My Battle with Merkel Cell Cancer

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
subject "Dad"
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 nonconfrontational
(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
My Battle with Merkel Cell Cancer
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