tag:blogger.com,1999:blog-12056902537460061522024-03-12T19:08:49.979-07:00My Battle with Merkel Cell CancerThis is a highly malignant cancer. I discovered it in May,2010. I had surgery and radiation. I also developed posterior mediastinal and small bowel metastases. I had chemotherapy. After a good response, I had chemoradiation of the mediastinum. I am now battling with post irradiation esophageal recurrance.
Dave Shuster passed away on April 18, 2012 from complications of Merkel Cell Carcinoma. A copy of this blog in PDF format is available at http://dave.shuster.com/docshuhttp://www.blogger.com/profile/01875773280408093059noreply@blogger.comBlogger134125tag:blogger.com,1999:blog-1205690253746006152.post-69472885777044279102013-12-06T14:41:00.000-08:002013-12-06T14:41:00.743-08:00My Dad's Last Words<i>Around the one year anniversary of my father's death, I was asked to give a brief talk titled "If these were my last words". It was literally at the same event, one year earlier, that I learned that my dad was being hospitalized for sepsis -- a condition that would leave him hospitalized for all but a couple of his remaining days alive. Several of my friends have recently lost their fathers. This morning, I learned that one of my law school classmates lost his dad last month, who was, like my dad, a too-young 71 years old when he passed away. His last words to his dad -- "I love you" -- were his way of "returning the favor" for an important time that his father had spoken the same words to him. This story was so poignant and so closely echoed my own experience with last words. I had largely decided to leave my dad's blog untouched, but in this case I feel that posting a copy of my remarks about last words is a fitting addition to my dad's blog:</i><div>
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5:00 a.m., a year ago, I was driving home early from
Renaissance Weekend, not knowing for sure if my dad had died in the night.</div>
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The afternoon before I got a terrible call from my mom. The chemo, Dad’s heading to the ICU, dad has
sepsis, its bad she said. </div>
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It was wrenching, but she asked me not to drive home until
morning, she was going to be up all night, and if dad made it, he would need me
to be awake to comfort him, hold his hand, advocate for him.</div>
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It was the hardest night of my life, a year ago in this
hotel. I have no idea how much worse it
might have been without the caring , comfort, guidance and love that the family
in this room gave me. So thank you.</div>
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Driving home, I thought a lot about whether I might miss dad’s
“last words”.</div>
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But I realized that my dad would speak no last words. None of us speak our own last words. Last words aren’t the sounds that escape with
our last breath. Our last words are
spoken long after we die by the people whose lives we touched.</div>
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My words and my children’s words are shaped by dad’s love
and example.</div>
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We don’t have the opportunity to pick our last words, because
we aren’t the ones who speak them. Those
words are built of our deeds, our love, our example, our compassion. We can’t change that legacy quickly. There is no death bed fix.</div>
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My dad survived the night, but died two months later. His voice did not die with him.</div>
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I leave you with this:
Our last words are the legacy of our lives, and while they aren’t always
the ones we might want, they are always the ones we have earned.</div>
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Gary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com1tag:blogger.com,1999:blog-1205690253746006152.post-84209133334258715642012-09-23T13:01:00.002-07:002012-09-23T13:09:45.485-07:00Bert Rettner Joins Dad<br />
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My dad’s very close friend, Bert Rettner, passed away today
some 15 minutes after my mother visited with him. Bert often visited my dad in the hospital and was a
source of support for my dad during his battle with MCC.</div>
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Bert and my dad played great bridge together. They made an excellent team, and I find
comfort in imagining that my dad is right now welcoming Bert and sitting down
with him for some hands of bridge. My
dad was a Life Master in bridge. With
Bert’s arrival, I imagine they are now both working toward becoming After-Life
Masters in bridge.</div>
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Five months out and I still miss my dad every day. Bert’s passing reminds me that we all end up
in the same place – it is not a matter of whether we go there, but when. Dad loved Johnny Cash, and this passage is particularly poignant: </div>
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<span style="font-family: Verdana, sans-serif; font-size: x-small;"><span style="line-height: 14px;">Daddy sang bass,</span></span> </blockquote>
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<span style="font-family: Verdana, sans-serif; font-size: x-small; line-height: 14px;">Mama sang tenor.</span></blockquote>
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<span style="font-family: Verdana, sans-serif; font-size: x-small;"><span style="line-height: 14px;">Me and little brother would join right in there.</span></span></blockquote>
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<span style="font-family: Verdana, sans-serif; font-size: x-small;"><span style="line-height: 14px;">Cause singing seems to help a troubled soul.</span></span></blockquote>
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<span style="font-family: Verdana, sans-serif; font-size: x-small;"><span style="line-height: 14px;">One of these days and it won't be long,</span></span><span style="font-family: Verdana, sans-serif; font-size: x-small;"><span style="line-height: 14px;">I'll rejoin them in a song.</span></span></blockquote>
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<span style="font-family: Verdana, sans-serif; font-size: x-small;"><span style="line-height: 14px;">I'm gonna join the family circle at the Throne.</span></span></blockquote>
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<span style="font-family: Verdana, sans-serif; font-size: x-small;"><span style="line-height: 14px;">Oh, no the circle won't be broken.</span></span></blockquote>
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<span style="font-family: Verdana, sans-serif; font-size: x-small;"><span style="line-height: 14px;">By and by, Lord, by and by.</span></span></blockquote>
<br />Gary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com0tag:blogger.com,1999:blog-1205690253746006152.post-34782070743743075592012-05-02T16:31:00.000-07:002012-05-02T16:35:19.364-07:00LivingDad changed fundamentally in his two year battle with Merkel Cell Carcinoma. <a href="http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/i-discover-mass-in-my-face.html" target="_blank">He discovered the first lesion on May 6, 2010</a>, almost exactly two years ago. As he came to understand the profound danger he faced, he allowed things that didn't matter to simply fall away. He got in touch with his love for his family in a way that was far more intense than before he started the battle. He enjoyed every moment with his grandchildren. He took his wife on cruise vacations as often as possible. In the weeks before he passed away, he celebrated a grandchild's birthday and conducted a family Seder.<br />
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Dad enjoying Sara's birthday on April 9.</div>
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In facing death, dad decided to truly live his life. I love how he embraced what is important, and allowed the distractions from a happy life to fall by the wayside. None of us need to wait until we face a terminal illness to live the way dad lived his final years. </div>
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Dad left behind a great family, a family that will live a better life thanks to the legacy and lessons he leaves behind.</div>
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Grandma, Poppa, and their five grandchildren on the family cruise, December 2011</div>
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Dad and family on a cruise, December 2011</div>
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We each remember dad -- and allow that memory to enrich our lives -- in our own way.</div>
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His passing allowed me to reflect on whether I was the man he was, or at least the man I wanted to be. Dad had always loomed large -- a man whose shoes I could never hope to fill. He was a man who would hoist a canoe over beaver damns, a man who would step in to fix anything that went wrong, a man I turned to for rock solid advice. He was in so many ways not just a father, but a father figure. He was a hero to his mother when his father was sick and later died. He was a hero and role model for his children. Like any respected father figure, he cast quite a shadow.</div>
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Even to the end dad projected strength, regardless of the cancer's weakening of his body. </div>
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A few days after he passed away, I looked in his closet and was drawn to his shoes. I had always assumed his feet were far bigger than mine, so I had trouble believing what I saw. I stared for minutes. His shoes looked the same size as mine. And they were. I sat down, picked out a pair of shoes I had seen him wear dozens of times, and put them on. I literally filled his shoes.</div>
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I sat, reflected, and realized that dad may have passed away, but he left his children ready to take on the world.</div>
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Dad often listened to the Kingston Trio. In the days after he died, I found myself tearing up when I played their song "Reverend Mr. Black": </div>
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<i>It's been many years since we had to part. I guess I learned his ways by heart. I can still hear his sermon's ring, down in the valley where he used to sing. I followed him, yes, sir, and I don't regret it and I hope I will always be a credit to his memory 'cause I want you to understand. The Reverend Mr. Black was my old man!</i></blockquote>
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The sun sets during the last family vacation with dad, December 2011</div>
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</div>Gary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com1tag:blogger.com,1999:blog-1205690253746006152.post-49894550600497909122012-05-02T14:12:00.000-07:002012-05-03T23:26:11.793-07:00DyingI woke up on Wednesday morning and all seemed well with the world. I had just spent the weekend in Yosemite, was loving my time with the family, and was enjoying an apparent respite in my dad's illness.<br />
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I dropped Eva off at school at 9:00 a.m., and I had Sara and Bel in the car going to preschool. The phone rang at 9:11 a.m., and it was my mother. Everybody with a sick relative knows that there are times when your heart drops when the phone rings, but this wasn't one of those times. I figured she was calling to see if one of the kids wanted to visit after school. Not so.</div>
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Her first words were ominous: "I didn't want to call you until I was sure you'd dropped Eva off." My heart drops. I have a speaker phone in the car, so I warned her that Sara and Bel were in the car and could hear. I'll never know how the conversation would have gone if she could have spoken freely, but she was fairly blunt: "Dad is having troubling breathing and we called the pulmonologist but its been a couple of hours and he hasn't called us back. I'm thinking about calling 911 and getting an ambulance." I told her "hang up right now and call an ambulance, I'll drop off the kids as quickly as I can and I'll get right over to your house." She did. <br />
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At 9:13 a.m. I called my wife and let her know the situation (I'm using the phone records so these are actual times). I called my mom back at 9:19 to confirm she'd called the ambulance, which she had. I called and updated my wife at 9:20.</div>
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My mom called back at 9:25 a.m. and she told me the back story -- when she woke up and came downstairs, my dad was awake and told her he was in respiratory failure. I had outfitted his chair with a button connected to a chime that rang upstairs, but he never pressed the chime. I later confirmed the chime was working and dad was pretty cogent.<br />
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At 9:26 I called one brother; at 9:27 I called the other. I gave them the little information I had.</div>
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I was over at the house around 9:30 (I'd stopped at my home, just around the corner, to get my bag and stuff I'd need assuming I'd be at the hospital for a few days). As I pulled up, the firetruck was there already and the ambulance was parking. That will make it real in a flash.</div>
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I asked if my mom could ride with my dad in the ambulance but they either refused it or discouraged it. Either way, we drove separate cars. She wanted to pack some things she would need so I left first. I followed the ambulance, and their siren and lights weren't on. I thought that was a positive sign. I tried to follow the ambulance through the lights, but it turns out that ambulances run an awful lot of very yellow lights, siren or no siren. I arrived perhaps two minutes after the ambulance, but they had already taken dad into the hospital. This meant he was on the inside of the impassible doors to the inner emergency room and mom and I were on the outside. We tried to go in through the ambulance bay doors, but that didn't work.</div>
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We walked to the front desk in emergency. My mom explained that ...<br />
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* * *<br />
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Ok, that mid-sentence stop above is not typo. It is an event-driven discontinuity. I was writing the post during down time before the post-death activities hit a fever pitch. I don't know if it is designed to distract the survivors or just a mismatch between the things our culture expects and the things the survivors need, but we got so busy with dealing with funeral plans, out of town relatives, condolences, even things like canceling Amazon Subscribe and Save subscriptions that all normal activity slowed to a crawl. So I continue this post where I left off, my memory both dulled and sharpened by the passage of time. I wrote the earlier portion of this post well over a week ago.<br />
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I sent emails to family all day with updates. Excepting for things personal to family, I will intersperse this post with those email updates at the time when they were sent. They are hard to read, even for me (and I wrote them). But dad never pulled punches. He was brutally honest. And Merkel Cell Carcinoma cells are a practiced fraternity of assassins, operating quickly and brutally. As my dad documented his transition from vital, healthy 69 year old to an injured but spirited 71 year old with stage 4 cancer, I feel I owe it to him to document the final part of that transition, the one that ended with his release from a pained and infested body. He asked me to post about what his last day was like, and I feel my contemporaneous emails perhaps best capture the type of chaotic uncertainty that others facing MCC (and their families) should prepare for. I hope it is wasted preparation and a cure is soon found, but this is here as a resource while we await the success of the work of Dr. Ngheim and others.<br />
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Contemporaneous posts are found in courier text in a quotation box, prefaced with "Email". The first of them is immediately below this box. Note that the subject line tried to keep format of "Update" with 24 hour time following. I didn't keep that up the whole time.<br />
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<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email sent <span style="white-space: pre-wrap;">Date: Wed, 18 Apr 2012 10:07:59 -0700</span></span><br />
<span style="font-family: 'Courier New', Courier, monospace;"><span style="white-space: pre-wrap;">subject: "Update 10:06"</span></span>
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<span style="font-family: 'Courier New', Courier, monospace; white-space: pre-wrap;">He has arrived by ambulance. He is in the ambulance bay. We are not </span><span style="font-family: 'Courier New', Courier, monospace; white-space: pre-wrap;">yet allowed to go back to see him. We expect the go in a few minutes. </span><span style="font-family: 'Courier New', Courier, monospace; white-space: pre-wrap;">Will then be more to let you know.</span>
<span style="font-family: 'Courier New', Courier, monospace;">Sent from my iPhone **</span></blockquote>
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<span style="font-family: 'Courier New', Courier, monospace;">** Email sent <span style="white-space: pre-wrap;">Date: Wed, 18 Apr 2012 10:24:02 -0700</span></span>
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<span style="font-family: 'Courier New', Courier, monospace;"><span style="white-space: pre-wrap;">subject "Dad"</span></span>
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<span style="font-family: 'Courier New', Courier, monospace;">Just arrived via ambulance to st Agnes. Irregular heart rate and</span><span style="font-family: 'Courier New', Courier, monospace;">rhythm. Low spO2. Did [SIC, should be did not] feel he could tolerate car ride to hospital.</span><span style="font-family: 'Courier New', Courier, monospace;">More if there is more. Please share with his siblings.</span><span style="font-family: 'Courier New', Courier, monospace;"> </span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Sent from my iPhone **</span></blockquote>
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We walked to the front desk in emergency. My mom explained that her husband had been taken in by ambulance and was in self-described respiratory failure. The man staffing the desk seemed like he wanted to be helpful but was overwhelmed with responsibilities (emergency rooms, even on a weekday, are partly emergencies and partly primary care for the uninsured, so the front desk staffer is the front line recipient of a lot of angst and conflict). When he said, more or less, that they had things well in hand back there and we'd be called in at some point later, I felt something in me that happens once every few years. The last time it happened was during the 2008 presidential campaign when I was managing a voter registration drive and we were illegally instructed by law enforcement that we weren't allowed to register voters in a public place: I flipped into intense, personally impacted lawyer mode. I felt myself compelled to stare, unblinking, into his eyes and say "understand that my mom has been married to him for 50 years. He worked at this hospital for decades. He is a doctor and thinks he's in respiratory failure. I need you to go back there, tell them that, and tell them that the family refuses to let him die alone and we need to be let back there." I'm normally pretty non-confrontational (at least in person), but if the intensity of my words were translated into physical force, the guy would have been unconscious on the floor. He said, basically, "take a seat, I'll let them know."<br />
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We sat down and I watched him rush back to the inner sanctum of the ER. When he returned to the desk my mom went up to follow up. I don't know what she said, but she came up to me with a badge on and said that they could only get one visitor badge. I told her to head in. <br />
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<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email sent Date: Wed, 18 Apr 2012 10:50:22 -0700<br />Subject: Update 10:44 am<br />Mom is in there with dad. I'm in waiting room due to "one visitor at a time policy".</span></blockquote>
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">He's confirmed to be in atrial fibrillation. He is already on amioderone, which is the drug that previously fixed it, so I assume they're going to up the dose or use something in addition.</span></blockquote>
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<span style="font-family: 'Courier New', Courier, monospace;">They hear a wheezy noise they don't like in his lungs. They are taking him in for a chest x-ray. Obvious candidate is pneumonia (fits with with low blood oxygenation level), but given the cancer impinging on the bronchi, who knows. Mom thinks (hopes?) they'll let me in after the x-ray. I think dad is more comfortable having his wife with him, so I encouraged her to stay by her side and that I'd be fine patiently waiting in the waiting room. I didn't tell her about the very loud annoying woman eating something on the order of 40 pounds of Fritos who is sitting next to me, but she doesn't need to know everything.</span></blockquote>
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<span style="font-family: 'Courier New', Courier, monospace;">My guess is that they'll admit him at least overnight, if for no other reason than defensive medicine to avoid a lawsuit if they release him and he has a fatal heart attack. But no decision has yet been announced on admission.</span></blockquote>
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<span style="font-family: 'Courier New', Courier, monospace;">I think it is a bad sign that I've gotten good at this. I have my laptop, my TOR browser (to get around the hospital filters), my iPad with hotspot (in case Tor fails) and my iPhone with megacharger. I also have meal replacement drinks with me.</span></blockquote>
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<span style="font-family: 'Courier New', Courier, monospace;">I should create a macro for the term "this sucks", since I'm writing it a lot. This sucks.</span></blockquote>
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">More when there is more to share. **</span></blockquote>
<span style="font-family: 'Courier New', Courier, monospace;"><br class="Apple-interchange-newline" /></span><br />
Mom came out a few minutes later and said dad was still ok and cogent, but they hear something they don't like in his lungs and he's going for a chest x-ray. She wanted to know if I wanted a turn in there. I said no, you're his wife and I know he wants nobody more at his side right now. She just nodded and headed back in. In a different world, my mom would have been a lawyer, because within a few minutes she appeared in the waiting room with a second badge, saying something about how she insisted that the doctor issue one for me. And with that, we were both able to get back to the ER back area.<br />
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We had some time waiting for x-ray and dad called me over. he said something to the effect of "If I don't make it today, I want you to make sure to update my blog with what happened." Until that point, I thought the blog was partially cathartic for him, and partially an effort to help others battle not just MCC, but the weird, scary, unexpected things that accompany it. When facing his own death and knowing that he wouldn't get to enjoy the catharsis of writing about it, I learned that (at least by the end) he was providing his fellow travelers down the "life with MCC" path with the kindness and protection of the type he had spent 50 years providing his family (68 if you count protecting his siblings). I promised him I would keep the group updated.<br />
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Dad was, by now, switching between being very aware and closing his eyes. During the first eye close following that discussion, I quickly updated the blog with the current situation and sent an email:<br />
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<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email Date: Wed, 18 Apr 2012 10:59:01 -0700<br />Subject: docdave back at hospital<br />To: [ mcc google group ]<br />
<a href="http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2012/04/following-ambulance.html">http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2012/04/following-ambulance.html</a><br />
New update, dad is back in the hospital. **</span></blockquote>
<br />
We immediately started getting supportive messages back from the MCC group. At moments like this, every message of support is worth ten messages of support during more stable times. They were all read and appreciated.<br />
<br />
My mom was shaky and hungry, and was worried about taking the time to go to the cafeteria. I remembered from the prior hospitalization (you <u>don't</u> want to do this enough to know how to work the system like this) that nurses will bring family a plain but sufficient sandwich if you ask nicely. I tracked down a nurse and my mom was spared the anxiety of being away from dad (and he was spared the anxiety of being away from her). She did need to go to the restroom, though, and I took that opportunity to tell my dad that whatever happened, he had good sons and we would make sure mom got all the support and looking after that she needed. He visibly relaxed. He knew it, of course, but it is important to say it, particularly when somebody is experiencing poor concentration or high pain.<br />
<br />
Another thing that happens in these situations is that you seek a tiny bit of normal in the day. Perhaps it keeps you moored. I emailed the local camera shop and asked what kind of lenses they rent. I know, the very strangest thing you might imagine doing. But dad had his eyes closed, mom was deep in thought, and I needed to remind myself that life would go on regardless of the outcome. You <b>will</b> be tempted to feel guilt over such moments. Don't. I took a few such moments, and they gave me the strength to be well moored when the time came for the really hard stuff.<br />
<br />
<br />
At some point that day, the Votrient we had ordered via next day delivery was to be delivered to his home. His final post was made just days before he died: “it looks like Topotican did me no good…. I have had respiratory difficulties … [and when I] attempted to go upstairs for a shower … that was a failure as I had [an] asthma-like attack. It looks like I have a choice of waiting to die or going on Votrient … I somehow doubt my insurance will pay and I think it will cost a lot of money…. This seems to be the last arrow in my quiver.” He wasn't home to sign for that first shipment of Votrient because he was in the hospital, dying. Dad was a realist, but a fighter -- he was ordering ammunition to use against the cancer the day before he succumbed to it.<br />
<br />
<br />
We were still waiting for the x-ray at 11:46. We were getting impatient, but they wanted to stabilize his heart first. First things first, I guess. I'm not a doctor, but it didn't seem to surprise my dad, who was a doctor.<br />
<br />
I realized I hadn't been keeping my ex-wife (and oldest daughter's mom) up to date. I emailed her along with my brothers:<br />
<br />
<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 11:46:50 -0700<br />Subject: FYI<br />Dad is alive, alert, and describes himself as restless. They won't X-ray him until they stabilize his heart. spO2 is ranging 88% to 92%. Pulse 120. Blood pressure scares me at 90/38.<br />
He expects to be admitted overnight.<br />
Sent from my iPhone **</span></blockquote>
<br />
My ex-wife wrote back "Thank G-d!" when learning my dad was alive and alert. Divorces are tough on families and there is a temptation to demonize the ex. My dad never gave in to that temptation, and was probably the most even-tempered of the lot of us during that time. I've previously posted about the benefits of a happy blended family, and this was one of them: My ex-wife stood by the ready to help, and when my dad died, she was able not just to comfort our daughter, but to comfort her from a place of empathy.<br />
<br />
Turns out I read the blood pressure wrong. There will be errors, and when reporting to remote family members correcting the errors quickly is pretty important:<br />
<br />
<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 11:50:49 -0700<br />Subject: Re: Update 11:43<br />Correction. I misread blood pressure. 113/47<br />
Sent from my iPhone **</span></blockquote>
<br />
In retrospect, I'm not sure that I misread the blood pressure, since it kept swinging pretty widely, but in the moment I wanted it to be 113/47 more than 90/38, so when I saw that reading, I was pretty willing to assume an error rather than volatility.<br />
<br />
I told the nurse that we wanted dad to speak with the doctor directly about his instructions regarding "do not resuscitate" ("DNR") and similar issues. The nurse said she would get the doctor.<br />
<br />
By noon, I was starting to feel a real risk that dad wouldn't make it out of the hospital. On the one hand, I was thinking they might send him to a regular room, but in my gut I was worried he wouldn't even make it to the ICU. I didn't want my out of town family to be caught by surprise (more than they already would be) by getting "he's at the hospital" emails followed by a "he passed away" email. So I sent an email offering a pretty frank assessment:<br />
<br />
<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 12:03:49 -0700<br />Subject: Re: Update 1201<br />
O2 saturation took a nosedive before recovering.<br />
Dad is kind of out of it on and off.<br />
I'm not an MD so my intuition means little scientifically, but I have a very bad feeling in my gut about this one.<br />
Sent from my iPhone **</span></blockquote>
<br />
The emails are, by now, getting harder and harder to send, but I'm getting to the point where I am getting teary-eyed and I fear having a phone conversation would be a very hard thing to do without becoming incoherent. So emails it was. <br />
<br />
We got word that the ER doctor wanted to admit him to the ICU, but they first whisked him off to x-ray.<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 12:07:28 -0700<br />Subject: Re: Update 1206<br />On his way to X-ray.<br />
ER doctor wants him admitted to ICU. we'll see if there is an available bed. **</span></blockquote>
The doctor came in and I asked him to ask my dad for his specific DNR and related instructions. I was aware that my mom and I knew them, but I knew they would be followed more accurately if given directly by the patient. It also would save my mom, if it came down to it, from having to say the words that dad would have wanted her to say but that would be very hard to actually say with regard to somebody she's loved for over 50 years. I also recognize that writing instructions in a lawyer's office, or even discussing them in the abstract even in a hospital bed, is only a simulation. When faced with the reality that the instructions are likely to actually be followed that day, people often need to tweak their instructions. <br />
<br />
He said he did not want to be resuscitated "ever", regardless of the event or the severity of the event. I got him to clarify whether he would want to be resuscitated even in the event of a minor event, and he said "no" with clarity and purpose.<br />
<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 12:31:43 -0700<br />Subject: Update 12:28<br />
He has been admitted to ICU.<br />
he just gave the doctor an order that he does not want to be resuscitated "ever" regardless of the event, respiratory, cardiac or otherwise. So given he has abnormal cardiac rhythm, terrible O2 sat, probably needs to be intimated [SIC, should be intubated], and has tumor impinging his lung, the DNR instruction gives a very high risk of death in the next few hours or days. A hope I'm wrong.<br />
Sent from my iPhone **</span></blockquote>
The x-ray came back around 12:15. I don't recall dad reading it himself, it is one of the few memories that aren't still totally clear for me:<br />
<br />
<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 12:22:16 -0700<br />Subject: Update 12:20<br />
Dad read his own chest X-ray. Described it as bad, bilateral pneumonia.<br />
I'd be shocked if he isn't in the ICU overnight.<br />
Sent from my iPhone **</span></blockquote>
<br />
My dad was visited by the doctor who was to admit him to the ICU. I prompted this doctor to make sure he knew my dad's wishes, and to ask my dad directly. He did:<br />
<br />
<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 12:58:57 -0700<br />Subject: Re: Update 12:58 bad news. Possible rapid development.<br />
He just refused intubation. He instructed doctor "instead of intubating me, just shut me down with morphine. I've just about had it. I've had enough."<br />
He is giving instructions that make it highly likely he will not live much longer.<br />
He is peaceful, tired, kind, and entirely unemotional.<br />
Sent from my iPhone **</span></blockquote>
<br />
<span style="font-family: 'Courier New', Courier, monospace;"><br /></span><br />
I was getting a lot more anxious. My mom was getting anxious as well, although both of us began to feel an increasing split between the reality unfolding in front of us and the reality as we wished it were. Dad was clearly preparing to die, and that was the objective reality. The analytical Harvard-trained lawyer knew this, and he was the one drafting the emails. The scared little boy watching his daddy suffer, watching his hero lose his last battle, watching his role model pass in and out of consciousness, that scared little boy believed that his daddy would make it. That scared little boy knew nothing could beat his daddy, his protector.<br />
<br />
Ultimately, both the lawyer and the scared little boy in me were right. Dad was dying, but he was dying on his terms. Merkel Cell Carcinoma wanted to torture him into the darkness, to chase him scared into the wildness of death. He stood his ground as long as he could, then metaphorically said "fuck you, cancer, I may not be able to stop you from hastening my death, but I'll be damned if I let you dictate how, when, and with what degree of pain." Dad was a doctor, and a good one at that. He knew he had pneumonia, and he was bringing up morphine, a respiratory depressant (like hydromorphone, trade name Dilaudid). He was unable to dictate the terms of his entry to the world of cancer, but he had just laid out the path for his exit. There would be no horrific final days of pain and suffering.<br />
<br />
My brother Michael wrote back at 1:36 (4:36 in Philadelphia, where he lives) "I wish him good luck. Bon voyage, dad. I love you." Reading that, from my youngest brother, made things even more real. We were really all saying our goodbyes. The rational part of my brain was holding out hope even as I knew hope was fading fast.<br />
<br />
They were ready to move him to the ICU, they had his room, but the doctor with the paperwork was busy with another patient. We waited quite a while before he was moved.<br />
<br />
<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 13:46:13 -0700<br />Subject: Update 13:46<br />Dad about to be moved to ICU 12 on the B side<br />
Sent from my iPhone **</span></blockquote>
<br />
Before they moved him, they wanted to do something about his oxygen saturation. It turns out that while he refused intubation, he accepted a "BiPAP" mask. This is a mask that covers the nose and mouth and when it detects the patient breathing in, it ramps up the pressure to force in the air. It also allows oxygen to be intermixed with the air, up to 100% oxygen. My guess is that dad knew dying from pneumonia would be horribly painful, emulating drowning in some ways. The BiPAP mask may have been his way to avoid some of that pain. Unfortunately, it had two huge drawbacks. First, dad's glasses wouldn't fit with the BiPAP mask on. He had trifocals, and while I could get them in place, they were slightly off in height, just enough to be non-functional. I later learned that they could have fit the BiPAP mask around the glasses (although I asked about it at the time and was told no). Later that day I would rush out briefly to pick up my medications (in case I had to stay overnight a few nights), my dad's PEG tube feeding food (he never used it), some stuff for my mom, and materials to modify his glasses to fit the BiPAP mask. He never did wear his glasses again -- by the time I had the materials to modify the glasses, he never got to the point where he was interested in wearing them.<br />
<br />
The thing I think he didn't consider about the BiPAP mask is that it is like a mini hurricane when the patient tries to lift the mask to talk. If the patient doesn't lift the mask, the sounds are muffled. So once they fitted him with the mask, there would be no intimate whispers, no final lengthy conversations. Communications reduced to signs, words, sometimes sentences. We, of course, talked with him a lot. His inability to respond was probably more frustrating to him than anybody else. He couldn't see clearly or talk clearly due to the BiPAP mask. Layered on top of the hearing loss from the earlier chemo round, he was limited in his interactions with the world. Perhaps it was how he wanted it. He started to close his eyes more often, and at times he looked like he was dreaming peacefully. My heart imagines him dreaming of good days during those moments.<br />
<br />
They finally took dad to the ICU. This marked the second time my mom and I were forced to spend time away from dad. We followed his bed to the ICU, but they stopped us at the door and said they needed to be alone with him to get him set up and do the intake. We waited in the ICU waiting room. The ICU waiting room was decorated with borderline-depressing images so bland they were probably unnoticed by the others in the room. The television was blaring with an A&E show about a bounty hunter. Mom and I sat next to each other. We were told we would be called back soon, but it took nearly 45 minutes. Ultimately, we got back in by following a nurse through the doors. Not following protocol, but nobody complained.<br />
<br />
When we got in, I introduced myself to the nurse and asked the questions I had learned to ask during the last stay. The first question -- did he get Dilaudid yet? Yes. In better times, dad wasn't a big drinker and didn't use painkillers in a serious way. In fact, he often ignored his Vicodin prescription during the weeks leading to this day in favor of a simple Advil. So he was very sensitive to painkillers. And he'd asked for more than he usually asked for during his prior hospital stay. A smart doctor, in respiratory distress, very responsive to low dose Dilaudid, yet receiving a higher dose than normal. He wasn't going to suffer on the way out, and cancer wasn't going to get extra days of artificial life support during which it could torment him.<br />
<br />
Soon they wheeled dad out for a CT scan and again banished us to the ICU waiting room. They again took a long time before letting us in to see him. I suspect he was instructing the nursing staff at this point and wanted privacy to give some blunt instructions to them.<br />
<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 17:11:24 -0700<br />Subject: Ct done<br />
Dad just got back from ct scan. They wont yet let us in to see him. No real news for the moment but hopefully know more soon<br />
Sent from my iPhone **</span></blockquote>
We were in no mood to remain banished to the waiting room, so we were appreciative when the cardiologist came by, got us from the waiting room, and took us into the ICU so we could participate in the conversation with dad.<br />
<br />
<a href="http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2012/03/its-heavy.html" target="_blank">As I wrote two months ago</a>, during dad's past hospitalization, around 2:30 a.m. one night he developed a sinus tachycardia of around 120 beats per minute, and around 3:00 a.m. the nurse came in and said he had developed atrial fibrillation at around 140 beats per minute. When he heard that, he said "oh shit". On that night, the atrial fibrillation scared him, because he held out hope of beating the cancer, or at least delaying death, and he was starting to feel physically better. He was right, by the way. He had some good times after that night, cancer be damned.<br />
<br />
This night was different than that night in a key way: The cardiologist took us in, and told him that he was experiencing not just atrial fibrillation, but atrial flutter. The top of dad's heart was beating around 300 times a minute, but only about 1/3 to 2/3 of those impulses were being transmitted to the bottom of his heart. This time, dad didn't say "oh shit". In fact, he had little reaction at all. His body had already told him more than the cardiologist ever could. I again recited my understanding of dad's DNR instructions in front of dad and the cardiologist, and made sure that everybody understood his wishes.<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;"><br />** Email: Date: Wed, 18 Apr 2012 17:34:48 -0700<br />Subject: Update 17:27<br />
No ct results yet<br />
The cardiologist was just in. He said the prognosis was bad. He apologized for not having "anything good" to tell us.<br />
The top of dads heart is beating around 300 times a minute. About 1/3 to 2/3 of the electrical beat signals do not get transmitted to bottom of the heart, and they're trying to reduce that number. He says this condition doesn't usually yield cardiac arrest. The bigger problem he says is no oxygen from the lungs. Without oxygen "nothing works". So cardiologist is quite pessimistic.<br />
My subjective evaluation of his appearance and affect is also pessimistic.<br />
Mom and I are both having trouble seeking a path that ends with him going home, but of course we're hoping.<br />
Sent from my iPhone **</span></blockquote>
The medications dad needed to stabilize his heart were too much for his chemo-weakened veins. They had nothing but trouble putting in IV lines during dad's prior hospitalization, and this time they needed to put some medication in that was not well suited to a regular IV anyhow. They wanted to put in a central line (an IV that goes directly into a very large blood vessel, in this case a subclavian central line). He appeared to consent, but the nurse was no longer sure that dad was sufficiently alert to consent. Mom and I knew dad better than the nurse, of course, and we were able to see that he was sufficiently cogent to consent. Mom said to do it. Interestingly, dad then engaged in a conversation (such as he could, pulling the BiPAP mask to the side) asking the nurse about the preferred placement of the central line. The nurse's concern regarding dad's ability to consent was not without basis, however. He was periodically losing concentration, with his eyes rolling up or closing.<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;"><br />** Email: Date: Wed, 18 Apr 2012 17:56:06 -0700<br />Subject: Re: Update 17:27<br />
They are putting an emergency central line in. We are being sent out since it is a sterile procedure. Nurse refuses to accept dads consent because he's too sick and out of it. She is looking to mom for consent.<br />
They won't say it out loud, but he's crashing.<br />
Sent from my iPhone **</span></blockquote>
<a href="http://en.wikipedia.org/wiki/Oxygenation_(medical)" target="_blank">Blood oxygen saturation</a>. It seems like a rather arcane thing, but it turns out to be critical in situations like this. The math is pretty simple -- if there is enough oxygen in your blood, your brain and body work. As the oxygen level drops, your brain stops working right and your body takes measures to protect the organs and brain. Dad's blood pressure and pulse, combined with the increasing chill in his extremities, made it nearly impossible to get an accurate blood oxygen (SpO2) reading. The <a href="http://en.wikipedia.org/wiki/Pulse_oximeter#Indication" target="_blank">pulse oximeter</a> stopped working on his left hand fingers. They tried the right hand fingers, but no luck. I suggested his toes, since the socks were keeping his toes warm, but that worked only for a minute or two. They tried his ear lobe. Ultimately, they fitted him with a special SpO2 measurement device that read from the forehead. Since we were non-doctors, our focus was only on the machine readings we knew to be significant -- pulse, blood pressure, and SpO2. I was relieved to have the SpO2 reading available again, but it was dropping steadily and that was pretty distressing. I don't remember quite when in the sequence of all these things that the pulse oximeter stopped working, but it seems like it was around here, give or take an hour.<br />
<br />
The CT scan results were back and they were not good. The doctor took us back to the computer, spent some time logging in, and then walked us through the results. I've looked over my dad's shoulder at the x-rays and CT scans he would read since I was old enough to look over his shoulder, and I never quite figured out how he saw what mattered in those images. Just like my dad would sometimes do, the doctor walked us through my dad's CT results. <br />
<br />
I know that MCC is a terrible cancer, but at that moment it seemed to be possessed of a primal malevolent intelligence, and decided that if dad was going to rob it if the ability to inflict more pain, it would at least make his death as frustrating, inflicting one last round of bad luck or even irony. Dad's left lung wasn't sick. It showed some possible signs of slight pneumonia, but was in pretty good shape. It would be able to get plenty of oxygen to his brain and body -- if only the Merkel Cell Carcinoma had not wrapped itself around the left bronchial branch and squeezed it shut. The right bronchial branch was wide open, easy airflow in and out, and would be able to get plenty of oxygen to his brain and body -- if only it wasn't filled with fluid from pneumonia. So MCC left him with a functioning lung he couldn't use, and a compromised lung he could use. His SpO2 kept falling, and now we knew why.<br />
<br />
<blockquote class="tr_bq">
<br />
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 18:29:33 -0700</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Subject: Ct results</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Left lung better than right, pretty clear but left bronchial branch is </span><span style="font-family: 'Courier New', Courier, monospace;">totally blocked so he can't use that lung tissue. Right ling quite </span><span style="font-family: 'Courier New', Courier, monospace;">bad, lots of infection but open bronchi. They may insert left </span><span style="font-family: 'Courier New', Courier, monospace;">bronchial stent tomorrow. Central line going in now.</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Sent from my iPhone **</span></blockquote>
Dad had refused intubation but said (in very brief words due to the BiPAP mask) that he would consent to a bronchial stent. Such a stent would open up his left lung. I'm still not sure why a stent wasn't put in on an emergency basis. My non-medical guess is that with his heart in atrial flutter, they didn't think the additional anesthetic would be tolerated -- but I really don't know. I don't even know if he was still in atrial flutter.<br />
<br />
At this point, they were approaching a shift change. The ICU nurses work 12 hour shifts, and they usually kick out family members for an hour around shift change so that the outgoing shift and properly brief the incoming shift. I really didn't want dad to be alone at this point, and was starting to worry about how I would deal with the shift change "please leave for a bit" request. They required us to leave because they needed to create a sterile environment so they could put in the central line. That took care of the question of whether I would object to having to leave during the shift change. We were again banished to the ICU waiting room. <br />
<br />
I took the forced time away from dad as an opportunity to pull out my laptop and <a href="http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2012/04/back-in-icu.html" target="_blank">update dad's blog</a>. I wrote "He seems to be cogent, at peace, and just wants to stop hurting."<br />
<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;"><br />** Email: Date: Wed, 18 Apr 2012 18:47:17 -0700<br />Subject: Another post, doc dave doing worse<br />To: [Merkel Cell Google Group]<br /><a href="http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2012/04/back-in-icu.html" target="_blank">http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2012/04/back-in-icu.html</a> **</span></blockquote>
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 18:48:30 -0700</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Subject: Another post, doing worse</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">To: [Large bcc list of Dad's friends and relatives]</span><br />
<span style="font-family: 'Courier New', Courier, monospace;"><a href="http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2012/04/back-in-icu.html">http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2012/04/back-in-icu.html</a></span><br />
<span style="font-family: 'Courier New', Courier, monospace;">This has already been a long day. Going to be a long week no matter how</span><span style="font-family: 'Courier New', Courier, monospace;">tonight turns out. **</span></blockquote>
<br />
<br />
Soon enough the doctor came and told us the procedure went well. We were briefly allowed into the ICU and then kicked out so that they could x-ray dad to confirm the placement of the central line.<br />
<br />
Mom was starving and agonized over whether to get food downstairs. The x-ray was clearly going to take more than a couple of minutes. We asked around and going downstairs to the cafeteria was the only option. Although she ran down and was back with food in minutes, I regret not insisting that I pick up food for her. For a day filled with hard decisions and intense stress, it was one of the few things I think I should have known, at the time, to do differently. <br />
<br />
In the meantime, the room had cleared out and I took the opportunity to change the blaring waiting room TV channel to something I could ignore and turn the volume down to a level just loud enough that others would not feel the need to turn it up if they wanted to listen. I originally wanted to turn it off, but I was sure it would just get turned back on and then the person turning it on would of course crank up the volume. I wanted time with my thoughts.<br />
<br />
<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 19:21:05 -0700</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Subject: Re: Ct results</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">
Central line went in OK. They kicked us out (again) so they could xray him </span><span style="font-family: 'Courier New', Courier, monospace;">to confirm that the line was placed properly.</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">
His breathing is really labored. He is also getting serious discomfort </span><span style="font-family: 'Courier New', Courier, monospace;">with the BPAP [SIC should be BiPAP] mask. The doctor ordered another dose of hydromorphone with </span><span style="font-family: 'Courier New', Courier, monospace;">the goal not of eliminating pain but of relaxing dad enough so that he can </span><span style="font-family: 'Courier New', Courier, monospace;">allow the machine to breathe for him. </span><span style="font-family: 'Courier New', Courier, monospace;">Mom went to get dinner. She's rattled but seems to have accepted things are </span><span style="font-family: 'Courier New', Courier, monospace;">serious. **</span></blockquote>
They finally let us back in. We met the night shift nurse, and I was glad we had a nurse who seemed competent and caring. The oxygen level in dad's blood was dropping, and the nurse bumped the oxygen percentage in the BiPAP mask up to 75%. He mentioned that because dad didn't want to be intubated, once the oxygen percentage went to 100%, we would be out of options to bring up dad's SpO2.<br />
<br />
I again went over the DNR orders with the nurse during one of the periods when dad was cogent. He told the nurse "I don't want you to code me under any circumstances." This was apparently hospital shorthand for calling a code blue and trying to resuscitate him.<br />
<br />
Dad was working pretty hard to breathe, and the nurse would periodically speak his name quite loudly to make sure that he could be awakened.<br />
<br />
I told dad I loved him, and that his granddaughter had asked me to tell him that she loved him. My mom told dad she loved him. I kissed him on the forehead.<br />
<br />
I told the nurse that dad is a doctor, mom has spent 50 years married to a doctor, and I grew up in a doctor's family -- and we wanted him to not dumb down or soften the truth. My mom suggested we have that discussion outside. We walked outside, and I bluntly asked the nurse about whether I should go home. Basically, I told him that I knew it wasn't the kind of thing he could give accurate percentages for, but I was trying to figure out if it was more than 20% likely dad would pass away that night. If it was less than about 1 in 5, I would go home so that my mom could stay with him overnight and I could be with him the next day (I didn't want us to both be up for 24 hours, both fall asleep at the same time, and have my dad pass away then -- so the question was whether it was appropriate for us to keep him company in shifts). The nurse said that he had seen patients in my dad's condition recover, but he'd also seen them decline very quickly and pass away. He thought dad would probably make it through the night, but there was a real chance he wouldn't. He then said that in my shoes, he wouldn't go home. I thanked him then for his blunt advice, and I thank him now. Mom was also weighing taking shifts, but at this point we were both expecting to be there all night.<br />
<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 20:36:41 -0700</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Subject: Update 20:33</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">
He has central line and foley catheter. He is working extremely hard </span><span style="font-family: 'Courier New', Courier, monospace;">to breathe.</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">
I spoke with the nurse outside the room and told him I didn't want to </span><span style="font-family: 'Courier New', Courier, monospace;">go home and have my dad die while I'm home. He said in that case I </span><span style="font-family: 'Courier New', Courier, monospace;">should not go home. He said he didn't think it more likely than not </span><span style="font-family: 'Courier New', Courier, monospace;">that dad dies tonight but that it wasn't a remote risk either.</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">
Sent from my iPhone **</span></blockquote>
At some point, the nurse sought clarification of the DNR orders. He said that he understood my dad did not want to be intubated or resuscitated, but suggested that if his heart went into a bad rhythm, he "could be paddled" back into a normal rhythm. He asked my mom what she thought, as she was the person with the final word when my dad couldn't consent. I waited for a while, but I saw in her eyes that she knew my dad's answer was "no" but that it was too hard to say that about somebody she loved so much. I'm sure she would have eventually said it, but I stepped in and said "my understanding is that dad wouldn't want that, isn't that right mom?" She just nodded her head in agreement.<br />
<br />
My dad's SpO2 kept dropping, and the nurse increased his BiPAP oxygen to 100%. The SpO2 continued to drop. Some time around 9:30 dad stopped responding to the nurse with anything but perfunctory acknowledgments, and by 10:00 he was not responding at all. The nurse squeezed a muscle on his upper shoulder as hard as he could, yelled "Dr. Shuster" several times, asked dad to squeeze his finger, blink or open his eyes, but there was no response.<br />
<br />
At this point, I was regularly streaming tears. My mom warned me about her propensity to faint in really seriously bad situations -- I'd spend the night looking out for that.<br />
<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 22:09:13 -0700</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Subject: 22:07</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">
Unconscious. Unable to awaken him. Non responsive. No longer BPAP [SIC should be BiPAP] </span><span style="font-family: 'Courier New', Courier, monospace;">candidate per nurse. Nurse says death may be imminent.</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">
Sent from my iPhone **</span></blockquote>
My dad's left arm had the IV and a bunch of other stuff attached. His right arm was clear. Mom was sitting on his left and I was sitting on his right. I said something like "you're his wife -- would you like to switch places so you can hold him skin to skin without all this medical stuff in the way?" She started to amble around the bed, but stopped at the foot of the bed. She grabbed his feet and said "no, you stay there. I'm going to rub his feet. He always loved when I rubbed his feet." So there we were, me silently crying, holding his hand and arm, my mom with a sad, fixed determination, rubbing his feet and deep in thought.<br />
<blockquote class="tr_bq">
<br />
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 22:17:22 -0700</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Subject: Re: 22:07</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">
The nurse just brought Kleenex. So the nurse thinks we're at the about </span><span style="font-family: 'Courier New', Courier, monospace;">to need Kleenex phase.</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">
Mom says she is near vomiting.</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">
Sent from my iPhone **</span></blockquote>
My brother Michael responded almost instantly with an email "Me too. Its late here, but sleep isn't happening." <br />
<br />
I was fighting to strike a balance between feeling my emotions and retaining enough control to be there for my dad and my mom.<br />
<br />
The nurse observed the skin on dad's head and said that it had taken on a distinctive look that often is associated with impending death. I have no idea if that is a documented medical thing or just the nurse's experience, but he was right.<br />
<br />
It is worth observing that from the time that dad lost consciousness, he had a look on his face that was really peaceful. He had a look that was entirely consonant with his remembering the great times in his life, running down the beach with his wife, enjoying family birthdays, all good stuff. His body may have been shutting down, but he wasn't suffering. He sure looked like his consciousness was in a good place, a place the pain couldn't reach but where the good memories were easily found.<br />
<br />
The nurse said "it's happening". I was holding dad's hand. I looked up at the EKG machine and saw a single, final heartbeat and then a flat line. I looked back at dad. I said "I love you, dad" and leaned in and kissed him on the forehead. After some time (seconds? a couple minutes?) I stood up, tears running down my cheeks, and walked over to my mom, who was sitting on a chair against the wall, a few feet from the foot of the bed. I hugged her and asked "mom, what can I do here, what do you need?" My said, in a voice I'd never heard her use before, "tell them to get all that stuff off of him so I can hug him one last time."<br />
<br />
I walked to the nurse and told him, my words by now interspersed with sounds of crying. The nurse said he was on it, and within seconds my dad's body was clear of all of the medical equipment. She held him. <a href="http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2012/05/eulogy.html" target="_blank">I described what I observed in my eulogy, and the written version is part of this blog as a separate post</a>. This post is about my dad's last day of life, and sadly he died at 10:55 p.m.<br />
<br />
This isn't the kind of news you can deliver to your wife or brothers by email, so I called them. I called my youngest brother first, since it was the middle of the night there already. My phone bill shows it was a 3 minute call, and I'm sure I spent the first two minutes of that just sobbing, unable to say the words he knew were coming. The remainder of the calls were more cogent but no easier to make. Finally, I let dad's online family of fellow MCC fighters know the bad news.<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Wed, 18 Apr 2012 23:13:51 -0700</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Subject: docdave passed away</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">To: [Merkel Cell Cancer Google Group]</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">
Will be a blog post after I get my thoughts together. He died 10:55 pm **</span></blockquote>
Dr. Nghiem played a critical role in dad's care, and while I focused strongly on family in the days and weeks following dad's death, I wrote Dr. Nghiem first thing in the morning the day after my dad's passing:<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Date: Thu, 19 Apr 2012 08:16:56 -0700</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Subject: Dave Shuster</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">From: Gary Shuster []</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">To: Paul Nghiem []</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">
Dr. Nghiem</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">
Thank you so much for the support you provided my dad. He died last night. </span><span style="font-family: 'Courier New', Courier, monospace;">Some people would like to make donations to MCC research in his name. </span><span style="font-family: 'Courier New', Courier, monospace;">Could you please provide me with the information I need to put into </span><span style="font-family: 'Courier New', Courier, monospace;">obituaries to instruct people as to how to make those donations?</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">
Again, thank you for what you did for him. I don't think anything could </span><span style="font-family: 'Courier New', Courier, monospace;">have extended his life beyond the years he had, but thanks to you the </span><span style="font-family: 'Courier New', Courier, monospace;">treatments he underwent were not the debilitating and ultimately unhelpful </span><span style="font-family: 'Courier New', Courier, monospace;">ones such as a radical neck dissection. Thanks to that, he was able to </span><span style="font-family: 'Courier New', Courier, monospace;">take many cruises and vacations and enjoy birthdays with his grandkids. **</span></blockquote>
His response, as always, was prompt and written from the heart.<br />
<blockquote class="tr_bq">
<span style="font-family: 'Courier New', Courier, monospace;">** Email: Subject: Re: Dave Shuster<br />From: Paul Nghiem []<br />Date: Thu, 19 Apr 2012 09:36:39 -0700<br />To: Gary Shuster []<br />
Dear Gary,<br />
I am so sorry for your loss.<br />It was a pleasure and an honor to take care of your Dad & to follow his remarkable journey/battle as chronicled by such a humanistic, articulate physician.<br />
Thank you for thinking of others with MCC at this time regarding donations in honor of your Father.<br />Relevant information is below, and can be obtained directly via:<br /><a href="http://www.merkelcell.org/help/index.php">http://www.merkelcell.org/help/index.php</a><br />
Paul Nghiem **</span></blockquote>
<br />
I made many promises to my dad on his final day, but three stood out. First, I promised to make sure the medical staff would honor his wishes with regard to treatment, and they did. Second, I promised to make sure I would be there for mom, and it is a promise I carry with me, and intend to keep for the remainder of her life. Third, I promised to document his last day for his blog. <br />
<br />
<br />
This extremely lengthy post attempts to keep that last promise. I know that dad understood the cathartic nature of posting to the blog, and at some point writing this entry, I realized I was as much keeping my promise to him as I was helping myself to understand the enormity of that day. I suspect the promise to update his blog was intended not just to make sure the ending of his story was told, but to help his eldest son heal in the telling of it. It was as much a gift to me as a promise to him.<br />
<br />
We spent weeks together in the hospital, and there was little left unsaid between us. I loved him as a father. I loved him as a friend. I will miss him.<br />
<br />
I sign this post using the same Jewish nomenclature I used when I signed the memorial book at his funeral:<br />
<br />
Gary, son of David; Gershon ben David<br />
<br /></div>Gary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com2tag:blogger.com,1999:blog-1205690253746006152.post-91107594760798379892012-05-02T13:37:00.000-07:002012-05-02T14:37:52.182-07:00EulogyI wrote the following as the eulogy I intended to deliver at dad's funeral. I ended up delivering a somewhat different version (the reality of speaking at a funeral is that it is a rare person who delivers written remarks without giving in to emotionally-driven spontaneous changes).<br />
* * *<br />
<br />
<div class="MsoNormal">
I am planning to cry, so please bear with me if I need a
minute during this.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ve given eulogies before, but I’ve stuck with facts,
praise, and prose. Dad deserves that
kind of praise and prose, and he’ll get it from me and others. But I had the privilege of spending weeks
living with him in the hospital, switching nights with my mom, and helping him
as he did thing after thing for the very last time. It was hard to watch him suffer, but I am
grateful I was able to give him the gift of companionship, the gift of making
sure the hospital followed his wishes, and to enjoy the gift we gave each other
of leaving nothing unsaid between us. So
instead of talking about how great a dad he was – and he was, and you’ll hear
that over and over today – and instead
of offering a biography, I want to share his last moments with you. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m coming to grips with the fact my grandfather was the
patriarch of the family just five years ago, dad was the patriarch until Wednesday,
and that role now rests with me. But
that also means that dad isn’t 71 years old anymore. He isn’t old, or sick, or worried, or
battling cancer. I see him reflected, as
if he were still alive, in the things my daughters do day to day, in my brothers’
kindness, in my mother, and frankly in my drive to do the right thing no matter
the personal cost – particularly when the right thing involves keeping my
family happy and safe.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We die as we live, and his last day told the story of his
life. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He lived as a strong man, a man who knew what he
wanted. On his last day, he knew he was
going to die, and he didn’t want to suffer.
In the morning, he told mom he was in respiratory failure, and she
called for an ambulance. As he left his
home for the last time, even struggling to breathe, he was having a technical
discussion with the paramedics about his condition, he liked the details of
stuff and he loved medicine. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Mom and I drove to the hospital and after a long wait they
let her in to see him. Mom came out and
said they only would give one pass and asked if I wanted to use the pass to go
in. Mom was the love of his life and I
knew he needed her by his side. I told
her that and she just nodded. Of course,
she knew it too. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Mom is crafty, and eventually got the doctor to give me a
pass. When I got back there, I insisted
that the doctor talk with us about dad’s DNR wishes. Dad was a bit out of it, but immediately
engaged. “I do not want to be
resuscitated under any circumstances.”
The doctor said intubation would help him breathe. Dad said “I refuse to be intubated. Instead of intubating me, just shut me down
with morphine. I’ve just about had it. I’ve had enough.” This is a man who was wrote on his blog that
he was going to shoot the last chemo arrow in his quiver days before – but
today a man who had finally concluded he was beyond any reasonable chance for a
meaningful recovery. I leaned in and
promised him that we would take good care of mom no matter what happened. You could just see him relax. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dad always knew what he wanted in life, and it was no
different in death. The greatest gift
mom and I were able to give dad was making sure his wishes were honored. It was also the most expensive gift I ever
gave, since I loved him so much and he was asking us to let the doctors let him
die. But he was a good man, a good
father, and he had long ago earned the right to have me fight to make sure he
would be able to exit in the way of his choice.
I gave him my word, and I made sure the doctors and nurses followed his.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We waited for a chest x-ray.
Dad was interactive, even smiled a bit.
Then the results, pneumonia confirmed.
The doctor offered a BiPAP mask, which is a non-invasive mask that
covers the mouth and nose and when you breathe, kicks up the pressure to force
air in. Dad was cogent and said he
wanted it. They fitted him with it, and
he couldn’t talk easily once it was on. Just as bad, he couldn’t wear his trifocals
over the mask’s seal. I knew he expected
this to be his last day when he refused intubation, but I saw impatience in his
eyes when he realized he couldn’t talk or even see properly.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
They took him to the ICU, but didn’t let us in for a
while. By the time we got in, dad had
asked for Dilaudid painkiller. He was
still cogent, but his plan was in action.
He looked each of us in eye. He
responded when we held him. The details
from then on aren’t critical – he eventually lost consciousness. Dad would never wake up again, but this is
where the real story of dad’s life was told.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
His left arm was covered with IVs, tape, and other medical
stuff. His right arm was clear. My mom was standing next to his left arm, and
I was holding onto his right. It didn’t
seem right, and I asked her if she would switch so she could touch his skin
more easily. She paused, then walked to
the end of the bed and said “no, he always loved when I rubbed his feet. I want him to feel me rubbing his feet.” She knew him so well, and loves him so much.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Eva had asked that I tell him she loved him, so I kissed him
and said “Eva wanted me to tell you she loves you, and I love you too.” Mom said “I love you” and kissed him.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’d spent so much time at the hospital that I knew how to
read a lot of the machines, and I saw dad was about to go. The nurse said “it’s happening”. Mom rubbed his feet, held him. I held his arm and cried softly. He died the way he lived – with his family at
his side, respecting his wishes, and on his own terms.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I looked up and saw mom sitting in a chair at the foot of
the bed. I kissed dad once more on the
forehead – his heart had stopped but I hoped he could still feel my love – then
I walked to mom, hugged her, and asked
her what she needed. In a strong,
painful voice she said “I need them to take all of that stuff off of him so I
can hug him, so I can hold him one last time.”
I told the nurse and he complied in seconds.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then I saw the most terrifying and beautiful thing I’ve ever
seen. Something that was simultaneously
the stuff of nightmares and the stuff of the endings of the most beautiful
Disney princess stories. My dad’s body,
his mouth slightly open, still, not breathing, and my mother holding him. She was holding him lightly in a physical
sense, but it was the strongest hug I’ve ever seen.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I know that in intense situations people see things that
aren’t real, but what I saw next I will believe to my grave to be real. Dad’s body looked full. It will still, he was dead, but even in death
it was full. And with every second mom
held him, dad’s body emptied and mom’s grew fuller. I could see him going into her. She held him until I saw that migration
finish, then, like she knew it was complete, she looked up, let go, and told me
that that was the last time she would ever be able to hold him.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Not true, mom. I’m
not a religious man. I do know that
nothing in the universe is ever destroyed; it can change form, but is never
gone. I don’t know how I saw what I saw,
I don’t know if it was really visible or just my realizing what it means to
spend 50 years madly in love. But what I
do know is that dad is with you, whatever spirit he has, however it manifests,
you carry him with you for the rest of your days.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I don’t expect you to suddenly follow the NCAA. I know it isn’t literally that there are two
people in your body, but the story of your lives was so intertwined with your
love that at the moment of his death your merger became complete. At the time I couldn’t figure out why you had
such an urgency to give him a full body hug, with all the medical stuff gone,
but when I saw what happened, I knew.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
You hold in you all of the love you share. Everybody should be so lucky to draw that much
love, enough love to sustain you the rest of your days.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I love you dad. I’ll
honor you by being the best dad and the best man I can be.</div>
<div class="MsoNormal">
* * *</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The funeral was recorded on video and was uploaded in three parts. Many voices spoke about my father, and each deserves to be linked from his blog. Parts <a href="http://youtu.be/gqbqCwlp62M" target="_blank">one</a>, <a href="http://youtu.be/XAGrCoaWGuk" target="_blank">two</a>, <a href="http://youtu.be/u3H_w4heF3U" target="_blank">three</a>.</div>Gary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com1tag:blogger.com,1999:blog-1205690253746006152.post-43194538738667987552012-04-22T08:08:00.001-07:002012-04-22T08:08:17.608-07:00Thank you, MCC Google Group<span style="font-family: arial; font-size: x-small;">I wrote an email to the Google Group for MCC (</span><a href="http://groups.google.com/group/merkelcell">http://groups.google.com/group/merkelcell</a><span style="font-family: arial; font-size: x-small;">), which is a private group for those battling Merkel Cell Cancer and for the people fighting alongside them (if you have MCC or are supporting somebody with MCC, you really need to join that group). I realized after writing it that my dad would have wanted me to share my thanks and thoughts for this group more broadly. The email I sent is as follows:</span><br />
<span style="font-family: arial; font-size: x-small;"><br /></span><br />
<span style="font-family: arial; font-size: x-small;">Thank you all for your wishes and your kind praise of dad.</span><br />
<div style="font-family: arial; font-size: small;">
<br /></div>
<div style="font-family: arial; font-size: small;">
I've linked the obituary at his blog <a href="http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2012/04/obituary.html">http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2012/04/obituary.html</a> </div>
<div style="font-family: arial; font-size: small;">
<br /></div>
<div style="font-family: arial; font-size: small;">
His memorial service is today, and while I'm not going to be distracted with technological issues, I do plan to set up a video camera to capture the event. Since you've become his family in the same way that soldiers fighting a battle side by side become family, In a war, there are many battles. Some warriors are felled in battle. Some throw themselves into the path of danger to protect others (as with experimental surgeries). Some mentor other soldiers, preparing them to survive their part in the way (a role my dad took on). Some get lucky and survive, and some powerful warriors are less lucky. But in the end, spending years with a band of brothers and sisters fighting a heartless, inhuman beast turns strangers into family. And so it was for my dad. He implicitly sought a promise that I'd care for my mother, but the only explicit promise he asked of me on his last day was that I update his blog if he didn't make it. This family, forged in a shared, frightening common battle against a heartless beast, this family forged in common support and empathy, this family that met not in person but in heart, this family was on his mind on his last day. As well it should have been. He died with me at his side, with his wife at his side, with his children and grandchildren in his heart, and with your thoughts and presence surrounding him. Thank you for that.</div>
<div style="font-family: arial; font-size: small;">
<br /></div>
<div style="font-family: arial; font-size: small;">
I'd like to post the memorial so you can watch it. I'm not going to be babysitting the video camera, so if there is a technical failure to record the video, so be it. But if things go as planned, after a few days I'll be able to put up a link to the video.</div>
<div style="font-family: arial; font-size: small;">
<br /></div>
<div style="font-family: arial; font-size: small;">
I see about 3 more posts to the blog. "Eulogy", "Dying", and "The Future" are likely titles. I intend to post the eulogy I wrote for him after I deliver it today. I've been drafting a pretty detailed account of his last day called "dying" (incredibly hard to write, but he found it so important to bluntly share his experiences to help others prepare for what they might face). I then intend to close with a post about the future, although the ideas about that are kind of amorphous so I'm not sure if that post happens or if it happens the way I'm thinking about it today.</div>
<div style="font-family: arial; font-size: small;">
<br /></div>
<div style="font-family: arial; font-size: small;">
After the last substantive blog post, I'm considering a fundraising and patient support blog post. This would be links to a PDF version of his blog, a print version, and perhaps a Kindle format version. They would be available at cost (so PDF free, ebook free, if distributed via Amazon the minimum cost, physical book probably expensive even sold at cost). Patients need support, and family, friends and patients would be encouraged to use the book without paying. For those who find value in the book and who are able to afford it, I would include information about how they can pay what they wish, donating to MCC research donate voluntarily in exchange for the book.</div>
<div style="font-family: arial; font-size: small;">
<br /></div>
<div style="font-family: arial; font-size: small;">
I'm off to prepare to bury my father. I'm having a hard day, but having just read this thread of comments [a set of emails sent by MCC group members in response to my post that he had died], my day is that much easier.</div>
<div style="font-family: arial; font-size: small;">
<br /></div>
<div style="font-family: arial; font-size: small;">
The power of community cannot be overstated, and the power of this community is particularly strong.</div>
<div style="font-family: arial; font-size: small;">
<br /></div>
<div style="font-family: arial; font-size: small;">
Thank you for your love. I know my dad was grateful for your support to the end, since he went out of his way to expressly say so. He was fitted with a BiPAP mask much of the day, so he spoke perhaps a thousand words or less on his last day and he reserved some of those for you. I'm glad he did so. You deserve it. </div>
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<br /></div>
<div style="font-family: arial; font-size: small;">
Now I ask each of you to honor him by beating your own MCC. Please make my father one of the last to die by this disease. You've described it as a beast and a bully and by all manner of other names, as my dad did, but ultimately it is just some cells in your own bodies making the horrible mistake of thinking that they should keep on reproducing. It isn't an intelligent enemy or even a powerful enemy. It is nothing more than a biological mistake. This isn't to underplay how virulent it is -- it took my dad, a powerful, determined, brilliant man. But this isn't an intelligent enemy or even a particularly crafty enemy. It is a mistake of biology, and it will be beaten. I know it is disheartening to see a warrior like my dad lose his battle, but it would be a tragedy if his death were to do anything but strengthen each of your resolve to beat this thing.</div>
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<br /></div>
<div style="font-family: arial; font-size: small;">
I know that this group has been very civil and avoided language that wasn't family friendly, but in the heat of the moment, waiting to be let in to see my dad, I posted something to facebook that captured my feelings about MCC. In the law, we make an exception to the hearsay rule for an "excited utterance", under the theory that when somebody is experiencing an enormously emotional, critical moment, they aren't going to lie and they will speak what they're really thinking. So here is the post, which expressed in no uncertain terms what I was thinking at the moment: "Just had the surreal experience of following an ambulance carrying my dad to The hospital. spO2 well <80% possible atrial fibrillation, irregular heart rate ranging from what I saw up to 180. Fuck you, cancer." </div>
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<br /></div>
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As I prepare to bury my father, let me say that "Fuck you, cancer" was, if anything, too kind to cancer. Cancer, you're taken my dad away from his grandchildren. You've robbed his MCC group family of his wit, advice and love. You've made my mom a widow. You've made me the patriarch of my family at 45. You've sent a man who could have saved hundreds or thousands of lives practicing medicine for another decade or two to the grave. You, cancer, must die. You faced a resolute foe in my dad and beat him, but he wasn't your only enemy. There are leaders like George and Audi who are organizing forces against you. You have smart and creative enemies like Paul Ngheim who are preparing to crush you as surely as you've crushed lives and families. Your days are numbered, and when they write your obituary, I'll be proud of my dad's role as a member of the force that fought against you helped put you in the ground.</div>
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<br /></div>
<div style="font-family: arial; font-size: small;">
I love my dad and I'll miss him. I know you all feel the same way. Thank you, on his behalf, not just for the strength you provided him, but for the opportunity to give him to chance to beat MCC if not in himself, at least in the others he helped along the way.</div>Gary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com2tag:blogger.com,1999:blog-1205690253746006152.post-23393670833575115972012-04-21T12:50:00.005-07:002012-04-21T12:50:42.982-07:00ObituaryThe following obituary ran in dad's hometown newspaper:<br />
<br />
<br />
<div class="MsoNormal">
DAVID NORMAN SHUSTER, M.D.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dave Shuster died on April 18, 2012 after fighting a
courageous battle with Merkel Cell Carcinoma.
He was born on Aug. 18, 1940 in Montreal, and <a href="" name="_GoBack"></a>moved
to Fresno in 1976. He was a talented
diagnostic radiologist well respected within the medical community.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Dave met his wife, Judy, more than 50 years ago. He was a loving father to his three children,
Gary and his wife Dana, Brian, and Michael and his wife Leanna. He was blessed with 5 grandchildren, Eva,
Sara, Sammie, Bel, and Eli. He is also
survived by his mother, Isobel and his siblings, Jon, Robert and Ellie.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In addition to his professional and family accomplishments,
he achieved the rank of gold life master in bridge. He also always had a fun time with his poker
buddies. He never missed an opportunity
to play with his grandchildren.</div>
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<br /></div>
<div class="MsoNormal">
A memorial service honoring his life is scheduled at Temple
Beth Israel for Sunday, April 22 at noon.
In lieu of flowers, remembrances may be made to Merkel Cell Carcinoma
Research (details at http://donate.shuster.com) or to Temple Beth Israel at
6622 N. Maroa Ave., Fresno 93704.</div>
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<br /></div>
<div class="MsoNormal">
The world is a better place for Dave’s being here. He lives on through his children,
grandchildren, and kind deeds. </div>
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<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcjmWSvSeNPu-th_cghgzzdlBkWx8r2bD2rbao6zOFDGTcGvmQO6Yqr_Qo7Uwdn_pTPQ4j2qNexE8OheOfvb7yyQ4knPjzH0V569ZdN4KQKsvYFZ0xi2KNk0d5MS8yO2yD2eAF1SRwhj2U/s1600/eva-took-on-cruise-1-smaller.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcjmWSvSeNPu-th_cghgzzdlBkWx8r2bD2rbao6zOFDGTcGvmQO6Yqr_Qo7Uwdn_pTPQ4j2qNexE8OheOfvb7yyQ4knPjzH0V569ZdN4KQKsvYFZ0xi2KNk0d5MS8yO2yD2eAF1SRwhj2U/s320/eva-took-on-cruise-1-smaller.jpg" width="313" /></a></div>
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<br /></div>Gary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com3tag:blogger.com,1999:blog-1205690253746006152.post-14624067473705689432012-04-20T00:59:00.002-07:002012-04-20T00:59:35.322-07:00DeadDad died at 10:58 p.m. on April 18, 2012. He was 46 days away from his 50th wedding anniversary. In the week prior to his death, he conducted a Seder, watched his granddaughter open birthday gifts, watched Stanley Cup hockey, considered treatment with Votrient, and saw his doctor. He even saw a concert a couple of weeks ago.<br />
<br />
When he first got to the ICU on April 18, he asked me to please update his blog if he died. I promised I would. I will expand this post further as I get my thoughts together. I don't want to post too much until I can do so cogently.<br />
<br />
I miss him already.Gary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com8tag:blogger.com,1999:blog-1205690253746006152.post-37162197319142821112012-04-18T18:46:00.002-07:002012-04-18T18:46:43.565-07:00Back in the ICUDad is back in the ICU. His situation is very serious.<br />
<br />
CT scan results showed that the left lung is better than the right, but the left bronchial branch is completely closed off (presumably tumor pressing it shut). The right bronchial branch is fully open, but the right lung is very compromised with pneumonia. There is some pleural effusion. <br />
<br />
One of the nurses and one of the doctors, on different occasions, said that the outlook was very bad.<br />
<br />
Other than the Dilaudid causing him to be a bit loopy, he is very cogent when his O2 saturation is good. When it isn't good, he is very out of it, eyes rolling back, etc. His O2 saturation ranges from 70% to 100%. He is on a BPAP mask as he refused intubation. He has also given a very broad do not resuscitate order. In relation to the intubation refusal, he said, paraphrasing, "instead of intubating me, just shut me down with morphine. I've just about had it. I've had enough."<br />
<br />
His breathing is very labored. It reminds me a lot of when my daughter Eva was a newborn and developed RSV. You can see his stomach trying to suck in to help draw air into the lungs.<br />
<br />
He seems to be cogent, at peace, and just wants to stop hurting.<br />
<br />
I love him. I hope tonight goes the way he wants it to.Gary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com2tag:blogger.com,1999:blog-1205690253746006152.post-13722503637817087142012-04-18T10:57:00.004-07:002012-04-18T10:57:52.215-07:00Following an ambulanceIt is a surreal experience to follow an ambulance with your father in it.<br />
<br />
I got a call around 9 am from my mom saying that my dad is in severe respiratory distress and he doesn't think he can make it to the hospital in a car. My mom said she was probably going to call an ambulance. I told her I agreed, call the ambulance. I arrived there just as the paramedics (full fire truck + ambulance -- I paid my taxes yesterday, and all of my annoyance at writing that check is gone with this demonstration of what those taxes pay for) were getting there.<br />
<br />
My mom and I filled the paramedics in.<br />
<br />
My dad is currently in the ER being seen. There is a one-visitor-at-a-time policy, and I'm sure my dad would be more comfortable with his wife at his side, so I'm patiently waiting in the waiting room. The doctors are confirmed atrial fibrillation. They also hear a wheezing noise they don't like and they're taking him in for a chest x-ray. I assume the cancer impinging on the bronchi is making them worry about pneumonia, but I'm not even close to being a doctor so that is just guessing.<br />
<br />
I'm post more when there is more. At this point, it is all scary, sad, and a great unknown.Gary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com1tag:blogger.com,1999:blog-1205690253746006152.post-48818091814086788812012-04-16T13:26:00.000-07:002012-05-02T14:28:54.930-07:00About the Author -- Curriculum Vitae<br />
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: center 3.25in; text-align: justify;">
<b><span style="font-size: 12pt; letter-spacing: -0.15pt;"> CURRICULUM
VITAE</span></b><span style="font-size: 12pt; letter-spacing: -0.15pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: center 3.25in; text-align: justify;">
<b><span style="font-size: 12pt; letter-spacing: -0.15pt;"> DAVID
N. SHUSTER, M.D.</span></b><span style="font-size: 12pt; letter-spacing: -0.15pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<b><span style="font-size: 12pt; letter-spacing: -0.15pt;">PERSONAL DATA:</span></b><span style="font-size: 12pt; letter-spacing: -0.15pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Date of Birth: August 18, 1940<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Place of Birth: Montreal, Canada<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Marital Status: Married (Judy)<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Address: [redacted]<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Fresno,
CA 93720<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Telephone: Business: [redacted]<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Home: [redacted]<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<b><span style="font-size: 12pt; letter-spacing: -0.15pt;">EDUCATION:</span></b><span style="font-size: 12pt; letter-spacing: -0.15pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> COLLEGE: McGill University<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> B.S.,
1961<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> MEDICAL SCHOOL: McGill University<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> M.D.C.M.,
1966<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> INTERNSHIP: Jewish General Hospital-Montreal<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> June
1966 - June 1967<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> RESIDENCY: Jewish
Hospital-Brooklyn, N.Y.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Obstetrics
and Gynecology<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> June
1967 - December 1967<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Brookdale
Hospital-Brooklyn, N.Y.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Pathology<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> January
1968 - June 1968<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> McGill
University-Jewish General Hospital<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Radiology <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;">
July 1968 - June 1971<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<b><span style="font-size: 12pt; letter-spacing: -0.15pt;">PRACTICE:</span></b><span style="font-size: 12pt; letter-spacing: -0.15pt;"> Diagnostic Radiology<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> St.
Mary's Hospital, Montreal<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> June
1971 - August 1976<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Saint
Agnes Hospital, Fresno, California<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> September
1976 - April 1993<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Fresno
Imaging Center Medical Group<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> May
1993 – December 2004<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Sierra
Imaging Associates Medical Group<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> January
2005 to present<o:p></o:p></span><br />
<span style="font-size: 12pt; letter-spacing: -0.15pt;"><br /></span><br />
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> [Note that this version of the CV predated his work at Kaiser]</span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<b><span style="font-size: 12pt; letter-spacing: -0.15pt;">LICENSES/CERTIFICATIONS:</span></b><span style="font-size: 12pt; letter-spacing: -0.15pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> L.M.C.C. 1968<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> National Board of Medical Examiners 1967<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Certified Specialists of Province of
Quebec 1971<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Fellow of Royal College (by
examination) 1971 <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Royal College certification
(Radiology) 1971<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Diploma of American Board of
Radiology 1972<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> California Certificate Number [redacted]<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<b><span style="font-size: 12pt; letter-spacing: -0.15pt;">MEMBERSHIPS:</span></b><span style="font-size: 12pt; letter-spacing: -0.15pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Fresno-Madera Medical Society<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> California Medical Association<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-hyphenate: none; tab-stops: -.5in; text-align: justify;">
<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Central Valley Radiological Society<o:p></o:p></span></div>
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<span style="font-size: 12pt; letter-spacing: -0.15pt;"> California Radiological Society<o:p></o:p></span></div>
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<span style="font-size: 12pt; letter-spacing: -0.15pt;"> Radiological Society of North
America<o:p></o:p></span></div>
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<span style="font-size: 12pt; letter-spacing: -0.15pt;"> American College of Radiology<o:p></o:p></span></div>
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<b><span style="font-size: 12pt; letter-spacing: -0.15pt;">CLINICAL ASSISTANT PROFESSOR:</span></b><span style="font-size: 12pt; letter-spacing: -0.15pt;"> U.C.S.F.<o:p></o:p></span></div>
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<span style="font-size: 12pt; letter-spacing: -0.15pt;"> 1980
- 2000<o:p></o:p></span></div>
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<b><span style="font-size: 12pt; letter-spacing: -0.15pt;">LECTURER IN RADIOLOGY:</span></b><span style="font-size: 12pt; letter-spacing: -0.15pt;"> McGill University<o:p></o:p></span></div>
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<span style="font-size: 12pt; letter-spacing: -0.15pt;"> 1973
- 1976<o:p></o:p></span></div>
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<b><span style="font-size: 12pt; letter-spacing: -0.15pt;">PUBLICATIONS:</span></b><span style="font-size: 12pt; letter-spacing: -0.15pt;"> Shuster, D., Palayew, M.J., "Accordian-Like
Compression of a Calcified Splenic Artery: A Plain Film Roentgenographic Sign
of Splenic Enlargement". <u>AJR 116:423-425</u>, 1972.<o:p></o:p></span></div>
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<br /></div>Gary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com0tag:blogger.com,1999:blog-1205690253746006152.post-1780907382336895192012-04-14T17:13:00.000-07:002012-04-14T17:13:15.442-07:00PET Results<span class="Apple-style-span" style="font-size: large;">Friday, I had a PET scan. it looks like the Topotican did me no good. A 3 cm node in the gastrohepatic area now measures up to 8 or 9 cm, pressing on my stomach. The esophageal mass is also larger, and may be compressing my left main bronchus. I have had respiratory difficulties with 2 episodes at night of what seemed like acute asthma. I am now on home oxygen and with it, attempted to go upstairs for a shower. That was a failure as I had the third asthma-like attack. </span><br />
<span class="Apple-style-span" style="font-size: large;">It looks like I have a choice of waiting to die or going on Votrient. I somehow doubt my Insurance will pay and I think it will cost a lot of money.</span><br />
<span class="Apple-style-span" style="font-size: large;">Dr. Nghiem is encouraging about this, saying it helps in about 50% of cases and if Dr Bhatia and Dr Flam agree (Appointment with Dr Flam Monday), this seems to be the last arrow in my quiver.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br />
</span>Anonymousnoreply@blogger.com3tag:blogger.com,1999:blog-1205690253746006152.post-80405812538712607672012-04-09T11:38:00.000-07:002012-04-09T11:38:31.845-07:00Status Quo except increasing right sided pain<span class="Apple-style-span" style="font-size: large;">Here is the latest update of my physical and mental status.</span><br />
<span class="Apple-style-span" style="font-size: large;">I am awake and oriented, relatively alert although with decreased ability to concentrate.</span><br />
<span class="Apple-style-span" style="font-size: large;">Last Friday night, we had a miniature Seder with Gary, Dana, Eva, Sara and Bel. A very much abbreviated service in which the Four Questions were asked and the Afikomen was hidden was followed by a great dinner, of which I was only able to partake of a small amount. The highlight was gifts given to the girls for returning the Afikomen.</span><br />
<span class="Apple-style-span" style="font-size: large;">Judy worked very hard to make this a success.</span><br />
<span class="Apple-style-span" style="font-size: large;">We went to see the Trans Siberian Orchestra on Tuesday at the SaveMart Center and I was able to stay for much of the show. Brian was in town for a follow-up visit with his Doctor so we got an extra ticket for him. It was a great show.</span><br />
<span class="Apple-style-span" style="font-size: large;">I have been able to climb the stairs with some difficulty and to take showers in our upstair shower, much better than sponge baths in the downstairs bathroom. I was also able to lie down in our bed, a pleasure very much missed in the past few months.</span><br />
<span class="Apple-style-span" style="font-size: large;">We have had a few close friends come for brief visits.</span><br />
<span class="Apple-style-span" style="font-size: large;">My heart rate is generally well controlled in the mid 80's by Amiodarone, 200 mg bid. I am also taking Prilosec, 200 mg BID as well as medication to shrink my prostate to combat occasional urgency incontinence, a sleep aide, and pain medication. Aleve twice daily seemed to work well, but I have been having worsening right sided upper back pain and right rib pain for which I have just resumed taking hydrocodone. I seem to be improved this morning. My shortness of breath also seems improved.</span><br />
<span class="Apple-style-span" style="font-size: large;">I fear this pain is due to bone metastases, and will have a PET scan next week to shed some light on this problem and determine the extent of disease.</span><br />
<span class="Apple-style-span" style="font-size: large;">Although with the esophageal stent present, I can eat almost anything, but I have little desire to eat. Perhaps it is because of dry mouth, for which I am using Biotene with some relief. Most of my calories are ingested through my gastrostomy tube. I do have some symptoms of gastric overfilling and worry about the cancer pressing on my duodenum.</span><br />
<span class="Apple-style-span" style="font-size: large;">But enough drowning in self pity.</span><br />
<span class="Apple-style-span" style="font-size: large;">The sky is clear. It's warm ouside. I shall sit out and catch some rays.</span><br />
<span class="Apple-style-span" style="font-size: large;">I can get around quite well with my walker. </span><br />
<span class="Apple-style-span" style="font-size: large;">It is only 1 1/2 months until Judy and I celebrate 50 years of marriage.</span><br />
<span class="Apple-style-span" style="font-size: large;">Sara turns 5 today. She and Bel will visit this afternoon.</span>Anonymousnoreply@blogger.com4tag:blogger.com,1999:blog-1205690253746006152.post-73392244479240752702012-03-28T16:15:00.000-07:002012-03-28T16:15:51.356-07:00I'm Still Alive<span class="Apple-style-span" style="font-size: large;">The events of the past 6 weeks or so have brought me close to death but failed to do me in. Although my head is not as clear as it was, I will attempt to recount my brushes with the grim reaper.</span><br />
<span class="Apple-style-span" style="font-size: large;">About 5 11/2 weeks ago, sleeping on my recliner, I needed to get up, for some reason. I was sedated with a phentonyl patch. I remember losing my balance, getting up and then falling head first into the glass door to the back of the house. Helped back onto the recliner, I slept the night, with a lump the size of a lemon on my forehead. Herb Boro called Judy the next morning and asked if there was anything he could do. He came to the house and immediately he and Judy took me to the hospital.</span><br />
<span class="Apple-style-span" style="font-size: large;">I was admitted with no platelets and no white blood cells, low hemoglobin. A CT scan showed no intracranial bleeding but I am sure I had a concussion. A blood culture revealed Staph Aureus, but not the antibiotic resistant type. My port had to be removed and I went on vein destroying IV nutrition. Every venipuncture was agony.</span><br />
<span class="Apple-style-span" style="font-size: large;">I had blood transfusions, platelet transfusions, drugs to encourage WBC production, labs, regular blood sugar measurements with oversized lancets, insulin.</span><br />
<span class="Apple-style-span" style="font-size: large;">After 2 weeks I was ready to go home, but my esophageal stent had been removed and I could not swallow. The day after discharge, I was back for a PEG tube and stent replacement.</span><br />
<span class="Apple-style-span" style="font-size: large;">I was home again, relatively comfortable for about 2 weeks when my heart rate went up to 180. No chest pain or other symptoms. In Dr Flam's office, he diagnosed atrial fibrillation and converted me to sinus rhythm with drugs.</span><br />
<span class="Apple-style-span" style="font-size: large;">Today, I saw Dr. Dale Merrill, an old colleague and cardiologist who confirmed I am on the right track.</span><br />
<span class="Apple-style-span" style="font-size: large;">Biopsies of my esophagus showed Merkel Cell cancer, but the repeat biopsy at the time of insertion of the smaller recent stent showed a lattice of connective tissue without living Merkel cells. Dr Lewis thinks it is an optimistic sigh that the Topotican worked. Dr Flam thinks it is an artifact of crushed cells.</span><br />
<span class="Apple-style-span" style="font-size: large;">Probably I will have a follow-up PET scan in the next 2 weeks to learn more.</span><br />
<span class="Apple-style-span" style="font-size: large;">So, after lying in my hospital bed conjuring up methods to hasten my demise, I now have room for optimism.</span><br />
<span class="Apple-style-span" style="font-size: large;">Tonight, I plan to briefly appear at the Lady Antebellum concert at the Save Mart Center.</span><br />
<span class="Apple-style-span" style="font-size: large;">I hope to be alive to celebrate 50 years of marriage to Judy, who has been a rock in support of me.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br />
</span>Anonymousnoreply@blogger.com6tag:blogger.com,1999:blog-1205690253746006152.post-4341015489909170442012-03-12T14:20:00.000-07:002012-03-12T14:20:38.211-07:00Ignoring the Sword of Damocles<a href="http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2011/01/is-this-what-it-is-like-to-be-on-death.html" target="_blank">Dad wrote a post</a> a little more than a year ago asking "Is This What it is Like to be on Death Row?" He posited that "in a way, my situation is similar to that of somebody on death row. Merkel cell cancer is the executioner. Dr Nghiem is my defense attorney. He is appealing my sentence to higher courts." It was an apt analogy then, and intervening events have unfortunately brought another level of accuracy to the analogy. A year ago (even a few months ago), dad could forget he was on death row for long stretches of time. He could play with his grandchildren, dine and go on cruises with his wife, play bridge, and work. By contrast, a death row inmate may forget from time to time that he is on death row, but he remains imprisoned, unable to enjoy even a moment of normal life. The physical impact of the cancer is now making it harder to enjoy normal life.<br />
<br />
My dad isn't a lawyer, so I doubt the distinction was intended, but when he wrote about death row, he said that he is "appealing my <u>sentence</u> to higher courts." Until now, we were hoping his <u>conviction</u> would be overturned, eliminating any accompanying sentence. I'd still love to see a full cure, but at this point we're through most or all of the appeal and a lengthy stay of the <u>sentence</u> pending appeal would be a welcome outcome on its own. The battle isn't over yet, but the most promising appeals of the conviction are behind us. I'm sure every death row inmate listens until the last second for the phone to ring with a pardon from the governor or a stay from the Supreme Court, and sometimes it does. <br />
<br />
Hope remains, but as it diminishes we cross into another problem and another legal analogy: The chilling effect. At some point, the death row inmate in my dad's example may stop studying for the GED, stop learning new skills, and toward the end may even refuse to start a book so lengthy he might not finish it before his scheduled execution date.<br />
<br />
While we wait, hoping for a stay from the Supreme Court of medical progress and treatment outcomes, dad battles daily with the question of how to spend the time he knows he has, regardless of treatment outcomes. Unlike the death row inmate, dad is home from the hospital, released from the confines of the death chamber's anteroom. He is free for now, but some of the trappings of his sentence remain -- a PEG feeding tube, weakness, and pain. All of the trappings can, for now, be managed (the pain with Vicodin, the weakness with physical therapy). The knowledge of his situation, however, is not quite so simple to manage.<br />
<br />
Thurgood Marshall <a href="http://caselaw.lp.findlaw.com/scripts/getcase.pl?navby=search&court=US&case=/us/416/134.html" target="_blank">wrote in a dissenting Supreme Court opinion</a> "That this Court will ultimately vindicate [somebody] ... is of little consequence - for the value of a sword of Damocles is that it hangs - not that it drops."<br />
<br />
Our challenge is to find moments we can ignore the <a href="http://en.wikipedia.org/wiki/Damocles#The_sword_of_Damocles" target="_blank">Sword of Damocles</a>. The Sword of Damocles is a sword, suspended by a single hair, hanging above a ruler's throne, casting such a pall that the ruler soon begs to cede the throne (see footnote 1 below for a more detailed description).<br />
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<i><span style="font-size: x-small;">Cicero says of the Sword of Damocles, "Does not Dionysius seem to have made it sufficiently clear that there can be nothing happy for the person over whom some fear always looms?"</span></i></div>
<br />
In the days following dad's diagnosis, we understood Merkel Cell Carcinoma to be so deadly and aggressive that it seemed a Sword of Damocles, destruction a hair's breadth away. I struggled to accept that there was nothing to be done, but that was not in my nature. I found the MCC Google Group. George, and soon others in the group, reached out. Dr. Nghiem got involved. We soon realized that the sword may be hanging, but by something far more robust than a hair. Indeed, it was by no means certain that the sword could not be removed. Nearly two years later, the rope holding the sword may be fraying, but dad and the family have enjoyed birthdays, vacations, and good times even in the shadow of the threat.<br />
<br />
Unfortunately, the chilling effect of the threat is settling in. I can't imagine what passes through dad's mind, but I know pain keeps him awake many nights. I doubt even he knows whether it is physical pain or emotional pain that is behind the insomnia. He does not feel up to having visitors, updating this blog, or engaging in anything that requires extended concentration. His cognition seems fine, but the weight of his circumstances surely makes concentration a hard task. <br />
<br />
My oldest daughter, Eva, has visited him a few times. He spent a few minutes with 4 year old Sara yesterday. Sara said "I wish you could feel better." <br />
<br />
The question is whether dad can feel better. Physically, it seems on balance that he does feel better. There is new pain on the left side under the lung (pleural pain), but it is somewhat less than the now-discontinued posterior mediastinal pain was. Dad is still using a walker for infrequent walks, but he is now sitting in a chair regularly, which wasn't happening last week. Dad is engaging in discussions more frequently, but he is becoming short of breath more quickly than before. His voice has been raspy and almost godfather-like since his stent replacement surgery. Dad is refusing most food and water by mouth, but he getting nutrition via a PEG tube.<br />
<br />
Physical improvement aside, the sword still hangs, and the chill it casts has become quite strong. Other than those who die young and suddenly, the Sword of Damocles will one day hang over each of us. That dad has enjoyed nearly every day since his diagnosis is a testament to his strength. That he is having trouble enjoying the early days of his release from the hospital is not surprising.<br />
<br />
He is scheduled to see Dr. Flam again on Friday, March 23. They will likely schedule a PET scan at that point. Dad saw no point in doing a PET scan earlier -- if it was good news and the chemo worked, he wouldn't be strong enough for another round yet anyhow. If it was bad news, learning it earlier wouldn't be helpful either. The esophageal biopsy that was done in conjunction with the removal of the original stent showed dead and dying tumor cells, so there is some objective evidence that the chemo worked. The closure of the esophagus after removal of the first stent and the new pain are of concern to dad. So we live with a couple of weeks of uncertainty. There is some thought that the left pleural pain may be pneumonia-related, so there may be some intervening diagnostic tests.<br />
<br />
I wish there was some positive note I could conclude on, but it eludes me. It was three weeks ago yesterday that my dad went to the ICU, and so it has been three weeks since the reality of what is going on has solidified. If dad gets to feeling well enough to have some normal days, I'm sure he will take advantage of them. The appeals aren't yet exhausted either, and nobody refuses a pardon.<br />
<br />
Footnotes:<br />
1. From Wikipedia's description of the Sword of Damocles: The Damocles of the anecdote was an obsequious courtier in the court of Dionysius II of Syracuse, a fourth century BC tyrant of Syracuse, Italy. Pandering to his king, Damocles exclaimed that, as a great man of power and authority surrounded by magnificence, Dionysius was truly extremely fortunate. Dionysius then offered to switch places with Damocles, so that Damocles could taste that very fortune first hand. Damocles quickly and eagerly accepted the King's proposal. Damocles sat down in the king's throne surrounded by every luxury, but Dionysius arranged that a huge sword should hang above the throne, held at the pommel only by a single hair of a horse's tail. Damocles finally begged the tyrant that he be allowed to depart, because he no longer wanted to be so fortunate. Dionysius had successfully conveyed a sense of the constant fear in which the great man lives. Cicero uses this story as the last in a series of contrasting examples for reaching the conclusion he had been moving towards in this fifth Disputation, in which the theme is that virtue is sufficient for living a happy life.Gary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com5tag:blogger.com,1999:blog-1205690253746006152.post-22429778500051840492012-03-06T20:09:00.001-08:002012-03-06T20:09:04.574-08:00Two Steps Forward, One Step BackDr. Flam signed my dad's discharge papers early yesterday morning, and he was discharged mid-afternoon yesterday.<br />
<br />
After the stent was removed, my dad actually enjoyed chicken noodle soup. He put away quite a few lemon yogurts and bowls of cream of wheat. His eating was less enthusiastic yesterday, but I wrote that off to jitters about going home. Last night he said he had no appetite, but managed to eat some soup and a lemon yogurt. I didn't see the pattern, but in retrospect, it was an echo of the earlier pattern that preceded acute esophagus issues.<br />
<br />
This morning started as a really normal day for me. Amid the buzz of my three daughters getting ready for school, I called my parents around 8:00 am to see how dad's night went. Me: "Hey, mom, how did dad do last night?" Mom: "I can't talk. I'm on the other line with Dr. Lewis." Me: "Is everything OK?" Mom: "No, he can't swallow again, he's going to the hospital. I'll call you back in a minute."<br />
<br />
I wanted to cry, and I did tear up, but that is all I had time for. It was time for the team to pull together. The day went from normal to high gear.<br />
<br />
My youngest brother, Michael, helped my mom get my dad ready to go to the hospital. In the meantime, my other brother, Brian, was still recovering from his Saturday surgery. Brian wasn't feeling great. In the midst of it all, my mom had to go to the doctor. To top it off, my youngest daughter, Bel, stopped getting ready for school and started complaining she didn't feel good. She was off to the doctor. I had a regularly scheduled doctor's appointment.<br />
<br />
My dad was scheduled to have a PEG feeding tube and a new (smaller) stent put in at noon, and was supposed to be at the hospital for 10:30. So the morning went like this:<br />
<br />
8:45 My wife, Dana, took Sara to school<br />
8:45 I took Eva to school<br />
9:00 I went to Home Depot to buy a wireless doorbell for dad to use as a call button (press downstairs, rings upstairs)<br />
9:15 Mom went to the doctor<br />
9:40 I went to the doctor<br />
9:45 Mom drops off an antibiotics prescription at CVS, they say they can't fill it fast enough so she can get home in time to take dad to the hospital.<br />
10:00 Michael had arranged to have a supplier come over and evaluate whether a chair lift can be installed on the staircase. Michael handles the visit, but it doesn't look like it is going to be something that makes sense to do.<br />
10:10 My wife Dana volunteers to pick up my mom's prescription at CVS and take it to the hospital.<br />
10:15 I pull up at my parents' house as they're putting my dad in the car<br />
10:16 Youngest brother Michael drives my dad's car to the hospital; I drive my car to the hospital; my mom drives my dad in her car to the hospital. Turns out we actually needed the flexibility of multiple cars, so lack of carpooling was good<br />
10:30 Shuster caravan arrives at hospital<br />
10:45 Dana arrives with the prescription. CVS gave her my dad's prescription, not my mom's. My mom needs those antibiotics. Dana heads back to CVS to get the prescription. Dana doesn't complain at all, which is more than I could have pulled off.<br />
11:15 Dana arrives with the correct prescription. We discuss registering Sara (our middle daughter) for Kindergarten, which apparently requires camping out at the school by 6:00 a.m. tomorrow in order to avoid getting assigned to a school all the way across town. We realize that we have a problem because Bel's doctor appointment is 2:00 pm and we won't have a free person to pick up my oldest daughter Eva at 3:05 p.m. Dana calls Margaret (Eva's mom, my ex-wife) and she cancels her doctor's appointment so Eva can take the school bus to her house. I'm super-thankful for a very functional blended family.<br />
11:45 Dad is having pain and gets a painkiller via IV (the IV went it without much difficulty, a good thing)<br />
12:00 Dad is taken to the endoscopy suite, then a bit later to radiology where the procedure will be done.<br />
12:05 We all talk with Dr. Lewis. Michael, mom and I are sent to the waiting room. <br />
12:10 We wait.<br />
1:00 Dr. Lewis gets us, and tells us the procedure went well. He walks us back to where dad is. We ask him what the biopsy results were from the sample he took on Friday when removing the stent, and he said he didn't have them yet, but that Dr. Flam would have them. Mom puts in a call to Dr. Flam asking for them.<br />
1:10 Michael goes home to keep an eye on Brian. Mom and I wait for dad to wake up.<br />
1:30 Dad wakes up, we visit with him, he's barely awake. We go back to the waiting room so he can sleep.<br />
2:00 Dana takes Bel to the doctor. Dual ear infection. Dana's third trip to the pharmacy is underway.<br />
2:00 Mom and I are shown a really bad video of a woman with "flock of seagulls" hair explaining (incorrectly, it turns out) how to use a feeding tube. There are 20 minutes I'm never getting back.<br />
2:30 Dad is ready to go, mom goes to get the car. Dad tells me that he has a vague recollection of fighting the doctor's efforts to get the tube in. That probably explains the extra anesthetic he got and the longer than expected groggy period.<br />
3:00 Nurse helps dad get into the car.<br />
3:15 We arrive at my parents' house. (I think I might have gotten about 30 minutes off on this schedule, since 3:15 seems earlier than it really happened).<br />
3:30 Dad is in his bed, exhausted.<br />
3:35 Dad is scheduled to see Dr. Flam at 8:30 tomorrow, but we think today's events probably make that appointment unnecessary. Mom calls Dr. Flam again asking for biopsy results and whether he needs to go to his appointment.<br />
4:00 First Super Tuesday results come in. Dad turns it on and watches for a few minutes, then naps.<br />
4:55 Mom places third call to Dr. Flam, and he's already on the exchange. So we still don't know if we have biopsy results or an appointment tomorrow.<br />
5:30 In the ironic moment of the day, I get a call from St. Agnes billing about a bill I got and apparently didn't pay quickly enough -- because I was too busy caring for my dad as a St. Agnes inpatient. The message said to call them back and that they were open until 6:00 p.m. I called back right away, but it turns out that they were only open until 3:00 p.m. Very annoying.<br />
6:00 Dad is settled. He has some pain related to the PEG, but he seems OK. I head to the store to get dinner.<br />
<br />
Dad wants to have a few days without a doctor or hospital visit, and we will try to accomplish that. Today we had one doctor visit for each generation (my mom, myself, and my daughter) -- plus my dad's outpatient procedure.<br />
<br />
My wife has been great. My oldest daughter, Eva, has been a terrific help. My youngest daughters have been solid. My youngest brother took control of what needed to be controlled. My middle brother soldiered through his discomfort. My ex wife helped. My mom was amazing, fighting through her infection. There is no substitute for a family that pulls together. My dad must have done something right because he built the framework for all of this since becoming a parent in 1967.<br />
<br />
I'm tired just looking at the list of what happened today. I wish there was some witty closing sentence I could use, but I have to recycle the one thing I said today that got my dad to smile. While we were waiting for Dr. Lewis, I told my dad "you know, just three more of these surgeries and the fourth one is free." It was nice to see him smile.Gary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com4tag:blogger.com,1999:blog-1205690253746006152.post-89412528178334991232012-03-05T10:54:00.001-08:002012-03-05T10:54:16.977-08:00There's No Place Like HomeLast night dad said he was hoping to go home on Tuesday or Wednesday. I told him that it lined up pretty well with my guess that he would be going home by around Thursday. As it turns out, we were both wrong: Dr. Flam just signed the discharge papers.<br />
<br />
<b>Doc Dave is going home today.</b><br />
<br />
It is such great news. There are dozens of little details that we will need to take care of in the next few hours and days, but they all seem trivially easy compared to the battle my dad just waged and won.<br />
<br />
Dad's war with Merkel Cell Carcinoma continues, and every battle he fights shows his courage and serves as an example and inspiration to me. It should come as no surprise that we discussed how to proceed with dignity and comfort should this battle have gone badly, and dad's ability to initiate that blunt and difficult discussion speaks to his inner strength.<br />
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I realize I paid very good attention to how my dad interacted with my grandfather when my grandfather was ill, because I had a rich reservoir of observations to model my care taking behavior on. When I face a serious illness, as we all eventually do, I now have a heroic fighter to model my response to illness on as well.<br />
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There is a story they used to tell students on their first day at Harvard Law, and I suspect I'll tell it a bit wrong. My recollection is this: Two hunters are sleeping in their tent in the woods. An enormous bear comes crashing through the forest and roars. One hunter starts putting on his shoes. The other, still barefoot, says "Why are putting on shoes? You can't outrun the bear!" The first hunter says "I don't need to outrun the bear. I just need to outrun you."<br />
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Of interest is that my dad considered himself stage IV on November 24, 2010. According to <a href="http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2011/11/some-random-observations-about-mcc-and.html" target="_blank">his post</a> last year, he had only about a 25% chance of being alive today, and some people in fact do outrun and eventually survive the bear. Every new day that my dad outruns the MCC is a victory we will celebrate.<br />
<br />
On a practical note, my dad is surely going to be exhausted for the next few days and will be very unlikely to take visitors or phone calls. The transition from hospital to home is one that we will all need to focus on.Gary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com5tag:blogger.com,1999:blog-1205690253746006152.post-64758462286735815262012-03-02T14:10:00.002-08:002012-03-02T18:43:16.857-08:00It's HeavyMy dad has spent the last 12 nights in the <a href="http://www.samc.com/" target="_blank">hospital</a>. The urgency of the first days has given way to a different world where the hours, days, nights, even weeks seem to run together.<br />
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As much as we try to empathize with others, we never really know what they are feeling or thinking. I do know what my dad has seen, heard, and had done to him since coming to the hospital. I've taken a photograph of the view my dad has had continuously for the past ten days. We've taken time to decorate the wall for him with the pictures we think he would most like. <br />
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The view from my dad's hospital bed.</div>
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On the left is a group shot (taken on the cruise in December). On the right is a grid of photos, arranged as follows:<br />
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<span style="font-family: 'Courier New', Courier, monospace;">[Eva] [Sara] [Sammie]</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">[Bel] [Eli]</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">[Family] [Rocky]</span><br />
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Eva is my oldest daughter (now 11); Sara is my middle daughter (now 4); Sammie is my brother's daughter (turned 4 a few days ago); Bel is my youngest daughter (now 2); Eli is my brother's son (now 1). Rocky is my parents' golden doodle. Along the bottom of the photo is a banner my 2 and 4 year olds made for him.<br />
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<br />
I've spent more time with my father in the past two weeks than in any other two week period since I was a child living at home. Over the years, we've talked work, family, and politics, but this is only the second time I can remember that every conversation and moment of silence we shared has been either about a single emotionally important event (in this case, dad's illness) or discussed with an unspoken awareness that we're not discussing that event.<br />
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The tenor is captured well by a conversation we had a week ago. My dad was lying in the bed, covered with quite a few sheets. He was shuffling his feet a bit, then stopped, looked over, and said "It's heavy." I leaned in and asked "what's heavy? The blankets?" His response was "no, it's heavy, the stuff I'm thinking about." I asked if he wanted to discuss it, and he said "not now".<br />
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His dry wit still shows. A few days later, he was having a tough night, and I said "I'm sorry, dad. I know this isn't how you would have wanted to spend your evening." Without pause, he said "evenings".<br />
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Last night my dad said I could update his blog going forward, so I'm putting up this post to bring the blog up to date with what has gone on over the past two weeks. First off, a technical note: I found the long URL for this blog made it nearly impossible to get people to remember how to find my dad's blog. Rather than keep telling them to "search Google for mcc and shuster", I created a new URL that redirects to it: <a href="http://mcc.shuster.com/">http://mcc.shuster.com/</a> The blog continues to be hosted on the old URL, but <a href="http://mcc.shuster.com/">http://mcc.shuster.com/</a> takes you there.<br />
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Since I last updated the blog with the post "<a href="http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2012/02/dictated-but-not-read.html">Dictated But Not Read</a>", there have been a lot of changes, but the bottom line is that my dad's immediate condition is improved and we have no definitive data on what is going on with the cancer.<br />
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The initial issue with <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001687/" target="_blank">sepsis</a> was probably caused by compromise to the immune system as a complication from the <a href="http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2012/02/short-of-it.html" target="_blank">chemo </a>with <a href="http://www.chemocare.com/bio/topotecan.asp" target="_blank">Topotecan</a>. My dad's <a href="http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2012/02/another-short-of-it.html" target="_blank">last blog post before going to the ER</a> noted the various side effects of the Topotican, but noted that "<i>With that parade of complaints, I am still optimistic that this drug, the Topo will kill enough tumor to allow me a remission, where I can have some snippets of normal life</i>." Nothing in the time between then and now has worsened the chances of that optimistic outcome.<br />
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While I don't have the blood counts from before he was hospitalized, I do have the counts for the last several days:<br />
<br />
<span style="font-family: 'Courier New', Courier, monospace;"> 2/26/12 2/27/12 2/28/12 2/29/12 3/01/12 3/02/12</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">WBC count 0.3 0.4 0.5 1.3 2.6 7.1</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Platelet 12.0 105.0 76.0 38.0 31.0 27.0</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">RBC count 3.09 3.10 3.01 2.93 2.75 2.65</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Hemoglobin 9.6 9.5 9.2 9.2 8.5 8.2</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Neutrophil 0.10 0.10 0.30 1.10 2.30 6.70</span><br />
<span style="font-family: 'Courier New', Courier, monospace;"><br /></span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Normal ranges:</span><br />
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<span style="font-family: 'Courier New', Courier, monospace;">WBC count 4.5-11.0 K/mcL</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Platelet 150-400 K/mcL</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">RBC count 4.70-6.10 M/mcL</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Hemoglobin 14.0-18.0 g/dL</span><br />
<span style="font-family: 'Courier New', Courier, monospace;">Neutrophil 2.60-8.20 K/mcL</span><br />
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<br />
Dad was hospitalized on Feb. 19, so a week after his hospitalization, his counts had not yet recovered. His immune system (apparently Neutrophil is a key thing) was essentially non-functional until 10 days after hospital admission, and not normal until 12 days after admission. His blood (taken upon admission) was positive for gram positive cocci in clusters, and eventually cultured to show presence of a particular strain of staph. He was given broad antibiotic coverage initially, then the coverage was reduced to target the identified strain of bacteria. After he developed a new fever, his coverage was again broadened. <br />
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Dad was moved out of the ICU around midnight on Feb. 23. He was moved into a regular room with neutropenic isolation because of the compromised immune system. This meant lots of hand washing and wearing a mask. Note to caregivers: Do not try to drink hot tea with a mask on -- I did it twice before I realized I should just not bring drinks into the room.<br />
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Because it was unclear what the initial source of staph was, and because of concern that the port was either the cause of the infection or had become infected, the port was removed on Feb. 26.
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His heart rate went from 80 to 90 around Feb. 26, then from 90 to 100 on Feb. 27. On Feb. 28, he stayed awake from mid-afternoon more or less all night. Around 2:30 am he developed sinus tach at 120 beats per minute, and around 3:00 am he developed atrial fibrillation at around 140 beats per minute. When dad heard that, he said "oh shit". Some say doctors make the worst patients, but I think it must be scariest for doctors when they are patients. They know exactly what they should be scared of.<br />
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At that point, I called my mom and let her know what was going on. I intended to let her know to come in early, but of course she instead decided to come in immediately.<br />
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They gave him an IV medication to restore normal rhythm, and his heart rhythm became normal and his rate dropped back to around 102 to 105 beats per minute. The rate became normal shortly thereafter. On top of everything else, his pain from the stent was spiking at that moment. His temperature went from 38.1 to 37.7 back to 38.4 that night. By the morning, his fever was down to 99.7 (yes, I'm aware that switching between centigrade and Fahrenheit is confusing) and his pulse was 89.<br />
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His antibiotic coverage was broadened, and his temperature returned to normal (or a bit below normal actually). By February 29, his immune system had recovered enough to discontinue the isolation precautions. Finally, I can sit next to him and smile without having a mask covering it all up.<br />
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On the morning on March 1, after a few days of rainy, cloudy weather, the sun rose to a beautiful purple sky that quickly transitioned to blue. There were some clouds, but they were distant on the horizon. It was an unexpected but wonderful metaphor.<br />
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There has been a lot of difficulty with IV lines. After the port was removed, he needed to get PPN (the weaker version of TPN, IV nutrition) in a regular IV line. This irritated his veins. Same thing with some of the antibiotics. He needed three IV lines at one point, but then one went bad. He was suspecting it would go bad, and one night after starting the PPN in that IV line, he experienced a profound hot flush, lasting for about 5 minutes. They pulled that IV. Another IV went bad later that day. They put in a new line. The new line and the third "old" line went bad today. He currently has only a single line. There is an open question about whether or when they will put in a central line, such as a "PIC" line.<br />
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The pain from the stent has been continuous. He had the stent removed at 3:00 p.m. today, March 2. The removal went very well. His esophagus was fully open. The doctor reported seeing material that had the appearance of necrotic tumor. He took a biopsy, and results of the biopsy should be available either Saturday or Monday. The esophagus remaining fully open and the observation of potentially necrotic tumor are both positive signs. The stent removal was just a few hours ago, so we don't yet know whether the esophagus will remain fully open.<br />
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I leave it to my dad to discuss his feelings about all of this, and I hope he will resume blogging soon. I can say that he has experienced some days when he is very positive, and some days when he is very negative, and those feelings do not always correlate to how well he is doing physically. There is a lot of uncertainty -- will his esophagus remain open? Will his esophageal neuro-muscular function be good? Will he be able to eat enough to get off of IV nutrition? When will he get a PET scan? What will it show? What will the biopsy show? What will it be like to go home? How much care will he want? If the tumor did shrink, what would another round of chemo be like? Of course, there are also the important big picture questions.<br />
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Dad is still groggy from the anesthetic, but he reports a reduction in pain after removal of the stent.<br />
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Tonight my mom is staying at St. Agnes with dad. My middle brother, Brian, goes in for surgery tomorrow afternoon (Saturday). It is surgery for something causing esophageal issues. My youngest brother, Michael, arrives tomorrow evening. I expect to spend tomorrow night with my dad, and my mom expects to spend tomorrow night with Brian. That is a whole lot of activity in a short period of time. Thankfully, my wife has been amazing about watching the kids so I am free to be there for my dad.<br />
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Dad isn't yet feeling up to having visitors or taking calls. He greatly appreciates all of the friendship and support.Gary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com2tag:blogger.com,1999:blog-1205690253746006152.post-26199339466757544382012-02-20T22:22:00.000-08:002012-02-20T22:22:37.514-08:00Dictated But Not ReadMy dad asked me to update his blog. He has been in the ICU for about the past 24 hours, and is about to spend his second night there. His voice, wit and personality have come through beautifully in his blog posts. I cannot emulate those qualities, but I hope to at least accurately convey the ideas he shared with me. If I get some of the ideas wrong, I hope he will soon correct them in a post of his own.<br />
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He first asked me to express his deep appreciation for the support he has received from all of you.<br />
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He then asked me to share his current status.<br />
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Since his last post, his energy had declined. He was given a week of chemo as planned, but then his cell counts became too low to continue. The new plan was to take a week off and then restart. During this time, he was in significant pain (seemingly from the stent, but there was some generalized pain). There were plans for him to have the stent removed on Tuesday and replaced (if necessary) by a smaller stent. The plans were worked out late in the week, but given the long weekend the surgery was scheduled for Tuesday. He was given a 72 hour Fentanyl patch for the pain. My mom changed the patch on Saturday, and a few hours into the second patch, he began to experience shallow, somewhat labored breathing and a drop in alertness. He also had a slight fever in the just under 100 degree range.<br />
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My daughter Eva was sleeping over with my mom and dad on Saturday night. As he has done frequently since having the problems leading to the stent, he was sleeping downstairs in a chair. During the early morning hours, after Eva was asleep, my mom heard my dad call for her. She came downstairs and found my dad on the floor with blood everywhere. My dad remembers clearly what happened, and told me today that he had tried to walk to the bathroom but fell. He tried to get up and then fell again, this time hitting his head on the door to the bathroom. While telling the story, he smiled and said "after the second time, I figured I should ask for help." The blood was from the cut on his head. My mom stayed downstairs for the rest of the night, staying awake to keep watch over him. Thankfully, Eva slept through this and only saw a somewhat cleaned up scene when she awoke.<br />
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Eva's mom Margaret is my ex-wife, but over the past few years she has become best friends with my current wife Dana and we have been blessed with a strong co-parenting relationship. My mom called me in the morning, before Eva awoke, and after briefly speaking with Dana, we called Margaret. There was a little difficulty reaching her (understandable, she is remarried and has a newborn baby and was probably enjoying the hour or two of sleep her newborn affords her). After a little delay, she got the message and quickly called. She got right in the car and picked up Eva. Eva was well aware that her papa had fallen and was experiencing a turn for the worse, and her mom spent most of the day comforting Eva and crying together with her (Margaret has known my dad for almost 20 years).<br />
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I was out of town with Dana and scheduled to come back late Monday. However, it was Sunday and I was going back and forth by phone with my mom as to whether to return early. I told her that the only priority was honoring her wishes and my dad's wishes, and doing what would make things easier for them. She said she did not want me to come back yet, but she would let me know if that changed. She was holding off on calling Dr. Flam because she did not want to wake him so early on a holiday Sunday. I strongly encouraged her to just wake him up (if you're reading this, Dr. Flam, thank you for taking the early call). She did wake him up, but he did not seem to mind. He said to hold off on going to the hospital and just monitor him for changes. I asked my mom to call me immediately when anything changed. I'm afraid I didn't give her quite that much courtesy, though, since I called her a few times just to check in (although to be fair, my cell coverage was spotty so I wanted to make sure she hadn't called and failed to get through).<br />
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Some time later that day (probably mid-afternoon, but it is kind of a blur) she called to say she was in the car going to the hospital with my dad and Herb Boro. Basically my dad's temperature had gone to just shy of 101 degrees, which I am told for patients in my dad's condition is a level indicating possible serious problems (as we learned later, probably sepsis). I asked whether I should drive home but my mom said I should hold off. She didn't think things were critical at that point and she said she without a diagnosis of an imminent medical problem, she didn't want me driving home with my wife and two younger daughters at night. I said OK.<br />
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Around dinner time, perhaps a bit later, my mom called saying that my dad was not going to just be admitted, but was going to be sent to either the cardiac ward or the ICU. His heart rate was ranging between 110 and 130 and his blood pressure was way up and down. He had also seen his fever rise to 103 degrees. At this point I was gripped with uncertainty and self-doubt. I could drive home right away, but if things progressed even linearly, he would be unconscious or worse by the time I got there (it was about a 4 hour drive). My mom hadn't slept on Saturday night for more than an hour or two, and was heading into a Sunday night without sleep. My mom said the best thing was for me to rest and return in the morning. I went with her request and decided to try to sleep and drive in very early on Monday morning. My thinking was that the best thing I could do was arrive ready to relieve my mom so she could sleep. If I drove home right away, my mom and I would both be going into Monday with no sleep, and if things continued to worsen, we might both start to have our function impaired by lack of sleep some time in Tuesday's early morning hours.<br />
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It was the worst feeling I've ever had going to sleep. I was going to sleep knowing that my dad might pass away before morning. I had two dreams that I can recall that night. In one of them, my dad called to say hi and I stopped him after a few sentences and said "dad, you're ok!". In the other dream, it was morning and my dad had stabilized. I woke up well before the alarm and was gripped by a need to know how my dad was. The phone hadn't gone off during the night, so my worst fears hadn't been realized. I hoped that my dad had stabilized enough that my mom was able to sleep for a few hours. I didn't want to wake her, so I painfully waited for an hour before calling her.<br />
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I know that the portion of the story I just told is entirely unlike the other blog entries -- it is told from my perspective, and focuses on the experience of trying to react when a loved one is hurting. It is one thing to say that you should expect to make hard choices, have ambiguous feelings about the choices you make, and force yourself to do what you think, on balance, is best for the well being of your loved ones even if it is hard for you. It is quite another to live the experience. I laid out my decisions, the reasons for them and the ambiguity because even if I got it wrong or others would have done it differently, I think it is important for people caring for people in my dad's situation know that they aren't alone in making decisions that reflect their best guess, based on limited facts, about the right thing to do. Had the worst come to pass while I slept, I would surely have felt guilt that I made the wrong decision. I was lucky, or (I hope) rationally reached the right decision in that I arrived sad but rested and I was able to provide the love and support that my parents both needed after a truly awful night. Caregivers, you are not alone in repeatedly rethinking the decision you made that you thought 60% likely to be the right one. Be guided by your love for others rather than your own needs and at least you can tell yourself "I honored the wishes of my loved ones, and took the path I thought was most likely to do right by them."<br />
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I jumped a bit ahead in my effort to keep contiguous the portion of the post about the decision to return sufficiently rested to help rather than return 8 hours earlier. So I'll rewind to Sunday evening. I had held it together really well, talking my mom through some of decisions she faced, trying to figure out the right thing to do, even packing up so I could leave without delay in the morning. Dana had been offering to hug me for hours but I just needed to talk with her, and we talked until I'm sure she was well past the point of exhaustion -- but she is an angel and never let on. I was talking to Dana when mid-sentence I said "I need that hug now", she held me in her arms, and I cried. I wish I was better at crying when I need to, because it really helped. Dana made it safe to cry and I did. I realize now how strange it was that my ex-wife was holding my daughter and crying together about my dad probably at the same time as my current wife was holding me and crying together about my dad. Strange, but in a positive way.<br />
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While I was driving home, I talked a couple of times with my mom. She told me of the harrowing night they had. Essentially, she was up with my dad all night. They finally got him settled in the ICU and transfused him with 2 units of whole blood, at which point he improved a bit (the platelets they gave him earlier in the process may have helped, but if they did help, they didn't help enough). They had him on IV antibiotics, and that also helped. She was exhausted, and neither parent had slept that night.<br />
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I learned something else during that drive that completely surprised me: People don't normally have a copy of their advance medical directive document available. The doctors had asked if there was an advance medical directive, and in the middle of the night my mom was only able to say "yes, at the lawyer's office". Indeed, my dad's was at his lawyer's office (along with mine). We had all made the mistake of not making sure our loved ones had copies of our advance medical directive available. I don't know why I didn't realize that illnesses don't always strike when law firms are open, and that even keeping a single copy in one person's file cabinet doesn't mean that the person who will need it can get it. Luckily, the will was done by the same firm where a terrific person, lawyer, and friend works (Ken Price). I emailed the three lawyers I knew well at that firm, and despite the pretty early hour got a prompt reply from Ken. Of course (as I should have known after doing that whole law school/bar exam thing), the complication was that my mom was the person named to make medical decisions, so only she could approve the release of the document. Ken had the document scanned to a PDF and emailed it to my mom. She forwarded it to me and I printed it when I got home. Lessons here? Give copies of your advance medical directive to anybody who might need it, and realize that even if you have terrific, responsive lawyers they might be ethically limited in their ability to rapidly get you a copy.<br />
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I got in the car, copy of the advance medical directive in hand, and drove to the hospital. My mom was home resting and eating a meal. When I got there, I walked in and held my dad's hand. It had only been 24 hours since that first call, but it felt like I had spent a month on the trek there. I didn't let go of his hand for what seemed like an hour (likely about a minute), and in that moment he was my daddy and I was his little boy. I wished with all my heart for my daddy to be better. I looked up, told him I love him, and took a seat next to him.<br />
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He had beard stubble, was thinner than when I last saw him, but his eyes were alive. Not just literally alive, but *** alive *** in the way that all humans recognize as the sign that somebody is really there, ready to engage with the world. His body was suffering, but he was still very much himself. I suspect I had been breathing for the minutes leading up to that realization, but I felt like like it was the first time I exhaled all day.<br />
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We spent hours talking or just sitting with each other. My mom arrived, and the three of us just talked and enjoyed each other. As you can guess from his blog entries, my dad doesn't keep that much secret. My dad wasn't able to drink easily, and his mouth was very dry. As a result, his voice was crackly and quiet. He turns to me and says "Gary, I've got something I want to say to you". My mom kind of looked up and asked him "is this something I should be here for". He said "no, just Gary". I thought, "this is like one of those moments in the movies where the patriarch leans over and in a weak but firm voice and shares something of great importance." My mom walked out and I leaned in to hear every word. My dad looked in my eyes and said "so here is what I want you to write on my blog...." He proceeded to lay out his thoughts. At first I thought that this was one of those funny moments in a really tense setting where you've misunderstood a fundamental thing. But then it dawned on me that this blog has been an amazing resource to those suffering with similar afflictions, to his family and friends who get to see his wit and learn new things about him with each entry, and to himself in a cathartic way. So it was in fact a moment of immense importance for us -- he had entrusted me with writing an entry in a document of true importance in his life. He shared what I wrote below, but (to again take things out of sequence), we did share some intimate thoughts outside of the blog before my mom returned.<br />
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So this blog entry is very much dictated but not read. I listened carefully to what he said, and this is my best shot at conveying it.<br />
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He told me that he was very depressed last night, feeling that there wasn't hope for him. But today he has a ray of hope. He said his brain function "is not that great right now", but he is more optimistic based on the fact that we don't yet know if the chemo worked, and it may well have worked. He then laid out two scenarios:<br />
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The optimistic scenario: The chemo worked. In a few days he finds out that it worked and the stent comes out, he goes home, he has a chance to beat this thing.<br />
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The pessimistic scenario: The chemo didn't work. In a few days he finds out that it did not work and there is not much hope.<br />
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He says that everything is based on whether the chemo worked. I then asked him whether there was a third scenario, a middle ground where the chemo didn't work, but he feels better for a time. He doesn't get more chemo, but with pain management he is able to go home and enjoy some quality time before he passes away. He agreed that the middle ground scenario was possible and agreed that I should add it to his blog entry.<br />
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As for his current status, his blood pressure is still relatively low (88/50 earlier, but when I left it was around 80/50). I believe his ability to concentrate was cycling with drops in blood pressure, but that might just have been coincidental (he hasn't slept a reasonable amount in couple of days so there are plenty of reasons he might have trouble concentrating). They gave him IV steroids just before I left to try to raise his blood pressure. The risk is a secondary fungal infection, but they said that his blood pressure was just too low and they could control the risk with anti-fungals. <br />
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They confirmed that he had sepsis. Blood drawn yesterday was cultured and showed gram positive cocci in clusters. They continue to give him antibiotics, although they're going to monitor his renal function since the antibiotics can create renal function issues. <br />
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It turns out that the ICU has a rule that between 7:00 (am and pm) and 8:30 (am and pm, respectively), no visitors can be present. This is to allow the staff to brief each other more effectively during the shift change. We were sent home at 7:00 pm, and my dad indicated that we should come back in the morning. I asked the nurse to call me if he thought that my being there overnight would improve the treatment outlook, and he promised he would. He hasn't called yet, and assuming I don't get a call I'll return to the hospital after the morning shift change.<br />
<br />
My dad remains cognitively strong, and the observation he made about his "brain function" being "not that great now", I'm convinced that it is due to difficulty remaining fully awake. When he does focus in, he's sharp as ever. His hands shake when he reaches for things. He is not getting IV nutrition, but he is on a liquid diet and has no desire to eat it. They probably put him back on IV nutrition tomorrow. His temperature is more or less normal (perhaps slightly high, like 99.2 or so). The nurse was laying out the treatment plan for the next few days, which is a signal that at this point the nurse is thinking things are improving.<br />
<br />
I hope that my dad is well enough to post for himself soon, but while we wait for that I will do my best to take his dictation.<br />
<br />
I know I led off with this, but it is important enough to repeat: My dad is truly appreciative of all of the support.<br />
<br />
He has his iPhone with him and is reading email at times when his concentration is good. He may not have time or the concentration to reply to emails, but rest assured that they are reaching him.<br />
<br />
-- Gary ShusterGary Shusterhttp://www.blogger.com/profile/09871534893289060677noreply@blogger.com13tag:blogger.com,1999:blog-1205690253746006152.post-71489853221614896532012-02-12T23:20:00.000-08:002012-02-12T23:20:39.827-08:00Another "The Short of It"<span class="Apple-style-span" style="font-size: large;">Because I still am not up to writing "The Long Of It"</span><br />
<span class="Apple-style-span" style="font-size: large;">I have been home since last Wednesday when the Topotican was started, as a continuous drip. I am able to swallow with the stent, albeit not without pain. The pain has been controlled with Vicodin needing less and less, but still needing it at bedtime. I am sleeping better, but not well. At night and at other times as needed, Marinol was prescribed. It is basically synthetic marijuana, supposedly without the psychotropic effects but with the anti nausea properties. So far, it does make me drowsy and does reduce nausea.</span><br />
<span class="Apple-style-span" style="font-size: large;">Although I am able to eat, I have no desire to do so. I have to force myself to eat food, and I am still on the TPN. I have not had a bowel movement in about a week, but I do pass gas. Sometimes I burp up feculent gas. </span><br />
<span class="Apple-style-span" style="font-size: large;">Listening to the Grammies tonight, I notice that my hearing is again deteriorating. I am also noting more neuropathy in my feet. </span><br />
<span class="Apple-style-span" style="font-size: large;">I continue to have shortness of breath and coughing while trying to speak.</span><br />
<span class="Apple-style-span" style="font-size: large;">With that parade of complaints, I am still optimistic that this drug, the Topo will kill enough tumor to allow me a remission, where I can have some snippets of normal life. </span><br />
<span class="Apple-style-span" style="font-size: large;">I hope to have the energy to post again, likely Wednesday after I see Dr. Flam.</span><br />
<span class="Apple-style-span" style="font-size: large;">Goodbye Whitney.</span><br />
<span class="Apple-style-span" style="font-size: large;">We will always love you. <a href="http://www.youtube.com/watch?v=H9nPf7w7pDI">YouTubeVideo</a></span>Anonymousnoreply@blogger.com2tag:blogger.com,1999:blog-1205690253746006152.post-76667160260998859662012-02-06T10:13:00.000-08:002012-02-06T10:13:57.145-08:00Too sick to post much<span class="Apple-style-span" style="font-size: large;">I can't put coherent thoughts together to post. Today, I will see Dr Flam and decide whether to start Topotecan today or delay a few days. The stent is working but I have no desire to eat. Lots of pain, but getting better. Nausea. No desire to eat even though the food goes down. Still on IV nutrition. </span>Anonymousnoreply@blogger.com2tag:blogger.com,1999:blog-1205690253746006152.post-34376259324966432672012-02-02T10:51:00.000-08:002012-02-02T10:51:47.367-08:00The Short Of It<span class="Apple-style-span" style="font-size: large;">Last night, I did have a fairly decent nights sleep, for me. At least I was able to sleep in bed, and not in a chair. The IV feeding ran during the night. However, today, the Boost Plus is not going down easily.</span><br />
<span class="Apple-style-span" style="font-size: large;">I had my visit with Dr. Flam yesterday afternoon. We had conversations with Dr. Nghiem and Dr. Lewis during this visit. Dr. Flam wants me to start chemotherapy again and made a compelling case for it. He wanted me to begin as soon as today and felt that that would open my esophagus so I could begin eating again. However it would take some time for this and I am in too much distress to wait for this. Dr. Nghiem suggested injecting the esophagus tumor with Beta Interferon endoscopically and then giving radiation to the area of 8 Gy. The second mass near the gastrohepatic ligament might also be treated in similar fashion. However, my esophagus has already had 56 Gy and this is getting close to the maximum. We decided to hold that approach for the time being. I did not want to have any more cisplatin as I want to preserve my hearing and my peripheral neuropathy has not improved and at times is quite uncomfortable. </span><br />
<span class="Apple-style-span" style="font-size: large;">The plan now is as follows.</span><br />
<span class="Apple-style-span" style="font-size: large;">Tomorrow, Dr. Lewis will insert a removable stent. <a href="http://www.stjosephs-phx.org/stellent/groups/public/@xinternet_con_sjh/documents/webcontent/214011.pdf">Stent Review Article</a> On Monday I will begin chemotherapy with a drug called Topotecan. <a href="http://www.chemocare.com/bio/topotecan.asp">Information about Topotecan</a> </span><br />
<span class="Apple-style-span" style="font-size: large;">The drug will be administered by continuous infusion for 5 days, and repeated after 2 weeks off. I don't know how many cycles will be used, presumably this depends on the response.</span><br />
<span class="Apple-style-span" style="font-size: large;">The drug is available to be taken orally. Perhaps after the first cycle, if my swallowing function has improved, I will be able to do that. <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004881/">More on Topotecan</a> </span><br />
<span class="Apple-style-span" style="font-size: large;">Nobody discussed the response rate with me, but it seems to be in the 25-40% range, with only rare complete remissions.</span>Anonymousnoreply@blogger.com3tag:blogger.com,1999:blog-1205690253746006152.post-2590098983660697272012-01-31T18:17:00.000-08:002012-01-31T18:17:10.223-08:00The Bad News Doesn't Stop<span class="Apple-style-span" style="font-size: large;">This morning, while being prepped for my PET scan, I answered my cell phone. It was Dr. Flam. He had just received the pathology report on biopsies of my distal esophagus done by Dr. Lewis on Thursday. The biopsy material contains Merkel cell carcinoma.</span><br />
<span class="Apple-style-span" style="font-size: large;">Shortly after arriving home, Dr. Stobbe called me with the results of the scan. There is a large mass of tumor around my lower esophagus, up to 6 cm in length. There are also positive nodes in my upper abdomen.</span><br />
<span class="Apple-style-span" style="font-size: large;">I have an appointment with Dr. Flam tomorrow at 3:00 PM at which time he will recommend more chemotherapy. Dr. Lewis agrees with that, but I will await the opinion of Dr. Nghiem. I spoke with Dr. Blom, who works with Dr. Nghiem. He was in Washington but will be back in Seattle tonight. I will fax or email the path report, and images from my Barium Swallow tonight, and images from my PET and the report tomorrow. </span><br />
<span class="Apple-style-span" style="font-size: large;">I began home hyperalimentation today. </span><br />
<span class="Apple-style-span" style="font-size: large;">Last night, I had the most sleep I've had in a week. It was the peaceful sleep of the ignorant. I wonder if I will sleep that well tonight.</span><br />
<span class="Apple-style-span" style="font-size: large;">I am not in pain, and the nitroglycerine helps me drink fluids. I have had 2 bottles of Boost Plus today. </span><br />
<span class="Apple-style-span" style="font-size: large;">I am hoping there is an experimental protocol which will offer me potential benefit, because it seems that more chemo will buy me a period of misery without any guarantee of a period of normalcy to follow, and may preclude any effective experimental protocol.</span><br />
<span class="Apple-style-span" style="font-size: large;">It should all come together in the next few days.</span>Anonymousnoreply@blogger.com7tag:blogger.com,1999:blog-1205690253746006152.post-9438082113639310802012-01-30T18:43:00.000-08:002012-01-30T18:43:01.559-08:00Brief Update I am home<span class="Apple-style-span" style="font-size: large;">Monday Evening.</span><br />
<span class="Apple-style-span" style="font-size: large;">I am home from the hospital finally.</span><br />
<span class="Apple-style-span" style="font-size: large;">I have a PET/CT scheduled for tomorrow morning.</span><br />
<span class="Apple-style-span" style="font-size: large;">With nitroglycerine to relieve esophageal spasm, I was able to have Boost+ tonight.</span><br />
<span class="Apple-style-span" style="font-size: large;">Continue hyperalimentation tomorrow.</span><br />
<span class="Apple-style-span" style="font-size: large;">Depending on the results of the PET/CT, perhaps a removable esophageal stent is in the offing.</span><br />
<span class="Apple-style-span" style="font-size: large;">It will take some time for me to chronicle the events of the week-end and to post images from my esophagram and hopefully from my PET/CT.</span><br />
<span class="Apple-style-span" style="font-size: large;">This all awaits a future post.</span>Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-1205690253746006152.post-23466960008928712402012-01-28T16:06:00.000-08:002012-01-28T16:06:00.886-08:00Saturday Afternoon At St. Agnes Medical Center<span class="Apple-style-span" style="font-size: large;">Just a brief update. It has been frustrating, but I have been in my hospital room since 3:00 AM. I had a Barium study this morning and will post pictures when I get home. Hyperalimentation will start tonight. I will be seen by Dr. Flam Monday morning, I presume in the hospital and go home Monday to continue hyperalimentation at home. </span><br />
<span class="Apple-style-span" style="font-size: large;">Surprisingly, the Barium went down to my stomach passing around a huge glob of goo un my upper esophagus. The lower esophagus is very narrow and tortuous, but no evidence of malignancy there.</span><br />
<span class="Apple-style-span" style="font-size: large;">The last piece of the puzzle will be a scan, either PET/CT or CT to see if there is malignancy in the area. I am optimistic there is not. We will then need a strategy to deal with the lower esophagus.</span><br />
<span class="Apple-style-span" style="font-size: large;">Judy has been a Jewish Saint during all of this. Thanks to well-wishers. </span><br />
<span class="Apple-style-span" style="font-size: large;">More details to come, depending on the degree of insomnia tonight and my mental status.</span>Anonymousnoreply@blogger.com3