tag:blogger.com,1999:blog-37633782442888368082024-03-19T02:20:44.999-07:00Meeting the ChallengeOn January 26, 2011 we were told that Phil had cancer somewhere. By March 14 we had a diagnosis--stage 4 colon cancer with a life expectancy of 6 months to a year. Phil's response: "I don't care what they tell me. I'm going to beat this!" And if anyone can do it, Phil can, God willing!Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.comBlogger41125tag:blogger.com,1999:blog-3763378244288836808.post-32301181796654705462015-04-28T23:57:00.000-07:002015-04-28T23:57:54.701-07:00He's Home!<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Phil went 48 hours without a fever and he was able to come home from the hospital today. His ANC was 1300 two days in a row. He has been in good spirits, and it's just so good to have him home again.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I had hoped he'd take a bit of time to rest and recover some strength, but that's not in his nature. When he said he thought he'd go to the station for a while on Wednesday, I asked him to clarify. He said he was leaving at the same time as usual (2:30 a.m.) and he would do his morning routine (write news, station logs, check accounts, broadcast live for a couple of hours, etc.), then see.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Of course no morning routine is the same without biscuits and gravy from Chevron! Thanks, you guys! Hopefully he'll be back for seconds later, like usual. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Moab . . . he's all yours in the morning. Phil has been told to wear a mask in public places. If you see him without it, give him a gentle reminder please. And if you're sick, give him a wide berth. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Thank you everyone for your faith and prayers, which have made this possible! We love you all!</span>Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com0tag:blogger.com,1999:blog-3763378244288836808.post-68899754257978685622015-04-26T20:13:00.000-07:002015-04-26T20:13:59.885-07:00Holding pattern . . .<span style="font-size: large;"><span style="color: #003366; font-family: Arial;">Today's report is late because there's been a dilemma about whether Phil was being transferred to Huntsman today or not. And we were waiting for lab reports. </span><span style="color: #003366; font-family: Arial;"></span></span><br />
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<span style="font-size: large;">Last night Phil's temperature went to 100.8 and 100.4 overnight. (Funny how it does that in the night.) Yesterday we were told if that happened he'd be transported. However, today all his blood work is going up, except platelets, which dropped from 100 to 95. They tested for C-diff (a bowel infection), which was negative. They did find blood in his stool, but the doctor said that's not unusual for someone at this stage of colon cancer. It didn't seem to concern him. </span></div>
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<span style="font-size: large;">Yesterday Phil was really depressed when his hair started falling out in patches. He had Becky shave his head. It was a real shock to us all, but it was one of the possible side effects of the new chemo drug they just started him on three weeks ago, irinotecan. </span></div>
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<span style="font-size: large;">Phil's cough is much better--still there, but better. He also took three walks around the hospital today with our daughter Liz. I am so lucky to have Liz and Becky--and so sad Liz has to go home to her own family tomorrow. They're true angels! They're the reason Phil is doing so well. </span><div>
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<span style="font-size: large;">Because the fever bump was slight, and the labs are good, they agreed to watch Phil another 24 hours on IV antibiotics. The on-call doctor at Huntsman said he could be transferred there if he chose to. He said it would be perfectly justifiable if that's what the family wants. But the family wants Phil to have what he wants. He made the choice to wait another day and decide tomorrow. At this point, it's just another part of the whole quality vs quantity decision. He feels more comfortable here. </span></div>
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<span style="font-size: large;">Thanks, everyone, for your support. It is strongly felt and much needed. </span></div>
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<span style="font-size: large;">p.s. After feeling the very sickest last night, today I am feeling much better. In our faith, The Church of Jesus Christ of Latter-day Saints, we believe in blessings given by priesthood authority. Last night Phil gave me a blessing--that means so much to me. Then my uncles gave Phil a touching blessing. I know that's why we're both making real progress--especially Phil. He has such strong faith!</span></div>
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Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com0tag:blogger.com,1999:blog-3763378244288836808.post-65574747619787201902015-04-25T11:44:00.000-07:002015-04-25T11:44:07.446-07:00Last night was frightening . . .<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Late last night Phil had to get another chest x-ray and now we know he has pneumonia. He also had to do the whole prep think (drinking contrast) so he could have a CT scan. His stomach became distended and they feared
a bowel obstruction. No obstruction—but he
has “ascites” (fluid accumulating in the peritoneum—the lining between the organs
and the abdomen wall). </span></div>
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<span style="font-family: Verdana, sans-serif;">The ascites could be
caused by poor liver function, due to all the tumors in his liver, or it could
be that the cancer has spread to his peritoneum. If it gets worse, he may need to have the fluid
drawn out through a needle into the area where it’s swelling. </span></div>
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<span style="font-family: Verdana, sans-serif;">He also spiked another fever of 100.8 around 1:00 a.m. Liz stayed till then, and Becky stayed all night. Becky was able to change her dad's IV from one arm to the other, and draw some blood for labs. Phil said she's so good at it that he didn't feel a thing! I might have said he's an EMT tech. Oops. She's an ER Tech and an Advanced EMT.</span></div>
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<span style="font-family: Verdana, sans-serif;">One good thing, today Phil's blood levels are
all improving. His neutrophil count is up to 700!!! That made us all happy. It means his immunities are building back up.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><b>Best case scenario</b>:
Phil will continue to have IV antibiotics for the next 24 hours. If he doesn’t have another fever, they will
switch to oral antibiotics and watch him for another 24 hours. If he goes both days without a fever, he can
go home.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><b>Worst case</b> <b>scenario</b>: If he has another fever above 100.4, he has
to be transferred to the hospital at Huntsman to work with an Infectious
Disease doctor, who can hopefully isolate the exact bug and attack it. </span><o:p></o:p></div>
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<span style="font-family: Verdana, sans-serif;">Thanks for your faith and prayers.</span></div>
Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com2tag:blogger.com,1999:blog-3763378244288836808.post-54471546071824426552015-04-24T09:21:00.001-07:002015-04-24T09:21:36.905-07:00Phil is still very sick<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Yesterday Phil's blood work showed
some improvement—the most important number rose from 100 to 330. We were so excited! But
today it dropped to 200. Since Phil can't go home until it's at least 500, that's a disappointment.<o:p></o:p></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Phil's temperature has stayed below 100 degrees for 24 hours, but
it's still around 99 degrees. <o:p></o:p></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Today they’re switching Phil from the IV antibiotic, to an oral
antibiotic to see how he does. We're praying that it works and he doesn't spike a fever. <o:p></o:p></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Phil’s illness has been respiratory. He has a bad cough
and congestion that just keeps hanging on. Today the horrible cough is
worse. The doctor said that’s a good sign. It shows his body is
trying to throw off the virus and he’s strong enough to cough. He has
breathing treatments with albuterol, but they're switching him to
another drug to see if it helps. <o:p></o:p></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Today I’m pretty sick and won’t be going to the hospital at
all. I'm sure I caught the bug that took Phil down. My voice is nothing but a croak and I don’t even want to get out of
bed. Our angel daughter Liz is coming from Heber City to take care of
us. Her husband Brandon suggested that she come alone, and he will watch their
four daughters. He’s a very busy man, so that’s a real sacrifice for them
both. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Our daughter Becky is an EMT tech at the hospital, but she worked graves Tuesday, Wednesday and Thursday, so she's catching up on much needed sleep. Plus she's a single mom of three so she sacrifices a lot, too, to help out. She sat with Phil most of Monday when this bug first hit me. When she's in the ER, it's a real comfort to
knowing she's at the hospital overnight, and close by if needed. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Our other four children have been incredibly supportive, too. They don't live nearby so we text all through the day to stay in touch. Phil and I are very blessed to have such wonderful children, extended family, and loyal friends. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">We're very grateful. </span></div>
Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com1tag:blogger.com,1999:blog-3763378244288836808.post-81626699202058042832015-04-23T13:00:00.000-07:002015-04-23T13:00:11.747-07:00Turning the corner . . .<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">WOOT WOOT!!! Phil appears to be turning a corner today. His fever
has been under 101 since yesterday afternoon—it’s been in the 98-99 range
since then. His blood work is improving, too. His platelet count today
is 79, compared to 59 yesterday (normal range is 88-368). His neutrophils
(the infection fighters) rose from 100 yesterday to 330 today. The benchmark to be released is no fever and a count of 500. Phil is incredibly fragile so we hope this trend
continues. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Thank you all for your prayers and support! </span></div>
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Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com0tag:blogger.com,1999:blog-3763378244288836808.post-90766030530441182472015-04-22T16:58:00.004-07:002015-04-22T17:32:05.506-07:00We're back . . . coming to you from Blue Mountain Hospital<span style="font-family: Arial, Helvetica, sans-serif;">It has been so long since I posted that I have to refresh my memory how to even do this. I made my last post just weeks before a very dear friend lost his battle with cancer. I think I just wanted to distance myself from that reality. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Today, sitting beside Phil in the hospital, there's no denying, no one is going to live forever, not even my resilient, optimistic, unflappable husband. Here's what's happening. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Saturday night around midnight I took Phil to the ER. His temp at home was 104. It was 102.7 at the ER. His White Blood Cell count (the infection fighters) was 300—normal is 3-5,000. He was admitted to the hospital in Blanding for 48 hours of continuous IV antibiotic. They said Phil would be released when his fever was normal and his White Blood Cell count had risen to 500.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">1) Since then Phil’s White Blood Cell count (granulocytes) dropped from 300 to 100. Right now visitors are discouraged. He's like the "boy in the bubble." His immune system has bottomed out.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">2) Phil’s Red Blood Cell count has also dropped very low. Last night he had to have a blood transfusion. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">3) Monday night Phil spiked a fever of 103.7. They tried a second antibiotic, but he still had a fever. Last night (Tuesday night) they added a third and a fourth antibiotic. Since then Phil’s temperature was normal until today at 2:00 p.m. when it rose to 100 degrees. They gave him Motrin and his temp was 100.6 thirty minutes later. It's encouraging that four hours later, it was still only 100.7, but it needs to go back to normal--that's how they know they're getting on top of the infection.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">4) Monday his blood pressure dropped to 87/44. They gave him more fluids and it gradually came up. His BP has remained pretty normal since then. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">All this is in addition to the "normal" (that's an oxymoron if there ever was one) side effects of chemo. On April 10 we found out the cancer has spread to Phil's lungs. So now in addition to the enormous tumor surrounding his colon, he has 11 tumors in his liver, a tumor on his rectum, and two lesions in his lungs. His chemo regimen was changed from 5-FU with Avastin and Oxaliplatin, to Avastin plus Irinatecan (or "I run to the can" as patients have dubbed it). Yes. Phil has suffered the classic side-effect: persistent diarrhea (the least of our worries right now). </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">These are the highlights (lowlights?). </span><span style="font-family: Arial, Helvetica, sans-serif;">They're watching Phil to see how he does on the new antibiotics. If his fever spikes, he'll be transferred to the hospital at Huntsman. If he's holding his own, they'll keep him here in Blue Mountain Hospital until his fever is gone and his granulocytes rise from 100 to at least 500. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">So no neatly tied package with a happy ending--hopefully I can write about a happy ending later. I'll keep you posted. Meanwhile, we appreciate your faith and prayers. Thank you, friends.</span></div>
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Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com4tag:blogger.com,1999:blog-3763378244288836808.post-21767156610376199502012-12-09T20:29:00.001-08:002012-12-09T20:35:18.751-08:00All I want for Christmas.<br />
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<span style="font-size: large;"><span style="font-family: Arial, sans-serif;">This January it will be two years since we learned that Phil had
cancer. What a milestone, when you consider the prognosis in March of 2011--six months
to a year. We're so blessed that Phil has responded well to chemo. It has bought us nearly two years. There's something about a terminal diagnosis that makes life so much
sweeter. Each day—even each minute—is a gift. Suddenly it's simple to
recognize what really matters. </span><o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif;"><span style="font-size: large;">I've
noticed so many changes in Phil—not just those you can see, like the suffering
that has etched itself on his face, or the weight he’s lost. It's what has changed inside. He's more
reflective, more thoughtful, more expressive, more appreciative. He’s never been excited about Christmas
decorations, but this year he can’t thank me enough for decking the halls. One night he said, "I know why you're doing this." And he's right. I want everything to be so special because we don't know how many more Christmases there will be . . .</span><o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-size: large;">Today we visited our friends Calvin and Verdonne Blake. I'm sure it's the last time we will see Calvin. He was so pale and weak. He took great effort to express how happy he was to see us. He labored to tell Phil, "I think you're the greatest broadcaster in this century. I love to hear you on the radio!" What a great friend.</span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">In 2009 Calvin was managing the Cal Black Memorial Airport at Lake Powell and feeling fantastic. Verdonne read about free cancer screening in the local newspaper and they were both tested because both had exposure to uranium. Verdonne worked in the office of the vanadium mill in Monticello where high grade uranium was processed, and Calvin was a "mucker" who hauled radium-bearing rock out of uranium mines in San Juan County. </span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Verdonne was OK, but not Calvin. They found themselves at Huntsman Cancer Institute where they learned that Calvin had a particularly vicious lung cancer that doubled in size every 90 days--without immediate treatment, Calvin would not live another six months. Nearly four years later, Calvin and Verdonne are grateful for that "extra time." </span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">It's so hard to watch our friends in these final days together. It's like looking into the future--our future. All I can say is, if Phil and I are so fortunate to have such love, and even one more year together, we will feel blessed, indeed!</span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">This will be Calvin and Verdonne's last Christmas, at least on this earth. It would seem sad if we didn't know that a babe was born in Bethlehem who would become the Savior of the world--a Savior who would give His life for us. Whose ultimate sacrifice and resurrection would make it possible for us to repent and live with Him again.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhudrDUXXJ6txhQGVHWJxPE9XnIw8aySzxglSCgNbeNTL0gjIfBYxWZ1dWGXucyKFYM-5kyYRUH3TRsw9OdqVs_fxoJqLvQ93Uxg3lbnX5os6I9Ee3Xv0a5dhJCl_bCcEyCNiFCVFUzHw4/s1600/Christmas+again+2012+003.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhudrDUXXJ6txhQGVHWJxPE9XnIw8aySzxglSCgNbeNTL0gjIfBYxWZ1dWGXucyKFYM-5kyYRUH3TRsw9OdqVs_fxoJqLvQ93Uxg3lbnX5os6I9Ee3Xv0a5dhJCl_bCcEyCNiFCVFUzHw4/s400/Christmas+again+2012+003.JPG" width="400" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">How grateful I am at this Christmas season for Christ and His gift of eternal life. For the opportunity to have an eternal marriage and know that families can be together forever. I am so thankful that we are members of The Church of Jesus Christ of Latter-day Saints. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">In our last General Conference, President Uchtdorf said, "Let us resolve to cherish those we love by spending meaningful time with them, doing things together, and cultivating treasured memories. . . . "</span></span><br />
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<span style="font-size: large;"><span style="font-family: Arial, Helvetica, sans-serif;">"To avoid some of the deepest regrets of our life . . . 1) Resolve to spend more time with those we love, 2) Resolve to strive more earnestly to become the person God wants us to be, and 3) Resolve to find happiness, regardless of our circumstances" (</span><span style="font-family: Arial, Helvetica, sans-serif;"><i>Ensign</i>, Nov. 2012, pp. 22 & 24).</span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I'm not waiting for January 1. These are my New Year's Resolutions and I'm starting now!</span></span>Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com2tag:blogger.com,1999:blog-3763378244288836808.post-39782393866532772102012-07-19T23:27:00.002-07:002012-07-20T00:48:10.285-07:00Life is good . . .The highlight of our summer has been Mark's marriage to Cassie! They're the cutest couple ever, and so much in love.
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWQwA9rfQtabG4Nsy3loXZN9G9FG7vAeA7pgsb-aKIVvcbkzdGAiF6bkVgSjZHc-sNRqyMtmeEG3T4MFUIg0eA7zGA67jMK1sZNEwm8jVqVxCBkmxs4i9a3ukmcof3x08zNFlbo6rtYk0/s1600/Mark%2527s+wedding+171.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWQwA9rfQtabG4Nsy3loXZN9G9FG7vAeA7pgsb-aKIVvcbkzdGAiF6bkVgSjZHc-sNRqyMtmeEG3T4MFUIg0eA7zGA67jMK1sZNEwm8jVqVxCBkmxs4i9a3ukmcof3x08zNFlbo6rtYk0/s400/Mark%2527s+wedding+171.JPG" width="400" /></a></div>
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What a wonderful time it was being together as a family! That's all that really matters—FAMILY!!!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjAFiEG6aTIybt07Yw0CLAqzEbGD173XH9UfEKlQgLbjqVAYigrh-JSrVP4EeoIU0hh3ckuSdNK_BSh_6jV_gGt5xPC0RCi63_fdMFk1SwsGRTlUhynf3a5CwK3brE1QUk8Iu9_1YZCaY/s1600/Mark%2527s+wedding+063.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjAFiEG6aTIybt07Yw0CLAqzEbGD173XH9UfEKlQgLbjqVAYigrh-JSrVP4EeoIU0hh3ckuSdNK_BSh_6jV_gGt5xPC0RCi63_fdMFk1SwsGRTlUhynf3a5CwK3brE1QUk8Iu9_1YZCaY/s640/Mark%2527s+wedding+063.JPG" width="640" /></a><span style="background-color: white;">Our children from left to right: Jeff, Liz, (me), John, Cassie and Mark, (Phil), Becky and Adam.</span></div>
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It's been a great summer and Phil is doing well. Today he learned that his carcinoembryonic antigen (CEA) count has dropped over the past months from 6.7 to 4.9 to 4.6. Carcinoembryonic antigens are tumor markers which, while not entirely reliable, tend to indicate what tumors are up to. In Phil’s case, the numbers seem to confirm results of his last CT scan on June 11—“no new growth.” And while it would be wonderful if the tumors could just shrink and disappear, no new growth is terrific news. Especially since his cancer was already inoperable when discovered and he's had no new growth of tumors in the colon or the liver since he started chemo in March of 2011!<br />
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Much of this success can be attributed to the excellent care Phil receives at Huntsman Cancer Institute, and particularly from his oncologist, Dr. John Weis. These two have become great friends and besides "friending" each other on Facebook, they enjoy swapping stories at Phil's monthly appointment. At our last visit on Monday, Dr. Weis opened his FB page and showed us his album of pictures from a recent trip to Europe. We saw the castle where he and his wife and son stayed, and learned that Dr. Weis’ father, a U.S. Intelligence officer, stayed in the same castle during World War II. His father played a significant role in preserving freedom and we see the same kind of courage as Dr. Weis fights the war against cancer.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipj3sU8zxJaSTyDouaCqJaz58FQEuHn9p1P3Y_pra1FYkwTYZVuuWQJ82APO6hoDzJFRpzjd4vHSdNvjSTtMUe4F25205wursXxJ2hqqdMFgQvfCtJFr_A7B5RePTUK7kzNHME9tSQGmk/s1600/Dr.+Weis+003.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipj3sU8zxJaSTyDouaCqJaz58FQEuHn9p1P3Y_pra1FYkwTYZVuuWQJ82APO6hoDzJFRpzjd4vHSdNvjSTtMUe4F25205wursXxJ2hqqdMFgQvfCtJFr_A7B5RePTUK7kzNHME9tSQGmk/s400/Dr.+Weis+003.JPG" width="400" /></a></div>
Phil and Dr. Weis at our last visit on Monday, July 16.<br />
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Among our many blessings are other incredible friends we've made at Huntsman Cancer Institute--like Dov Siporin (pronounced Dōv, with a long “o”). There is a definite camaraderie among cancer survivors but Phil's bond with Dov is exceptional. <span style="background-color: white;">We feel that meeting Dov was "bashert" (meant to be)! </span><span style="background-color: white;">Dov is always paying it forward and Phil is following his example. </span><br />
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Dov has fought every minute for nearly four years to survive colon cancer. He fights for his wife and their two young children, and also for everyone he can reach at Huntsman and beyond. Dov is such an inspiration!
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Moving from Stage 3 at diagnosis, to Stage 4, Dov has endured painful surgeries, countless radiation and endless chemo treatments. But despite all this, Dov never stops helping and lifting others with his endless antics and colorful personality! He usually shows up with a big bag of treats that he distributes liberally, and I wish you could hear his hilarious monologues. He can make the most drastic procedures and circumstances seem funny! There is no one who can lift your spirits like Dov.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEEErSWTFN857z9eBSMJZvmZS-EGO2LxVrd_3e6uFinEyN7FG0qShf9z-GqbRCe2fl3icO7HTViXLIaqxw8Elx_IYGN6OHnUzumiDEUrh7OAH1fISGacbPpwkJhEfbU068iDbVx8KbAvc/s1600/Dov+chemo+cupid.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEEErSWTFN857z9eBSMJZvmZS-EGO2LxVrd_3e6uFinEyN7FG0qShf9z-GqbRCe2fl3icO7HTViXLIaqxw8Elx_IYGN6OHnUzumiDEUrh7OAH1fISGacbPpwkJhEfbU068iDbVx8KbAvc/s320/Dov+chemo+cupid.png" width="248" /></a></div>
Dov on Valentine's Day as "Chemo Cupid!"<br />
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We met Dov at Phil’s first chemo treatment and he literally changed our lives. We walked into the chemo lab fearful, not knowing what the future would hold, and walked out with a renewed sense of hope and, yes, even adventure. Dov normalized for us, the most abnormal of all circumstances. Thanks to Dov, we no longer saw cancer as something that would take everything from us. Instead, we realized that a terminal diagnosis SHOULD and COULD be defied!<br />
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Here's another of Dov's countless stunts on his way to get a (you guessed it) PET scan!<br />
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<span style="font-family: Verdana, sans-serif;">Dov helped us discover that behind all the terribleness (and there’s plenty of that), there is a wonderful, magical quality to this journey. </span><br />
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<span style="background-color: white; font-family: Verdana, sans-serif;">Phil's cancer has brought us so much growth and understanding--we've never been closer or appreciated each other more, and we've never felt more dedicated to serving others. </span><br />
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<span style="background-color: white; font-family: Verdana, sans-serif;">Some might think we're overly optimistic or dwelling in denial, but it's actually the opposite--we're keenly aware of just how precious life is and we choose to experience it with joy, not fear! </span><br />
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<span style="background-color: white; font-family: Verdana, sans-serif;">Yes, Phil deals with the ugly side of illness--not being able to do the things he used to enjoy, like taking walks together, being able to taste and enjoy food, mowing the lawn, playing “dark house” with our grandkids, going for months without needing to see a doctor, staying up late (or even past 6:00 p.m.), and more. You never realize how much you appreciate the simple things in life till they’re no longer possible. </span><br />
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<span style="background-color: white; font-family: Verdana, sans-serif;">Through it all, however, Phil stays positive and optimistic. Not even relentless fatigue and feeling crumby all the time can bring him down. Nothing dampens his faith and optimism. Really . . . NOTHING! Like Dov, Phil is an inspiration!</span>Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com0tag:blogger.com,1999:blog-3763378244288836808.post-11713303921724071942012-04-11T13:36:00.003-07:002012-04-11T13:52:03.728-07:00No test results, as yet . . .First a disclaimer . . . no new post means nothing new is happening--and that's a good thing!<br />
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Phil saw his oncologist, Dr. Weis, at Huntsman on Monday, April 9. Phil's blood work was good, but we were disappointed that the results of genetic markers from last month's biopsies were not yet available. <br />
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Then Phil went to the infusion lab for his 25th chemo treatment. After a month's hiatus to try and gain weight, Phil was barely starting to taste food and enjoy eating again, so he didn't really add many pounds. But the break was rejuvenating, just the same, and helped bouy him up to begin again. Phil does the first five hours of chemo in the lab, and then the next two days by portable infusion. He wears a little pump in a fanny pack with a tube that extends between the pump and the port-a-cath implanted just beneath the skin near his left shoulder. It's quite innocuous looking, but a hassel for Phil, as he has to cover the whole apparatus to shower. It's always a terrific relief to get unhooked at Moab Regional Hospital. How can we ever thank Gayle and all the many people who serve, strengthen, and support Phil at MRH? You guys rock!<br />
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Days three and four of each chemo cycle are the hardest (that's today and tomorrow) and Phil will have very little strength and no appetite. Then he'll rest all weekend and I'll try to entice him to eat so he can build up strength for the coming week. Then chemo again . . .<br />
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But no matter what, Phil will power through. Each day will find him back at work, defying the odds, and nothing will knock his faith and his determination to fight back. Like I always say, "Phil may have cancer, but cancer doesn't have him!"Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com0tag:blogger.com,1999:blog-3763378244288836808.post-84431871876273599812012-03-25T22:11:00.023-07:002012-03-26T08:08:37.607-07:00Another miracle . . .You may recall that Dr. Weis took Phil off chemo for a month so he could gain weight. With Phil off chemo, the timing was perfect for a colonoscopy and biopsies of his tumor to culture for genetic markers. Markers indicate if his tumor will respond to certain drugs, or not. <br />
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On Tuesday, March 20, we finally had a date . . . TWO DAYS LATER! I packed quickly and we left for Salt Lake the next day, after Phil's morning talk show. Phil was on clear liquids and we made sure to be at our daughter Liz's in Heber City in time for him to take four Dulcolax tablets at 4:00 p.m., and a concoction of Miralax and Gatorade at 6:00 p.m. After that, Phil stayed close to the bathroom! <br />
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The next morning Phil took the last of the Miralax and Gatorade, as directed, then no more fluids for four hours till his 11:00 a.m. appointment at Huntsman Cancer Institute. Phil was placed in an exam room to change into a hospital gown so the procedure could get started, and I was told he would be in recovery in about 30-60 minutes. I rushed to University of Utah Hospital to see three patients while I waited for Phil: my nephew, Willie; my Cousin Tasha's husband, Dustin; and a friend and colleague, Nedra. I visited each one briefly, and I was excited that I also saw my son Adam and my sister Wendy in the hallway. They both work in different departments at the hospital. <br />
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After Phil’s colonoscopy (which lasted much longer than expected), Dr. Samadder explained his findings: <br />
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(1) No new tumors!!! (This is significant when you recall that Phil’s CT scan last month hinted of two possible new sites.) The normal adult scope wouldn’t pass beyond the tumor, but a pediatric scope allowed Dr. Samadder to observe the entire colon.<br />
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(2) The tumor is located in the middle of the transverse colon, instead of the hepatic flexure, like we were first told. Not a game-changer—just nice to know. <br />
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(3) The tumor is completely circling the inside of the colon where it's located, leaving an opening of only 11 millimeters (about one-half inch); the width of a normal colon is several centimeters. <br />
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(4) The danger of a complete blockage is imminent. Dr. Samadder recommended placing a stent to broaden the opening.<br />
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With Phil already prepped, Dr. Samadder was able to schedule the procedure for 12:30 p.m. the next day, and the stent would be placed by scope, similar to the colonoscopy. Of course Dr. Samadder was concerned about the length of time since Phil’s last dose of Avastin. . . . had it been long enough to reduce the risk of accidental perforation? <br />
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Throughout this journey with cancer, we’ve learned to weigh the risks and this time was no exception. Should we risk perforation or occlusion? Perforation is life-threatening, but so is a blockage, which is also exquisitely painful. And if it happened in Grand or San Juan County, Phil would definitely be flown out to be treated. Plus, as Dr. Samadder explained, a successful stent placement after a blockage is much more challenging. <br />
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All these considerations lent themselves to our decision and we decided to go forward with the stent. Phil was put back on clear liquids, with another delightful elixir of Miralax and Gatorade that evening, and fasting after midnight. For the guy who was supposed to gain weight all month, Phil had not been able to eat anything solid since Tuesday. <br />
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But Phil never complains. He always looks at the bright side . . . and I mean, always! He believes in success. Failure is not in his lexicon, and that’s why he’s still here. Phil has the strongest faith of anyone I know. He places his trust completely in the Lord, where he derives his strength. <br />
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So it didn't phase Phil in the slightest when Dr. Samadder called late Thursday to postpone the stent for two weeks. That had all kinds of frightening implications, but Phil was still optimistic. Dr. Weis, Phil's oncologist, felt the risk of perforation was too great. After more back and forth exchanges between Dr. Weis' office and Dr. Samadder the next morning, we got a call from Judy, Dr. Weis' nurse, informing us that everyone now agreed that the stent placement should go forward and at 12:30 p.m., we reported to University of Utah Hospital. Here's Phil at check-in.<br />
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The team in the endoscopy lab was upbeat and supportive, and Phil was totally calm and positive. I was allowed to go to the surgery room with Phil and stay while they hooked him to multiple monitors and inserted his IV. Michelle, Phil’s surgery nurse, turned out to be related to some good friends who used to live in Blanding, and she was so fun. <br />
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I know that sounds like an oxymoron . . . fun in surgery? <br />
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Being in the radio business, Phil is used to being "wired." Here you can see him all hooked up with his IV plugged into the port-a-catheter in his chest. The yellow spot under the tape is called a butterfly needle. You can't see it but it has little yellow wings that are pinched while the nurse inserts the slightly curved and hooked needle that resembles a hummingbird's beak.<br />
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Michelle demonstrates an esophageal stent, just to give us an idea (although this one is much larger than a colon stent). The wire mesh is titanium and if all goes well, it will gradually expand to about 2.5 centimeters and significantly increase the passageway through Phil's tumor.<br />
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Ricardo came in to assist and he was fun, too! As it turns out, Dr. Samadder was also pretty jovial and he told us about multiple guest appearances on radio and television talk shows this month--National Colon Cancer Awareness Month. Before going under light sedation, Phil (always the consummate broadcaster) made arrangements to interview Dr. Samadder on his morning talk show this week.<br />
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<b>P L E A S E <i></i></b><b>. . . FOLLOW THE RECOMMENDED GUIDELINES AND GET A COLONOSCOPY!</b> <b>You don't have to experience what Phil's going through!!! Colorectal cancer is slow growing and 90% curable if it's caught early. </b> <b>You should have a colonoscopy when you turn 50, and then every ten years after that. If you have any pre-cancerous polyps removed, the current recommendation is to follow-up every three to five years. If there's a history of colorectal cancer in your family, your first scope should be before the age of 50. Talk to your doctor, and then don't get too busy to follow his advice--like Phil! </b><br />
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When I left surgery, everyone was in a pretty festive mood, including the patient! <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpq-CYGpY3Oh0ap5NkODgzQ2f8gQmC5in-VN6WFoYQVG6F3y0h-KpisF71zNL0NO3JVnvQK3sXuSkjeMacsGFch2lLbu200L70AmP1JRIkpTuckDRxO4HZ0sGfPC71rShoO5J9iSRjGG8/s1600/colonoscopy+3.12+029.JPG" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpq-CYGpY3Oh0ap5NkODgzQ2f8gQmC5in-VN6WFoYQVG6F3y0h-KpisF71zNL0NO3JVnvQK3sXuSkjeMacsGFch2lLbu200L70AmP1JRIkpTuckDRxO4HZ0sGfPC71rShoO5J9iSRjGG8/s400/colonoscopy+3.12+029.JPG" /></a></div><br />
Ricardo, Michelle, and Dr. Samadder (wearing another doctor's apron). Ricardo and Dr. Samadder have their fingers in the esophageal stent, which acts like one of those finger puzzles--when you pull, it only tightens and you can't get your fingers out.<br />
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After waiting and waiting and waiting, the news out of surgery was great. Despite swelling from the previous day’s procedure, which necessitated a whole lot of incremental dilating, the stent was placed and Dr. Samadder felt it was a good placement. Phil was pretty miserable in recovery, but within the hour we left the hospital behind us and were on our way, and he has (according to his own account) felt good ever since. But what else would you expect. It's Phil! <br />
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Phil was told to stay on a clear liquid diet for another 24 hours! Imagine that, Phil went four whole days without eating anything solid. He has to be careful for a few days--no corn, celery, etc. (in other words, foods that don’t break down in digestion), while the stent continues to expand. <br />
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We feel that we have been the recipients of multiple miracles over the past week!!! And we're very grateful . . .Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com0tag:blogger.com,1999:blog-3763378244288836808.post-74614561153062004802012-03-11T21:54:00.009-07:002012-03-11T23:02:51.274-07:00Time-out from chemo . . .Some of you will be anxious to know the results of Phil's CT scan on Friday, March 9, 2012. Unlike his last three scans, this time there are changes, namely: <br />
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1. Segments of the existing tumor in the transverse colon appear to be more confluent (running together). <br />
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2. What appears to be narrowing of the descending colon in two places could be two new tumors, or normal movements of the bowel (peristalsis). <br />
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3. Liver tumors are unchanged.<br />
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4. There is some increase in the size of lymph nodes near the liver.<br />
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Dr. Weis is concerned about Phil's consistent weight loss, which could be caused by cancer spreading or by the side effects of chemo. Since research indicates that a brief "time-out" from chemo will not negatively impact chemo's effectiveness in the long run, Dr. Weis took Phil off chemo for one month. Now Phil's job is to try and gain weight--not an easy task since, according to Phil, "Everything tastes like cardboard." Hopefully, further out from chemo food will begin to taste like food again.<br />
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Also, since cancer cells eventually adapt to chemo and become resistant (similar to viruses adapting to antibiotics), Phil will have a colonoscopy to biopsy the tumor in his colon. Biopsy samples will be cultured for genetic markers to determine whether Phil's tumors will respond to other chemo regimens--so we'll have a back-up plan. This time-out is the perfect opportunity, since Phil has to be off Avastin for 3-4 weeks before being biopsied. (Avastin significantly increases the risk of fatal bleeding.) <br />
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Hopefully after one month there will no longer be a shortage of Leukovorin. Leukovorin and several other cancer drugs are going generic, which means huge cost savings for consumers (if the drugs can be found), but little incentive for drug companies to produce them. Phil received Leukovorin at his last infusion on February 28, but right now, both Moab Regional Hospital and Huntsman Cancer Institute are out of this drug. <br />
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If you're friends with Phil on Facebook you know that he always has a plan of <b>ATTACK!!!</b> and this is no exception. Phil is still the eternal optimist--a true man of faith--and he's still determined to "beat this!" We know that we have your faith and prayers and best wishes. We want you to know that we feel your support, and that means more than we can express.Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com0tag:blogger.com,1999:blog-3763378244288836808.post-43341990149480966212012-02-14T22:10:00.000-08:002012-02-14T22:10:27.416-08:00Happy Valentine's!One year ago today, my sweetheart and I sat in the foyer of the University of Utah Med Center waiting for Phil's colonoscopy. That wasn't the beginning, but that was the definitive moment in a long series of doctor's visits and diagnostic tests. That was the pivotal event that changed our lives forever. <br />
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Two weeks later, we sat in the office of Dr. John Weis at the Huntsman Cancer Center waiting for news that we already anticipated would not be good. Phil had endured a CT scan, PET scan, liver ultrasound with biopsies, multiple blood tests, and the colonoscopy—and now we waited for results.<br />
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Phil liked Dr. Weis the moment he walked in the office. Dr. Weis was extremely friendly and upbeat, despite his pronouncement: “You have Stage IV Colon Cancer." His candor and confidence gave us a sense of optimism and hope.<br />
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"What does that mean?" Phil asked.<br />
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"What do you know about Stage IV Colon Cancer?" Dr. Weis countered. It was no mystery to us that the doctors suspected colon cancer. I had researched colorectal cancer extensively and I knew exactly what that meant. <br />
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"Stage IV means Phil has a primary tumor in his colon and the cancer has metastasized to one or more organs outside the colon,” I said, mechanically.<br />
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"Yes," replied Dr. Weis, turning to Phil. "You have a tumor blocking two-thirds of your colon at the hepatic flexure, and several tumors in your liver."<br />
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"What does that mean?" Phil asked.<br />
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"What do you know?" Dr. Weis responded. <br />
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Again, I replied, "It means the cancer cannot be cured."<br />
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"That's right," said Dr. Weis. This was a novel way of delivering bad news, I thought, asking us what we knew. Lucky for him, I was well informed. I suspected Dr. Weis was relieved that he didn't have to say the words that Phil and I had hoped we would never have to hear.<br />
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"What can we expect? How much time?" I asked, perfunctorily, as if the question was coming from somewhere or someone else. No matter how well prepared you feel you are, news like this leaves one feeling shocked, disoriented, and strangely detached, like stepping out of time, losing touch with reality and all sense of reason. <br />
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Again, Dr. Weis addressed his response to Phil. "You have six to 12 months, if we do nothing. If you have chemo, I think I can keep you alive for two to three years."<br />
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Phil's response was spontaneous. "I'M GOING TO BEAT THIS! I am a planner and a dreamer and I have a lot to accomplish. I'm not giving in. I want you to know that when I decide to do something, I GET IT DONE!"<br />
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Dr. Weis' response was immediate and forceful. "Good, we'll start chemo right away. I have at least three regimens we can use, and when one stops working, we'll try another."<br />
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Phil was referred to Dr. Skaif, a petite and demure surgeon with a very direct bedside manner which we very much appreciated. She described Phil's tumor as infiltrating outside the colon, therefore, inoperable. She also defined eight tumors, about the size of walnuts, in Phil's liver and she suggested the possibility of surgery. However, a subsequent PET scan determined that Phil had a congenital defect--the left lobe of his liver never developed--so surgery was not an option. There wasn't enough liver to regenerate. In an outpatient surgery, Dr. Skaif implanted a port under Phil's skin on his shoulder which provided direct access to a major vein entering his heart. Chemo would be delivered by accessing the port, saving his veins from collapse.<br />
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On March 14 Phil started chemo treatments every other week—Modified Folfox 6 with Avastin (plus six rounds of Oxaliplatin). Dr. Weis described Phil's cancer as a "chronic condition" that would require treatment for the rest of his life. And we are thankful that the chemo has been successful in shrinking the primary tumor and arresting any growth or spread over the past year. <br />
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Today Phil had his 24th round of chemo. And in today's news was a report of fake Avastin being distributed in the US; I only hope no bad drugs came to Utah. Avastin is one of the drugs listed in short supply so we feel blessed every time Phil is able to get Avastin. It has been instrumental in extending his life and we are grateful.<br />
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Anyway . . . as I reflect on this Valentine's Day . . . I realize that over the course of Phil's cancer, we have been strangely comforted. Maybe not so "strangely," when you consider that we believe in God and in his son Jesus Christ and we place our faith in them. We believe that prayers are answered, and when we don't get the answers we want, we trust that the Lord knows what's best for us and we accept His will.<br />
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For now . . . we're very thankful that we've had one more Valentine's Day filled with infinite love for one another. "Infinite" . . . what a comforting word. As members of The Church of Jesus Christ of Latter-day Saints, Phil and I know that because we are sealed to one another in the Lord's holy temple, if we keep the Lord's commandments and strive with all our hearts to do what's right, we will be together with our loved ones for eternity. And in the end—whenever that may be—that's all that really matters. Besides, it’s not really the end . . .<br />
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Happy Valentine's Day everyone!Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com3tag:blogger.com,1999:blog-3763378244288836808.post-63112353467465365322011-12-21T16:31:00.000-08:002011-12-21T19:02:36.317-08:00Another great scan!That pretty much sums it up. We were worried because Phil had developed intense pain in his back and was having great difficulty walking. Our wonderful friend, Dave Kasteler, who passed away four weeks ago, suffered immensely after his colon tumor infiltrated his spine. That was our fear for Phil. Gratefully, Phil's CT scan showed "no new growth!" It was a huge relief to learn that Phil's back pain wasn't a result of the cancer spreading. In fact, one tumor in his liver actually shrank a millimeter or so. <br />
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Phil at Huntsman waiting for chemo.<br />
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We never thought we'd be grateful to find out Phil's back problems flared up again, but this time we were. The pain resulted from his degenerative arthritis and scoliosis, which was diagnosed about two years ago. In fact, at that time Phil was told his spine looked like a grenade went off in it. Luckily he was able to see his specialist in Provo the day after chemo. I couldn't go because of my eye surgery, so they changed from general anesthetic and administered Phil's cortisone shots under local anesthetic so he could drive afterwards. Phil hasn't had complete relief, like last time, but he has improved so he can walk with less discomfort, and he has a follow-up appointment in one month if he needs it.<br />
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Another wonderful highlight for Phil this month was being named Moab Citizen of the Year at their Tree Lighting Ceremony on December 2. This was a great honor which touched Phil deeply. As Citizen of the Year, he also served as Grand Marshall for Moab's Electric Light Parade the next night. <br />
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This is a shot of Phil being named Citizen of the Year, with Santa (Phil's great friend, Dan Mick) on hand to help bestow the honors!<br />
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Liz, Katelyn, Anna and Ellie came to Moab to help celebrate. Later, Adam and Heather, and Brian and Becky and Josh, Keira and Kami joined us. Another of Phil's great friends, Shon Walter, arranged for us to stay at one of his condos for the weekend. If you need a place to stay in Moab that feels like a home away from home, you want to stay in one of Shon and Rosanna's beautiful cozy condos! <a href="http://moabcondos4rent.com"></a> For a peek, go to: moabcondos4rent.com<br />
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Hard to see, but this is the Hummer that Phil rode in to lead the parade. He's sitting beside his friend Beth who manages Zion's Bank, the Business of the Year. I'm inside the Hummer with our granddaughter Ellie, while four (of our 25) grandkids followed behind on their scooters all lit up! <br />
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L to R: Keira, Josh, Katelyn and Anna <br />
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It was an amazing evening and Phil is so deserving of the accolades he received!<br />
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I mentioned my eye surgery. On December 8, I was operated on to remove an epiretinal membrane which formed as a result of multiple eye injuries last year. Between July and October of 2010 I had two retinal detachments, three vitreous hemorrhages, and four surgeries which resulted in a lot of debris (dead cells, etc.) in my eye. The debris attached itself to the center of my eye and proliferated, creating scar tissue which puckered and distorted my central vision. This puckering was worsening over time so my retinal specialist, Dr. Paul S. Bernstein, at Moran Eye Center, removed the epiretinal membrane (ERM) and the inner limiting membrane (ILM) to smooth out the retina. It will take up to six months before we know how much of my vision will return, but at my one week checkup Dr. Bernstein said he was "very pleased." I have to avoid any strain on my eye for "several weeks." I'll be two weeks post-op tomorrow and each day has seen (little pun) slight improvement in the pain, swelling, dilation, dryness, and inflammation. Today is the first day I haven't felt like I had gravel in my eye--for which I'm very thankful. <br />
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Here we are, waiting for my eye surgery at Moran Eye Center. (I considered loading an after-surgery picture, but decided to spare you the gory details.) <br />
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In the midst of all this, my 84 year old mother had to be rushed to Salt Lake for an emergency gall bladder operation. Over a period of one week, Mother was recovering in University of Utah Hospital; Phil was being scanned, examined, and infused at Huntsman Cancer Institute; I was having eye surgery at Moran Eye Center; and our grandson Dillon was having a follow-up visit for a recent stay at Primary Children's Hospital. Seems like we keep that med center pretty busy! <br />
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During my surgery my sisters took our mother on a tour by wheelchair. She visited our son Adam's office (he is a Clinical Research Compliance Officer) and my sister Wendy's office (she is a Financial Aid Officer)--they both work in the hospital complex--and then across the sky bridge from the hospital to Moran Eye Center where our daughter Liz and granddaughter Ellie were waiting with Phil. Everyone was nearby when the doctor came out to announce that my surgery was a success. Evidently I missed a party!<br />
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Here I am visiting Mother at University of Utah Hospital the night before my eye surgery. Sadly, my 90 year old dad has taken a couple of falls lately, and that's a real concern. Mother's surgery was the 6th, she was released from the hospital on the 8th, and Wendy and John brought her back to Blanding on Friday, the 9th, because she was so worried about Dad. Mark brought me home three days ago, on the 18th, and I'm glad to be home. But I'm not gonna lie, between what's happening with Phil and Mom and Dad and me, I'm feeling pretty overwhelmed. <br />
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But we are grateful for a multiplicity of blessings, namely (1) that Mom appears to be recovering nicely, (2) that Phil's cancer is not spreading--and that he has had some relief for his back pain, (3) that my eye is improving, (4) that Dillon is OK, (5) that Mark is home for the holidays (and just in time to do all the heavy lifting for us and for his grandparents), (6) that we have wonderful children and grandchildren, (7) and wonderful friends like you! We thank our Heavenly Father daily for these tender mercies and tiny miracles!<br />
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MERRY CHRISTMAS, EVERYONE!Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com1tag:blogger.com,1999:blog-3763378244288836808.post-78988902914030415522011-11-23T11:23:00.000-08:002011-11-23T16:08:26.612-08:00It's been a long time!I can't believe it's been so long since my last post. I apologize to all of you who keep checking for news and then have to call, message, e-mail, text, FB, or stop me on the street for updates. Generally, it's safe to assume that "NO NEWS IS GOOD NEWS." I seem to write for therapy, so if I'm not writing, that's a good thing! <br />
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Where to begin . . .<br />
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On September 12 Phil had a CT scan which showed NO NEW GROWTH! We were elated to learn that the cancer was not growing and had not spread. It was phenomenal news, really, when you consider his original prognosis of 6 months to a year. Phil is still getting chemo every other week and his next CT scan is December 10. We'll get results on the 12th when he sees his oncologist (and I'll try to post the results more quickly this time). Meanwhile, we're trusting in the Lord and praying for this great blessing to continue.<br />
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Chemo leaves Phil very tired all the time, more so the first week, and he fought (and defeated) a bad cold over the past 2-3 weeks. But despite all that, he never misses his 2:00 a.m. wake-up call--when that alarm goes off, he's up and on his way to Moab! <br />
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Tomorrow is Thanksgiving and the entire Moab community is invited to dinner at the Grand Center--so we'll dine there amongst Phil's amazing friends. What are we most thankful for? This Thanksgiving we're thankful that despite our challenges, life goes on! <br />
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In September we took an amazing trip to Albuquerque, NM and came back by way of Winslow, AZ. I attended a professional conference in Albuquerque so we were there all week. I presented at two sessions: one session on my 4-H afterschool program and the other on how to get published in the national journal that I edit (<i>Journal of National Extension Association of Family and Consumer Sciences</i>). While I was working, Phil luxuriated in our gorgeous hotel room. <br />
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We had the best view and it was the week of the Albuquerque Balloon Festival. Almost every day we saw balloons float by, not that far from our wall-to-wall, floor-to-ceiling windows. We really enjoyed every minute we spent there!<br />
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One of our favorite spots on earth is Winslow, Arizona! As train enthusiasts, we love to stay at <a href="http://www.laposada.org/">La Posada</a>--an old train hotel which has been completely restored in period style. We checked in, dined on amazing southwest cuisine at the Turqoise Room, and sat in rocking chairs by the tracks and watched trains till well after dark. We had a room overlooking the railroad tracks and the next morning we realized we could actually see the trains while sitting in bed! Sadly, we could only stay one night this time.<br />
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Before we left, we had to have our picture taken on the corner made famous by the Eagles! <br />
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We wandered through a car show that happened to be in town and Phil found a friend he had made at the hotel. I'm always amazed that Phil finds friends wherever he goes. This fellow seemed to be in a rush when Phil first spoke to him, but before long, he was totally engaged in conversation and when we saw him the next day, he was anxious to pick up where they left off the night before!<br />
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Finally on the road, I convinced Phil to take a "shortcut" across the Navajo Reservation. I told him I had traveled that way before, with our aunt, Lucille Hunt, who is Navajo, and I was sure I could retrace our route. When we drove for some time and ended up on a dirt road, I reluctantly confessed that I hadn't recognized any landmarks for quite some time, but still thought it was a good route!<br />
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A Navajo lady drove past us as Phil hung out the window waving his arms ("Crazy bilagaana!"), then backed up her pickup and kindly guided us back to a main road. She said the road we were on turned into a mud bog and we surely would have gotten stuck. I told her she was an angel of mercy, and she was! Of course, Phil was his usual good-natured self. He so easily could have said, "I told you so." Instead, we both appreciated that we had seen new country and had quite the adventure!<br />
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There . . . doesn't that feel great to hear good news for a change?<br />
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Sending love to all our readers!Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com1tag:blogger.com,1999:blog-3763378244288836808.post-51646521027057417012011-08-21T23:00:00.000-07:002011-08-22T11:02:47.155-07:00Full disclosure . . .When Phil was first diagnosed with stage 4 colon cancer, I felt like a robot going through the motions. I woke up each morning hoping it was all a bad dream. I dressed, went to work, came home, fixed dinner for Phil, went to bed. Nothing felt real. I had no brain; I couldn't reason; I was prone to frequent meltdowns; I lost patience with platitudes. I cleaned frenetically, keeping myself too busy to think, and when everything in the house was spotless, I painted three rooms in one week. Then I moved outside and viciously hacked weeds with unparalleled vengeance till the rusty red earth was smooth and unmarred. It felt like fighting back. "Take that, you wicked cancer!"<br />
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A good friend said, "Eventually you'll find a groove and be able to function again." Thanks, Michele. I think I’ve found that groove. Our "new normal" is not what I would ever have asked for, but it seems to be working, for now, and I'm thankful for that. <br />
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Although our lives revolve around chemo, cancer does not define who we are. Life goes on and life is good. Our son Adam is getting married September 3. Our grandson Josh will have his 8th birthday this Friday and be baptized soon. My job is a comfort, although I’m on a much less demanding schedule, and I’m looking forward to giving a presentation at a national conference in September. <br />
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Phil continues to get chemo every two weeks, but somehow, he's working harder than ever despite his continually diminishing strength and appetite. Chemo may zap his energy, but it can't touch his optimism and positive outlook! <br />
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There was a little bump last month. Gayle, his infusion nurse in Moab, discovered that Phil's potassium levels had tanked so he got two hours of potassium before they could begin his five-hour chemo infusion. That was a rough week for Phil and he ended up staying at Shon’s two nights, instead of one. I don’t go with Phil when he’s in Moab so it’s a great comfort knowing Shon and Rossana are watching out for him. Thanks, guys!!!<br />
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Once a month Phil sees Dr. Weis at Huntsman and sometimes we can travel home so Phil can have chemo in Moab the next day. That way we miss less work. Last Monday Phil had chemo at Huntsman and was too sick to travel till Wednesday. But the enforced rest was good and seems to have helped his strength return much faster. This weekend has been like a second week after chemo, instead of a first week. I’m encouraging Phil to experiment with this concept of "resting more" to see if it works next time. (Wish me luck with that!)<br />
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August 12 was the American Cancer Society's Relay for Life, held on the high school football field in Moab, and Phil was heavily involved. He and Shon set up a broadcast booth and provided live, continuous coverage throughout the night. Our daughter Liz and her 5 year old daughter Anna came from Park City to support their Dad/Grandpa and that was a great joy! I set up a tent and an air mattress near the broadcast booth so Phil could rest. He seemed determined to pull an all-nighter, but sometime after midnight he crashed. Phil usually drops into bed between 6 and 8:00 p.m., depending on how late he gets home from work, so midnight was quite an accomplishment. Around 3:00 a.m. the air mattress was pretty deflated and Phil was freezing under two thin blankets. Temps in the day averaged 100+, but fell into the 60s at night, and since Phil has very little tolerance for cold (thanks to chemo), he pulled out and went to the radio station where he could warm up and catch a few zzzzzzs in his recliner. However, he was back at the Relay broadcasting live again at 5:00 a.m. What a fighter!<br />
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Of course, Relay for Life is about forming teams, raising funds, and keeping at least one team member walking around the track all night. The event always swings off with a Survivor’s Lap. As all the survivors gathered on the track, a torch was passed from survivor to survivor. Without his knowing, Phil had been selected for the great honor of leading the Survivor’s Lap carrying the torch. This came as a complete surprise. Phil fought tears that could not be restrained--he was so astonished, humbled, and grateful to be recognized and honored by his peers. As broadcast co-anchor, Shon made the announcement and spoke of Phil’s current battle with cancer, his indomitable spirit, and his many friends in the community who look up to him and are lifted and inspired by his courage. (If I can figure out how to load video and post pictures, you'll be able to share this exciting experience. I'll work on it.)<br />
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What’s next? We look forward to September 12 when Phil will have a CT scan so we can find out if the chemo is still working. We'll keep you posted. Meanwhile, thanks to all of you for your faith and prayers. We couldn't do this without you!<br />
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Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com1tag:blogger.com,1999:blog-3763378244288836808.post-1286776969299883692011-07-08T20:52:00.000-07:002011-07-08T20:52:41.829-07:00High 5 to our friend, Dov SiporinGo to this site to view a brief news story about our amazing friend, Dov Siporin. Dov has battled stage 4 colon cancer for nearly 4 years while selflessly lifting and inspiring hundreds, despite his own suffering!<br />
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http://www.ksl.com/?nid=148&sid=16279383<br />
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This recognition is truly well-deserved!Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com0tag:blogger.com,1999:blog-3763378244288836808.post-2723969337774118862011-06-26T15:14:00.000-07:002011-06-26T17:49:05.509-07:00Finally . . . good news!<b></b>Here's what has happened since my last post:<br />
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<b>May 23</b><b>:</b> We were anxious for Phil to have his sixth chemo treatment so he could get a PET scan and we would know if the tumors were shrinking, staying the same, or growing unchecked. But Phil's absolute neutrophil count (ANC) was way down, so chemo and the PET scan would have to wait. His body needed time to rebuild from the damage caused because chemo kills good and bad cells alike. <br />
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With Phil's immunities dangerously low, he fell prey to a series of troubling infections which became a major challenge. <br />
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<b>May 19</b><b>:</b> Phil came home from work feeling ill. That evening he spiked a fever that resulted in a trip to the ER. After a series of inconclusive tests, Phil was treated with a broad-spectrum oral antibiotic and he responded well. <br />
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<b>May 23</b><b>:</b> Phil developed a number of cold sores on his lower lip and chin which a provider at the clinic described as "typical of AIDS patients." Suppressed immunities result in every infection being worse than average. This time Phil's virus was treated with a topical ointment.<br />
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<b>May 27</b><b>:</b> Phil complained of pain in his elbow, which had become red, hot, and swollen. Another trip to the ER resulted in 7 IV antibiotic treatments every 12 hours over the next 4 days. We were so grateful to Becky in the ER, and Liz and Mark who came for the weekend--they really kept Phil laughing and I'm sure their visits were as healing as the drugs, if not more so. Special thanks to our awesome sons-in-law, Brian Kirby and Brandon Weilenmann, for taking charge of the kids while their wives cheered their Dad and me. What great children we have!<br />
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<b>May 30</b><b>:</b> Blood work showed Phil's immunities had improved significantly. But his oncologist wisely decided Phil needed more time to recover from so many infections. <br />
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<b>June 7</b><b>:</b> With Phil's ANC nearly normal, he finally received his sixth treatment at Moab Regional Hospital. That was a rough chemo week, but the second week was better and we were able to enjoy our Cook Family Reunion on Father's Day weekend. This was a celebration for my dad's 90th birthday and my mom's 84th birthday--Happy Birthday, Mom and Dad! <br />
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<b>And Happy Birthday, Phil, this Friday, July 1!</b> <br />
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At the reunion, Phil enjoyed a great nap on our super-plush, queen-sized air mattress with all our tent windows rolled open. Later we had a great dinner and program, but when the sun went down, it got downright chilly! One of Phil's chemo drugs makes him extremely sensitive to cold, especially his mucous membranes which swell and make it difficult for him to breathe. So around 10:30 we abandoned our tent and went home to sleep, but we were back bright and early so Phil could mix up pancakes for everyone, which my brother Terry flipped on the griddle! Being the oldest of eight, and the "designated reunion planner," I stressed big-time because between Phil's treatments and my job, I didn't have the time nor focus to do it right, but everything went off without a hitch. We had a great weekend and Phil even felt good enough to help clean up.<br />
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<strong>HERE’S THE GOOD NEWS!</strong><br />
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<b>June 13 (Lucky 13): </b>With six treatments behind us, Phil finally got a PET scan and the results showed: "No other new lesions are identified." . . . "The previously seen enhancing mass lesion involving the transverse colon has significantly decreased in size.” Bottom line--all 9 tumors have shown a “favorable response to treatment." SO REALLY GOOD NEWS!<br />
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Because cancer cells eventually adapt to chemo drugs and stop responding, one of the drugs (oxaliplatin) was withdrawn for now. This drug packs an initial punch, so dropping it early makes it possible to trick the cancer cells and bring it back later for another powerful punch (we hope). This is the drug that causes irreversible, peripheral nerve damage (numbness and tingling in extremities), and has made Phil's feet feel like “wooden blocks.” Also, since the drug will take some time to clear his system, the full extent of damage is not yet known. <br />
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<b>June 21:</b> Phil received his seventh chemo infusion, which was shortened by 1.5 hours without the oxaliplatin drip, and he has experienced less nausea. However, the fatigue factor seems to be ramping up with each new treatment. But Phil never complains--no matter what the side effects, he just smiles and says, “It goes with the territory!” He leaves for work at 2:00 a.m., no matter how sick or how tired he feels. Phil says work takes his mind off cancer, so I’m trying to quit encouraging him to “take it easy.” :~)<br />
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As members of The Church of Jesus Christ of Latter-day Saints, we're thankful for our faith in God and the Plan of Salvation which makes it possible for families to be together forever. Life does not end when we leave this earth. Families sealed together in His holy temples, who live up to the covenants made therein, will be together forever. This we know! These truths are a great comfort to us. We are His children and He loves us, every one. We are not alone in our trials. His Spirit comforts and guides us if we prayerfully place our trust in Him.<br />
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Proverbs 3: 5-6 "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths."Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com1tag:blogger.com,1999:blog-3763378244288836808.post-86758172691778462072011-05-15T21:46:00.000-07:002011-05-15T23:56:36.454-07:00Best of time and worst of times<strong>The best of times</strong>: staying with Liz and girls in Park City for Phil's most recent chemo at Huntsman (cycle 5), and having Adam and his daughter Haileigh, and Mark come visit us there. <br /><br />Then at Huntsman, meeting amazing people: Louise and her daughter, Karen and her husband, Val and his daughter Jenny, Bonnie and Gary from Monticello, Lynn and her daughter Angie, Dov and his wife Tara, and his mom, Ona. When you spend 7 hours in the infusion lab, you meet some really amazing people! <br /><br />Monday's infusion wasn't too bad. Tuesday, on the portable pump, Phil actually drove to Salt Lake to have lunch with John. Wednesday we left for home early enough so we could arrive at Moab Regional Hospital so Phil could get disconnected from his portable pump by 2:00 p.m.<br /><br /><strong>The worst of times</strong>: But before we could leave Moab, Phil got sick and things went down hill from there. Sick or not, Phil woke up at 2:00 a.m. and went to work, calling later that morning to say he couldn't keep anything down. He wouldn't come home, though, because he had a live-remote broadcast from 3:30 to 5:30 p.m. that afternoon. After a nap at Shon's, Phil got the job done. Friday wasn't much better. Phil worked long hours, all the time consuming nothing more than a couple of cans of Ensure. <br /><br />For at least two days I was pretty distraught (interpretation: beside myself with worry). Then Adam drove down on Saturday and his visit made a huge difference to his Dad and me. Even though he was here less than 24 hours, it was a great comfort! Adam and Becky came to Sacrament meeting with us, then Adam drove the 300+ miles back home. <br /><br />Phil lost 5 pounds last week; he still has very little energy and is exhausted all the time. But today was a beautiful day and he felt much better. YEAH!<br /><br />By the way, for those of you who may not know--our family is our life! We are so grateful for the love and concern of our children: John, Jeff, Adam, Mark, Liz, & Becky. Our sons-& daughters-in-law: Alison, Brandon, Brian & Dave (even though we lost our daughter Stacey 9 years ago, we still claim Dave!). And our 23 grandchildren: Connor, Xander, Tristan, Zoe, Haileigh, Katelyn, Anna, Ellie, Josh, Keira, Kami, Ethan, Nathan, Emma, Emily, Dillon, Mary, Brandon, Jacob, Jared, Kylie, Brianne and Angie. All our children are now living in Utah except for Jeff, who lives in New Hampshire. But Jeff will visit this summer, to train and participate in the Wasatch 100. We're excited to get everyone together then. <br /><br /><strong>WE'RE VERY GRATEFUL FOR OUR FOREVER FAMILY!</strong>Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com0tag:blogger.com,1999:blog-3763378244288836808.post-10685319653749740962011-04-29T17:34:00.000-07:002011-04-29T21:16:32.066-07:00Getting chemo in MoabPhil is the most optimistic person I know. Even cancer can't discourage him. But day 3 or 4 of each chemo treatment always gets him down. Phil described it as the "cumulative effect of the chemo kicking in." He just doesn't feel right and that sends him into depression--so today's been a tough one. But if you hear him on the radio, or meet him in person, you'd never know it. <br /><br />Chemo was a little touch-and-go this time. Phil barely met the required White Blood Cell (WBC) count of 1500. His count was 1510. (At 1500, nurses are instructed to call the doctor.) It's not just the WBC that results in this equation. For chemo patients, their neutrophil count makes the difference. Neutrophils are immature white blood cells and their level is called an Absolute Neutrophil Count (ANC). The WBC and ANC are factored together to determine if there's enough neutrophils to mature and make up for the loss of WBCs. <br /><br />Despite this near miss, Phil got his infusion on Tuesday and was disconnected from the portable pump on Thursday. Losing that encumbrance is always a celebration! Actually, this has been a stellar week! Phil has worked every day, long days, with brief naps at Shon's in the afternoon. These siestas are enough to rejuvenate him. Those of you who know Phil, know that he eats, breathes, and sleeps radio, and that has made a big difference in his ability to keep going this week--being in Moab so he can work. We SO appreciate Shon and Roseanna for opening their home and their hearts to us! <br /><br />Tonight Phil is in Moab broadcasting live from 6:00 p.m. to 8:00 p.m. at the April Action Car Show. This guy knows no mercy when it comes to radio! I'm surprised there was any WBC or ANC count at all--I thought he had 100% proof radio waves flowing in his veins!Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com0tag:blogger.com,1999:blog-3763378244288836808.post-45139927549998233432011-04-26T09:21:00.000-07:002011-04-26T09:41:25.638-07:00Cycle 4, Day 1We're off track! Ordinarily Day 1 would have been yesterday at Huntsman. But Phil wanted to be infused in Moab at the new Moab Regional Hospital, so we're off a day. <br /><br />The first step is always a blood test to check Phil's white blood cell count, among other things. If all's good, the doctor decides how much chemo Phil can tolerate and writes a prescription, which the lab fills and sends to the infusion center. Because Phil will have this treatment in Moab, the blood work was done yesterday and sent out to be read. Then Huntsman is notified and sends a prescription to the hospital in Grand Junction, CO, where the chemicals are prepared and sent to Moab. Consequently, we wait! Which doesn't bother Phil, but it's really bugging me! <br /><br />I have my biannual Regional Staff Meeting in Richfield tomorrow and since I've missed all training this year, I can't really afford to miss this one. If Phil had finished his 7 hour infusion yesterday, I would feel a lot better about leaving him on a portable pump today and tomorrow. But Phil insists that I go anyway, and that he will be OK. Yikes, this is really, really hard, but I know he can do it and I have to let him. <br /> <br />So the chemo is on it's way to Moab and Phil will leave work and report to the infusion lab at 12:30 p.m. I'm about to leave Blanding and will see Phil briefly in Moab, on my way to Richfield! I don't like this at all, but life goes on and sometimes we have to do the responsible thing, whether we like it or not.<br /><br />Thank Heaven Phil has such a strong support system in Moab. While I'm gone, Shon Walter and his family will be watching over my sweetheart till I get back. Phil and I are so thankful for these angels on earth!<br /><br />More later . . .Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com0tag:blogger.com,1999:blog-3763378244288836808.post-50136811051110916732011-04-12T14:54:00.000-07:002011-04-12T20:39:55.392-07:00Cycle 3 . . .Cycle 3, Day 1: Yesterday, just before finishing his treatment, Phil had a bad reaction to oxaliplatin. I had walked down to University of Utah Hospital to pick up copies of Phil's records when I got a call from Phil saying, "I'm going down. I'm going down."<br /><br />"Tell your nurse," I kept telling him. He said a nurse was with him. <br /><br />I took off immediately, leaving the clerk standing there making our copies. It took me atleast 20 minutes to get back to Huntsman, where I found Phil heaving violently and throwing up. The nurses knew just what to do and pushed an antiemetic--Ativan--through his IV. It worked immediately.<br /><br />Our nurse said, "I'm afraid he's going to be a cheap date tonight!" <br /><br />While Ativan acts to stop nausea, it also causes extreme drowniness, unsteadyness, and forgetfulness. I'm not sure about the forgetfulness because there was no chance to test him (What is your name? What year is this? Who's the president?). Phil fell asleep the minute we got in the car. I could vouch for the unsteadyness, however. Phil was trembling and weak and I had to have help to get him out of the car and into bed, where he slept soundly from 6:00 p.m. on.<br /><br />At 4:00 a.m. I couldn't believe it when Phil got up and did a news broadcast, then worked via computer till 8:00 a.m. before he went back to bed. Today he has enjoyed the rare luxury of resting in our palatial guest suite at Tom and Barbara's where Phil spent the day watching his favorite TV shows--anything on Fox News (with the exception of Huckabee). And Barbara made him delicious banana bread. Tom and Barb really pamper us! <br /><br />Here's some highlights from yesterday: <br /><br />1. Our daughter Liz flew in from South Carolina with her family and came straight to Huntsman to visit her dad. I was happy she got there after the crisis, but before I had to try and maneuver her dad to the car by myself after he refused a wheelchair! <br /><br />2. Our son Adam and my sister Wendy came to visit earlier in the day. It's always good to see them while we're there. <br /><br />3. We met some amazing people. Gary and Colleen of Rigby, Idaho are probably seventy-ish with an amazing sense of humor, despite Gary's rare t-cell lymphoma (diagnosed in 2007)--the only case at Huntsman. Colleen is a very petite lady who has Gary keep his admitting bracelet on so if she gets pulled over for having a self-described, lead foot, she can show the officer she has a good reason. <br /><br />4. We also met Deborah of Big Sky, Montana who has a very rare brain tumor (diagnosed in 2008), one of only seven known in the world. She's also had lymphoma (cancer of the lymph) twice. Deborah is probably the most positive person I've ever met. Through a constant smile and laughing eyes, she explained that she has had 5 brain surgeries, radiation, no end of chemo, and subsequent "drain bammage!"<br /><br />4. We were really excited to see old friends, Sterling, Dov, Suzanne, and Dave--all such positive folks, too! I was especially glad Dave was there when we came in. We missed getting his blog address last time: http://kastelersfight.blogspot.com/<br /><br />Dave is a big scouter and is planning to take a 50 mile hike this summer with his 13 year old son. Dave explained that his colon cancer had spread beyond his liver and he now has three tumors on his spine. He said he hoped that wouldn't stop him from carrying his backpack. In all seriousness, Colleen said, "You need a jackass!" We all laughed so hard to hear this tiny little lady make that suggestion! Pretty smart, actually.<br /><br />So there you have it . . . another chemo cycle in the life of the invincible Phil Mueller. Chemo might knock him down, but it can't keep him down for long!Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com1tag:blogger.com,1999:blog-3763378244288836808.post-8914449893302595812011-04-10T14:54:00.000-07:002011-04-10T15:15:35.224-07:00Thought for the day . . .Cycle 3 begins tomorrow. Meanwhile, Phil is doing AWESOME! He looks good, feels good, and is "in it to win it!"<br /><br />This thought (which I posted on FB) has been a huge inspiration to me:<br /><br />"No matter how difficult something you or a loved one faces, it should not take over your life and be the center of all your interest. Challenges are growth experiences, temporary scenes to be played out on the background of a pleasant life. Don’t become so absorbed in a single event that you can’t think of anything else or care for yourself or for those who depend upon you." -- Elder Richard G. Scott<br /><br />I'm thankful to be reminded that even in the midst of adversity, life is good! In fact, adversity makes life even sweeter because we gain a better appreciation of things we take for granted. There's no better wake up call than a good hardship!Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com0tag:blogger.com,1999:blog-3763378244288836808.post-74266642098557118512011-03-31T21:23:00.000-07:002011-03-31T22:56:16.130-07:00Home again!Great day!--sunshine, warm weather, and we're home again! Phil drove from Sandy to Provo; I drove from Provo to Price; and Phil drove the rest of the way home! What a hunk!<br /><br />Some of you have asked how chemo is affecting Phil. <br /><br />1) Touching cold objects (like anything in the frig, the car door handle at 2:00 a.m. on his way to work, etc.) gives Phil a "10,000 volt shock" (Phil's words). I bought him several kinds of gloves at Cabela's yesterday, so if you see Phil in gloves, you'll know why! And after this cycle (cycle 2) Phil started getting the same sensation in his throat when drinking something cold--so now we make drinks warm, even water. <br /><br />2) About day 3 Phil starts to feel pretty sick. Antiemetics help, but he still feels a gag reflex and bloating which translates to no appetite--he's actually afraid of eating because he doesn't want to get any sicker. During cycle 1 that feeling lasted from day 3 through day 5, and this cycle, so far, has been about the same. Some of the chemo drugs cause constipation and some cause diarrhea, so that goes back and forth, too. Go figure!<br /><br />3) Tingling in Phil's fingers and toes has increased, and now he's having some numbness in his feet. This neuropathy will diminish somewhat as the cycle continues, we're told, but by the time he feels any improvement it will be time for another cycle. Eventually the neuropathy will be irreversible. That's why the Oxaliplatin will be withdrawn after cycle 6. <br /><br />4) The new chemo drug introduced this week, Bevicizumab (Avastin), causes hypertension, which Phil already struggles with. So Dr. Weis prescribed potassium and Lasix, in addition to Phil's regular high blood pressure meds (Hyzaar and Norvasc). If I understand right, the potassium helps replenish depleted minerals and the Lasix helps prevent edema. However, the potassium has to be taken with food and Phil has to stay upright for 30 minutes (for why I don't know, but intend to find out). Since Phil hasn't been able to eat and has been mostly sleeping, he couldn't take the potassium. When the home health nurse came to disconnect his pump yesterday she was concerned because Phil's BP was high (190/80). Hopefully taking the potassium and Lasix today has helped.<br /><br />5) Phil is always tired--some days more than others. Days 2 and 3 are spent sleeping and resting, which hopefully helps Phil bounce back faster. But like Dr. Weis said, "About the time you start feeling better, we zap you again." We're extremely grateful to Shon for giving Phil a key to his house, so he can slip away from work and rest while he's in Moab. <br /><br />Phil is always anxious about missing work. When we're away he spends most of his time on the computer working, even getting up at 4:00 a.m. to do live news broadcasts for the radio stations. But some days are just impossible due to sickness and fatigue. <br /><br />Thanks to all of you for your thoughts, prayers, and support!Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com0tag:blogger.com,1999:blog-3763378244288836808.post-18113032425362078152011-03-29T22:55:00.000-07:002011-03-30T00:45:00.210-07:00When life gives you lemons . . .Phil is my hero! Yesterday he cheerfully endured a grueling seven straight hours of chemo. Before meds are mixed, Phil's blood is tested to be sure he can tolerate treatment. Then his chemical regimen (or recipe, as it's called) is mixed and infusions begin in this order: 1. pre-meds (saline, calcium and magnesium, and an anti-emetic to prevent nausea); 2. oxaliplatin (derived from platinum--with a price to prove it), 3. leukovorin (folic acid which binds 5FU to cancer cells); and 4. Bevicizumab (or Avastin). Then he's disconnected from the infusion lab pump and receives: 5. a five-minute bolus, or "push," of flourourasil (commonly known as 5FU) by syringe, and 6. then connected to a portable pump affectionately referred to as his "little friend," which pumps 5FU over the next 46 hours. This pump resembles a ball about the size of a large grapefruit and reduces in size as it infuses. <br /><br />Since we were in the infusion lab from noon till just after 7:00 p.m., 46 hours later falls at 5:00 p.m. on Wednesday. That's when the home health nurse will visit us to disconnect Phil's pump and we're free for another 11 days till cycle 3 begins. Right now Phil is scheduled for 12 cycles (2 down--10 to go). But as Dr. Weis wrote in his diagnosis, "this treatment will likely continue indefinitely."<br /><br />As a neophyte who is fast becoming a frequent flyer of the infusion lab, Phil has learned to navigate while attached to his infusion pump/IV pole. All those fluids necessitate several trips to the rest room and on one such excursion, Phil escaped to the infusion lab across the hall to share some exciting "news" with Dov, who was also being infused. Earlier we had received a copy of the report Dr. Weis dictated regarding our previous visit which read, "Mr. Philip Mueller is a 67-year-old woman . . ." A what? Phil and Dov had some good laughs over that! <br /><br />I told Phil, "Atleast it doesn't say, 'Upon examination . . .' !" <br /><br />By the way, Phil's white blood count was lower this week (but fortunately not too low for infusion). Please be aware that Phil's immunity to germs, bacteria, and viruses is also compromised. Research proves that frequent hand washing is the best way to avoid spreadiing disease (that's the Extension Agent in me speaking). Avoid hand-shaking. Cough and sneeze into your elbow. And if you're not feeling 100%, please use the "six-foot rule." Keep a distance of six-feet between you and Phil, and know that we love you for your thoughtfulness and consideration!Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com2tag:blogger.com,1999:blog-3763378244288836808.post-72430167130486162842011-03-15T20:33:00.000-07:002011-03-15T23:56:08.412-07:00Yesterday was an amazing day . . .We arrived at Huntsman at 8:30 a.m. yesterday for Phil's first chemo treatment. Each round of treatment is counted as "Cycle 1, Day 1; Cycle 1, Day 2," and so on to day 14. Then it starts all over again with, "Cycle 2, Day 1; Cycle 2, Day 2," and so on. Phil is scheduled for 12 cycles, which doesn't sound like much till you realize that's 24 weeks, or nearly six months. <br /><br />It didn't take long to feel acclimated to the Infusion Center at Huntsman Cancer Institute. Although we both felt anxious--like plunging into an abyss, Phil's nurse, Debbie, was quick to make us laugh and feel right at home. Her lightheartedness was infectious as she went from hooking Phil up to his chemo, to offering donuts, cookies and an introduction to the donor of these goodies--Dov (pronounced with a long "o" as in, "He dove into the water"). Dov Siporin has had Stage IV Colon Cancer for three years. His sidekick, Suzanne Harsha-Arevalo, was diagnosed the same time as Dov, and has also survived three years with Stage IV Colon Cancer. Suzanne announced that she was in complete remission. This is remarkable considering Suzanne had 12 lesions on her liver and her cancer was also inoperable.<br /><br />Dov and Suzanne did more for us than any doctor--they exemplified what it means to fight! Dov wore a black t-shirt with "F*** Cancer" printed on the front, and "Inoperable but Undefeated" on the back. I'm guessing Dov is in his 30s. Always smiling, Dov is the picture of health--it is impossible to believe he has a stage 4 cancer. Dov did a stand-up comedy routine to rival any professional and had everyone in our infusionj room laughing so hard.<br /><br />Suzanne is intense with shortly cropped hair (probably courtesy of chemo) under a black cap. Her oncologist (who is also Dov's and Phil's oncologist) wanted Suzanne to do three more months of chemo but she refused. You can't help but respect and admire her courage. Both Dov and Suzanne are devoted to inspiring others and they share their stories with frankness and humor. <br /><br />In the waiting room I also met Kristen, her husband Josh, and their beautiful blond baby girl. I learned that they have three sons at home and that Josh was diagnosed with a brain tumor about a year ago. There is a long scar almost circling Josh's head, like a triumphant halo. Kristen shares their story and refers me to her blogs: my-3-sons-kmb.blogspot.com and dadnamedjosh.blogspot.com I encourage you to visit them--each is very inspiring!<br /><br />I also met Max, a positive and upbeat survivor who I learn is participating in a clinical trial hoping to find better treatments for his type of cancer--melonoma. He has a couple of scars on his cheek and his neck that add to his rugged good looks! He's all about climbing mountains so his blog is aptly named: mountaintherapy.blogspot.com Max hasn't let cancer own him--his life is so inspiring!<br /><br />So you can see that we had an amazing day. As Dov pointed out, you learn about everyone else and tell yourself, "At least I don't have it as bad as you." And he's right. It's amazing that no matter how bad you think your own situation is, you wouldn't trade with anyone else. <br /><br />I've been pretty careful to keep this blog factual and all about Phil. But in keeping it "real," I realize that I've ignored the emotional side of cancer. Although Phil is a brick, I've avoided talking about feelings because they're just too raw and real to reiterate. But bottling them up hasn't made them go away--instead they intrude at the worst possible moments. Monday I stepped out of the infusion room and noticed Dov visiting with a group of folks in the waiting room so I stopped to listen. Soon I was sharing Phil's story and the tears broke through. As I began to apologize, I found myself encircled by tender and compassionate listeners whose hugs and sweet sentiments were a huge comfort! <br /><br />Phil was feeling the love, too, when Dov and Suzanne paid him a special visit bringing cheer, inspiration, and most of all HOPE! We really needed that extra "infusion" of HOPE! We can mainline that stuff any day!!! We can't believe how much love there is at the Huntsman Cancer Center. <br /><br />Although Phil and I took plenty to read, we read very little. It was amazing how fast seven hours sped by while visitng with new friends in the infusion center--Bob and Linda, Sterling and Maria, Ro, Ella, and others. <br /><br />Soon Phil was hooked up to his portable pump which would continue to infuse over the next 46 hours. With less than a day left on his portable pump (a small ball he carries in a shoulder bag) he's feeling NO side effects, except sensitivity to cold. He gets disconnected Wednesday at 1:15 p.m. and we're going home! <br /><br />We feel blessed in a multiplicity of ways--good family, good friends, good medicine, and . . . HOPE!!!Louhttp://www.blogger.com/profile/09553318387704183156noreply@blogger.com3