I went in for my regular tests (blood tests = LFTS and an abdominal MRI) last week (every 6 months) and the results were good, 18 months cancer free. It's been said we should not forget to celebrate our victories and I think that is good advice.

Last week I completed my third and hopefully final laser treatment on my right eye. I also completed my first post-diagnosis mets screening without a problem. Just like last time, the whole affair was brief and rather painless. After an ultrasound and some dilating and numbing eye drops, I sat down in a chair and stared straight ahead. You know how people often tell you never to stare straight into a laser pointer? Well...Anyhow, once again I opted to forego the local anesthesia--and it was fine, it hurt a tad more than last time, but probably on par with a dental cleaning. After four minutes of lasering I was done. I return to MSKCC for a checkup in April to assess whether a possible fourth lasering would need to be done to further break up scar tissue. My doctors were once again very, very positive and told me to "get on with life and put this behind me." It's important to take time to celebrate the victories and this feels pretty good.

After my initial radiation and laser treatments in May, yesterday I had a second laser treatment on my right eye. It was a brief affair. After an ultrasound, some retinal photos and some dilating and numbing eye drops, I sat down in a chair and stared straight ahead. Zap, zap, zap and it was done in a few minutes. I opted out of an injection of local anesthesia as it would have caused a black eye. To my amazement, I didn't feel a thing during the procedure. My eye did feel scratchy for a few hours and I had a slight headache after, but when I woke up this morning it was as if nothing was done. I go back in November (at the six month from initial treatment mark) for the third and final lasering. The doctors said everything looks great and my vision in my right eye is still very good to boot.

Today I met with my Imerman Angels buddy (who I'll use a pseudonym for), Bill, for the first time. Like me, Bill was diagnosed with his chorodial melanoma under the age of 40, which makes us unusual. Bill had his affected eye enucleated (removed) due to the tumor size so he didn't go through the same radiation treatment that I did, but nonetheless we shared very similar experiences. Both of our stories began with slight to moderate visual changes which just seemed annoying at first since we were both working very hard when this all took place. Fortunately for Bill, his optometrist spotted his tumor immediately and rang the alarm (and didn't bungle around like my original opthamologists in Chicago). I was surprised to learn from Bill that the enucleation process wasn't as terrible as I thought it might have been. In fact, he said he could have been back to work in just six days, but of course he took off longer as A) you never want to push your boundaries on these things and B) the psychological impact is immense and takes time to process. Much of our conversation then focused on the pyschological impact of our condition. Chorodial melanoma is a bit of an orphaned cancer at about a 6 per 1,000,000 incidence. Most people don't even know that cancers can occur in the eye. Public awareness is near zilch which complicates both realizing you have it and explaining you have it. In my case, I tell people I had it treated with radiation. In Bill's case, he says he had his eye removed. The general reaction is usually "So things are fine now?" or "So it's cured?" Unfortunately, as you, the educated reader, probably know, cancer isn't that simple. No one is every fully "cured." It's just that the longer you go without a recurrence or metastatic (spreading) occurrence, the further out you get on the bell curve toward it being unlikely that the cancer reappears locally or remotely. (Five and fifteen year marks are key for chorodial melanoma.) We both have also noted one other thing which is that people often ask a lot of questions about our vision and very few questions about the cancer. I don't think this is just people being polite or feeling uncomfortable. I think if it were another form of cancer the questions would center around the cancer. It's not that vision isn't important (it is--believe me, Bill and I are both very protective of our good eyes), it's just that, well, vision comes second to being alive. It was great meeting Bill and his story is inspiring to me. He's got a wife, a kid, a high-powered job and he's kicking cancer's butt. I thank Imerman Angels immensely for the opportunity to be paired with him. One other side note. I've noticied Imerman isn't really fully technologically enabled. I think it would be useful if all members could have a blog and Imerman became this powerful network of connected blogs. Imerman could also curate and feature the stories. If the blogs did well perhaps it could be like the TripAdvisor of cancer blogs where the content becomes highly ranked in Google and useful resources for anyone searching for a specific cancer-type. This could add a much needed human element and complement to all those Wikipedia and WebMD search results found by recently diagnosed patients and family members. (I am thinking my buddy Sachin's company Posterous.com would be a good match.)

I had my 1-month check up with one of my surgeons from MSK today and it went well! The doctors took an ultrasound and some retinal images and could see that tumor is responding how we wanted it to the radiation treatment; the tumor stopped growing and shrank from 2.7mm to 2.2mm in diameter. That's good. The goal isn't for it to disappear. It will probably go to 2.0mm in the long run. The radiation killed it and it is now turning into scar tissue and shrinking as that occurs. That means I am in the 97% of good outcomes for initial treatment and local remission which is good. The doctor also said my eye is healing "phenomenally" well and everything looks "perfect" thus far. The eye is still bright red from a burst vessel but that's OK and it is healing. My vision out of my right is still not perfect as I have a decent sized blind spot, some blurriness and some distortion. However it sounds like the blurriness and distortion may get better over the next six months, though things may get worse again in about 18 monts as the radiation has lasting effects on the retina. On the bright side though, it is absolutely amazing how well the brain is able to adaptively respond to eye trauma. My brain is actively taking the good feed from my left eye and stitching it together with the best parts of my vision from my right eye (mostly peripheral). I hardly notice the change except in certain circumstances. It goes to show how the brain can adapt, even long after childhood Ahh...yeah..so Mr. Kurzweil, I think it's going to be a lot longer before we reach the Singularity than you think. Our brains are way more bad ass computers than you can imagine until something like this actually happens to you.

Video from the 2009 walk. I just completed my first cancer walk with Sally. It was the 17th Annual Cancer Survivors' Celebration & Walk held by the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. It was held in Grant Park Chicago, today June 6th, National Cancer Survivors Day. Sally commented how powerful it was to see folks of all ages and backgrounds at the event--cancer affects us all. It was a terrific event and the sun was shining making Chicago feel like the best city on earth. I also met the founders of Imerman Angels, which is a fantastic cancer support network that was founded in Chicago. I plan on becoming involved.

I just came across this Wall Street Journal article describing a patient's fights with cancer and his health insurance company. Something is broken when you have to fight your health insurance company just about as hard as a deadly disease. I think it should give you some insight as to why I'd be posting about health insurance in the middle of dealing with cancer and surgery. One way to fight cancer is to make patients lives better by not having them go through this. Powerful stuff. Article Link. Video Link.

(C) Illustration by Mark Matcho

Either knowingly and maliciously or unwittingly and incompetently--it is hard to know which is worse--Aetna's health insurance ends up scamming members out of contractual benefits. I can only imagine this ends up aggregating to tens of millions of dollars nationally. I have also seen Blue Shield of California do this exact same thing and would bet many other health insurance companies follow the same procedure.

Here's how it works: Assume Memorial Sloan-Kettering is "in network" (which it is for me.) But following treatment, when you get your bills  they aren't always just from "Memorial Sloan-Kettering" they are often from a bevy of different group names within the hospital, for instance one might be "Memorial Cardiopulmonary Group" (which is a bill I recently received). These various names are all part of the originating hospital, in this case Memorial Sloan-Kettering and are all definitively "in network" but for billing purposes (so the hospital can correctly track expenses) they come from different groups and tax identification numbers. BUT what Aetna does is process the claim as "out of network" the first time they receive it. Therein lies the scam. By processing the claim as out of network, they force the member to pay a greater percentage of the claim and end up paying less themselves. To have the problem corrected, the member must then call in to the customer service number. But the elderly, less educated (don't understand their benefits), rich (who don't look carefully at bills) or just less anal folks out there most likely never catch these mistakes and up and getting royally screwed. 

Being young and fastidious, I read every single Explanation of Benefits ("EOB" in industry parlance) I receive and catch hopefully 100% of theses "errors." I'd estimate in the past 24 months I've caught somewhere between 150 and 300 such "errors." Now remember, I know to look for this issue and I make the time to call customer service. So Aetna I am calling you out. This is either an administrative error of gross negligence or it's a knowing and deceitful con hidden behind the sham of a technical glitch in your  conveniently Byzantine systems. My bet is that it is malicious. You deny and mark claims as "out of network" knowing full well that only X% of customers will call in to have these mistakes corrected. You then pocket the difference. To make matters worse, there is no systematic way for customers like me to prevent this from happening over and over again. I feel like Bill Murray in Groundhog Day every time I read an EOB and it shows" Memorial Sloan XXXX Group" or "Northwestern Memorial XXXX Group" which should both clearly be in network but you have decided to make them out of network. There's just no way you can be so incompetent as to not know what's in network and what's out of network and 100% of the time assume it's out of network without some level of maliciousness. I just had my bill for "Memorial Cardiopulmonary Group" fixed. The supervisor I spoke to said there's no way for me to proactively prevent this from happening...probably because it is convenient for Aetna's bottom line.

The sad truth is I know there's going to be dozens more like it in the future and there' nothing I can do as the little guy but call to have them individually corrected. Oh, yeah and perhaps write about your scam on my blog.

A ferocious, time-sucking whirlpool of bad customer service

Somewhere between my countless doctors visits I became caught up in a vast, time-sucking, Homeric whirlpool of paperwork and phone calls. Facsimile terminals in New York, San Francisco and Chicago diligently beeped at each other at my behest. I spent three to four hours a day on the phone calling, calling back, getting transferred, re-transferred, hung up on, mis-transferred and attempting to leave voicemails on mailboxes that were already over capacity-all while mentally dealing with the reality of cancer. For every one task I needed to accomplish that should have been accomplished in one phone call, I estimate it actually took on average six phone calls. Why? Partly because when our cell phone bill is incorrect by $1.09 we place an angry call to AT&T and when Comcast doesn't show up for an appointment we fill out 15-page FTC and BBB complaints in triplicate, but when a hospital fails to fax our medical records or a doctor fails to call us back, we simply grin and bear it. (The hospital of which I speak was not MSK. MSK is the exception to this rule and warrants their own post on why they succeed.)

Disturbingly, we voice our outrage over the smallest customer service infractions for consumer products, but sit as silent accomplices when life and death is on the line. And don't be fooled. It might "just be" a fax of your medical history that fails to get placed on the first call, but if you're in the operating room and something goes wrong it very well could cost you your life when the doctors don't have access to the records of your preexisting conditions. Think about how much care Apple and Google put into the customer experience for their latest mobile phone operating systems from the color of the icons to the feel of the box and response time of their customer service reps. Yet, when I call a doctor to get blood lab results or my insurance company to find out about the status of a $30,000 bill I am treated like third-class citizen. "But, Tom!" you scream. "There are good reasons the healthcare industry is like this. They can't afford good customer service." Untrue! If you want an example of amazing customer service in insurance, look no further than GEICO. Every time I call them, I am blown away by how customer-fcoused they are. If you want examples of hospitals and doctors who get it, I would suggest you spend a week in Memorial Sloan-Kettering diagnosed with cancer...on second thought, you may not want to do that.

Every business is benefited by understanding and catering to their customers, no matter what industry. That is an immutable law of both business and charity. It's no wonder healthcare is so broken. Any business that fails to understand or care about their customers' opinions is likely to face serious trouble. This is even more concerning when it's an industry-wide culture and that industry is the single largest slice of US GDP. This means two things. First, we as consumers need to demand more from our healthcare providers. Second, there is significant opportunity for healthcare providers (hospitals, doctors, insurance agencies, etc.) to differentiate themselves by radically re-imagining their services from the points of view of their customers.

A recent photo of the author

THE FACTS.

I was recently diagnosed with a tumor, known as a choroidal melanoma, in the back of my right eye. The tumor likely started off as a benign nevus (a mole that is common in the back of the retina) but then started growing. Last week I underwent treatment at Memorial Sloan-Kettering Cancer Center (MSK) where radioactive seeds were placed on a small metal plaque and sutured onto the back of my eye for three days. The plaque was then removed in a second surgery and the tumor was also blasted with a laser. Everything went as planned. The tumor was large enough for treatment to be the recommended course, but small enough to be on the very earliest and smallest side that such treatments are used. I will follow up with the doctors in four weeks and also every six months. There was very little pain associated with the treatment. The outside of my right eye is black and blue in the corners of the eyelid and the eye itself is quite red. It looks like I got socked in the eye. I also have some blurry and double vision which should go away within a few weeks. Overall though, a miracle of science considering how good I feel. I have asked the doctors if any superpowers, including but not limited to monocular x-ray vision, might ensue. I haven't gotten a straight answer yet, but I have my suspicions.

HOW WAS THE TUMOR DETECTED?

I had started noticing increased floaters in my vision and then some flashing lights some months ago. I couldn't determine if the source of the symptoms was an eye, neurological or neuro-opthamological, given that the symptoms emanated from the exact center of my vision and the flashing lights appeared in the same spots even when I closed either eye. At first my doctors thought it was an ocular migraine, given my past medical history of migraines. Next, I went to an opthamologist, but they failed to see the tumor in a visual inspection of my eyes using glass lenses. To make a very long story short--after my insistence they eventually found the tumor after taking some photographs of my retinas and doing a computerized "visual field test" and noticing I was developing a blind spot in my right eye. That prompted other tests including an ultrasound of the eye which verified that the area of concern was malignant. (Biopsies are not performed. Ultrasound radio signatures are 98%+ accurate.) The floaters and flashing lights were caused by the tumor pushing up and detaching an area of the retina, which turned out to be a fortunate occurence. Many choroidal melanomas are asymptomatic and thus are not detected until it's late. All in, I am doing very well and looking to return to school just a few short weeks after formal treatment commenced. My fantastic doctors from MSK assure me that given the size and stage of my tumor, along with my relatively young age, my prognosis is extremely good. The probabilities are very, very much on my side. Nonetheless, it has been an intense and scary experience that quickly reminds one of what's important in life.

ADVICE.

It's amazing how many little things in life seem important until something potentially catastrophic slaps you in the face. All of a sudden you push everything off your calendar and spend your time with family and friends. Things that seemed so important and necessary reveal themselves as un*. Take a moment to evaluate your own life through this lens. You'd probably spend more time with your family and friends. Going through this process has radically changed my perceptions of healthcare. In the future, I will be writing about the insights I have gained from this experience. My immediate advice to you is, of course, to get your eyes examined once a year (and get photos of your retinas while you are at it--I wouldn't trust the lenses) and be your own advocate when it comes to your health. Doctors these days are often so jaded by other patients' hypochondriac complaints and internet-inspired patient paranoia that they dismiss real symptoms. If you are experiencing real and tangible symptoms that worry you, don't let up without exploring your options. It just might save your life. It probably saved mine.