tag:blogger.com,1999:blog-17246993187943171532024-03-14T00:41:34.730-05:00CDH-1 The Family GiftRoger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.comBlogger136125tag:blogger.com,1999:blog-1724699318794317153.post-73998365234470365272020-08-03T16:03:00.000-05:002020-08-03T16:03:31.968-05:00Happy CDH-1 Quinquennial!<font face="inherit">It is call a Quinquennial...</font><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-bJSOkIU_bpk/Xyhv0bHltSI/AAAAAAAAJ8k/piqBa71TryA5iv-zwR3PMA0dVjQhYMtXwCLcBGAsYHQ/s274/5%2Byears.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><font face="inherit"><img border="0" data-original-height="184" data-original-width="274" src="https://1.bp.blogspot.com/-bJSOkIU_bpk/Xyhv0bHltSI/AAAAAAAAJ8k/piqBa71TryA5iv-zwR3PMA0dVjQhYMtXwCLcBGAsYHQ/s0/5%2Byears.jpg" /></font></a></div><div><font face="inherit">According to Merriam-Webster dictionary quinquennial means "Consisting of, or lasting five years".</font></div><div><font face="inherit"><br /></font><div><div><font face="inherit">That being the case, my life as a member of the Seahorse Club has today hit its quinquennial. </font></div><div><font face="inherit">Key the balloons, drop the confetti and send in the clowns.</font></div></div></div><div><font face="inherit"><br /></font></div><div><font face="inherit">It was five years ago today that my wife and I were at the Mayo Clinic so that Dr. Kendrick could perform the surgery that would remove my stomach due to a positive diagnoses of a genetic mutation in one of my CDH-1 genes.</font></div><div><font face="inherit"><br /></font></div><div><font face="inherit">Five years without a stomach. 1,825 days have past since that day down in Rochester Minnesota. So much has changed, so much has happened during this quinquennial.</font></div><div><font face="inherit">When I think back on that day, I went into that day being nervous, scared and worried. </font></div><div><font face="inherit">I was nervous about the surgery. I mean it was a major surgery and anything could go wrong.</font></div><div><font face="inherit">I was scared that they would find cancer once my stomach was removed and worried about the quality of life I would have after the surgery. </font></div><div><font face="inherit">There were some many unanswered questions as I was wheeled in to the operating room.</font></div><div><font face="inherit">So many doubts and fears as I awoke in the recovery room.</font></div><div><font face="inherit">How was my life about to change?</font></div><div><font face="inherit"><br /></font></div><div><font face="inherit">They say change happens and it does.</font></div><div><font face="inherit">And when I look back, so little of it had anything to do with my CDH-1 mutation, the surgery that happened that day or not having a stomach. In fact, unless I do something stupid like drink too much, eat to fast or not chew well enough, I don't even realize that my stomach is missing.</font></div><div><font face="inherit">Still I changed...</font></div><div><font face="inherit"><br /></font></div><div><font face="inherit">There were life event changes, The ones from me that stand out the most are;</font></div><div><font face="inherit">Our kids are grown and moved on. Most days the house seems empty. This gets amplified due to the fact that due to this crazy pandemic I have been furloughed since April 12th. So I am stuck alone for a good portion of the day.</font></div><div><span style="font-family: inherit;">I have found respite in daily walks. Just getting out of the house, taking that long walk to see what is going on in our little corner of the world, but when I return the house is usually still empty.</span></div><div><font face="inherit"><br /></font></div><div><font face="inherit">There was also that unfortunate day when I decided to ride my moped and it cost me the use of my right eye. So I have embraced the life of a pirate. In fact the other night at the River Inn we told the story to a young fan on how we maneuvered the pirate ship down the Crow River to Hanover and it was moored just around the bend. Sometimes you just got to have a little fun.</font></div><div><font face="inherit">These are just things that happen to us. Both good and bad. We just keep rolling with them. </font></div><div><font face="inherit"><br /></font></div><div><font face="inherit">Still there have been life changing events as well.</font></div><div><font face="inherit">The loss of my mother to Alzheimers is one. Now I know that everyone must die at some point in time. Our days on this earth are numbered and the countdown started the day we were born. But to see my mom go from receiving her Master's degree in </font>literature,<font face="inherit"> to the state that this affliction took here to in such a short amount of time still haunts me. Is that my fate? Is that how my time on this earth will end? I really hope not.</font></div><div><font face="inherit"><br /></font></div><div><font face="inherit">More importantly though is the complete other end of the spectrum. </font></div><div><font face="inherit">During these past five years I have become a Grandpa. Not once but twice. What an amazing gift. </font></div><div><font face="inherit">Now I count my marriage to my wife and the birth of our children and the most significant events I have ever experience. But these two little boys give me a whole new meaning on what life should be, needs to be. Becoming "Papa" to these guys adds a whole new meaning to life's defining moments, and is one of the best things that has ever happened to me.</font></div><div><font face="inherit">These are the events that did more to help change and shape me into who I am and who I will become.</font></div><div><font face="inherit"><br /></font></div><div><font face="inherit">Changes </font></div><div><font face="inherit">Those were just a few events from my past five years. All were important, and the most important of them have nothing to do with my genetic mutation or the quinquennial that arrived today. I am not the same man that I was before the surgery. The CDH-1 mutation may have started the change, but it did not control the narrative that created the man I am today.</font></div><div><font face="inherit"><br /></font></div><div><font face="inherit">From my view these changes provide a perspective on not only how fast five years can fly by, but just how much can happen in that time. So if you find yourself in a time of change or things are not going your way right now, don't quit. Odds are, things will work out just fine. Probably not the way you expected them to, but it will still turn out OK. You will grow, you will learn new things about yourself and you will change. </font></div><div><font face="inherit">That's OK.</font></div><div><font face="inherit">Trust me, a lot can happen in five years. </font></div><div><font face="inherit"><br /></font></div><div><font face="inherit"><span jsname="YS01Ge" style="background-color: white; color: #222222;">For all the brave and the souls who went before us</span><br style="background-color: white; color: #222222;" /><span jsname="YS01Ge" style="background-color: white; color: #222222;">Stand tall, then proudly lift your voices</span><br style="background-color: white; color: #222222;" /><span jsname="YS01Ge" style="background-color: white; color: #222222;">Let 'em know who we are and our choices</span><br style="background-color: white; color: #222222;" /><span jsname="YS01Ge" style="background-color: white; color: #222222;">And one day we won't have to sing this chorus</span></font></div><div><span jsname="YS01Ge" style="background-color: white; color: #222222;"><font face="inherit">(Change Christina Aguilera)</font></span></div><div><br /></div>Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-91189447087419733712020-02-24T08:33:00.000-06:002020-02-24T08:33:21.708-06:005 Years After... Surgery Week<span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">This is a copy of a blog I recently wrote on another site.</span><br />
<span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">I decided to copy it to this page as well. I want it to serve as a reminder that life still happens and the support of my family is what carried me through.</span><br />
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<span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">Do you know that February marks five years as being a mutant.</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">Five years ago I learned that I was a CDH1 genetic mutation carrier. Five years ago I started a journey that would lead to a major surgery that would alter the way I lead my life. That was five years ago, and you know the saying, the more things change the more things remain the same..</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">This week we count down the final few days before another major surgery.</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">Except....</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">This time the surgery is not for me.</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">On Friday my wife Edie will be having a total hysterectomy at the University of Minnesota.</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">We knew that this procedure was on the horizon.</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">We have been slowly walking this path for the past few years. She has been battling with precancerous cells and fibroid's for a while now. She had a procedure to remove some cancerous cells three of four years ago.</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">There have been check ups that have ended up resulting in biopsies needing to be done, heck there was just one a month or so ago. There is just no reason to risk this anymore. We have spent that last five years focusing on me and now it time to make sure that she stays safe.</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">So the surgery is set for Friday.</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">It is a major surgery and she will be out of work for six weeks or so.</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">She has a follow up with the surgeon on the 10th of March and shortly there after I am going to run her out to North Carolina to spend time with Jen, Sam and the boys.</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">The concern is that she needs to take it easy and heal.</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><a href="https://1.bp.blogspot.com/-6zMe93470JY/XlMQC6RcQ8I/AAAAAAAAIaU/GSz953RUuv023FF_cHmtkQc82VWkZKlYQCLcBGAsYHQ/s1600/angel%2B5.jpg" imageanchor="1" style="background-color: white; clear: right; color: #6699cc; float: right; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px; margin-bottom: 1em; margin-left: 1em; text-decoration-line: none;"><img border="0" data-original-height="528" data-original-width="960" height="110" src="https://1.bp.blogspot.com/-6zMe93470JY/XlMQC6RcQ8I/AAAAAAAAIaU/GSz953RUuv023FF_cHmtkQc82VWkZKlYQCLcBGAsYHQ/s200/angel%2B5.jpg" style="border: none; position: relative;" width="200" /></a><span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">If she stays here the temptation will be there to do something around the house that could cause a problem.</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">She sometimes has a tendency to do that!</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">Please keep Edie in your thoughts and prayers on Friday.</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: inherit; font-size: 14.85px;"><span jsname="YS01Ge" style="color: #222222;">When we are together t</span></span><span style="background-color: white; color: #222222; font-family: inherit; font-size: 14.85px;">he moments I cherish</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: inherit; font-size: 14.85px;"><span jsname="YS01Ge" style="color: #222222;">With every beat of my heart</span></span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #222222; font-family: inherit; font-size: 14.85px;">To touch you, to hold you</span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: inherit; font-size: 14.85px;"><span jsname="YS01Ge" style="color: #222222;">To feel you, to need you </span></span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #333333; font-family: inherit; font-size: 14.85px;"><span jsname="YS01Ge" style="color: #222222;">T</span><span jsname="YS01Ge" style="color: #222222;">here's nothing to keep us apart</span></span><br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;" /><span style="background-color: white; color: #222222; font-family: inherit; font-size: 14.85px;">(Three Times A Lady The Commodores)</span><br />
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<br />Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-70087106665489613672019-08-05T10:50:00.000-05:002019-08-05T10:50:55.600-05:00Four Years And Counting<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-T2JY61neOAU/XUgpwyAPMwI/AAAAAAAAHBM/FbSMVK8Wyz4zSQmOkmfDldUqSwze7O98wCLcBGAs/s1600/4%2Byears.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="180" src="https://1.bp.blogspot.com/-T2JY61neOAU/XUgpwyAPMwI/AAAAAAAAHBM/FbSMVK8Wyz4zSQmOkmfDldUqSwze7O98wCLcBGAs/s320/4%2Byears.jpg" width="320" /></a></div>
Four years.<br />
Four years ago today I had my stomach removed. That equates to 1,460 days that I have lived without a stomach.<br />
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That is four years that I can look back on and be proud that I made it through it. Surprised I made it though but proud non the less.<br />
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Four years that family and friends have been here to help pick me up, dust me off, and remind me that "you got this".<br />
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Four years of eating at your favorite restaurant and asking for a take home container as soon as your meal arrives so you can portion out what you are going to take home.<br />
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Four years of not eating this or not eating that. Four years of getting food stuck. Four years of not feeling hungry or not feeling full.<br />
Four Years...<br />
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You know I still miss it. My stomach that is. There are days when you are watching someone eat or drink something that you know you can't. Well "can't" is kind of the wrong word here. You can eat or drink it. Nothing stopping you. You just know from experience that you shouldn't have it or your stomach-less body will remind you that it wasn't your best decision of the day. I have done that a couple of times I think.<br />
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When I first started on this journey there I posted my blog on social media. It was the only way I had to communicate how I was doing. Through this though I was able to connect to a small group of people who are having to walk down their own stomach-less journey. We refer to this group as seahorses, due to the fact that seahorses do not have stomachs.<br />
We (Seahorses) are a small community, but it seems to be growing larger everyday. There will be a post online that someone, somewhere has been diagnosed with this mutation. The community then rallies behind them and lets them know that they are not alone. We use the phrase "You Got This!" a lot.<br />
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I kind of wandered all over the place with this blog, but I wanted to stop for a second and recognize the day. It has been four years now. Four years of excitement, adventures, fun and surprises. Maybe not what you thought I would write, but the last four years were just that.<br />
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May good fortune be with you<br />
May your guiding light be strong<br />
Build a stairway to heaven<br />
With a prince or a vagabond<br />
(Forever Young Rod Stewart)<br />
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<br />Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-45471372498014878802019-06-03T15:29:00.000-05:002019-06-03T15:29:38.354-05:00Seahorses Running Wild In The Wiindy City<div style="border-image: none;">
<a href="https://1.bp.blogspot.com/-o0DyMQgt0Xw/XPPU1nK0oCI/AAAAAAAAGfo/5jkOZJF__sELBWEyfjYz-nb8GfRMGlv2gCLcBGAs/s1600/IMG_1097.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="500" data-original-width="895" height="178" src="https://1.bp.blogspot.com/-o0DyMQgt0Xw/XPPU1nK0oCI/AAAAAAAAGfo/5jkOZJF__sELBWEyfjYz-nb8GfRMGlv2gCLcBGAs/s320/IMG_1097.JPG" width="320" /></a>I'm Back....,</div>
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I know I said I was going to move on from this blog but then this weekend happened.<br />
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Saturday I got to be a part of this amazing event in Chicago Illinois put on by the No Stomach For Cancer Organization called Spotlight On Stomach Cancer.<br />
So I drove to Chicago on Friday and spent the night outside the city visiting a local brewery(because I like beer) and then Saturday morning Uber'd my way to the event. The event was being held at the University of Chicago Medicine Center for Care & Discovery.</div>
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Now to be honest, I didn't know what to expect. I have been to conferences, symposiums. and seminars before but they were almost always as part of my professional life, never my personal life. I was worried that I was going to be told that I needed to do this or I needed do that. To many conferences end with here "buy my book" or "congratulations you now own a timeshare". So I didn't know what to expect but I knew that I needed to go. I can't tell you why I thought it was so important that I attend, I just knew that it was.<br />
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I am so glad I went, what an amazing event!</div>
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There was so much information and support. The No Stomach For Cancer organization was there with information. Doctors from the University of Chicago medical team and a surgeon from the National Institute of Health out of Maryland were there to talk and answer questions. They talked about strategies, technology and advancements that will make the surgery safer and easier to recover from.They talked about the procedure and how they biopsied to look for cancer cells.<br />
There was time and the opportunity to meet folks from all over. People like me, who had to made the decision to fight back against cancer by having there stomachs removed. I met people who were just starting their journey and were hungry for information and support to let them know that they would be OK.</div>
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Then later in the evening things got real.<br />
After the event they host what they call "A Night of Healing". This not only included the families with the CDH1 mutation attending the conference. It also included the Medical Professionals, and the staff from the No Stomach for Cancer Organization.<br />
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We moved from the hall to a smaller more intimate lounge for some food and beverages. There were nice places to sit, to get to know one another and talk. We talked in small groups as we moved randomly around the room. We talked as a large group on a wide range of topics. No question was off limit. We talked and talked. There was laughter, there were tears, but most importantly there was support.<br />
Just an amazing night.<br />
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We call ourselves "seahorses' because seahorses have no stomachs. There is not a lot of us. Still our numbers are growing. I could of said that regrettably the numbers our are growing, but that's not really the case. This conference was about knowledge and this knowledge is giving us the chance to fight back. To take back the control. Becoming a seahorse is just one was to say "F.U." to stomach cancer.<br />
So Thank you to the No Stomach for Cancer organization. Thank you to the University of Chicago Medicine Center for Care & Discovery for hosting it and all the professionals who gave of their time. Thank you to Dr. Jeremy Davis from The National Institute of Health for coming out to talk to us.<br />
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And if there was one thing I could say that I took away from the conference, it is that we not in this fight alone. Our numbers maybe small, but there are a lot of folks fighting for us. We are not alone.<br />
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Forget what we're told before we get too old<br />
Show me a garden that's bursting into life<br />
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All that I am All that I ever was<br />
Is here in your perfect eyes, they're all I can see</div>
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(Chasing Cars Snow Patrol)</div>
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<div class="separator" style="border-image: none; clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-Y5C59NXyRfI/XPUhYrVVE1I/AAAAAAAAGgo/2Q39yhWym9U0VPDaKT9pBfenvRI-bJFTgCLcBGAs/s1600/No%2Bstomach%2Bfor%2Bcancer.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="672" data-original-width="960" height="280" src="https://1.bp.blogspot.com/-Y5C59NXyRfI/XPUhYrVVE1I/AAAAAAAAGgo/2Q39yhWym9U0VPDaKT9pBfenvRI-bJFTgCLcBGAs/s400/No%2Bstomach%2Bfor%2Bcancer.jpg" width="400" /></a></div>
<br />Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-80764350795004351642019-03-26T13:09:00.000-05:002019-03-26T13:16:40.423-05:00Just Seems Like A Good Time.<div style="border-image: none;">
<a href="https://3.bp.blogspot.com/-pBdxH1mzJWc/XJpGWuw0CAI/AAAAAAAAGCE/VjUMwSmtgB4llcc3zxz70nU_K2l8U3haACLcBGAs/s1600/Thank%2Byou.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="392" data-original-width="394" height="198" src="https://3.bp.blogspot.com/-pBdxH1mzJWc/XJpGWuw0CAI/AAAAAAAAGCE/VjUMwSmtgB4llcc3zxz70nU_K2l8U3haACLcBGAs/s200/Thank%2Byou.png" width="200" /></a>When I started writing this blog it was with the intent of using it to update family and friends on my journey with the CDH1 mutation. I also wanted to leave it as resource that anyone could use if they found themselves in the same position. So it told my story with this specific genetic mutation and my journey to becoming stomachless.</div>
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Well then life happened and I slammed my face into a sign at 28 miles per hour. Now I had something else to write about. Different experience, but still partly the same as far as updating friends and family about how I was doing. So I added that update to this blog.</div>
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Now it is time for me to move on as much as I can.</div>
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So this will be my last regular update to this blog. I might update it on the anniversaries of both events just to let you all know how I am doing, however as much as I can I want to close this chapter of my life. Somethings will never change. I will never again have a stomach so that issue will always hang around. And unless they find a way to correct my double vision, I will continue to live seeing life out of only one eye. I can't change it so I need to move past it.</div>
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So I want to take a few minutes to say Thank You. </div>
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When I started writing this the thought of doing it scared the hell out of me. I never considered myself a good writer or a good story teller, yet I needed an outlet to talk about how I was doing. I also wanted to capture the experience in case one of my kids were forced down this path. So I wrote. Sometimes a lot. I used "loose" instead of "lose" and "your" instead of "you're" yet you all stuck around and continued to read my story.</div>
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Still I never expected it to turn into what it has or connect me with so many people. I have reconnected with old friends I had lost track of, classmates and past coworkers. Which has been so amazing!</div>
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I also want to thank the No Stomach for Cancer organization for publishing this blog and getting it out worldwide. This blog has been read in over 70 countries by close to 100,000 people, many of whom took the time to send me notes of support. These are people I have never met or will never meet.</div>
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And just to be clear, I fully believe that I lived through both of these medical misadventures because of your support. That is why I wanted to write and just say thank you.</div>
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<br /></div>
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Am I going to quit writing? No. I am just going to switch to another blog and there let me write about things that are important to me that have nothing to do with this topic. I want to make sure that this one only dealt with this period of my life and the next blog writes about other stuff. That blog I won't do because I need to keep people informed. I will just do it because I get to.</div>
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One last thing. I have been asked a number of times why I try to end my blogs with a music quote. So I thought I would answer that. Music has always been a part of my life. It has celebrated with me, cried with me and carried me through some of the darkest moments of my life. When things would get tough during this period I would turn some music to help me relax and stay grounded. </div>
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So I thought I would share some. I hope you enjoyed them.</div>
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Thank you,</div>
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Roger</div>
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<br /></div>
<div class="b_paractl">
Oz never did give nothing to the Tin Man</div>
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That he didn't, didn't already have</div>
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And Cause never was the reason for the evening<br />
Or the tropic of Sir Galahad</div>
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So please, Believe in me</div>
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(Tin Man America)</div>
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Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-33440853422749571672019-02-13T17:44:00.000-06:002019-02-13T17:54:05.593-06:00Dear Younger Me...<span style="font-family: "calibri";">This past Saturday marked an anniversary of sorts.</span><br />
<span style="font-family: "calibri";">It was February 9<sup><span style="font-size: x-small;">th</span></sup> 2015 when I received the news
that I carried the mutated CDH1 gene. Four years have come and gone since then and a lot has happened. So I
started wondering what all would have happened if I hadn’t had the testing
done. What if I hadn't had the surgery. What would happen if I could go back in time and tell myself what all was coming
my way over the next few years.</span><br />
<span style="font-family: "calibri";">What if I could go back?</span><br />
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<span style="font-family: "calibri";">What would I say?</span></div>
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<span style="font-family: "calibri";">Would I change anything?</span></div>
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<span style="font-family: "calibri";"><br /></span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">Complicated questions…</span></div>
<span style="font-family: "calibri";">I could talk about the positive aspects of my decision. There was no cancer
found. There is no chance that the cancer, HDGC, will ever rear it's ugly head. I am also healthier then I was before the surgery.</span><br />
<span style="font-family: "calibri";">I could go on and on about the less positive aspects, like
strictures and the stent. How the stent was painful and had to be removed, but
still in the end it did its job.</span><br />
<span style="font-family: "calibri";">Not related to the surgery, I could talk </span><span style="font-family: "calibri";">about the job loss that followed and work out a plan to do a
better job managing through that.</span><br />
<span style="font-family: "calibri";">Would I let slip the amazing news that the title of Grandpa
was coming its way soon? Would I mention the news about a second one due in
May?</span><br />
<span style="font-family: "calibri";">Would I list off all of the family and friends that were about to enter
or reenter his life? Or the people who are going to be stopping by just to
check in to see how things were going?</span><br />
<span style="font-family: "calibri";">I would definitely make sure that there was NO MOPED RIDE during
the 2017 Hanover Harvest Festival. Keep that scooter in the garage!</span><br />
<span style="font-family: "calibri";"><br /></span>
<span style="font-family: "calibri";">So what if I did all of this?</span><br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">What if I had the chance to go back and tell myself all of
this?</span></div>
<span style="font-family: "calibri";">Would it change anything? Would I want it to?</span><br />
<span style="font-family: "calibri";">Honestly, I hope not.</span><br />
<span style="font-family: "calibri";">Since that day I have experienced all the emotional ups and
downs that come with having to make the decision on whether or not I was going
to have them remove my stomach. I have had to live with the second guessing and
the what if’s after I made that decision. </span><br />
<span style="font-family: "calibri";">Still would I change anything? I believe that it was the
challenges and the stress of going through that time that has helped make this latest
situation more bearable, or less shitty if you pardon my language.</span><br />
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<br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">You see life still happens. Through this all, life has
presented me with one surprise after another. Some were unwelcomed and
ill-timed. Still so many were good surprises, some were down right amazing. </span></div>
<span style="font-family: "calibri";">So on this anniversary of sorts, I just want to reflect on
this part of the journey and acknowledge that even with all my current challenges
that life still happens.</span><br />
<span style="font-family: "calibri";">So if I did go back I imagine that I would probably just share a beer with myself. Tell myself something along the lines of "you're doing fine", but "buckle up buttercup".</span><br />
<span style="font-family: "calibri";">There is still more life yet to be lived.</span><br />
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<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;"><br /></span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">Every mountain every valley</span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">
Thru each heartache you will see</span></div>
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<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">
Every moment brings you closer</span></div>
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<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">
To who you were meant to be</span></div>
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<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">
Dear younger me</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">(Dear Younger Me<span style="mso-spacerun: yes;">
</span>MercyMe)</span></div>
<br />Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-10707081795350901092019-01-26T14:30:00.002-06:002019-01-26T14:30:46.815-06:00Squeezing Juice... A Medical Update<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">No matter what decision you need to make, you make that decision based on a perceived expected outcome. </span><span style="font-family: "arial" , "helvetica" , sans-serif;">At work we use the phrase "is the juice worth the squeeze?". Are you getting enough out of what you are doing to make doing it worth while.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">So that brings us to my last trip to the Mayo Clinic.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">We hadn't been sitting in the room with the doctors very long when the conversation surprisingly turned to scheduling another surgery.</span><div class="separator" style="border-image: none; clear: both; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://3.bp.blogspot.com/-52H1yg3_eA8/XEzCilH1g2I/AAAAAAAAFzk/KKMg8JEserkngPNKFV-SIXYr4eCzczmUgCLcBGAs/s1600/time%2Bout.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="533" data-original-width="800" height="133" src="https://3.bp.blogspot.com/-52H1yg3_eA8/XEzCilH1g2I/AAAAAAAAFzk/KKMg8JEserkngPNKFV-SIXYr4eCzczmUgCLcBGAs/s200/time%2Bout.jpg" width="200" /></a></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Time out!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I stopped everyone.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">"The last time I was sitting in this chair you all said that was nothing more that you could do to fix me."</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">To which Dr. Holmes responded, "And that has not changed we can not fix you. The surgery we are talking about would be done in an effort to give you a limited field of single vision."</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">"Define limited field of vision and when I would have it?" I asked.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">"When your head was stationary. For instance when you are having a conversation one person or sitting watching television." was Dr. Holmes's response.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">"And the rest of the time I would have double vision and need glasses or my patch.</span></div>
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<span style="font-family: "arial";">"correct" he responded.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">"So let's say the person I am talking to moves their head, or the image on the TV screen suddenly moves. Would my vision switch back from single vision to double vision and then back to single vision?"</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">He replied "most likely, and over time your mind might be able to compensate for the movement and you wouldn't notice it. However it will take you some time to get used to it."</span><br />
<span style="font-family: "arial";"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">He continued to go on talking about the fact that he felt that it would work this time because they were going to be "more aggressive" with the surgery and "over correct" the placement of the eye to compensate for movement of the eye location when it starts to heal.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Huh... The only thing I really heard was "More aggressive."</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The last time we did this surgery it hurt like hell for a couple of weeks and now he wants to be "more aggressive" for just some minor improvements.</span><br />
<span style="font-family: "arial";"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Was the juice worth the squeeze?</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Yea, I don't think so.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">So I politely backed out.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">There will be no more surgeries unless it is to save the eye, or technology improves to where they can fix me. I need to be done for a while. I just don't have any more surgeries left in me at this time.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">We agreed to touch base every six months or so just to see if any improvements in technology have surfaced. Sooner if something changes with my eye. However my next trip to Mayo will happen in June sometime.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">So now I will close the chapter of this book and see what new adventures await me in the one eyed land of land of fairies and elves.</span><br />
<span style="font-family: "arial";"><br /></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">I</span><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #222222; display: inline; float: none; font-style: normal; font-weight: 100; letter-spacing: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"> am what I am</span></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br style="-webkit-text-stroke-width: 0px; background-color: white; box-sizing: border-box; color: #222222; font-family: Programme, sans-serif; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 100; letter-spacing: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;" /><span style="background-color: white; color: #222222; display: inline; float: none; font-style: normal; font-weight: 100; letter-spacing: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">And what I am needs no excuses</span><br style="-webkit-text-stroke-width: 0px; background-color: white; box-sizing: border-box; color: #222222; font-family: Programme, sans-serif; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 100; letter-spacing: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;" /><span style="background-color: white; color: #222222; display: inline; float: none; font-style: normal; font-weight: 100; letter-spacing: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">I deal my own deck</span><br style="-webkit-text-stroke-width: 0px; background-color: white; box-sizing: border-box; color: #222222; font-family: Programme, sans-serif; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 100; letter-spacing: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;" /><span style="background-color: white; color: #222222; display: inline; float: none; font-style: normal; font-weight: 100; letter-spacing: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Sometimes the ace, sometimes the deuces</span><br style="-webkit-text-stroke-width: 0px; background-color: white; box-sizing: border-box; color: #222222; font-family: Programme, sans-serif; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 100; letter-spacing: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;" /><span style="background-color: white; color: #222222; display: inline; float: none; font-style: normal; font-weight: 100; letter-spacing: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">It's one life and there's no return and no deposit</span><br style="-webkit-text-stroke-width: 0px; background-color: white; box-sizing: border-box; color: #222222; font-family: Programme, sans-serif; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 100; letter-spacing: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;" /><span style="background-color: white; color: #222222; display: inline; float: none; font-style: normal; font-weight: 100; letter-spacing: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">One life so it's time to open up your closet</span><br style="-webkit-text-stroke-width: 0px; background-color: white; box-sizing: border-box; color: #222222; font-family: Programme, sans-serif; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 100; letter-spacing: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;" /><span style="background-color: white; color: #222222; display: inline; float: none; font-style: normal; font-weight: 100; letter-spacing: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Life's not worth a damn till you can shout out</span><br style="-webkit-text-stroke-width: 0px; background-color: white; box-sizing: border-box; color: #222222; font-family: Programme, sans-serif; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 100; letter-spacing: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;" /><span style="background-color: white; color: #222222; display: inline; float: none; font-style: normal; font-weight: 100; letter-spacing: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">"I am what I am"</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">(I am what I am Gloria Gaynor)</span></div>
Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-54446383384320930252019-01-04T20:35:00.000-06:002019-01-04T20:35:20.151-06:00A Guy Walks Into A Bar. Part Two First off, Happy New Year!<br />
A few weeks ago North Carolina got slammed with over a foot of snow. My daughter bundled up our two year old Grandson and took him out to experience it. He took one look at it shook his head, said "Nope. Up". He wanted no part of it. In the end he was just fine. It was that initial shock that he needed help getting through.<br />
<br />
So I had been in a similar spot after being told that the Mayo Clinic did not have the technology to fix my double vision. This was from the doctor who was supposed to be the miracle man, my last chance to getting my vision fixed. Afterwards, I Just kind of went numb and started going through the motions of daily living.<br />
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I didn't know how much of a funk I was in until one particular Sunday when things changed and the feeling lifted.</div>
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It all started when I walked into a bar.</div>
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<a href="https://3.bp.blogspot.com/-gUYRCL0MEag/XDAE0GvNmFI/AAAAAAAAFtc/fws2raHnMEItdyhOqUAttgHYdCavlTu4gCLcBGAs/s1600/River%2BInn.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="189" data-original-width="367" height="102" src="https://3.bp.blogspot.com/-gUYRCL0MEag/XDAE0GvNmFI/AAAAAAAAFtc/fws2raHnMEItdyhOqUAttgHYdCavlTu4gCLcBGAs/s200/River%2BInn.jpg" width="200" /></a>This bar was the River Inn in Hanover. They know me and I know them. They know that my wife and I like to sit bar side and for the most part what our drink selection will be.</div>
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This particular Sunday we walked into the River Inn and bunch of people looked my way and yelled "SUPRISE!"<br />
I stood there for a second confused. There was no one behind me so who were these people and why were they trying to "Surprise" me? It's was not my birthday or anything.<br />
<br /><br />
Then I recognized one and thought "Laurie? Why would she be here?" Then one by one I started recognizing the group of folks who were there. These were all high school classmates that I hadn't seen in years.<br />
OK, so there is the periodic Facebook stalk, but still I haven't seen these folks in years.<br />
Still here they were. In Hanover. At the River Inn. Too see me.<br />
How they put in all together and pulled it off I will never know, but they did!<br />
We talked, and laughed for a couple of hours. We could have carried on all day if time had permitted.<br />
So like Remi with the snow in North Carolina, I just needed a "pick me up".<br />
This was the pick up I needed and it came at the perfect time.<br />
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So to that crazy group of friends that made the trek to the River Inn just to see me and all the holiday greetings I received over the following days.<br />
It was amazing and I still think about and smile.<br />
<br /><br />
Thank you, Thank you, I needed that!<br />
<br /><br />
If there's still a chance then take my hand<br />
And we'll steal away<br />Off into the night 'til we make things right<br />The sun's gonna rise on a better day<br />
(Come a little Closer Dierks Bently)<br />
<div class="separator" style="border-image: none; clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-pSy3U3YVwnw/XDADayqQrXI/AAAAAAAAFtQ/McVcQJu5BC02oEpVqmU_lmrWNH2iaOnGgCLcBGAs/s1600/new%2Byear.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="180" data-original-width="180" src="https://1.bp.blogspot.com/-pSy3U3YVwnw/XDADayqQrXI/AAAAAAAAFtQ/McVcQJu5BC02oEpVqmU_lmrWNH2iaOnGgCLcBGAs/s1600/new%2Byear.jpg" /></a></div>
<br />Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-57346838775133830552018-12-04T17:55:00.001-06:002018-12-04T17:55:46.240-06:00Mudville<br />
<div style="margin: 0in 0in 0pt;">
<div style="border-image: none;">
<a href="https://2.bp.blogspot.com/-T29jtn5sunw/XAa0tYdoSwI/AAAAAAAAFj4/l1XHbo2NuOkS68eD3b8DpZ7XI6_ZlYRQwCLcBGAs/s1600/mudville.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="500" data-original-width="323" height="200" src="https://2.bp.blogspot.com/-T29jtn5sunw/XAa0tYdoSwI/AAAAAAAAFj4/l1XHbo2NuOkS68eD3b8DpZ7XI6_ZlYRQwCLcBGAs/s200/mudville.jpg" width="128" /></a><span style="font-family: "calibri";">There is a famous poem written by Ernest Lawrence Thayer
called “Casey at the Bat”. It is a poem about baseball and how the hopes of one
team rested on the shoulders of one man, the mighty Casey.</span></div>
<div style="border-image: none;">
<span style="font-family: "calibri";"><br /></span></div>
</div>
<div style="margin: 0in 0in 0pt;">
<div style="border-image: none;">
<span style="font-family: "calibri";">Here is the last paragraph of that poem:</span></div>
</div>
<div style="margin: 0in 0in 0pt;">
<div style="border-image: none;">
<span style="font-family: "calibri";">“Oh, somewhere in the favored land the sun is shining
bright, the band is playing somewhere, and somewhere hearts are light;</span></div>
</div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">And somewhere men are laughing, and somewhere children
shout, but there is no joy in Mudville – mighty Casey has struck out.”</span><br />
<span style="font-family: "calibri";"><br /></span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">Well, my Mudville was at the Mayo Clinic and my mighty Casey was my
Surgeon Dr. Holmes. A surgeon who specializes in double vision and who has been
known to be able to pull off miracles. My hopes for single vision rested with him.</span><br />
<span style="font-family: "calibri";">However yesterday he informed me of the following:</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">“We can’t fix your
eye. The technology necessary to do it does not exist at this time.”</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">And with that statement my quest to be able to
use my right eye once again ended with a thud.</span><br />
<br />
<br />
<span style="font-family: "calibri";">In the end there was just too much damage done to the eye
socket. In most cases double vision is either horizontal, vertical or a little
of both. With surgery and/or corrective lenses they have an excellent chance of
getting you back to single vision.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">In my situation not only do I have both the
horizontal and vertical issue, my eye is not sitting level. Due to this the image I see leans
to the right and the degree that it leans to the right makes correcting it, at
this time, improbable at best. Then there is an issue with scar tissue that has formed behind
my eye. It is restricting my eye movement. This is where the missing technology
comes into play. Today, they have no way of fixing this issue. They have tried
to cut away the scar tissue with each surgery, but it always returns. It keeps my eye from moving naturally when I move my head up or down or side to side.</span><br />
<span style="font-family: "calibri";">So what's next?</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">I will continue to do my physical therapy through the end
of the year. After the first of the year we head back down to Mayo to see if my
double vision has improved. We are not holding out hope for this, but they want
to look at it one more time before moving forward.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">Once they have ruled out any future procedures, then they
are going to fit me for a special set of glasses. These will have a lens in the
right eye that people will be able to see through when looking at me, but I
will not be able to see out of. I will then rotate between the glasses and an
eye patch depending on what I am doing or how I am feeling.</span><br />
<span style="font-family: "calibri";">My life with monocular vision will officially start then.</span><br />
<span style="font-family: "calibri";"><br /></span><br />
<span style="font-family: "calibri";">How am I doing with all of this you may wonder? I am numb. I
am disappointed. I am angry. This is not how I wanted this medical misadventure to end. Yes, I have always know that there was a really good chance that I would never regain the use of my right eye. It is just that I
have had so many surgeries on this eye that I always expected that someway,
somehow, I would get back to single vision.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">Now that’s not gonna happen.</span><br />
<span style="font-family: "calibri";">The mighty Casey has struck out.</span><br />
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;"><br /></span><br />
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">Don't your feet get cold in the
wintertime<br />
The sky won't snow and the sun won't shine<br />
It's hard to tell the night time from the day</span><br />
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">You're losin' all your highs and lows<br />
Ain't it funny how the feelin' goes away..</span><br />
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">(Desperado<span style="mso-spacerun: yes;"> </span>The
Eagles)</span></div>
Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-1991911953893609232018-11-06T21:31:00.003-06:002018-11-07T12:01:20.650-06:00It All Started With "This Is Not Good"<p dir="ltr">The Mayo Clinic.<br>
One of the finest medical facilities in the world.<br>
It has treated Kings, Presidents and celebrities galore. It is known around the world as the place to go when you truly need to get something fixed. It is a well oil machine that runs like clockwork and the staff is committed to turning the impossible into everyday occurrences.<br>
So what happens when the wheels come off?<br>
What happens when they everyday goes south?<br>
At what point do you start to get worried.<br>
At what point does the Mayo Clinic start to get worried?<br>
Well...<br>
It wasn't so much the phrase that was issued "This is not good".<br>
It wasn't so much that that particular phrase was said four different times over two different visits.<br>
It wasn't even that it was said by four of the top optical surgeons the Mayo Clinic has to offer.<br>
It was the phrase that followed that sent everything into a tailspin personally and the Mayo Clinic medically. <br>
That phrase was:<br>
"He's not going to make it until then".<br>
It was said at least six times during this period, but I have become numb to the phrase and don't know what to think and am just going with the flow.<br>
First off, let me say that my life is not in jeopardy. It is not or has ever been in jeopardy with the care that I have received and I continue to receive at Mayo.<br>
The issue is that I am once again at risk of losing my right eye,</p>
<p dir="ltr">So what is happening?<br>
For a year or so now I have known that my right side lower eye lid has been rolling in. I have had more than a few surgeries to try to fix it. No matter how many times we have rolled the eyelid out, it rolls itself back in. This all has to do with the fact that my eyeball is not in the same place; it is lower and set back from where it was originally. This causes a gap between the lid and the surface of the eye which allows the eyelid to roll in. The plan was we would fix this once all the other surgeries were done.<br>
Now on the outside of your eye is a outer lens of some sort that protects the main area of your eye. <br>
My rolled in eyelid and eyelashes are rubbing against that lens and wearing it away. In my case it is on the very lower section of the white section of my right eye, If that area opens up, or that lens gets worn away, well then it is game over for the eye. I lose my right eye.<br>
That is where I am at. <br>
So I have run out of time. The outer lens <u>has</u> gotten so thin that they do not believe that it will last until my scheduled surgery on November 14th.</p>
<p dir="ltr">What do we do? <br>
Emergency surgery will be performed on the eye tomorrow at 1PM the Mayo Clinic. They have pulled together a team of surgeons that they feel can pull this off. The goal will be to reconstruct the eyelid by taking tissue from the inside of my mouth to re-build the eyelid. Once done it should protect the lens, but I need to get to that point.</p>
<p dir="ltr">That is what tomorrow is all about.<br>
I just wanted to let folks know...<br>
Talk to you on the flip side.<br>
Roger</p>
<p dir="ltr">Does anybody really know what time it is (I don't)<br>
Does anybody really care (care about time)<br>
If so I can't imagine why (no, no)<br>
We've all got time enough to cry<br>
(Does anyone really know what time it is   Chicago)<br><br><br><br><br><br><br><br><br><br><br><br></p>
Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com3tag:blogger.com,1999:blog-1724699318794317153.post-14938072339832697152018-10-14T21:17:00.001-05:002018-10-14T21:17:34.139-05:00Surgery Update. Nine out of ten patients surveyed.<u>You've seen the commercials, nine out of ten doctors surveyed....</u><br />
Well here is my experience.<br />
"I will tell you that over 90 percent of the people who have this surgery are disappointed with the initial results".<br />
Dr Holmes actually said that.<br />
Before I had the surgery.<br />
What the hell happened to the miracle man? Where did he go I want that guy doing the surgery!<br />
He went on to explain that as patients we tend to assume that surgery fixes everything. You go in, go to sleep and when you wake up everything is better. In many many cases that is simply not realistic but as patients we tend to expect that. Such would be the case with my surgery.<br />
<br /><br />
So I had the surgery this past Tuesday. The surgery took a little over three hours and according to Dr. Holmes went wonderful. They ended up doing surgery on both eyes and when I awoke I was still seeing double. Disappointed? Yep, big time.<br />
<br /><br />
They had attached surgical thread to the muscles of both eyes and then started pulling on them to align the eyes. All I can say about that experience was that it hurt like hell even with numbing drops. Once the eyes were adjusted they had Edie in a chair across the room and I was to focus on her. Was there any part of her face that I could see singular vision of. There was. Her nose. Everyone in the room got excited except me.<br />
Seriously was that as good as it gets?<br />
He then holds up a Dilly Bar stick (tongue depressor) with letters written on it. The biggest letter was an "E". "Tell me if there is a place where you only see one E?" There was at just over three feet away. Again all the folks in the room got excited. Me, not so much.<br />
<br /><br />
Seriously? After three some hours of surgery I was seeing single vision in a space no bigger than a quarter. I can understand why most people are disappointed after surgery.<br />
I am now almost a week out of surgery and the quarter vision only is only slightly bigger. It could take eight weeks for this to get better. I am not impressed.<br />
I put in the drops, hourly. I do the exercises four times a day and in the end the headaches are intense. However everyone says DR. Holmes is a miracle man.....<br />
So let's look at the positives.<br />
I no longer wear a patch. My eyes are not level so I look like a Picasso painting, but the pirate look is gone.<br />
I can see out of my right eye. Instead of being high and wide to the left with a tilt. it is now side by side with a little tilt. DR. Holmes feels my "mind" will fix the tilt. I feel I might have killed that fix with the alcohol I drink (just kidding, but really turn one eye ten degrees to the left?).<br />
I get to drive and go back to work on Wednesday.<br />
I have a follow up appointment with Mayo on the 22nd.<br />
I am hoping that things change between now and then: the 22nd.<br />
<br /><br />
Turn around, Every now and then I get a little bit tired of listenin to the sound of my tears<br />Turn around, Every now and then I get a little bit nervous that the best of all the years have gone by<br />Turn around, Every now and then I get a little bit terrified and then I see the look in your eyes<br />
(Total Eclipse of the Heart Bonnie Tylor)<br />
<br />
<br />Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com1tag:blogger.com,1999:blog-1724699318794317153.post-51946241478158532132018-09-28T21:08:00.002-05:002018-09-28T21:08:08.621-05:00One Last Chance.. A Surgery Update<br />
Sorry about the back to back posts, but I wanted to give you an idea of what the world looks like with double vision. I also wanted to give a quick update on what is going on and I didn't want to try to do that in one post.<br />
So how is it going you ask?<br />
Well the good news is that I still have a chance. It's a pretty slim chance at best, but there is a chance. If I want to get back to singular vision then I am pretty much gonna need a miracle. Working in my favor though is that I will be in the hands of a gifted Mayo Clinic surgeon who, everyone I talk to believes, can work miracles. Lets hope he has one more left.<br />
So where did the wheels come of this time? I was at the Mayo Clinic meeting with the orbital surgery and plastic surgery teams when I heard that damn sentence again.<br />
"I am sorry Mr. Engnell but there is nothing we can do to fix your eye". <br />
The concern is where the eye is located and the amount of work that would need to be done. In their words, they have a better chance of leaving me blind in that eye then they do fixing it the location of the eye. I have now heard this from North Memorial, the University of Minnesota and now the Mayo Clinic. So there will be no more surgeries on the orbital bone and the placement of my eye. It is where it is and we will go forward with what we have.<br />
So what does this mean?<br />
Since my eyes can not be aligned the chances of having a single field of vision are pretty much gone. Yet they all say if anyone can pull it off it would be this one surgeon at the Mayo Clinic. He will need to catch some luck but he has done it before. The risk here is that we are probably only going to get one shot at it. So the surgeon will do his best, but close might be the best that we can hope for.<br />
If he can't get me to single vison but can get it close, then he feels that they can create a set of glasses that can correct the double vision. We wont know anything for sure until I am in the operating room. Again, close might be the best that I can hope for.<br />
<br />
<br />
The surgery is set for October 9th.<br />
I need to be down there on the 8th so they can do pre-opt work. The morning of the 9th is the surgery. The afternoon of the 9th they will do the eye adjustments. I have to be back on the 10th for final adjustments and then they send me home.<br />
<br /><br />
Doing the surgery will be a tall lanky Brit named Dr. Holmes (and no his first name is not Sherlock, but that would have been really funny). <br />
<div style="margin: 0in 0in 0pt;">
He comes highly recommended and is the one surgeon most hospitals and doctors end up recommending for their seeming impossible or miracle needing cases. I guess I now fall into both those categories.</div>
<div style="margin: 0in 0in 0pt;">
<br /></div>
<div style="margin: 0in 0in 0pt;">
Dr. Holmes has done it before! Pulled off a miracle that is. Many times if you asked other doctors.</div>
<div style="margin: 0in 0in 0pt;">
I actually met one of his patients.</div>
<div style="margin: 0in 0in 0pt;">
Not at the Mayo Clinic but at the state fair of all places. I was listening to a band when this lady walks up to me and starts asking me about my eye and what I was planning on doing to fix it. It turns out she needed a miracle too. She was born with double vision and had it throughout her life. She had multiple surgeries but was never able to get one that fixed her vision. She was finally told she would have double vision for the rest of her life. Then someone recommended she try the Mayo Clinic. So a few years ago she contacted them and they introduced her to Dr. Holmes. He was able to correct her vision to the point where she only needs contact lenses to see perfectly our of both eyes.</div>
<div style="margin: 0in 0in 0pt;">
“My amazing miracle man” is how she described him.</div>
<div style="margin: 0in 0in 0pt;">
<a href="https://3.bp.blogspot.com/-7b-lI15AIGU/W665PbpDhEI/AAAAAAAAFHQ/8OjR9N5c4SgirqvRaKt6KWKZoudm9hjEACLcBGAs/s1600/state%2Bfair.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://3.bp.blogspot.com/-7b-lI15AIGU/W665PbpDhEI/AAAAAAAAFHQ/8OjR9N5c4SgirqvRaKt6KWKZoudm9hjEACLcBGAs/s200/state%2Bfair.jpg" width="200" /></a>I don’t remember her name. I don’t remember where she was from, but here is the picture that was snapped of us at the state fair. She gives me hope that there is still a chance.</div>
<div style="border-image: none;">
Let’s hope Dr. Holmes has one more miracle in his pocket.<br />
<br /></div>
<div style="margin: 0in 0in 0pt;">
<br /></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; font-family: "verdana" , sans-serif; mso-ansi-language: EN; mso-bidi-font-family: Helvetica;">We spotted
the ocean at the head of the trail<br />
Where are we going, so far away<br />
And somebody told me that this is the place<br />
Where everything's better, everything's safe</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri" , sans-serif; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">(Walk On The Ocean<span style="mso-spacerun: yes;"> </span>Toad The Wet Sprocket)</span></div>
<div style="margin: 0in 0in 0pt;">
<br /></div>
<br />Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-74619633086775953012018-09-27T10:06:00.000-05:002018-09-27T10:25:01.788-05:00A Guy Walks Into A Bar....<br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">I was sitting in one of my favorite watering holes with a
friend a couple of weeks ago when a guy walks in, sits down next to us, takes one look
at me and says “Hey, look a pirate."</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">I get that a lot. </span><span style="font-family: "calibri";">I have learn to roll with it as much as possible.
I’ll just smile and go on my way. </span><span style="font-family: "calibri";">Once and a while I might throw an “AARRRGG” at
the kids when they say it, but when adults say it I just try to ignore them.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">In
their defense how often do you see a person walking around with a black patch
covering their right eye? </span><span style="font-family: "calibri";">It's just that after 14 months the fun has kind of gone
out of looking like I am an extra on a Disney set.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><br /></span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">So I thought I would try to show you what I see when I
remove the eye patch. In case you were wondering…</span></div>
<div style="margin: 0in 0in 0pt;">
<a href="https://4.bp.blogspot.com/-gwCPfNfaq5E/W6zuyKVGGSI/AAAAAAAAFGk/lOB7tr5K9eMlgD3tqlX0bCq8d-jzlDvQwCLcBGAs/s1600/Double%2Bvision%2Bart.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="468" data-original-width="350" height="320" src="https://4.bp.blogspot.com/-gwCPfNfaq5E/W6zuyKVGGSI/AAAAAAAAFGk/lOB7tr5K9eMlgD3tqlX0bCq8d-jzlDvQwCLcBGAs/s320/Double%2Bvision%2Bart.jpg" width="239" /></a></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">The image on the right is a painting done by an artist named
Ken Kimball. He was left with double vision after a brain injury. When he
started to paint again he decided to paint how he now viewed the world.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><br /></span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">This painting
is the closest I could find to what I see when I remove the patch. The only
difference is that, in my view, the second image is up higher to the left and
tilted to the right.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">The other issue I have is that the muscles surrounding the
eye were damaged during the accident. This gives the doubled image the ability
to move when you walk or turn your head.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">All of this makes doing anything with
both eyes problematic. So I wear the patch.</span></div>
<div style="margin: 0in 0in 0pt;">
<br /></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">As for the guy at the bar? A couple of minutes after he said
it he was apologizing for being insensitive and bought me a beer. </span><span style="font-family: "calibri";">That works.</span></div>
<br />
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;"><br /></span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">Fill my eyes with that double vision,</span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">No disguise for that double vision</span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">
Ooh, when it gets through to me,</span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;"></span><span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">It's always new to me</span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">My double vision gets the best of me</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">(Double Vision<span style="mso-spacerun: yes;">
</span>Foreigner)</span></div>
Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-12264413564953449242018-08-14T20:48:00.000-05:002018-08-14T20:48:17.621-05:00Never Fold Pocket Two'sI enjoy playing Texas Hold'em poker. <br />
<div class="separator" style="border-image: none; clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-jYxoud9qVr0/W3OAqkIkLSI/AAAAAAAAE3U/qjggeSbcj1QyJMpqHeRYNP-0pspMQdCmQCLcBGAs/s1600/pocket%2Bduces.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="239" data-original-width="280" height="170" src="https://3.bp.blogspot.com/-jYxoud9qVr0/W3OAqkIkLSI/AAAAAAAAE3U/qjggeSbcj1QyJMpqHeRYNP-0pspMQdCmQCLcBGAs/s200/pocket%2Bduces.jpg" width="200" /></a></div>
There is a hand that most everyone plays... <br />
Pocket Two's.<br />
"You never lose with pocket two's." is what they say and a lot of times they are correct.<br />
<br />
<br />
Well I am sitting on pocket twos for tomorrow and not sure how the deal will go.<br />
<br />
<br />
My appointment at the Mayo Clinic is at 2 pm. It is going to go one of two ways. Real good, or real bad. I have prepared myself for the real bad scenario. Don't get me wrong, I would love to have the real good outcome, but I have already heard the bad words from the U of M and North Memorial.<br />
I have heard it twice now. "I am sorry Mr. Engnell, there is nothing that we can do to fix your double vision." There is even a team at the U of M waiting for me to be told this so that they can help take the next step. I just don't know what that next step will be.<br />
It almost for sure includes yet another surgery. But a surgery to do what? Fix my eyes? Remove my right eye? Or another option is to leave it alone and let it be, but sew it shut so I can not use it. <br />
<br /><br />
Which happens<br />
Do I catch a runner on the flop?<br />
Or a two on the river?<br />
I know they are all poker sayings but that is what I feel like right now. Do I catch a miracle with this doctor and he is able to pull off some kind amazing feet that will have me using both eyes again. Or is this all a waste of time and I need to adjust to a life of using only one eye.<br />
<br />
A lot is riding on tomorrow.<br />
I will let you know how the deal goes.<br />
Every gambler knows<br />
That the secret to survivin'<br />
Is knowin' what to throw away<br />
And knowin' what to keep<br />
(The Gambler Kenny Rogers)<br />
<br />
<br />
<br />
<br />
<br />Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-44448207149945135772018-07-30T12:39:00.001-05:002018-07-30T12:39:26.501-05:00One Week And Three Days.<br />
<div style="border-image: none; margin: 0in 0in 0pt;">
<a href="https://3.bp.blogspot.com/-5tRldWEfeeY/W1887DfslTI/AAAAAAAAEuk/ZteDv0jyDYAXz6Yrhmt7UECczukDdf-6wCLcBGAs/s1600/three%2Bdays.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="355" data-original-width="474" height="149" src="https://3.bp.blogspot.com/-5tRldWEfeeY/W1887DfslTI/AAAAAAAAEuk/ZteDv0jyDYAXz6Yrhmt7UECczukDdf-6wCLcBGAs/s200/three%2Bdays.jpg" width="200" /></a><span style="font-family: "calibri";">Anniversaries:</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
Defined as “The annual recurrence of a date
marking a notable event”.</div>
<div style="margin: 0in 0in 0pt;">
<br /></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">So here we have reached the week in the year that I have
come to dread, especially after last year. </span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">Here is what I am looking at and
they all have a similar destination.</span><br />
<span style="font-family: "calibri";">My anniversaries happening this week.</span></div>
<br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">On August 2<sup><span style="font-size: x-small;">nd</span></sup> 2010 I woke up in the University of
Minnesota hospital after having a brain tumor removed.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">On August 4<sup><span style="font-size: x-small;">th</span></sup> 2015 I woke up at the Mayo Clinic after
having my stomach removed.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">On August 5<sup><span style="font-size: x-small;">th</span></sup> 2017 I woke up in intensive care at
North Memorial hospital after an accident. Actually I woke up on the 6<sup><span style="font-size: x-small;">th</span></sup>,
but the accident was on the 5<sup><span style="font-size: x-small;">th</span></sup>. I had 3 cracked vertebrae, a
cracked skull, and the right side of my face crushed. Right eye all messed up.</span></div>
<br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">The results (so far) that are due to these three misadventures.
I have had 5 surgeries and been put under an additional 12 times for tweaks or
fixes. That’s a grand total of 17 times going under anesthesia to fix things as
a result of waking up in a hospital during one of these upcoming days.</span><span style="font-family: "calibri";"><br /></span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">So as you can guess I kind of want to skip this week.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">I know I can’t skip the week but the anxiety still remains.
Goal for the week? To not wake up in the hospital. I got this…… I hope.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">So how am I doing with all of these anniversaries, well you
have to take them by date.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">On August 2<sup><span style="font-size: x-small;">nd</span></sup> <span style="mso-spacerun: yes;"> </span>it will have been eight years since my surgery
and the reoccurring tumor has not made a second appearance. The good news here
that the surgeons don’t think it will return. I had a final CT scan done a few
months ago and there was no sign of the tumor. I was given the all clear. This chapter
of my life is now over.</span></div>
<br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">On August 4<sup><span style="font-size: x-small;">th</span></sup> it will have been three years since
I had my total gastrectomy. I got lucky. No cancer was found back then and I
continue to live without the fear of Heredity Diffused Gastric cancer ever
rearing its ugly head. The months following the surgery were pretty tough, but
today I am fine. There are still foods that I can’t eat or if I do they give me
trouble however my weight has stabilized. This chapter of my life will never
end. Living without a stomach still sucks at times, but for the most part I am good
with where I am at.</span></div>
<br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">Then there will be August 5<sup><span style="font-size: x-small;">th</span></sup>. It will have been
one year since the accident. Where most of the injuries have healed, the eye is
still out of whack. The University of Minnesota has done all they can and are
sending me down to a doctor at Mayo who has “preformed some miracles in the
past”. According to the U I am going to need him to perform one more miracle if
I am to keep the eye.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">I should know in the next week or so when my appointment at
the Mayo Clinic will be. Stay tuned.</span></div>
<br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">This week consists of work (full time job), 2 shifts at the
store and the Hanover Harvest Festival on Saturday. Oh and the second shift at the
store is on Saturday, during the Harvest Festival, just like last year…</span></div>
<br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">I just need to make it to next week and I will be good.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">Right?</span><span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;"><br /></span></div>
<br />
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">Especially at night I worry over situations</span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">I know will be alright</span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">Perhaps it's just imagination</span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">Day after day it reappears</span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">Night after night my heartbeat shows the fear</span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">
Ghosts appear and fade away</span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="font-family: "arial" , sans-serif; font-size: 10pt;">(Overkill<span style="mso-spacerun: yes;"> </span>Men At
Work)</span></div>
Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-2605738593922459862018-07-12T15:48:00.000-05:002018-07-12T15:48:54.125-05:00A Medical Update. The Hail Mary.....<span style="font-size: small;">Here is a short update from my appointment with the surgical team at the University of Minnesota yesterday.</span><br />
<br />
Remember these are the folk that are supposed to do the key surgery to fix the double vision problem I am having. I have had to wait to see them until they were able to get my eyelid stabilized, which we believe that they have done. Now I just wanted to hear when the surgery would be so I could put all of this behind me.<br />
I was not expecting this..<br />
"I am sorry, but we can't fix your eyes. Everything that we could do would mess up your vision and possibly leave you legally blind. Again I am sorry but there is nothing more that we can do for you."<br />
I just sat there and said out loud crap (actually I used a different word and I am pretty sure you can figure it out).<br />
<br />
Here is the issue.<br />
Usually if you experience double vision the view from the one eye is either vertically or horizontally impacted. So what you see out of one eye is higher or lower, or to the right or the left of what you see out of the other. Well my other eye's view is wide high and shanked to the left. And that is not the issue. That is fixable.<br />
The problem now is that with all the scar tissue that has developed my right eye is not it the right place. Not only is that eye looking high and right, it is also kiddywampus. It is not level. So if they even try to bring the two views together, I still wont be able to see because one is tilted significantly to the right. The view will be completely blurry and no matter how much they try they wont ever become one.<br />
So they can either fix the location of the eye or the orientation of the eye, not both. And in both cases doing the one surgery will make the other issue worse. They also told me that due to the amount of reconstruction done on that that eye socket and the amount of scar tissue in the area, I am "not a candidate for further eye socket surgery." So I am kind of stuck.<br />
This is the second hospital network that is not willing to do anymore work on the eye. First North Memorial and now the U of M.<br />
<br />
So what is next.<br />
The surgeon at the U knows of a guy down at the Mayo Clinic who has had some success working with cases like mine. So I have a referral to go down and see him.<br />
The problem there is that I still have an outstanding bill with them from my stomach removal procedure and follow up fun I went trough with that adventure. We have been going back and forth with my insurance company on this and if I want to get into see anyone then it looks like I am going to have to pay it. So I will. However, Mayo Clinic will not let me schedule this new appointment until that bill is cleared up. That is going to take a bit.<br />
And if I get down to the Mayo and they can't help me..<br />
We start the conversation about what is next including very possibly removing the eye.<br />
Kind of running out of options here.<br />
<br /><br />
And with all of his strength he gave a mighty shove<br />Then a miner yelled out "there's a light up above!"<br />And twenty men scrambled from a would-be grave<br />Now there's only one left down there to save, big John<br />
<div class="b_paractl">
<span style="font-size: small;">(Big Bad John Jimmy Dean)</span></div>
Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-57472055554955713712018-07-03T18:47:00.002-05:002018-07-03T18:47:41.080-05:00A Post From The BeachHappy Tuesday everyone.<br />
<a href="https://lh3.googleusercontent.com/-4A-oV9bl8dA/WzvsAEJN8fI/AAAAAAAAEYY/SU1VC6qiS449fwBOpl5wJyGJFt70Yga6wCHMYCw/s640/blogger-image--1135909904.jpg" imageanchor="1" style="-webkit-text-stroke-width: 0px; background-color: transparent; clear: right; color: #0066cc; float: right; font-family: Times New Roman; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 1em; margin-left: 1em; orphans: 2; text-align: left; text-decoration: underline; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><img border="0" height="148" src="https://lh3.googleusercontent.com/-4A-oV9bl8dA/WzvsAEJN8fI/AAAAAAAAEYY/SU1VC6qiS449fwBOpl5wJyGJFt70Yga6wCHMYCw/s200/blogger-image--1135909904.jpg" width="200" /></a>When we go on vacation one of the things I like to do is meet new people. This trip to the ocean is no exception.<br />
Now I have met a few folks so far but the first guy kind of stands out.<br />
His name is Tim. He is from New York. Tim and his wife own the townhouse attached to the one we are renting. He is retired and his idea of a perfect morning was to have his coffee beachside. He told me right away that he lives here six months out of the year and the fewer the tourist around him the better. So I was surprised when he asked me to grab a seat and join him for his morning ritual.<br />
Now Tim is loud, complete with the stereotypical New York accent. He is opinionated. He is passionate. He loves his family and this country complete with all of its "idiots and morons". For a good thirty minutes or so we were agreeing, disagreeing, correcting each other and laughing. Although he also did try to sell me the townhouse we were staying in because I "seem like a nice enough guy". And by the way it was for sale, and he figured he could get me a good price on it but it needed some work.<br />
<br />
As I mentioned we had been going back and forth for a good thirty minutes when he pulled a left turn with the conversation and wanted to know what I was selling.<br />
<br />
"What?" was about all I could respond.<br />
"Sorry" he responded "but most people who end up stopping by to chat on the beach at this time of the morning are either selling something or need money, and I noticed your shirt."<br />
I was wearing my CDH1 mutation positive t-shirt. The money we paid for our shirts went to support further research on the mutation and look for possible cures. It is a shirt to remind me where I have been and what I have over come not some fund raiser.<br />
<br />
He quickly added, " Don't get me wrong I am not mad, I have enjoyed our talk, but want you to know that it's ok to give me you pitch".<br />
<br />
I laughed and assured him I wasn't selling anything and gave him the readers digest condensed version of my story. He was a little skeptical at first because I was wearing my eye patch and we all know that folks can't live without a stomach. Though he did have a buddy who knew somebody who had part of his removed he thinks.<br />
So we chatted a bit longer and I decided to head back to the townhouse. I thanked him for letting me join him and maybe we chat again one morning before we leave and I left.<br />
<br />
Later in the day we crossed paths again on the beach and I greeted him by name. His wife wife wanted to know how he knew me so he told here. "They're renting the unit next to ours. I told you. The guy without a stomach.<br />
Even here I am the guy without a stomach!<br />
<br />
I am figuring he will be telling my story when he gets back to the Big Apple.<br />
<br />
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; border-collapse: collapse; border-spacing: 0px 0px; color: #444444; display: inline !important; float: none; font-family: Arial,Helvetica,Sans-Serif; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 19.5px; list-style: none; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="color: black;">Al</span><span style="color: black;">l of his life, he's mastered choice</span></span><br style="-webkit-text-stroke-width: 0px; background-color: transparent; border-collapse: collapse; border-image: none; border-spacing: 0px 0px; border: 0px rgb(68, 68, 68); font-family: Arial,Helvetica,Sans-Serif; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 19.5px; list-style: none; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;" /><span style="color: black;"><span style="-webkit-text-stroke-width: 0px; background-color: transparent; border-collapse: collapse; border-spacing: 0px 0px; display: inline !important; float: none; font-family: Arial,Helvetica,Sans-Serif; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 19.5px; list-style: none; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Deep in his heart, he's just, he's just a boy</span><br style="-webkit-text-stroke-width: 0px; background-color: transparent; border-collapse: collapse; border-image: none; border-spacing: 0px 0px; border: 0px rgb(68, 68, 68); font-family: Arial,Helvetica,Sans-Serif; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 19.5px; list-style: none; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;" /><span style="-webkit-text-stroke-width: 0px; background-color: transparent; border-collapse: collapse; border-spacing: 0px 0px; display: inline !important; float: none; font-family: Arial,Helvetica,Sans-Serif; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 19.5px; list-style: none; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Living his life one day at a time</span><br style="-webkit-text-stroke-width: 0px; background-color: transparent; border-collapse: collapse; border-image: none; border-spacing: 0px 0px; border: 0px rgb(68, 68, 68); font-family: Arial,Helvetica,Sans-Serif; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 19.5px; list-style: none; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;" /><span style="-webkit-text-stroke-width: 0px; background-color: transparent; border-collapse: collapse; border-spacing: 0px 0px; display: inline !important; float: none; font-family: Arial,Helvetica,Sans-Serif; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 19.5px; list-style: none; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">And showing himself a really good time</span><br style="-webkit-text-stroke-width: 0px; background-color: transparent; border-collapse: collapse; border-image: none; border-spacing: 0px 0px; border: 0px rgb(68, 68, 68); font-family: Arial,Helvetica,Sans-Serif; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 19.5px; list-style: none; margin: 0px; orphans: 2; padding: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;" /><span style="-webkit-text-stroke-width: 0px; background-color: transparent; border-collapse: collapse; border-spacing: 0px 0px; display: inline !important; float: none; font-family: Arial,Helvetica,Sans-Serif; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 19.5px; list-style: none; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Laughing about the way they want him to be</span></span><br />
<span style="color: black;"><span style="-webkit-text-stroke-width: 0px; background-color: transparent; border-collapse: collapse; border-spacing: 0px 0px; display: inline !important; float: none; font-family: Arial,Helvetica,Sans-Serif; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 19.5px; list-style: none; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"></span></span>(The Best That You Can Do, Arthur's Theme Ronan Keating)<br />
<span style="color: black;"></span><br />Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-87821581180668464012018-06-27T23:30:00.000-05:002018-06-27T23:30:11.799-05:00All Signs Post East!<br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">One of my favorite Jimmy Buffett songs is called “School Boy
Heart”. The reason for that is that the lyrics seem to talk about this journey
I have been on.</span><br />
<span style="font-family: "calibri";">The song has lines in it like “Frankenstein has nothing on this
body of mine” and a line I quoted in an earlier post “I suspect I died in some cosmic
shipwreck, with all hands spread all over the deck…. Then some kind of obscene
and unscrupulous mind, began to pick up what he could find. Added ice, shook me
twice, rolled the dice.” I seem to fit both of those lines.</span></div>
<br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">I mean they took my stomach out. I have cadaver bones in me.
I have a wondering eye that just doesn’t work right. I wear and eye patch.</span><br />
<span style="font-family: "calibri";">In general I am missing or have damaged parts. And the parts
I have are not all working correctly.</span><br />
<span style="font-family: "calibri";">The song just fits.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">So I am going to stick with that song and add another line with
a new connection. </span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">The line goes “I came
with nomad feet and some wandering toes.”</span><br />
<span style="font-family: "calibri";">Nomadic feet. Wondering toes.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">It could have said Drifting. Gone
walkabou</span><span style="font-family: "calibri";">t or meandering. It doesn’t matter what you call it I am going to do it
and the journey starts tomorrow.</span></div>
<div style="margin: 0in 0in 0pt;">
<br /></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">And I am not going alone.</span><span style="font-family: "calibri";"><br /></span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">A Father/Son road trip.</span></div>
<br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">We leave Tomorrow. Our destination? North Topsail Beach,
North Carolina.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">How to go? what to do? Maybe we just make it up as we go.</span></div>
<br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">If I were to play it safe I would plan our route, plan our
stops, and plan some events. Make sure that we spent our time wisely. Plan,
plan, plan. However where is all the fun in that? So on Thursday we will just
point the car east and go. <span style="mso-spacerun: yes;"> </span>Head towards
Chicago and at some point in time take a right. Head south towards Cincinnati
and take a left. Then drive until we run out of roads at the ocean.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">All the while exploring and seeing what sort of mischief we
can get into (yea we will have our smart phones in case we get lost). We have
roughly 48 hours to make a 22 hour drive. So Jack and I will be able to take
our time and see what’s all going on between here and there. We will figure it
out as we go, that is why they call it an adventure.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">A Father/Son road trip!</span></div>
<div style="margin: 0in 0in 0pt;">
<br /></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">I will be bring a laptop and hope to write some while I am
out there. It’s been a while since I last wrote anything and there is plenty of
“stuff” going on. So I plan on spending some time writing. </span></div>
<br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">But for now I am just heading east….</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><br /></span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; mso-ansi-language: EN; mso-ascii-font-family: Calibri; mso-bidi-font-family: Helvetica; mso-hansi-font-family: Calibri;"><span style="font-family: "calibri";">I got a school boy heart, a novelist eye</span></span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; mso-ansi-language: EN; mso-ascii-font-family: Calibri; mso-bidi-font-family: Helvetica; mso-hansi-font-family: Calibri;"><span style="font-family: "calibri";">
Stout sailor's legs and a license to fly</span></span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; mso-ansi-language: EN; mso-ascii-font-family: Calibri; mso-bidi-font-family: Helvetica; mso-hansi-font-family: Calibri;"><span style="font-family: "calibri";">
I came with nomad feet and some wandering toes</span></span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; mso-ansi-language: EN; mso-ascii-font-family: Calibri; mso-bidi-font-family: Helvetica; mso-hansi-font-family: Calibri;"><span style="font-family: "calibri";">That walk up my long board and hang off the nose</span></span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; mso-ansi-language: EN; mso-ascii-font-family: Calibri; mso-bidi-font-family: Helvetica; mso-hansi-font-family: Calibri;"></span><span lang="EN" style="color: #333333; mso-ansi-language: EN; mso-ascii-font-family: Calibri; mso-bidi-font-family: Helvetica; mso-hansi-font-family: Calibri;"><span style="font-family: "calibri";">(School Boy Heart<span style="mso-spacerun: yes;">
</span>Jimmy Buffett)</span></span></div>
Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-21628026587841017512018-05-09T15:24:00.001-05:002018-05-09T15:24:20.416-05:00Spare Parts Anyone?<div style="border-image: none;">
<a href="https://1.bp.blogspot.com/-0ghQ8KUErhw/WvMeI-whS-I/AAAAAAAAD4w/CZxj25D3Wn8JBWA8HlHByESh42LxUXehACLcBGAs/s1600/Marty%2BF%2BEyes.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="360" data-original-width="480" height="240" src="https://1.bp.blogspot.com/-0ghQ8KUErhw/WvMeI-whS-I/AAAAAAAAD4w/CZxj25D3Wn8JBWA8HlHByESh42LxUXehACLcBGAs/s320/Marty%2BF%2BEyes.jpg" width="320" /></a><span style="font-family: "calibri";">Do you know that there is a lab at the University College
London that is called the “Human Body Parts Store”? </span><br />
<span style="font-family: "calibri";">There is also a place
called the “Anatomy Warehouse” where you can shop for body parts on line. Everything
from heats, brains, bones, livers and kidneys.</span></div>
<div style="border-image: none;">
<span style="font-family: "calibri";">Having this type of service
available back in the day would have made Dr. Frankenstein’s “experiment” go a
lot smoother. He could have even paid with PayPal and got the points.</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><br /></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">Why would I bring this up?</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">Well I am going back into surgery
on Monday.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">This time they are going to put another cadaver bone it. Another
I say? Yep.</span><br />
<span style="font-family: "calibri";">The first one was to replace the smashed plate underneath my eye that
holds the eye in place. Well that one didn’t work so they took it out. They
then used a 3D printer to create a replica of my eye socket and then built me a
custom plate and put that one in. It was made out of a cadaver bone. Well then they decided that wasn’t working
so they took that out and replaced it with a leveling wedge (Not sure what that
was made of though, but most likely a cadaver bone). Now they have decided that
they are going to have to go back in, leave the wedge in and put another cadaver
bone in.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">And yippee me, and as a bonus, I get to have my eye sewed shut yet again.</span><br />
<span style="font-family: Calibri;"><br /></span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">So why this surgery.</span><br />
<span style="font-family: "calibri";">I am losing vision in my right
eye.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">The vision is leaving slowly, but
quickly if that makes any sense. A few weeks ago I noticed that there were
times when I would have problems seeing out of the damaged eye. It would be blurry
or so dark yellow that I couldn’t see anything. So I would blink a few time and
most of the time the vision would clear. Now this is happening all the time. My
vision is always blurry and it gets a little worse everyday. The images I do see might be flooded with dark yellow,
red or grey. I can blink all that I want and it doesn’t clear up. This all happened in a matter of weeks.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">To top that
off my eye lid rolled back in on the eye again. That’s like the fourth time
that has happened.</span><br />
<span style="font-family: "calibri";">Now the right eye wasn’t aligned
with the left so I don’t use it all that often. And I am getting used to seeing
out of one eye, but I was still hoping for different ending to this little
misadventure. The folks at the University of Minnesota are still working on it,
but my confidence in a positive outcome is waning.</span><br />
<br /><br />
<span style="font-family: "calibri";">I was kind of looking forward to the
next surgery because it was supposed to be the big one where they work on
aligning the eyes again. Now with this latest setback that surgery has been
pushed back indefinitely and two more surgeries have been added. So I will be
having this one on Monday. Then we can schedule the alignment surgery 3-6 month
later and then a third surgery after that to fix some<span style="mso-spacerun: yes;">
</span>cosmetic issues with the eyelid.</span><br />
<span style="font-family: "calibri";">The problem is that the last two
surgeries will only happen if this upcoming surgery on Monday is a success. If
not all bets are off.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri" , sans-serif; font-size: 11pt;">I really don’t want to lose my sight in that
eye.</span><br />
<span style="font-family: "calibri" , sans-serif; font-size: 11pt;">It would really suck.</span></div>
<span style="font-family: Calibri;"><br /></span><br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri" , sans-serif; font-size: 11pt;"><span style="color: #222222; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">Hold it all together, Everybody needs
you strong</span></span></div>
<span style="font-family: "calibri" , sans-serif; font-size: 11pt;">
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "times new roman"; font-size: small;">
</span><span style="color: #222222; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">But life hits you out of nowhere, And
barely leaves you holding on</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "times new roman"; font-size: small;">
</span><span style="color: #222222; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">And when you're tired of fighting, Chained
by your control</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "times new roman"; font-size: small;">
</span><span style="color: #222222; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">There's freedom in surrender</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "times new roman"; font-size: small;">
</span><span style="color: #222222; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">Lay it down and let it go</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "times new roman"; font-size: small;">
</span><span style="color: #222222; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">(Just Be Held<span style="mso-spacerun: yes;"> </span>Casting Crowns)</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "times new roman"; font-size: small;">
</span></div>
</span><div style="margin: 0in 0in 0pt;">
<br /></div>
<br />
<div style="margin: 0in 0in 0pt;">
<br /></div>
Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-63705813168342434132018-03-27T16:15:00.003-05:002018-03-27T16:15:40.912-05:00When Stomachless And Causing Problems Pays Off Quick Update From Yesterday's Surgery.<br />
<br />
As far as we know the surgery went fine. My eye is sewed shut and will remain so until next Wednesday. So once we understand how the eye is working we can plan our next move.<br />
This is my fifth or sixth surgery since the accident. Before each surgery I have mentioned to the surgical team that I do not have a stomach, we talk about why and then it is never mentioned again.<br />
<br /><br />
That is until yesterday.<br />
I was told by a couple folks to make sure that the Anesthesiologist knew about it. So when he came in and did his spiel I told him that I had a total gastrectomy and about some of the challenges that could bring. He asked a lot of questions and said, "Ok that is important to know, thank for telling me" and excused himself (they were still working on getting the I.V. started).<br />
When the Anesthesiologist returned he notified me that based on what I told him he was changing how they were going to change how they managed my health while I was out. Like I said earlier I have had a few surgeries with this misadventure, but this is the first time anyone came in and told me that they were changing my care due to the fact that I told them that I was stomachless. They may have changed it, but if they did they didn't tell me.<br />
<br /><br />
What did they change? The concern was something coming back up the esophagus and ending up in my lungs. So if I remember this correctly, instead of using medicine to make sure that nothing comes back up the esophagus, they made the decision to put a breathing tube in to block any chance of something ending up in my lungs.<br />
I can only believe that the other teams did similar things but just did not inform me of it. This was the first time that someone came in and said I am going to change what I do based on this information.<br />
I guess it pays to be a pain after all.<br />
<br /><br />
By the way to put the wedge they had to remove the custom plate. So I asked about the custom plate that they put in and if they were going to save it in case that for some reason this surgery went bad. The plate was made with a cadaver bone, so the short answer was no you couldn't save it to use again at a later date.<br />
His question to me? Do you want it? <br />
Heck Yea!<br />
<br /><br />
Everyone is helpful, everyone is kind<br />
On the road to Shambala<br />
Everyone is lucky, everyone is so kind<br />
On the road to Shambala<br />
(Shambala Three Dog Night)Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-7078021199473786572018-03-24T20:42:00.000-05:002018-03-24T20:42:04.167-05:00Stomachless and causing problems.<div style="border-image: none;">
<a href="https://2.bp.blogspot.com/-dT781sA8KCc/Wrb6cRdpMyI/AAAAAAAADRg/YltJXx6erjs293TjtH4ZFpVQ4qFb1HSswCLcBGAs/s1600/why.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="627" data-original-width="940" height="132" src="https://2.bp.blogspot.com/-dT781sA8KCc/Wrb6cRdpMyI/AAAAAAAADRg/YltJXx6erjs293TjtH4ZFpVQ4qFb1HSswCLcBGAs/s200/why.jpg" width="200" /></a><span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">One
of the problems being stomachless is that people don't understand it. </span></span></div>
<div style="border-image: none;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">The
concept of living without a stomach is completely foreign to them. You are constantly
explaining why you don't have a stomach, how your plumbing works, and how your
life changed after your total gastrostomy.</span></span></div>
<div style="border-image: none;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span><span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">I would like to say that this limited
to the everyday person on the street, but many medical professionals do not comprehend
it either. It is just not that common of a surgery and CDH1 mutation, where the
number of affected families grows every day, is still very rare.</span></span></div>
<div style="border-image: none;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;"><br /></span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">Due
to this you end up becoming your own health advocate.</span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;"><br /></span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span><span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">For
example.</span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span><span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">This
past week I received a call from the U to go over the prep and details on
Monday’s surgery. You know details like where the surgery is being done. When
the surgery is. What time I need to show up. Reminding me that I need to get a
pre-op exam before Monday. All pretty normal stuff.</span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span><span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">Then
they told me that I could only drink clear liquids and have nothing to eat
after midnight on Sunday.</span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;"><br /></span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span><span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">Well
there is a problem.</span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span><span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">It
is not that this is anything new. I knew they were going to say it. This is not
my first surgery. What changed was the time that this surgery was going to take
place at. Before now all of my surgeries/sedations (insert dilations for
strictures here) have been right away in the morning. This surgery is not
scheduled until 2:30 in the afternoon. I don’t have to show up before 1:00PM.</span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span><span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">The
surgery is one hour long, with and they estimate an hour in recovery.</span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span><span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">So
if I eat right after that, I will have gone almost 17 hours without eating and
that is if I eat just before midnight. Not a big fan of eating that late. So it
will probably be closer to 20 hours without food, if I eat around 9pm.</span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;"><br /></span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span><span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">For
someone without a stomach that is bad. We need to eat often, in small
quantities. As I have mentioned before, what works best for me is to graze all
day. I usually have one meal so to speak, and then just munch my way through
the rest of my activities. It works for me. My weight has stabilized and even
if I go three or four hours without food I am fine, In this case we are looking
close to 20 hours without food and that is if I feel like eating right after
the surgery. I am not sure I am going to be up for that.</span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;"><br /></span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span><span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">So
I let the scheduler know that this timeline would not work for me and asked if
this was a hard and fast rule that I couldn’t break or was there some wiggle
room with the midnight timing. I went through the whole stomachless thing and
she did not know what to say. I get that a lot. </span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">She asked if it was possible to
“eat a large meal as my late meal to carry me over?” I explained to her that
there was no such thing as a large meal for someone without a stomach so she would have to come up with a better plan. She
said she would have to get back to me and with that we ended our conversation.</span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;"><br /></span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span><span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">In
the end I got a call back a few hours later with some options. </span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">None of them
were great options, but options none the less. The midnight thing is just
something they tell everyone. It covers them no matter what time the surgery
is. The actual number is closer to eight hours. Well they actually said eight
hours, but they said eight hour before I checked in, not when the surgery was
scheduled for. We agreed to disagree on that topic. On their timeline I can get
up and eat as long as I do it before 5AM. Not gonna happen. </span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">I talked with my
doctor and she suggested that I get up as early as possible and if I felt like
I needed something have a piece of toast and her words “don’t tell them, you
should be fine.”</span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;"><br /></span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span><span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">I
learned a number of years ago that I needed to become my own health advocate. Too
often in today’s world we get told standard answers that covers the person answering
the question no matter the question or the industry you are asking the question
of. If these medical misadventures have taught me anything is that you need to ask why. And if you don't like the answer ask again and again until YOU are comfortable and satisfied with the response.</span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span><span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">In the end it is just about you.</span></span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;"><br /></span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">I
will post something after Monday’s surgery. Thanks for stopping.</span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><br /></span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"></span><span lang="EN" style="color: #333333; mso-ansi-language: EN; mso-bidi-font-family: Helvetica;"><span style="font-family: Calibri;">These are the contents of my head<br />
And these are the years that we have spent<br />
And this is what they represent<br />
And this is how I feel</span></span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; mso-ansi-language: EN; mso-bidi-font-family: Helvetica;"></span><span lang="EN" style="color: #333333; mso-ansi-language: EN; mso-bidi-font-family: Helvetica;"><span style="font-family: Calibri;">(Why<span style="mso-spacerun: yes;">
</span>Annie Lennox)</span></span></div>
<div style="border-image: none;">
<br /></div>
<div style="margin: 0in 0in 0pt;">
<br /></div>
Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-26817750020717734082018-03-21T19:02:00.000-05:002018-03-21T19:02:45.825-05:00"Sometimes I just think funny things" Dudley Moore, Arthur
<br />
<div class="separator" style="border-image: none; clear: both; text-align: center;">
<br /></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<a href="https://4.bp.blogspot.com/-3PoulQZuwlg/WrLv3UhzvLI/AAAAAAAADQI/R5aCfNqrEqMMW1ATwxG5g9q2O_yohf6FQCLcBGAs/s1600/pulling.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="335" data-original-width="474" height="141" src="https://4.bp.blogspot.com/-3PoulQZuwlg/WrLv3UhzvLI/AAAAAAAADQI/R5aCfNqrEqMMW1ATwxG5g9q2O_yohf6FQCLcBGAs/s200/pulling.jpg" width="200" /></a><span style="font-family: Calibri;">So at the end of my last blog, I made the statement that:</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; font-size: 11.5pt; mso-ansi-language: EN; mso-ascii-font-family: Calibri; mso-bidi-font-family: Arial; mso-hansi-font-family: Calibri;"><span style="font-family: Calibri;">“Then once that is completed they can go in with a
screwdriver and adjust the alignment screws on the sides like we did with the
automobile headlamps.”</span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: Calibri;"><span lang="EN" style="color: #333333; font-size: 11.5pt; mso-ansi-language: EN; mso-ascii-font-family: Calibri; mso-bidi-font-family: Arial; mso-hansi-font-family: Calibri;">R</span><span lang="EN" style="color: #333333; font-size: 11.5pt; mso-ansi-language: EN; mso-ascii-font-family: Calibri; mso-bidi-font-family: Arial; mso-hansi-font-family: Calibri;">emember that?</span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">I thought it was a funny line so I added it.</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">It was just supposed to be a funny thought.</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: Calibri;"><br /></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">Then there was today.</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">Due to a bunch of different reasons I am moving my care to
the University of Minnesota from North Memorial. This has nothing to do the
with the care I received from North Memorial they have been absolutely amazing
top to bottom. It is just better for my family and I if we move to the U at
this point in my recovery.</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: Calibri;"><br /></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">I met with the DRs from the U of M this morning.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">The next surgery is scheduled for this coming Monday. They
are going to go in, remove the custom plate that was put in and put then
replace it with the wedge. The wedge will raise the eye and move it forward. Once
done then they can go in and work the muscles around the eye to get everything
into alignment.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;"><br /></span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">That is where the conversation got a little wonky.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">Once I heal, a second surgery will take place. A different
doctor will handle the procedure to do all the aligning. They are going to go
in and make “adjustments” to the muscles surrounding the eye to get it as lined
up as possible. They will then close me up and move me to recovery.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">Once in recovery they will make the final “adjustments” to
get the eyes lined up once again for single vision.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">Adjustments in recovery you ask?</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;"><br /></span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">Remember the comment about going in and adjusting the
headlights using the screws?</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">The statement I thought was funny.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">It was just supposed to
be funny.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">Yeah, that is what they are going to do, sort of.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;"><br /></span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">I will not have screws, but they are going to attach
surgical thread or something to the muscles surrounding the eye.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">Once in recovery
they will then pull on each thread/string/wire/clothes hanger/whatever separately
until they get the eye in a place where it lines up with the other one and I
have single vision again.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">Sounds painful.</span></div>
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">My hope is for good drugs.</span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; mso-ansi-language: EN; mso-bidi-font-family: Helvetica;"><span style="font-family: Calibri;"><br /></span></span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; mso-ansi-language: EN; mso-bidi-font-family: Helvetica;"><span style="font-family: Calibri;">And I love the clothes I wear<br />
Where their life goes I don't care<br />
It's my price I'm proud to pay<br />
I'm a freak</span></span></div>
<div style="margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; mso-ansi-language: EN; mso-bidi-font-family: Helvetica;"><span style="font-family: Calibri;">(Freak Kiss)</span></span></div>
Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com2tag:blogger.com,1999:blog-1724699318794317153.post-58613666381989538782018-03-07T19:24:00.000-06:002018-03-08T15:17:19.457-06:00Chasing Squirrels... A Medical Update<br />
<div style="border-image: none; margin: 0in 0in 0pt;">
<a href="https://4.bp.blogspot.com/-J3Uxc8rvD2M/WqCJdsvFxzI/AAAAAAAADEI/998rbwoDjL8tqjy8JzD7oXSVvQlmY1e4QCLcBGAs/s1600/squirrel%2Bchase.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="225" data-original-width="300" height="150" src="https://4.bp.blogspot.com/-J3Uxc8rvD2M/WqCJdsvFxzI/AAAAAAAADEI/998rbwoDjL8tqjy8JzD7oXSVvQlmY1e4QCLcBGAs/s200/squirrel%2Bchase.jpg" width="200" /></a><span style="font-family: "calibri";">Now I might be aging myself a little bit here, but remember
the round/square headlights on the older cars? </span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">For one reason or another one
would get out of whack and it wouldn’t look down the road quite right. </span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">My dad
would always ask me if I was chasing squirrels with that headlight because it
was always running pretty high up in the trees. It was his subtle way of telling me to
fix it.</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><br /></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">So I kind of have a headlight/eye out of alignment. It is not up chasing
squirrels in a tree out of whack, but out enough that I cannot use the eye. I have to wear an eye patch pretty much 24/7.</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">I
have had five surgeries on that eye and have been working on setting up the
sixth. Now I haven’t posted for a while and thought this might be a good time
to give you an update on where my recovery is at.</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<br /></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">Now this particular story starts with a comment about
someone else.</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">Recently I was meeting with the surgeon who is, scratch
that, was going to do the next round of surgery. </span><span style="font-family: "calibri";">The surgeon was saying all the
right things and she was confident in the procedure, but then she made this
comment;</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">“I was just talking with the lady in the next room and I was able to
tell her that I was 90% sure that I could fix her problem. I am nowhere near
that with you. My goal is to see if we can create a sweet spot in your vision
field that you can function with.”</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">SERIOUSLY?</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">I think I will be getting another
opinion. Thank you!</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><br /></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">So I headed to the University of Minnesota and met with an
eye surgeon there. Regrettably the news didn’t improve much. They ordered a new
CT Scan which I had the next day. The </span><span style="font-family: "calibri";">team there that is going to review
the CT scan and then let me know how they would proceed. However right off the bat
they told me that they may need to rebuild the eye socket again. The concern is
that my right eye is significantly lower and sunken further back than my left
eye. Due to this the surgeon I met with doesn’t feel they could adjust the muscles
around the eye enough to get it into alignment. He still needed to see the CT
Scan and meet with the rest of the team, but that was his initial thought.</span></div>
<br />
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">So I met with The DR from the U last Thursday and had the CT scan done on
Friday. On this past Monday I met with the surgeon who did the last round
of surgery at North Memorial and he concurred……<span style="mso-spacerun: yes;"> </span></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><span style="mso-spacerun: yes;"></span>With the U of M….</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">At least kind
of...</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">Like at the U Of M, he doesn’t feel
that the muscle surgery will work because my eye are too far off kilter. His
recommendation though was different. He wants to go in and put a wedge in to try
to get my eye to align. A wedge?</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><br /></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">This will give you an idea as to how tired I am of all of
this, this is what popped into my mind. I picture one of those wooden leveling
wedges that you use on door and window frames and the DR. with a hammer just
tapping it until he thinks it’s level and then snapping off the excess.</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">Then once that is completed they can go in with a
screwdriver and adjust the alignment screws on the sides like we did with the
automobile headlamps.</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">It could work.</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">And the squirrels could rest.</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"> </span></div>
<br />
<div style="border-image: none; margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; font-family: "verdana" , sans-serif; font-size: 10pt;">I've always
listened to your point of view</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; font-family: "verdana" , sans-serif; font-size: 10pt;"></span><span lang="EN" style="color: #333333; font-family: "verdana" , sans-serif; font-size: 10pt;">My ways I've
tried to mend</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; font-family: "verdana" , sans-serif; font-size: 10pt;">And I've always been a patient man</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; font-family: "verdana" , sans-serif; font-size: 10pt;"></span><span lang="EN" style="color: #333333; font-family: "verdana" , sans-serif; font-size: 10pt;">But my
patience has reached its end</span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span lang="EN" style="color: #333333; font-family: "verdana" , sans-serif; font-size: 10pt;"></span><span lang="EN" style="color: #333333; font-family: "verdana" , sans-serif; font-size: 10pt;">(Blue
Morning Blue Day<span style="mso-spacerun: yes;"> </span>Foreigner)</span></div>
Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-16356578592956555152018-02-21T19:47:00.002-06:002018-02-21T19:47:57.654-06:00Not A Long Post.Just so you know I write this with a heavy heart today.<br />
Why do we do what we do???<br />
This question is a question that I have asked myself time and time again. What if I hadn't made the decision to have my stomach removed. Where would I be right now?<br />
<br /><br />
I think about it a lot at these points in time. Times when life reaches out and slaps you across the face saying you got nothing. You see a young lady I had a chance to get to know some died on Monday. From brain cancer. She was 26 or 27. Way too young.<br />
Now on Saturday I will be going to a funeral. For someone I had recently gotten a chance to know, to support the guy she was supposed to marry and pay respect to folks I didn't know.<br />
All along knowing that I survived, but I am not sure why.<br />
<br /><br />
For those of you who know me, know that I had a brain tumor in 2010. In the end the tumor came back benign. I now know two other people who had brain tumors, neither were benign and both are gone now. First Mike and now Allie. It really sucks. Cancer sucks.<br />
Why was mine benign where there's were not. Why am I still here, when they are not?<br />
What happened in my life to make me miss the shit that comes with cancer.<br />
Don't get me wrong, I am happy it passed me by, but I wonder why me?<br />
My tumor was benign. Case closed. I have had six MRI's and the tumor has not reappeared.<br />
<br /><br />
Then in 2015 I had my stomach removed due to crappy luck. The crappy luck part was that my little sister had to get breast cancer in order for me to find out that there was a 86% chance that I would catch a terminal cancer. She had to endure so much. She had to go through so much.<br />
<br /><br />
It is just at times like these I wonder what happened? There are no answers. Life just happens.<br />
Cancer just sucks.<br />
<br /><br />
Please don't feel like you need to post anything to this blog. Sometimes I need it just to rant a little.<br />
Thanks for listening...<br />
<br /><br />
Pack my bag and let's get moving <br />'Cause I'm bound to drift awhile<br />Though I'm gone, gone <br />You don't have to worry <br />Long as I can see the light<br />
(Long As I Can See The Light Creedence Clearwater Revival)Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0tag:blogger.com,1999:blog-1724699318794317153.post-80597486670393838202017-12-30T10:32:00.000-06:002017-12-30T10:32:42.673-06:00Cheers!<div style="border-image: none;">
<a href="https://3.bp.blogspot.com/-TIifqZ_h910/Wke1tYpUK4I/AAAAAAAACzg/NNrwYOToEZEmoseg9YfdjaXm4-blJrtJwCLcBGAs/s1600/Cheers.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="415" data-original-width="625" height="132" src="https://3.bp.blogspot.com/-TIifqZ_h910/Wke1tYpUK4I/AAAAAAAACzg/NNrwYOToEZEmoseg9YfdjaXm4-blJrtJwCLcBGAs/s200/Cheers.jpg" width="200" /></a>As 2017 heads out of town, I thought I would throw a little levity towards at year that has been particularly tough.</div>
<div style="border-image: none;">
Do you remember the TV show cheers? The opening music sang about how everybody wants to go where everyone knows their name.</div>
<div style="border-image: none;">
<br /></div>
I think deep down we all want that place somewhere in our life. Whether it is your local restaurant, favorite bar, store, or place of worship we all want that place where they know you. I mean really know you.<br />
<br /><br />
For me that is the River Inn in Hanover.<br />
They call me by name. I get hugs. The owners know me. The staff knows me. Other patrons know me. They know what I like to drink and where I like to sit. They know what I have been through over the past few years and they check up on me. It's my place.<br />
<br /><br />
Now where your place is and at what level they know you at is very personal. You get to decide where it is and how well you want them to know you. And everyone's place is different for personal reasons. Once you have chosen this place and they get to know you then the place becomes special. And since you chose it, it become in a sense your place.<br />
<br /><br />
Well except for when it isn't, so let me tell you about yesterday. <br />
I got a new place where they now know me by name. I didn't pick it. If I had a top ten place list where everyone knows me, it wouldn't had made that list either.<br />
They know me by site and get my order ready when they see me.<br />
This location pretty much sums up the last few months of 2017.<br />
The place?<br />
Walgreens pharmacy.<br />
Yep I pulled into the drive thru to pick up a new prescription and before I can get my window all the way down the lady goes "Hi Roger, I have something for you." She then disappeared and came back with my new prescription. You know the year has been tough when the pharmacist knows you by name.<br />
Here is hoping that 2018 has less pharmacy visits than 2017.<br />
<br /><br />
HAPPY NEW YEAR EVERYONE!<br />
<br /><br />
Sometimes you want to go <br /> Where everybody knows your name, <br /> And they're always glad you came; <br /> You want to be where you can see, <br /> Our troubles are all the same; <br /> You want to be where everybody knows your name. <br />
(Where Everyone Knows Your Name. Gary Portnoy &Judy Hart Angelo)Roger Engnell Blog sitehttp://www.blogger.com/profile/01251489928969988159noreply@blogger.com0