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.

PERSONAL DATA:

            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]

EDUCATION:

            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.
                                                            Pathology
                                                            January 1968 - June 1968

                                                            McGill University-Jewish General Hospital
                                                            Radiology 
                                                            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]

LICENSES/CERTIFICATIONS:

            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]

MEMBERSHIPS:

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

CLINICAL ASSISTANT PROFESSOR: U.C.S.F.
                                                                        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.

Wednesday, March 28, 2012

I'm Still Alive

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.
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.
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.
I had blood transfusions, platelet transfusions, drugs to encourage WBC production, labs, regular blood sugar measurements with oversized lancets, insulin.
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.
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.
Today, I saw Dr. Dale Merrill, an old colleague and cardiologist who confirmed I am on the right track.
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.
Probably I will have a follow-up PET scan in the next 2 weeks to learn more.
So, after lying in my hospital bed conjuring up methods to hasten my demise, I now have room for optimism.
Tonight, I plan to briefly appear at the Lady Antebellum concert at the Save Mart Center.
I hope to be alive to celebrate 50 years of marriage to Judy, who has been a rock in support of me.

Monday, March 12, 2012

Ignoring the Sword of Damocles

Dad wrote a post 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.

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 sentence to higher courts."  Until now, we were hoping his conviction 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 sentence 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.

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.

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.

Thurgood Marshall wrote in a dissenting Supreme Court opinion "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."

Our challenge is to find moments we can ignore the Sword of Damocles. 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).

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?"

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.

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.

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."

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.

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.

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.

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.

Footnotes:
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.