Sunday, April 22, 2012

Thank you, MCC Google Group

I wrote an email to the Google Group for MCC (, 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:

Thank you all for your wishes and your kind praise of dad.

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.

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.

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.

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.

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.

The power of community cannot be overstated, and the power of this community is particularly strong.

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.  

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.

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." 

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.

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.

Saturday, April 21, 2012


The following obituary ran in dad's hometown newspaper:


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 moved to Fresno in 1976.  He was a talented diagnostic radiologist well respected within the medical community.

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.

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.

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 or to Temple Beth Israel at 6622 N. Maroa Ave., Fresno 93704.

The world is a better place for Dave’s being here.  He lives on through his children, grandchildren, and kind deeds. 

Friday, April 20, 2012


Dad 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.

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.

I miss him already.

Wednesday, April 18, 2012

Back in the ICU

Dad is back in the ICU.  His situation is very serious.

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.  

One of the nurses and one of the doctors, on different occasions, said that the outlook was very bad.

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."

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.

He seems to be cogent, at peace, and just wants to stop hurting.

I love him.  I hope tonight goes the way he wants it to.

Following an ambulance

It is a surreal experience to follow an ambulance with your father in it.

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.

My mom and I filled the paramedics in.

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.

I'm post more when there is more.  At this point, it is all scary, sad, and a great unknown.

Monday, April 16, 2012

About the Author -- Curriculum Vitae

                                                         CURRICULUM VITAE

                                                      DAVID N. SHUSTER, M.D.


            Date of Birth:              August 18, 1940

            Place of Birth:             Montreal, Canada

            Marital Status:             Married (Judy)

            Address:                      [redacted]
                                                Fresno, CA 93720

            Telephone:                   Business:        [redacted]
                                                Home:           [redacted]


            COLLEGE:                            McGill University
                                                            B.S., 1961

            MEDICAL SCHOOL:           McGill University
                                                            M.D.C.M., 1966

            INTERNSHIP:                       Jewish General Hospital-Montreal
                                                            June 1966 - June 1967

            RESIDENCY:                                    Jewish Hospital-Brooklyn, N.Y.
                                                            Obstetrics and Gynecology
                                                            June 1967 - December 1967

                                                            Brookdale Hospital-Brooklyn, N.Y.
                                                            January 1968 - June 1968

                                                            McGill University-Jewish General Hospital
                                                            July 1968 - June 1971

PRACTICE:                         Diagnostic Radiology
                                                St. Mary's Hospital, Montreal
                                                June 1971 - August 1976
                                                Saint Agnes Hospital, Fresno, California
                                                September 1976 - April 1993

                                                Fresno Imaging Center Medical Group
                                                May 1993 – December 2004

                                                Sierra Imaging Associates Medical Group
                                                January 2005 to present

                                                [Note that this version of the CV predated his work at Kaiser]


            L.M.C.C.                                                               1968
            National Board of Medical Examiners                       1967
            Certified Specialists of Province of Quebec               1971
            Fellow of Royal College (by examination)                 1971   
            Royal College certification (Radiology)                     1971
            Diploma of American Board of Radiology                1972
            California Certificate Number                                  [redacted]


            Fresno-Madera Medical Society
            California Medical Association
            Central Valley Radiological Society
            California Radiological Society
            Radiological Society of North America
            American College of Radiology

                                                                        1980 - 2000

LECTURER IN RADIOLOGY:                McGill University
                                                                        1973 - 1976

PUBLICATIONS:                Shuster, D., Palayew, M.J., "Accordian-Like Compression of a Calcified Splenic Artery: A Plain Film Roentgenographic Sign of Splenic Enlargement". AJR 116:423-425, 1972.

Saturday, April 14, 2012

PET Results

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. 
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.
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.

Monday, April 9, 2012

Status Quo except increasing right sided pain

Here is the latest update of my physical and mental status.
I am awake and oriented, relatively alert although with decreased ability to concentrate.
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.
Judy worked very hard to make this a success.
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.
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.
We have had a few close friends come for brief visits.
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.
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.
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.
But enough drowning in self pity.
The sky is clear. It's warm ouside. I shall sit out and catch some rays.
I can get around quite well with my walker. 
It is only 1 1/2 months until Judy and I celebrate 50 years of marriage.
Sara turns 5 today. She and Bel will visit this afternoon.