Steve Jobs: Silent Neuroendocrine Tumor Survivor

In 2010, Forbes Magazine estimated Apple's Chairman and CEO Steve Jobs's net worth at 5.5 billion dollars, and Fortune magazine named Jobs as the single most influential person in business. Despite his money and influence, however, Steve Jobs has failed miserably in one critical area: as a survivor advocate for neuroendocrine tumors.

Neuroendocrine tumors (NET) cause carcinoid cancer, and Jobs had one. Like most things Apple, news of Jobs's health has been kept tightly under wraps, despite swirling conjecture. The first confirmation of cancer came from Jobs himself in an August 2004 email to employees, which he wrote from his hospital bed after having an islet cell pancreatic neuroendocrine tumor removed. The email was upbeat and boldly claimed that the surgery had "cured" him of cancer. Then, he went silent.

Jobs's ongoing secrecy about his cancer and treatment has spurred some outrageously false media reports, including a mistakenly published obituary by Bloomberg financial newswire in 2008. But instead of using these media glitches as an opportunity for advocacy, Jobs has just laughed them off - even jokingly quoting Mark Twain: "The reports of my death are greatly exaggerated".

So it was no surprise that Jobs made big news in March 2010 when he agreed to stand by Arnold Schwarzenegger's side at a press conference introducing new organ donor legislation. In front of reporters, Jobs publicly revealed that he had received a liver transplant in 2009, and spoke passionately about needing a "media campaign" to make an otherwise uniformed public aware of the need for organ donations. Again - Jobs said nothing about his rare underlying cancer, which is most likely the reason why he had to get a liver transplant in the first place.

Jobs's comments were akin to a parent at a GM press conference arguing for better breaks after losing a child in a drunk driving accident. While no one can argue against the importance of organ donations (or breaks), the root cause of the tragedy remains buried thereby squandering a unique opportunity to emotionally reach people on a life-saving issue.

I understand that Jobs is considered an indispensable asset to consumer confidence in Apple, which in turn affects stock prices; but as Charles de Gualle once said, "the graveyards of the world are filled with indispensable men." What if Jobs's legacy wasn't simply a cool phone and snazzy computer? What if he stopped looking for the hottest new gadget and started inspiring others to look for a cure for neuroendocrine tumors?

Charles de Gualle also said, "Faced with crisis, the man of character falls back on himself. He imposes his own stamp of action, takes responsibility for it, makes it his own." I hope that someday Jobs will make the fight against neuroendocrine tumors and carcinoid cancer his own, and use his iconic status to convince the world to join him.

Wafels & Dinges NYC

We had an appointment with Dr. Nash yesterday, who thought the wound looked absolutely fantastic, but told us to keep packing it until it completely closes. He also said that I no longer need to follow a low fat, low residue, low fiber diet - but to take it slow.

So what was the first thing Gary and I did when we left Sloan-Kettering's Manhattan office? We hunted down this legendary Belgian waffle truck, Wafels & Dinges, for my first post-surgery taste of raw fruit: strawberries.

I ordered a liège wafel (soft / chewy) covered in fresh strawberries and a tasty addictive spread called speculoos, which has the consistency of smooth peanut butter but tastes a little like gingerbread and caramel. As they say in Belgium: mmmmmm .... lekker*!

Now, I don't necessarily think this sinful treat was what Dr. Nash had in mind when he said, "take it slow", but in my defense - he did say to gradually start incorporating fruits and vegetables back into my diet, so why not eat some strawberries in style?


*lekker = (Dutch) adv. deliciously, with wonderful taste or smell; adj. delicious, tasty

Packing Progress: Wound Care

I'm home from vacation, and tomorrow we see Dr. Nash. Hopefully, he will tell us that my wound is healed enough to stop packing.

Wound Care 101

To recap: the incision from my laparoscipic right hemicolectomy got infected, so Dr. Nash had to re-open the wound. An open wound needs to be kept open, otherwise the top layers will heal over before the rest of the wound can close - creating a little pocket just ripe for infections.

In order to allow the wound to heal in layers, from the bottom up, you keep it open by packing it with sterile gauze. "Packing" a wound is exactly what it sounds like - you just shove as much gauze into the wound as will fit. This packing helps to fill open space, maintain a warm moist environment, and absorb drainage.

How much packing do you use? That depends on how deep the wound is. Initially, my wound took about 2 feet of packing (picture taken on July 30, 2010).


As the wound healed, it became more shallow and the amount of packing we had to use got less and less. Also, we did everything to accelerate the healing process, including changing the packing twice a day and increasing my protein intake.

Today, less than a month after it was re-opened, we can hardly fit more than a couple of inches of packing into the wound. The body's ability to heal is nothing short of miraculous, and I am grateful that we are almost over this little bump on the road to recovery.

For More HELP in wound care: visit the WOCN.org website.

Founded in 1968, the Wound, Ostomy and Continence Nurses Society (WOCN) is a professional, international nursing society of more than 4,600 healthcare professionals who are experts in the care of patients with wound, ostomy and incontinence.

Vacation from Cancer: Sea Isle City

(bottom) Gary on our porch in Sea Isle City (top) my friend Christine and I on our way to the beach

"There's an old saying that 'the pen is mightier than the sword.' We think it's also mightier than cancer." - Varian "Dear Cancer" Letter-Writing Campaign

In the past, Gary and I have shared a beachfront weekly rental in Sea Isle City, NJ with some of our closest friends. We were debating whether I'd be up to it or not this year, but ultimately decided that we needed to get away before we both went back to teaching in September.

We arrived Saturday, and it's been wonderfully relaxing for both of us. Overall, I've done really well - minus some cramping and bleeding around my wound.

Today was our first rainy day, so I took the opportunity to contribute to Varian's "Dear Cancer" Letter-Writing Campaign.

Basically, all you have to do is write a letter to cancer and post it at: www.varian.com/dearcancer/create.com. Varian will contribute $50 to the American Cancer Society for every letter that you post. My letter (with trip details) appears below. It's a little corny - but for a good cause.

Dear Cancer,

Maybe you've been wondering where I've been? I'm on vacation. Less than a month ago, you forced me to have surgery; but now look at me!

I'm sitting on our porch in Sea Isle City, watching the ocean waves gently peel into foamy white lines, while hordes of mid-August sun worshipers (whose deep tans would make the Tropicana girl envious) wander amongst clumps of beach umbrellas, which - when opened - mimic a schizophrenically colored, bizarrely vibrant, giant flower garden in full bloom.

Down here, there are no doctors or needles, no injections or IVs, only the smiles of my friends and the occasional four-person yellow surrey peddling down the promenade. I eat whatever I want (she-crab soup, homemade peach cobbler, half a cheese steak sandwich ... not all at once of course) and walk wherever I want (even down to the water's edge). This proves that your powers of control are waning.

In fact, I'm having such a good time that I've decided to extend my vacation - from you - permanently. I hope to never see you again.

Marlena J.

- Posted using BlogPress from my iPhone

Location:Boardwalk,Sea Isle City,United States

Cancer's Price Tag

Semi-Private Room at Sloan-Kettering

1275 York Avenue (Manhattan)
6 days @ $3,650 per day = $21,900 total

So far, I've written about the physical, psychological and spiritual toll of cancer; but how much does cancer cost in hard dollars and cents? From my first MRI on February 17, 2010 thru my second surgery on July 19, 2010, my doctors' bills and medical tests totaled a whopping $119,406.77 . The most expensive item, of course, was the right hemicolectomy, which cost $44,119.76 for the surgery and six-day hospital stay at Sloan-Kettering (worth every penny). Out of curiosity, I looked up what a luxury hotel room in Manhattan would cost for six days; and found out it was much, much cheaper:

The Atrium Suite at The London Hotel in NYC
151 West 54th Street (Manhattan)
6 days @ $1,234 per day = $7,404 total

This just highlights the staggering cost of good medical care. According to Time Magazine, family health insurance premiums have risen over 131% since 1999, and Kaiser currently estimates that health care premiums for an average family cost in excess of $13,000 a year.

I'm only 36-years old. I regularly exercise and maintain a healthy weight; I don't smoke, drink, or do recreational drugs of any kind. If I was a betting man (which I'm not - don't gamble either), I probably wouldn't spend the money to become self-insured if my employer didn't provide health care.

This is the position many Americans find themselves in - wondering whether or not to spin the roulette wheel and see if they can scrape by without coverage. In 2009, it's estimated that 46.3 million Americans did not have any health insurance, and nearly 60 million, or one in five, had gaps in their coverage over the course of the year (CDC June Report, 2010).

Now I'm not going to preach politics, or debate the merits of a government sponsored universal health care system. I'll simply say this - that I'm one of the lucky ones with good coverage, and consequently will only have to pay a few hundred dollars of the $119,406.77 total bill out of my own pocket. And as the bills keep rolling in - for follow-up visits, in-home nursing, and CT scans - I realize how lucky I am that I can make decisions based on what's best for my health instead of on what I can afford.

Gandhi once said "the greatness of a nation and its moral progress can be judged by the way its most vulnerable are treated." The thing that really bothers me is that somehow the interests of the insurance companies have been placed above the interests of some of our most vulnerable citizens: the seriously ill.

Under my plan, out of the $119,406.77 billed, my insurance company only had to pay $58,581.81. That means that a company (whose entire existence is dependent upon generating profit) was essentially charged $60,824.96 less than I was, for lifesaving care. That just doesn't seem right. I don't blame the politicians, or the doctors, or the pharmaceutical companies; I blame us - a nation of some of the most creative and resourceful minds in the world - for not coming up with a solution. Doctors deserve to be paid, and patients deserve to have access to care. We can do better than this.

Note to Self...

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell. ~Lance Armstrong

I am fighting against becoming someone I'm not - someone who is afraid that when they wake up, there will be a new hurt to deal with; someone who doesn't want to leave the house for fear that they will become sick in public; someone who scrutinizes every twinge and pain for a sign that something is wrong.

Cancer is a betrayal by our bodies - and carcinoid cancer is long-term betrayal. Although carcinoid malignancy rates are widely debated in the medical community, many estimate that it takes on average 3-5 years for a neuroendocrine tumor to reach 2cm. My tumor was 3cm, so it must have eluded detection for years - maybe even a decade. How can I trust my body anymore to, as Spike Lee would say, "do the right thing"? I guess the answer is, I can't - none of us can. All we can do is try our best at prevention and healthy living, and hope that the doctors and medical field continue to make advances in early detection and treatment.

However, while I may have limited control over my physical well-being, I have complete control over my psychological and spiritual well-being. I truly believe that happiness is a choice, and not something that just happens to us. I can choose to face the day with fear or with fervor; with weakness or with strength. Lately, I've let my emotions drift from the safety and joy of the "now" to unfounded future anxieties and scary memories of the past. Today, I'm going to have ice-cream and go for a walk, and smile because I know that simply breathing means - anything is possible.

Keep On Keeping On

The toilet. It is the one place that every single person on the planet must visit several times a day, and the one place that is never spoken about in polite company. In fact, we are so embarrassed by our natural need to eliminate waste from our system, that we have invented "code names" for the places where we keep toilets (washroom, loo, bathroom, powder room, water closet, little girl's or little boy's room, restroom), and use fans, sprays, and scented candles to mask any evidence of us having been there. In fact, some public toilets are now automated to flush for you, so that you can escape from your up-right coffin sized cubicle with less trauma.

Public toilets. I remember one of the most surprising aspects of volunteering in New Orleans right after Hurricane Katrina was the port-o-potties. Without running water, whole parts of the city were forced to use these temporary outdoor toilets, perched on every corner, which became so full that people began putting clothes and rags on top of the overflowing piles of excrement to avoid having to come in contact with feces - creating this weird, awful layered monstrosity. There was a lot about New Orleans that was crazy to comprehend during that time, and such a simple dignity that most of us take for granted was just one of the many hardships that resilient city faced.

Similarly, in the world of cancers involving the digestive system, the toilet is no longer a quiet, private and dignified place. Whether or not you are peeing, farting or pooping is the topic of conversation with every doctor or nurse who you come into contact with. And if that weren't embarrassing enough, you actually have stuff to talk about. For example, prior to surgery (and certain procedures), you are forced to gag down glass after glass of a mixture best described as salty mucus to "empty your bowels" - violently. Prior to office visits, you sometimes need to use a Fleet enema - so you learn to buy the Fleet two-pack to avoid multiple trips to the pharmacy, since the cashier always tries just a little too hard to look nonchalant while ringing you up. In the hospital, if you can't urinate, you get a tube shoved up you. It's not a fun world, and sort of like the port-o-potties of New Orleans, it's an aspect of cancer that rarely makes front page news.

For me, just when things were starting to work as they should, "in the toilet", I woke up yesterday with a horrible UTI (urinary track infection). Truth be told, it's actually the second UTI I've gotten since I left the hospital, and I'm more than just a little annoyed. The first infection (July 31) I was able to treat with a gallon of cranberry juice; this time - cranberry juice wasn't working, so I had to call Dr. Nash, again.

As I dialed his office's number, I began to feel like "that patient" - the one who always is complaining or has a problem; but the on-call nurse was as nice as pie, and faxed in an order to the local lab, where unfortunately Gary and I spent our Friday afternoon. Even though the official lab results won't be in until Monday, Dr. Nash called in a prescription antibiotic to start immediately, which personally I'm very grateful for. I picked up some AZO and the prescription, and after whining (a lot) to Gary, I finally fell asleep.

I know that on the grand scale of things, this latest minor setback is a blip. Just like there were much worse realities in New Orleans than the toilets (ninth ward, exploitation of illegal workers, lost court records, lost hope), there are much worse realities in battling cancer than a UTI; but it's these little indignities that begin to drain your resolve. Someone once wrote: "anyone can survive a crisis; it's the day to day living that gets us down". There is some truth in that - after the "get well" bouquets have wilted, and the mail returns to the normal bills and super savers instead of colorful envelopes from well wishers, there is the everyday living to be done. So that's what I'm doing now - trying to "keep on keeping on" - with Jackie -O in mind.

Dr. Appointment and Pierogies

My Post-Appointment Lunch in the East Village
Veselka
144 2nd Ave NYC

Yesterday, I had my follow-up appointment with Dr. Nash, who checked my wound. He said that it looked like it was healing nicely, and was more shallow than last week. He estimated that it will take another few weeks to fully heal, and wants to see me again next Thursday. I'm really glad that Dr. Nash is continuing to see me every week, it gives Gary and I a lot of peace of mind.

After my appointment, we went to our favorite Ukrainian diner for lunch: Veselka. If you've never been to Veselka - GO! The food is amazing. So, while we enjoyed our usual meals (Gary: stuffed cabbage vege combo; me: pierogies), we reviewed what we learned today from the nutritionist / nurse, Rachael (another nurse - whom we absolutely adore) and Dr. Nash.

1. Dr. Nash never got a copy of the pathology on the three small polyps that were removed by Dr. Maloney during my colonoscopy - he will follow up this week. Most likely, if I didn't hear anything, the pathology came back clear. Interestingly, I found out that the polyps were not in the part of my colon that was removed during surgery.

2. The most likely place for the carcinoid cancer to reoccur is in the lymph nodes or liver.

3. The best screening method for carcinoid tumors is regular CT scans; blood markers are too inconsistent for any meaningful results, and CT scans have gotten so good that they are now considered superior to octreoscans.

4. Some of the medical literature suggests a tenuous connection between gastrointestinal carcinoid tumors and an increased risk for other types of cancers, such as colon cancer; because of this, a colonoscopy should be preformed every three years instead of every five.

5. I should finish the entire 30-day supply of Pantoprazole (reduces stomach acid, thereby decreasing the risk of a stress ulcer) and follow up with my primary care doctor if I experience any reflux after I stop the medication.

6. I can take nausea medication for as long as I need to. The medication that works best for me is Ondansetron 4mg (Zofran), which dissolves under your tongue. I have also tried Metoclopramide 10 mg (Reglan) with minimum success. There doesn't seem to be any issues with safety - both are good for long-term use and have few side effects, it's just a matter of which one works. (Fun Fact: Reglan can also be used to treat hiccups.)

7. I can slowly introduce a few fibrous foods into my diet, like smooth peanut butter or a small salad, and adjust my Colace (100 mg up to 3x a day) accordingly. It is very important that I eat protein, which will help speed the healing process for my wound. In this regard, I confirmed that I CAN EAT SUSHI (even the seaweed)! YES!

8. Since I am off the prescription pain meds (as of Tuesday), I can test whether or not I'm able to drive by getting into the car and pushing down as hard as I can on the breaks - if it hurts, I can't drive and vice-versa.

Just a note on pain meds - there are different options out there, and in connection with my past two surgeries I have tried: Hydromorphone 2mg, Vicodin 5/500 mg, and Percocet 5/325 mg. Out of these three, the only one that works for me is Hydromorphone (Vicodin does not kill the pain and Percocet just makes me loopy). Also, it didn't take me that long to switch from Hydromorphone over to Advil for the pain (I averaged 4-5 pills a day right after surgery, and decreased the amount by one pill every three days, so I only had to be on the "heavy duty" stuff for 9 days following discharge).

9. There is no problem with Gary and I going to the beach as long as I only go in the water for a short period of time (10-15 min) and immediately rinse off and repack the wound when I get out.

10. Since nearly all exercise involves your core muscles, I should wait about 8 weeks before resuming any exercise routine.

Overall, everything was good news at the appointment, and it feels like I'm slowly getting back to my old self.

Questions for Dr. Nash

Tomorrow I see Dr. Nash, who will check my wound. As usual, I have more than a few questions written in my little red moleskin for him; but perhaps none so pressing as this one: can I eat sushi? Afterall, a girl cannot live by pastina and cream of wheat alone.


- Posted using BlogPress from my iPhone

Haiku for a Discarded Shower Chair

elephant grey chair

sits all alone, as I stand

in warm shower rain

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First Night Out with Friends

"It's what you have to do with every disease: act like you don't have it and keep on going." - Angelo Dundee on Muhammad Ali's "pugilist's syndrome"



Tonight, Gary, Chris, Christine and I attended a Q&A format appearance by film director / writer / actor Kevin Smith aka Silent Bob (Clerks, Dogma, Chasing Amy, Mallrats, Cop Out) at the Count Basie Theater in Red Bank, NJ.

Smith was born and raised in Red Bank NJ, and today is his 40th birthday (thus, the free rally towel).

I have never seen Smith before, but his Q&A appearances are legendary. There is no doubt; the man is a master storyteller, and when we left -- 4.5 hours after he started-- the place was still packed, and still erupting in clapping and laughter. It was fantastic.

Location:Red Bank, NJ

Breakfast at IHOP

Ok. IHOP is not exactly the best place for a low fat / low fiber / low residue diet. Sure, I could have had some turkey bacon and scrambled eggbeaters - but come on, who goes to IHOP for eggbeaters? Personally, I only go for one reason: crepes.

So before we went, I looked up a typical crepe recipe: 2 eggs, 3 cups milk, 1 1/2 cup flour, 1 tbs sugar, 1 tsp salt.... all things that are on my approved diet! Since I can't have fruits or vegetables, I reasoned that as long as I ordered the German crepes (lemon butter) instead of my usual Swedish crepes (lingonberry butter) I was well within my confines.

It was just like that old Bill Cosby skit in which he justifies feeding his kids chocolate cake for breakfast because he thinks about what's in chocolate cake and comes up with such nutritional ingredients as eggs, milk and flour (and gets into big trouble with his wife).

While plain pancakes are on my approved list of foods, delicious crepes fried and drenched in lemon butter are not (you are meant to avoid rich, fried food). I had two of these golden delights, and 10 min later needed to pop an emergency nausea pill. I'm still a bit queasy, and think I'll avoid IHOP for a while, but all and all - it was worth it.