Good News So You Must Pay Up

Happy Agnostic Chanukah (much belated), Merry Agnostic Christmas, or the Agnostic Winter Solstice Holiday of Your Choice

I am not dying . . . quickly. Had my CT Scan on Tuesday and the news was good. Lots of shrinkage of tumors in the liver and on the Pancreas where it all started. The regimen for the time being is: I get a shot of Sandostatin, which has positive effects on my health, limiting the effects of my cancer on my digestive system and greatly remunerating a pharmaceutical company. It is also literally a pain in the ass.

I am also scheduled for a consult with a surgeon on December 30, so we will see what possibilities there are in cutting me open and removing these tumors. Again not a cure, but a strong possibility of positive outcomes. If enough tumors have shrunk or disappeared, than they can get the scalpel out. I’ll keep you updated.

Now in the holiday spirit, open your wallets and as you make your annual holiday charitable donations, I hope you will consider the most important one: ME! Please send your checks to: . . .
While I might not turn away your checks, I hope you will instead consider a small (or enormous, if you got it) donation to the Caring for Carcinoid Foundation. http://www.caringforcarcinoid.org/ Okay it is my most self-interested appeal, as it funds the research that could potentially save my life. Not only that, but for the holiday season there is the Goldhirsh-Yellin Foundation Awards Major Challenge Grant to the Caring For Carcinoid Foundation. That’s $1 million challenge in matching funds. It is really easy to meet the challenge, just donate and then you won’t feel guilty.

The interesting part of this appeal is that the only reason you even heard of this foundation or would donate is me. (Aren’t they lucky I got cancer?) And that the odds of any of their research helping me is not great, nonetheless there is a self-interested aspect to it. It would have been much simpler if Steve Jobs, who died of pancreatic neuroendocrine tumors had donated a few hundred millions before or after he died and we would have clinical trials galore by now. Unfortunately, Jobs was a strange man who was in denial about his cancer and sadly died prematurely because he did not take action quickly. For whatever reason, neither he nor his wife funded any research. But I digress . . .

The cancer community is quite fascinating in its own right. With modern media, even predating the internet, but especially since, whole communities develop around cancer and other diseases. All we have in common is the same variety of killer cells growing in our bodies, but they bring us together for advice on doctors, treatments, diets, coping, conferences, thankfully, not usually, prayers. I think this is due, in part, to the confusion as to how conduct prayers in such a diverse community. Yet I might be wrong, at least hatred of cancer is something we all agree on and doctrinal differences can be ignored. A proposal for our faith: the “Church of we all hate cancer and all the other shitty diseases that kill people prematurely” The name is a little long, but I can work on shortening it.

The notion of dying prematurely is an interesting one. I haven’t done much historical research on this, but our notion of a long life and fighting disease have changed so radically. In 1900 in the US, the average life expectancy for a man was 46.3, so I wouldn’t have much to complain about then. Nobody had a clue of what to do with cancer; you just died. Public health science had just figured out germ theory, teaching surgeons to wash their hands before cutting their patients open. That was a great advance!

Another aspect of dying is the issue of when to stop treatment or take extraordinary measures. I remember this clearly when my Grandma Ellie died at 90. Aside from her chronic depression, she was obese with type 2 diabetes. At the end, they amputated one of her legs, she was clearly dying and was ready to go. I don’t remember all the details clearly from nine years ago, although she did ask my mother to push her out the window of her hospital room in her last days. As the end neared my mother and her siblings made a decision, that was clearly attuned my grandmother’s wishes, to let her die as peacefully as one could and to stop extraordinary measures to keep her alive. I am sure if my grandmother isn’t anything more than ashes in an urn she would be pleased.
As for me, I’m not dying particularly quickly, but the idea of when one might want to stop treatment and pump me up with morphine is not ever present in my mind, yet it is something I think about. And on that upbeat note . . . happy Saturnalia!

Dreams of Prostate Cancer

My dream is to live long enough to be diagnosed with prostate cancer. So why do I want another cancer. It’s not for extra Sloan Kettering hot chocolate, however tasty it might be. Nor is it for the possibility of extra radiation or chemotherapy, despite their inherent appeal. No, it’s based on the statistical certainty that all men will eventually get prostate cancer, so if I live long enough to have prostate cancer than I will have beaten the odds on neuroendocrine tumors. Many of you may not be aware that when I first got the cancer diagnosis, the oncologist in Brooklyn added a PSA test. The results were so high that I got to have a full prostate exam followed by a prostate biopsy. While I would have preferred a vacation to North Korea, in part because I am not a relative of Kim Jong-Un, the tests came back negative. What we later discovered was that the PSA test was a marker for my cancer, since it went to normal when my tumors shrunk.

That brings us to the good news. My blood tests are all normal or very close to normal and my PSA test has dropped and is now in the normal range. My cancer antigen test is still in the stratosphere, but has been dropping, leading to the conclusion that my cancer cells are still crying in pain. The bicycle barometer also indicates that I am in good health. I’ve been doing 19 mile rides with laps in Prospect Park and my last two weekend rides I did 54 and 46 miles. After getting my folding bicycle fixed, I have been commuting to work by bicycle. While this may seem slightly crazy given the cold, but by dressing in layers, a ski helmet and a balaclava it is actually much fun and I do not get cold. Anyone want to join me?

The day of discovery is drawing near. Next Tuesday I have my CT Scan and will see what the tumors are up to. I am hopeful, since, except for some mild pains in my back, I am feeling quite well. I have now had no chemotherapy since June and after recovery from the radiation, this is the longest stretch I have had of almost feeling normal. That is if you ignore the neuropathy and the periodic diarrhea, which can thankfully mostly be ignored. In any event, let’s hope for good news next week.

My final thought is that your life is never the same after you are diagnosed with incurable cancer. It’s a little like a Bar Mitzvah. “Today you are a man.” “Today you are a cancer patient.” Both are very important milestones in a person’s life. At one you read from the Torah, have a party and get gifts; the other you get radiation, chemotherapy and the near certainty of a shortened life. Okay, maybe they aren’t alike, except if you eat too much at the Bar Mitzvah party, you’ll get sick and vomit. Vomiting, that’s the connection!

Sisyphus Revisited

Well there has been a confluence of meaningful dates: Camus' 100th birthday, 75th anniversary of Kristallnacht, 24th of the fall of the Berlin Wall, and NET (Neuroendocrine Tumor) day. Don't think there's a deep significance to this, but has led to some interesting reading this weekend. An interesting review of a book on Camus and his birthplace Algeria, an amazing video on the rise of the Berlin Wall from the Archives and lots of Facebook postings on the joys of neuroendocrine tumors. On that topic, Michele and I traveled to Edison, NJ last weekend to attend a carcinoid cancer conference (NETs and carcinoid are synonymous.) Always good to get an update and see photos of tumors cut out of people. I felt like a minor celebrity when I told people that I had just returned from Basel and PRRT treatments. We were also the only people to arrive via mass transit; a train from Penn Station and a 1.5 mile walk.

As to my health, my blood work except for one test is normal. Perhaps the best indication of my health, how fast and how long Steve can pedal up and down hills in Rockland County, is returning to normal. On Sunday morning I got on the bicycle and rode 61 miles up the West Side of Manhattan, over the GW Bridge, 8 miles on River Road, then up 9W to the Bear Mountain Bridge, and finally to the Garrison train station to take me to Grand Central Terminal. I came home and still had some energy. It looked something like this: http://www.mapmyride.com/workout/428103349 This is the best indication that the radiation is finally wearing off. Let's hope it lasts awhile. I'm hoping to assess my options after a Ctscan in mid December.

Not much new to report on the health front, but my old buddy Sisyphus was on my mind again. At first, I thought I was Sisyphus pushing the rock up the hill trying to extend my life. While there is some truth to that, I now realize that it is the oncologist who is more truly Sisyphus. Other doctors are generally trying to maintain the health of long term patients, while in the world of cancer the positive goal marks are five year survival rates and cancer drugs are often measured in how many additional months they can keep a patient alive. Not exactly an upbeat profession! Those who work in geriatric care, nursing homes, and hospices have to say goodbye regularly to their patients, but it isn't a lost war or watching a rock roll down the hill again and again. (Now as Simon & Garfunkel sang I am truly a rock.) In my fight for survival, I have always referred to my treatments as Dr. Yu's bag of magic tricks. (Perhaps I think he is Gandalf.) Dr. Yu, in a more martial description, calls them bullets, but I think he is in a war with the out of control cells in my body trying to envelop and eventually destroy my liver and wherever else they might travel. (That does sound gruesome.) At least these Sisyphi are well paid and get to go home to their families after a day of rock pushing, a much better existence than Dr. Bernard Rieux in "The Plague." Conditions of cancer and the plague are both on some level absurd, but, needless to say, I wish the oncologists well in their struggles.

Am I a Freak of Nature?

                Am I that exceptional? I keep reading in the NY Times and listening on NPR, those bastions of liberal thought that humans are genetically/biologically hard wired to believe in the supernatural.  If so, my wiring must be really messed up.  T.M.Luhrmann’s recent article on the op-ed page  cites the high percentage of Americans who believe in various kinds of superstitions like angels, haunted houses, etc.  Citing the United States as the norm is absurd and I am pleased to report that 64% of the French are agnostic or atheist.  (Another reason, in addition to their vastly superior health and social services and food, to live there?)

                What really got me was a letter to the editor responding to the article by Professor Shane Sharp, whose studies showed that “Ms. Luhrmann’s claim that experiencing God’s realness is difficult may be correct; however, my research indicates that traumatic life events make God real.”  For the record, I neither cursed God, blamed God or asked for intervention from God, an angel or some higher power.  And not to make myself into a martyr, but I do consider a cancer diagnosis a “traumatic life event.”  What I don’t understand about these evolutionary biologists is why I don’t see studies from France, Scandinavia or other countries where levels of belief are comparatively lower.  Surely there will always be people who believe in God and various types of superstitions, but belief in a higher power clearly has a cultural component, can change over time, and Is not some sort of biological imperative.  Either that or the majority of the French, the Swedish and I are freaks of nature!  And while I remain an agnostic, the possible God I believe in is best described as the “Church of God, the Utterly Indifferent,” from Kurt Vonnegut’s The Sirens of Titan. (“The name of the new religion, said Rumfoord, is The Church of God the Utterly Indifferent. . . The two chief teachings of this religion are these: Puny man can do nothing at all to help or please God Almighty, and Luck is not the hand of God.”)

                Enough of my annoyances with these studies creating scientific justifications for faith.  I imagine many believers might also be annoyed by these studies.  Let’s get on with a discussion of my life, the reason most of you are probably reading this.  I got on the plane on the Thursday after my treatment and have not developed any superpowers.  I bought a bottle of 15 year old Bowmore Scotch whiskey in the duty free with my leftover Swiss Francs, got on the plane only to discover that my seat was next to a six year old boy.  Many of you might want to avoid a small child on airplane, but I was told to avoid contact with small children and pregnant women after my irradiation.  Fortunately, I spoke with a flight attendant and got another seat in the last row unfortunately near the bathrooms. C’est la vie.

                After I returned home, I found myself suffering from a constant fatigue and basically sat around the apartment from Friday-Monday watching lots of television, reconsidering Star Trek: Enterprise (all Star Trek TV series are now on Netflix instant) and watching the Monty Python six part documentary.  Later my friend Claudia and I watched “MontyPython’s Life of Brian” a classic satire on religion and Trotskyist political sects (a different form of religion?) .  I was able to return to work on Tuesday where I helped to edit and advise on our latest YouTube video, “Fiorello La GuardiaTakes a Sledge Hammer to Slot Machines: Let's Go to the VIDEO!”  La Guardia hated gambling and its effects on working class families. and cops frequently cleared out slot machines from stores in NYC during his tenure.  Fiorello would then have them put on a boat where he would ceremoniously take a hammer to them and have them dumped into Long Island Sound.  One does not have wonder much what La Guardia would have thought of Andrew Cuomo’s proposals for casino gambling or, for that matter, Cuomo in general.  After Cuomo came out against Bill de Blasio’s proposal of a modest tax increase to fund pre-K and after school programs, I came up with his new reelection slogan, “Andrew Cuomo, no millionaire he won’t kow tow to.”

                Last Saturday I decided I felt well enough for a 60 mile ride in Central New Jersey.  It was a beautiful day and a wonderful ride, but I wasn’t quite ready for it and came back exhausted. I fell asleep at 8:00 and woke up the next morning with a headache and still very tired.  I still had a headache that evening.  I’m not sure what the causes were: dehydration, post radiation effects or both, but I may have misjudged my recovery time.  I saw Dr. Yu on Monday and my blood work was pretty normal.  A couple of tests were slightly elevated, but looked good otherwise.  The plan for now is the Sandostatin shot I had already been receiving as my only treatment.  We talked about the possibility of chemoembolization to get at larger tumors on the liver, but we’ll wait and see.  We will have a clearer sense of things after my next CT Scan in mid-December and no scheduled doctor visits until then.  With any luck I will have a few years of peace from cancer and lead as normal a life as I am capable of in the interim.  Then it will be back to Basel in search of superpowers.

As Good As It Gets

And the word of the Lord was good. I mean the nuclear medicine doctor. My blood work is markedly better than when I came here 2 months ago. The scans showed reduction of tumor size, especially in the liver. Absorption of the radiation was better than the last time, which was quite good. Doctor Wild thought that I could see shrinkage or stability of the tumors for 1-2 years, maybe more. I will need a follow up scan in 10 weeks and bi weekly blood work, which will show how this treatment worked. Because there were no significant effects to my bone marrow or kidneys, I should have no trouble repeating this treatment when necessary. A woman who was being treated with me is on her 5th visit. He also said that I should continue on the Sandostatin and perhaps consider chemo or radio embolization of my liver. When I see Dr. Yu in two weeks I'll talk it over with him.

Basically my response to treatment was as good as it gets.

In terms of other effects, I've had short bits of low level nausea, but the Zofran keeps it under control. I think the Emend has also made a significant difference. My appetite is good and energy levels are relatively high. I think I am mostly over the jet lag. I had dinner with Charlie and Sylvia at an Italian restaurant near the hospital and we took a walk along the Rhine. If you look at my Facebook page,Sylvia's photos should be there. I get out tomorrow morning and then its on to visit Roman ruins outside the city. Then we are off to Zurich and 10:00 plane to JFK on Thursday.

Maybe there is hope for a ripe old age yet. Until then back to planning ridiculously grueling bicycle rides. Gaps of Vermont this summer anyone? http://youtu.be/QOcyIuFo8P4 (I think this would be a two day ride for me.)

DESCRIPTION
"131 miles, 6 major climbs & 12,000* feet of elevation gain! I went out on a beautiful day, with temps in the 80's. I started around 10:30am and finished around 8 hours later. Elizabeth followed me along in the truck and captured the footage that you see here.The 6 gaps are, Brandon Gap, Middlebury Gap, Lincoln Gap (24% grade), Appalachian Gap, Roxbury Gap & the Rochester Gap."

Back in Basel, Looking for a Bagel

After I arrived at JFK on Saturday using a circuitous route (taking the A into Manhattan, transferring to the E, and getting on the AirTrain in Jamaica) because the A was terminating (should cancer patients be allowed to use that word?) at Euclid Ave and had no service to Howard Beach/JFK.  I then flew overnight to Dusseldorf on Air Berlin and after a layover there, I continued on to Zurich on a quick plane ride. My friends, Charlie and Sylvia were there to pick me up (Thanks again for doing this.) and we drove on to Basel and are staying at the Hotel Euler, a charming 19^th century hotel that has nice modern conveniences.  (Michele, unfortunately, is completely swamped at work and is running low on vacation days to boot.) After naps, we took a tram to the Rhine River and walked along the shore.  After our return to the hotel, which is right by the train station, we went out for an early dinner at a Swiss/German restaurant.  Jet lagging setting in we called it an early night.

This morning I slept until 8:15 after falling asleep at around 10:30 last night.  We ate breakfast at McDonald’s, discovering that a light breakfast at one of the local restaurants would cost 20 French Francs, more than 20 dollars.  (Swiss McDonald’s are more civilized than their US counterparts.)  After a short tram ride we arrived at the Universitätsspital Basel for my irradiation.  (I am amazed at how the German language developed really long compound words. The longest word in German was Rindfleischetikettierungsueberwachungsaufgabenuebertragungsgesetz, but Germany recently retired it.  http://www.bbc.co.uk/news/world-europe-22762040)  I, shockingly, digress again.  Ah yes, irradiation.  My second and last treatment in this cycle went smoothly today.  We arrived at 10:30 and after admittance and signing forms that made me an indentured servant to the hospital, the doctor took a few vials of blood and then began an IV of amino acids to protect my kidneys from the radiation.  At around 1:30 they took me down to a place I fondly call the Hiroshima Room and they encased my arm in lead (always comforting) and hooked up my IV to receive the yttrium 90 and indium 111.  The whole process takes about 15 minutes and that includes the brief nausea and vomiting the radiation induces in me despite the use of Emend, my favorite anti-nausea drug.  Oh well, my lunch wasn’t that good and I didn’t really want it anyway.

Since then, my nausea has not appeared and dinner was much better than lunch so I am inclined to keep it.  This time around I have a private room, which is good and bad.  Privacy is good when I want to listen to music without ear buds, but it is a little isolating since I am currently not allowed guests.  On the plus side, it leaves more time to write my blog. 

Tomorrow I have no planned activities until 1:30 when I get my CTScan to see how everything is looking inside me.  I then have my meeting with Professor Doctor Doctor Damian Wild (Germans love titles.  I am only Professor Doctor, merely an adjunct assistant professor, and have an inferiority complex because of it.  I am amused when German politicians are found guilty of faking their Ph.Ds. or plagiarizing their dissertations and have to resign.  Which reminds me why is Doris Kearns Goodwin allowed to show her face in public, let alone have a publishing contract or be treated as an expert on PBS? http://www.salon.com/2012/08/19/americas_worst_historians/)  I’ll let you know what his prognosis is tomorrow and maybe how to get Goodwin off TV or at least to say she is sorry sincerely.

In the afternoon I will be allowed to take a walk outside in the park as long as I stay away from small children and pregnant women; it’s like I am to be treated as someone of guilty of sex crimes for a limited period when all I am guilty of is irradiation.  ( I think I better understand the travails of the mutants in X Men.  The world had better hope that these radiation experiments don’t turn me into Ian McKellen, aka Magneto.)  I will then spend another night of fun and games, blogging, listening to music, reading Diane Ravitch’s latest, Reign of Error, and watching the “Phil Silvers Show” on YouTube.  After a quick breakfast on Wednesday, they throw me out of the Universitätsspital Basel to prepare for the next patient.  I will hopefully be sightseeing with Charlie and Sylvia after my release and then on to Zurich Thursday morning for a direct flight to JFK and then the A and AirTrain to Concord Village.  I hope, but doubt our government will be open for business by then.  Just remember, if default seems likely there is always Paul Krugman’s trillion dollar coin to solve our problems.   I love this idea because it is on one level totally absurd and on the other a realistic possibility to preventing default.  Dr. Evil should have his face on one side and a copper coated John Boehner, to match his skin color, on the other? http://krugman.blogs.nytimes.com/2013/01/07/be-ready-to-mint-that-coin/?_r=0

If you have time to chat, I am on Facebook instant messaging through most of the day, although I am going to sleep soon.  I’ll probably send an update tomorrow night.  Until then keep the faith, or your lack of it.

Steve

Prayer for an Oncologist

Shana Tovah!  To all you gentiles that’s Happy New Year

Its true we Jews have been working on the academic calendar for more than 5,700 years and this year Chanukah starts on Thanksgiving giving us a month’s head start in the gift competition with Christians.  I know we Jews will lose in the end to all but Jehovah’s Witnesses, who don’t celebrate the birth of Jesus that coincidentally coincides with the Roman holiday of Saturnalia, but we Jews can gloat for a month while Christians await their cornucopia of gifts as capitalists  inundate all of us with endless advertising and possibilities of grotesque consumption.

I digress again.  Rosh Hashanah is thankfully mostly devoid of consumerism, although I am waiting to see what the consumer capitalist economy can do to exploit Yom Kippur, perhaps developing pills which will make our stomachs full for 25 hours.  Who needs to wish people an easy fast when you can sell them a pill to really make it easy?

This year’s dilemma: how does the agnostic cancer patient celebrate Rosh Hashanah?  Tonight we recited the shehechehyanu, a prayer thanking God “for giving us life, sustaining us, and enabling us to reach this season.”  As someone who doesn’t believe in God, how do I make this prayer relevant to me?  I decided that it needed a rewrite.  To whom should I give thanks?  I thought for a brief moment and it came to me, my oncologist.  So here is my universal prayer, appropriate for all special occasions, for non-believing cancer patients everywhere.

Baruch atah onkolog shelanu  shehechehyanu, v'kiy'manu, v'higianu laz'man hazeh.

Blessed art thou our oncologist for giving us life, sustaining us, and enabling us to reach this season.

Dr. Yu doesn’t read this, but I want to thank him and all my other caregivers for helping keep me alive because without their care, I’d probably be dead by now.  Despite their effectiveness, I will not, however, write a “Prayer for chemotherapy.”

Speaking of my health, I suppose some of you read this to get my health update.  Except for neuropathy in my fingers and toes and the some low level pains in my back I feel fine.  I rode my bicycle 105 miles on Saturday so if we use that as my health barometer, my tumors aren’t having much effect on me.  My blood work is normal or close to it so my liver is working well. 

This Sunday I will be marshaling the Transportation Alternatives NYC Century, which means I will be riding 75 miles of the route, fixing flats, putting chains back on, and giving directions.  Hopefully that will be all the work and I won’t be seeing any accidents.

At the Archives, I’ve been working on our calendar, this year’s theme is the Supreme Court and the Constitution, and working on archival videos to put up on YouTube.  The latest is a series of Ed Koch campaign commercials from 1977.  You can watch them and read my commentary at http://laguardiawagnerarchives.blogspot.com/2013/09/1977-ed-koch-campaign-commercials.html 

In other news on the health front, I will be returning to Basel for my next round of radiation treatments, the same treatment I received at the end of July, accompanied by my friend Charlie from October 5-10.  I figure it should be easier this time since I know the lay of the land and will be given Emend, my favorite anti-nausea drug.  Look for my updates as I sit around jet lagged and irradiated with nothing else to do. 

P.S.  I put photos of our Alaska trip online.  You can see them at:  http://www.flickr.com/photos/mslevine3/sets/72157635167536852/