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!

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."

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/