Saturday, August 28, 2010

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.

Friday, August 27, 2010

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

Wednesday, August 25, 2010

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.

Wednesday, August 18, 2010

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