I 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.
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.
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.
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.
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.
At 9:26 I called one brother; at 9:27 I called the other. I gave them the little information I had.
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.
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.
We walked to the front desk in emergency. My mom explained that ...
* * *
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.
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.
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.
** Email sent Date: Wed, 18 Apr 2012 10:07:59 -0700
subject: "Update 10:06"
He has arrived by ambulance. He is in the ambulance bay. We are not yet allowed to go back to see him. We expect the go in a few minutes. Will then be more to let you know.
Sent from my iPhone **
** Email sent Date: Wed, 18 Apr 2012 10:24:02 -0700
Just arrived via ambulance to st Agnes. Irregular heart rate andrhythm. Low spO2. Did [SIC, should be did not] feel he could tolerate car ride to hospital.More if there is more. Please share with his siblings.
Sent from my iPhone **
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."
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.
** Email sent Date: Wed, 18 Apr 2012 10:50:22 -0700
Subject: Update 10:44 am
Mom is in there with dad. I'm in waiting room due to "one visitor at a time policy".
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.
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.
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.
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.
I should create a macro for the term "this sucks", since I'm writing it a lot. This sucks.
More when there is more to share. **
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.
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.
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:
** Email Date: Wed, 18 Apr 2012 10:59:01 -0700
Subject: docdave back at hospital
To: [ mcc google group ]
New update, dad is back in the hospital. **
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.
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 don't
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.
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 will
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.
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.
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.
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:
** Email: Date: Wed, 18 Apr 2012 11:46:50 -0700
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.
He expects to be admitted overnight.
Sent from my iPhone **
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.
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:
** Email: Date: Wed, 18 Apr 2012 11:50:49 -0700
Subject: Re: Update 11:43
Correction. I misread blood pressure. 113/47
Sent from my iPhone **
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.
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.
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:
** Email: Date: Wed, 18 Apr 2012 12:03:49 -0700
Subject: Re: Update 1201
O2 saturation took a nosedive before recovering.
Dad is kind of out of it on and off.
I'm not an MD so my intuition means little scientifically, but I have a very bad feeling in my gut about this one.
Sent from my iPhone **
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.
We got word that the ER doctor wanted to admit him to the ICU, but they first whisked him off to x-ray.
** Email: Date: Wed, 18 Apr 2012 12:07:28 -0700
Subject: Re: Update 1206
On his way to X-ray.
ER doctor wants him admitted to ICU. we'll see if there is an available bed. **
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.
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.
** Email: Date: Wed, 18 Apr 2012 12:31:43 -0700
Subject: Update 12:28
He has been admitted to ICU.
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.
Sent from my iPhone **
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:
** Email: Date: Wed, 18 Apr 2012 12:22:16 -0700
Subject: Update 12:20
Dad read his own chest X-ray. Described it as bad, bilateral pneumonia.
I'd be shocked if he isn't in the ICU overnight.
Sent from my iPhone **
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:
** Email: Date: Wed, 18 Apr 2012 12:58:57 -0700
Subject: Re: Update 12:58 bad news. Possible rapid development.
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."
He is giving instructions that make it highly likely he will not live much longer.
He is peaceful, tired, kind, and entirely unemotional.
Sent from my iPhone **
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.
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.
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.
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.
** Email: Date: Wed, 18 Apr 2012 13:46:13 -0700
Subject: Update 13:46
Dad about to be moved to ICU 12 on the B side
Sent from my iPhone **
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.
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.
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.
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.
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.
** Email: Date: Wed, 18 Apr 2012 17:11:24 -0700
Subject: Ct done
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
Sent from my iPhone **
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.
As I wrote two months ago
, 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.
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.
** Email: Date: Wed, 18 Apr 2012 17:34:48 -0700
Subject: Update 17:27
No ct results yet
The cardiologist was just in. He said the prognosis was bad. He apologized for not having "anything good" to tell us.
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.
My subjective evaluation of his appearance and affect is also pessimistic.
Mom and I are both having trouble seeking a path that ends with him going home, but of course we're hoping.
Sent from my iPhone **
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.
Blood oxygen saturation
** Email: Date: Wed, 18 Apr 2012 17:56:06 -0700
Subject: Re: Update 17:27
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.
They won't say it out loud, but he's crashing.
Sent from my iPhone **
. 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 pulse oximeter
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.
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.
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.
** Email: Date: Wed, 18 Apr 2012 18:29:33 -0700
Subject: Ct results
Left lung better than right, pretty clear but left bronchial branch is totally blocked so he can't use that lung tissue. Right ling quite bad, lots of infection but open bronchi. They may insert left bronchial stent tomorrow. Central line going in now.
Sent from my iPhone **
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.
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.
I took the forced time away from dad as an opportunity to pull out my laptop and update dad's blog
. I wrote "He seems to be cogent, at peace, and just wants to stop hurting."
** Email: Date: Wed, 18 Apr 2012 18:47:17 -0700
Subject: Another post, doc dave doing worse
To: [Merkel Cell Google Group]
** Email: Date: Wed, 18 Apr 2012 18:48:30 -0700
Subject: Another post, doing worse
To: [Large bcc list of Dad's friends and relatives]
This has already been a long day. Going to be a long week no matter howtonight turns out. **
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.
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.
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.
** Email: Date: Wed, 18 Apr 2012 19:21:05 -0700
Subject: Re: Ct results
Central line went in OK. They kicked us out (again) so they could xray him to confirm that the line was placed properly.
His breathing is really labored. He is also getting serious discomfort with the BPAP [SIC should be BiPAP] mask. The doctor ordered another dose of hydromorphone with the goal not of eliminating pain but of relaxing dad enough so that he can allow the machine to breathe for him. Mom went to get dinner. She's rattled but seems to have accepted things are serious. **
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.
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.
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.
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.
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.
** Email: Date: Wed, 18 Apr 2012 20:36:41 -0700
Subject: Update 20:33
He has central line and foley catheter. He is working extremely hard to breathe.
I spoke with the nurse outside the room and told him I didn't want to go home and have my dad die while I'm home. He said in that case I should not go home. He said he didn't think it more likely than not that dad dies tonight but that it wasn't a remote risk either.
Sent from my iPhone **
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.
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.
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.
** Email: Date: Wed, 18 Apr 2012 22:09:13 -0700
Unconscious. Unable to awaken him. Non responsive. No longer BPAP [SIC should be BiPAP] candidate per nurse. Nurse says death may be imminent.
Sent from my iPhone **
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.
** Email: Date: Wed, 18 Apr 2012 22:17:22 -0700
Subject: Re: 22:07
The nurse just brought Kleenex. So the nurse thinks we're at the about to need Kleenex phase.
Mom says she is near vomiting.
Sent from my iPhone **
My brother Michael responded almost instantly with an email "Me too. Its late here, but sleep isn't happening."
I was fighting to strike a balance between feeling my emotions and retaining enough control to be there for my dad and my mom.
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.
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.
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."
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. I described what I observed in my eulogy, and the written version is part of this blog as a separate post
. This post is about my dad's last day of life, and sadly he died at 10:55 p.m.
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.
** Email: Date: Wed, 18 Apr 2012 23:13:51 -0700
Subject: docdave passed away
To: [Merkel Cell Cancer Google Group]
Will be a blog post after I get my thoughts together. He died 10:55 pm **
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:
** Email: Date: Thu, 19 Apr 2012 08:16:56 -0700
Subject: Dave Shuster
From: Gary Shuster 
To: Paul Nghiem 
Thank you so much for the support you provided my dad. He died last night. Some people would like to make donations to MCC research in his name. Could you please provide me with the information I need to put into obituaries to instruct people as to how to make those donations?
Again, thank you for what you did for him. I don't think anything could have extended his life beyond the years he had, but thanks to you the treatments he underwent were not the debilitating and ultimately unhelpful ones such as a radical neck dissection. Thanks to that, he was able to take many cruises and vacations and enjoy birthdays with his grandkids. **
His response, as always, was prompt and written from the heart.
** Email: Subject: Re: Dave Shuster
From: Paul Nghiem 
Date: Thu, 19 Apr 2012 09:36:39 -0700
To: Gary Shuster 
I am so sorry for your loss.
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.
Thank you for thinking of others with MCC at this time regarding donations in honor of your Father.
Relevant information is below, and can be obtained directly via:
Paul Nghiem **
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.
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.
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.
I sign this post using the same Jewish nomenclature I used when I signed the memorial book at his funeral:
Gary, son of David; Gershon ben David