes I’d feel a blip in the
rhythm, a missed beat in the heart’s drum line. It took a long time to fall
back asleep after each episode, terrified that I wouldn’t wake back up. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I received my
third dose of Gemzar chemo last Wednesday. My platelets were again low and my
anemia bordering on transfusion-required levels, but we went ahead with the
reduced dose, again with the thought that the cancer is the greatest threat and
consistency in attacks against it is the best strategy. All went smoothly
except for a high heart rate (140bpm), consistent with the high heart rates I’d
been registering at the clinic for the past week. I told Dr. D about the nighttime
heart episodes and he sent me off for an EKG. On it my heart rate registered at
90bpm and all looked normal – of course. I felt well enough for tapas Mexican with
my mom and a grocery shopping spree to replace the hundreds of dollars worth of
food we lost when our fridge and freezer went kaput last week – sigh. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">The chemoey feeling crept in that evening:
cellophane-wrapped muscles, creaks everywhere, bleary eyes and a nauseating
fatigue. I went to bed early. Again I awoke with a start, gasping for air, but
this time, instead of my heart going crazy it was my left arm. It was flailing
and jerking about of its own accord. I elbowed Craig hard to witness it as I
cried and groaned not knowing what to do. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">In reality, the waving and flailing lasted about 15 seconds,
but it felt like 15 hours. When it stopped I couldn’t even touch my arm, the
muscles were so sensitive and dead tired from the dance it just did. I thought
maybe I was half in dreamland still, but then it happened again, and again, and
again – each occurrence just when I fell back into a dead sleep. I thought I
was having seizures, so I took an extra Neurontin. I take it for nerve pain,
but I remembered Dr. D saying it is also a seizure medicine. I figured I’d give
it a shot and was thankful that it carried me through the night with no more
episodes. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">My worries about this were compounded by the fact that I’d
been having tremors in my right arm for about a month that I only very recently
alerted my doctors to. My original plan of action was to brush that under the
rug, as I simply didn’t want to deal with it. However, when it happened
half-dozen times and joined up with some serious lightheadedness, I knew I had
to bring it up. I’d start to see stars and then my right hand would start
shaking like it was trying to develop a Polaroid picture. Those episodes could
last up to a minute and my arm would be dead tired afterward. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">It all warranted a call to Dr. D and Dr. O Thursday morning
and I knew what that would mean. To the Emergency Room I went at their
insistence, though I avoided it until evening when Craig got home from work. Craig
was very worried. I can always tell by the dark bags that instantly develop
under his eyes. I hate it. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">The big worry from my doctors was pulmonary embolism (a
blood clot in the lungs) or a blood clot somewhere else in my body. I already
have many of the risk factors – blood cancer, chemotherapy treatment, not super
active. A clot would kill me. The secondary worries were lymphoma had spread to
my brain, causing the tremors; lymphoma had spread to my upper spine pressing
on vertebrae or squeezing disks causing the tremors; very low blood counts; a
heart issue. Awesome: something wrong with my heart or brain or a life-ending
clot. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I lived in the Emergency Room for a full day. Literally,
more than 24 hours – 5:30pm Thursday through 7pm Friday before I was
transferred to a hospital room for a second night of observation. After about
three hours, it was decided I’d be admitted, but it would have to be to a floor
that had telemetry at the bedside, so that they could keep me on a heart
monitor. These beds are limited and there were none to be found for me. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Craig stayed/”slept” there with me in a hard chair the first
night with his forehead on a towel on a table. I “slept” for 15-minute clips on
an ass-breaking, essentially cushion-less stretcher. I was tethered both from
my port to the IV pole, which was giving me hydration, and the heart monitor
via five lines coming off my chest attached to my skin with sticky pads, the
glue from which I’m still picking off days later. After 12 hours and no signs
of a bed opening, the ED staff was kind enough to get me a real hospital “bed”
and move me to a room with a window in a quieter area. The bed felt like that
in a luxury hotel room. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">The Hartford Hospital Emergency Department staff was
extremely kind, thorough and listened well to my symptoms. I am a fairly
frequent flyer so I know the types of things they are looking for. But no
matter how great the staff is, by nature the ED is a busy, loud, fast-paced
place. Alarms, intercoms, alerts, patients yelling, seem to never end. The
hospital is squat in the middle of the city and many use it as their primary
care option, therefore it can get backed up easily. Plus, they handle major
traumas flown in from emergency sites or the sickest of patients from other
hospitals on LIFE STAR, the hospital’s critical care helicopter service. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Every few minutes over the intercom – the same intercom that
plays through patient’s bedside speakers would alert: </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">“Active trauma three minutes out!”</span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">“LIFE STAR here. All appropriate personnel report to Red
Pod!”</span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">“Activated stroke five minutes out. Patient is not
registered!” </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">“Any available nurse or PCA to Red Pod room 12 stat!” </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">“Patient assist needed in Orange Pod room 25!” </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">So on and so on. In the waiting area Craig and I witnessed a
young man with an infected month-old gunshot wound. Yes, I saw the whole thing oozing
through the shoddy dressing when he lifted his pant leg in triage. He was
probably 17-years-old, shackled at the ankles and accompanied by a Hartford
police officer. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Amid the intercoming, we heard a man screaming at the nurses
in the hall. He was saying that his father came in there fine, they injected
him with something and now he was in the ICU and they wouldn’t let him see him.
He was demanding to see his dad, but was being too combative with the medical
teams. Security came and there was lots of drama. And I thought I was having a
tough day. The “Be kind for everyone is fighting a battle” quote kept repeating
in my head. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">My father wasn’t dying and I wasn’t recently shot, arrested
and shackled, but the two-night hospital stint was pretty intense. I was given
the full workup, kinda like the Gold Package at the car wash: </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Intent:</b> Check a
brief snippet of my heart’s electrical activity </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Test:</b> EKG </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Result:</b> Normal </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Intent:</b> Rule out
infections and check for deficiencies</span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Test:</b> Blood
pulled from my port and my arm </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Result:</b> Very
anemic requiring transfusion (H and H 7.5 and 23%) meaning not enough red blood
cells to carry sufficient oxygen around my body, platelets down to 33,000,
white blood cells down in the 2s. All other chemistries looked ok and no
infections found. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Intent:</b> Rule out
an internal bleed that would explain why my red blood cells dropped 10 points
in one day </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Test:</b> Doctor
stuck a lubed finger up my asshole and pulled out feces to check it for blood.
Entirely pleasant experience. Case and point of what I mean when I say dignity
is out the window and body becomes object during all of this. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Result:</b> No blood</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Intent:</b> Rule out
blood clot</span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Test:</b> CT Scan
with contrast that makes your whole body hot and you feel like you just peed
yourself. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Result:</b> No clots,
only swollen lymph nodes showed, which we already know about. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Intent:</b> Rule out
chance of fluid that may have developed around lung or heart </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Test:</b> Chest x-ray</span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Result:</b> Totally
clear around heart and within lung, much improved after the whole pneumonia and
drainage debacle of last month. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Intent:</b> Track
heart rate and blood pressure to watch for abnormalities</span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Test:</b> Hook me up
to a heart monitor that alerted angrily every time my heart rate rose above
normal. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Result:</b> I was
going into periods of high heart rates up to 150bpm (an average heart rate for
me is around 60bpm) </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Intent:</b> Check for
cancer activity in the brain and/or discs pinching or lymph nodes pressing on
cervical spine. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Test:</b> MRI of my
head and upper-neck. I was in the machine for one hour and 15 minutes because
we were imaging two areas. I had to lay perfectly still for that entire time
with my head squeezed in place in a cradle with pads on either side of it plus
a mask – similar to a football helmet’s mask – over my face. I’d never had the
mask before and when they lowered it to two inches from my face I thought I’d
freak. But somehow I didn’t. By alternating between body scan meditations,
visualizing myself on the Whitsunday Islands in Australia, and turning the
deafening pounding sounds of the machine into song lyrics I made it through.
The jack hammering was akin to the intro to Fat Boy Slim’s “Funk Soul Brother.”
The earplugs they gave me did nothing to reduce the intensity of the banging as
the oversized magnets did their work. I refused to open my eyes once I entered
the narrow-ass tunnel for fear of how I’d react to seeing the face mask then
the inside of the tube just a few inches further out. The tunnel is only about
24-inches in circumference. Buried alive much? </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Result:</b> No brain
activity!!!!!!!!! A few lymph nodes showing in my upper neck, but likely ones
we already know about. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Intent:</b> Check for
any structural abnormalities in my heart </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Test:</b> Echocardiogram,
basically an ultrasound of the heart </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><b>Result:</b> Everything
looks structurally sound and working as it should </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">All of these tests on top of the incessant vitals checks are
what kept me from any rest, but the results of which are now letting me sleep
easy since I’ve been home. We ruled out many, many potential problems that my
symptoms pointed toward. As awful as it is to go through it all, this is very
valuable information and often as important as finding out what is wrong. It
seems that it was all related to episodes of elevated heart rates and very low
blood counts. We still don’t have a definitive on where the tremors and arm
jerking came from. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">I got the sign off Saturday afternoon with promises that I’d follow up with my
oncologist and now new cardiologist. I was given a prescription for a baby dose
of the beta-blocker Coreg. A heart medication I have been on in the past when I
was having very similar episodes while in Texas for a clinical trial. A
cardiology workup at MD Anderson Cancer Center found I was having periods of A
Flutter and high heart rate. Like it did then, the beta-blocker will keep
everything even-steven so that my heart isn’t working overtime. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Craig picked me up in our Jeep Wrangler. It was in the high
70s. The weathermen had been reporting all morning from my little, tiny
hospital TV that it was a top 5 weekend. I had to shut it off so upset that I
was missing it. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">Knowing my frustrations of not only being stuck inside, but
also being attached to an IV pole and a heart monitor meaning I had to call for
someone to disconnect me every time I had to pee, never mind reach anything, Craig
created a space of ultimate freedom for me. He surprised me by not only
swapping the hard top for the soft top, but showing up with no top and no doors
for a totally exhilarating, sun worshiping ride to Elizabeth Park where we
checked out a huge healthy living expo amid the beautiful flowers. From chains
to freedom. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">The heart episodes seem to have subsided, though I’m getting
used to how much the Coreg reduces my blood pressure as a side effect of
keeping my heart rate even. I have to be aware of shifting positions and
getting up too quickly. It takes longer than it does for most people for my
blood to get from my feet to my head when I get up. I just need to take my
time. No limbs have been flailing uncontrollably and my mind is more at ease
knowing there are no tumors in my brain. I actually slept a soundless 12 hours
last night and loved basking in the sun then running errands – top down –
in the Jeep all afternoon. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ3UmxEweJOVzuDA1ywmgCvvQvj0L_arsPgshdf0iXgEPzpMsmOmcj4FJlDIhf0Q1dsKzmGaYGCexrHOpJQrkjvCiHoogIJL8TnlZqS9dsZCsGxqtCZbqmUQmU2QEv4_N2KOfknVXUFbU/s1600/photo-72.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ3UmxEweJOVzuDA1ywmgCvvQvj0L_arsPgshdf0iXgEPzpMsmOmcj4FJlDIhf0Q1dsKzmGaYGCexrHOpJQrkjvCiHoogIJL8TnlZqS9dsZCsGxqtCZbqmUQmU2QEv4_N2KOfknVXUFbU/s320/photo-72.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i> I much prefer historic Elizabeth Park's scenery to hospital rooms. </i></td></tr>
</tbody></table>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<!--EndFragment-->Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com5tag:blogger.com,1999:blog-504905585662067586.post-83865255544858966542013-04-30T10:32:00.000-04:002013-04-30T10:33:27.588-04:001st Runner-Up - Best Blogger <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1n1258fKow8PcGQOMkLUxDOszTJZCtOQfr2_Qo0gqR8IXUcfxzQ-Bsda_vfsh06I64inJ8rqZtGJQrVCYNJnC7Kx5CMBGTfCR9-95JJFRm64uROXYfjF9nLXY9GTnoLtdjEESXUhHtEI/s1600/Best_Of_Voting_Graphic_Rev_11_19_12.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="254" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1n1258fKow8PcGQOMkLUxDOszTJZCtOQfr2_Qo0gqR8IXUcfxzQ-Bsda_vfsh06I64inJ8rqZtGJQrVCYNJnC7Kx5CMBGTfCR9-95JJFRm64uROXYfjF9nLXY9GTnoLtdjEESXUhHtEI/s320/Best_Of_Voting_Graphic_Rev_11_19_12.gif" width="320" /></a></div>
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The May issue of <i>Hartford Magazin</i>e containing all the 2013 Best Of Winners has hit the press. Turns out I was voted "1st Runner Up" as "Best Blogger in Greater Hartford." It's quite an honor to be sandwiched between <a href="http://courantblogs.com/colin-mcenroe/">Colin McEnroe</a> and <a href="http://www.courant.com/features/too-shea/">Jim Shea</a> – two area writers that I greatly respect and admire. </div>
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<div class="separator" style="clear: both; text-align: left;">
Many thanks to everyone who took the time to send a vote my way, and of course, for reading along with my story over all these years now. Thanks for helping to push me – both in my writing and as I work to shed this disease. Writing this blog is such a privledge and more healing to me than any medicine. The fact that people actually seem to enjoy reading it is a humbling and exciting bonus! So, thanks. I'm honored. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU-zE8nr9dNcHXbrWaeyyZJd3h8mK3IMLRZbMcoZXE9y1r1AMGgagHq7nghkOzFkcvlMVfc411tjJ8ELBFjmQnhqdOU8fN9C4g1vxAWxYBgDSb2bxK1b3VU1UcqIEtngtnpYnYtii7gDE/s1600/Best+Of+Inside.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU-zE8nr9dNcHXbrWaeyyZJd3h8mK3IMLRZbMcoZXE9y1r1AMGgagHq7nghkOzFkcvlMVfc411tjJ8ELBFjmQnhqdOU8fN9C4g1vxAWxYBgDSb2bxK1b3VU1UcqIEtngtnpYnYtii7gDE/s320/Best+Of+Inside.jpg" width="240" /></a></div>
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<br />Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com4tag:blogger.com,1999:blog-504905585662067586.post-46732985056388302582013-04-29T20:23:00.002-04:002013-04-29T20:23:40.140-04:00Young Advocates Spreading Awareness <span style="font-family: Georgia, 'Times New Roman', serif;">Check out this high school project our Diamond-side cousin, Halle, and her class partner, put together to spread awareness of Hodgkin Lymphoma. I am so humbled that she wanted to make this her project focus and honored to have taken part. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The American Cancer Society estimates there will be 9,290 people diagnosed with Hodgkin Lymphoma in 2013 – a majority in the 18-40 age group. Compare this to an ACS-estimated 232,340 new cases of invasive breast cancer in 2013. As Halle and Vicky point out, Hodgkin Lymphoma is a fairly rare cancer, and I appreciate their efforts to educate and inform. </span><br />
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<iframe allowfullscreen="" frameborder="0" height="360" src="https://www.youtube.com/embed/WKOks7Ikhh8?feature=player_embedded" width="640"></iframe>Karin Diamondhttp://www.blogger.com/profile/03549415860426655164noreply@blogger.com2