Steve Levy Steven Levy / Steve Bean

First post: Mar 1, 2017 Latest post: Apr 28, 2017
Dear Friends... A few weeks ago, you may have noticed that Steve went in for an operation.  He'd been having nosebleeds since around Thanksgiving, and they had been increasing in frequency and intensity since the holidays.  He had received a diagnosis of nasal polyps and a deviated septum and we were told a simple outpatient procedure would straighten him out and stop the nosebleeds.  But afterwards, while Steve was still unconscious, the doctor told me, Caroline, that the "underlying structure was not normal", and that he was going to do a biopsy.  Steve was supposed to get the packing out on a week after the operation, on Wednesday.  Instead, we got a call on Monday, asking us to come in right away, that day.  And that was when he told us that Steve has cancer.

It's sinonasal squamous cell carcinoma, a rare and aggressive cancer that had invaded Steve's sinuses and affected his nose, which was why it was looking like he'd gotten punched in the face.  They don't really know what causes it.  Luckily we were able to get Steve into the UCLA Head and Neck Cancer Center the very next day, and he met with those doctors for three hours.  We learned it was Stage Four, and although it is as serious as it sounds, they felt they could treat it if it hadn't spread, but the treatment would have to be as aggressive as the cancer itself.  They outlined the drastic measures they planned to take, and it involved getting him into surgery as quickly as possible for the surgical removal of the tumor, followed by radiation and chemo.  

Unfortunately, along with the tumor, they would have to also remove Steve's nose and part of his upper palate. 

However, if the cancer had progressed too far or moved into other parts of his body, there was nothing they could really do.

We had to wait a week for the results, at which time the Tumor Board, a panel of several expert doctors with experience with this condition, would meet, go over the data and present us with their conclusions.  That was one of the longest, and shortest, weeks of our lives.

So last Wednesday, a week ago, we heard the news:  the cancer had NOT spread.  Although it had entered into his brain cavity, it does not appear to have touched his brain and it's well-contained.  The operation and follow-up treatment will proceed as planned.  Steve will lose his nose and part of his hard palate, and they will be replaced by a series of prosthetics as he heals, over an extensive recovery time.  In a month or two after the operation, he will begin a seven week course of radiation, five days a week, with chemo either once a week or once every three weeks.

As of now, the prognosis is that he will still retain all of his senses. Although his smell and taste will be altered during the radiation, they should return to normal.  He should be able speak after surgery, and to chew and swallow normally once the prosthetics are in, although he will be restricted to liquids at first, followed by a soft diet.  With luck, he might be able to return to his usual foods.  Eventually he will receive a custom-made nose that should look much like his old one.  (Luckily, we live in Los Angeles, where the finest noses in the world are built.)  He'll look like his old self, and these new noses are so well done, you could pass him on the street and not notice anything unusual.

Steve's surgery is tomorrow, Thursday March 2.  He is expected to be in surgery for six hours, followed by a day in intensive care, and then he'll be moved to a regular hospital room.  He's expected to go home by Saturday, maybe Sunday.

The last two weeks have been a whirlwind.  We feel like we've been hit by a tsunami.  There's been a million things to do, and we've reached out to as many people as we could, but from here on in, we'll be communicating primarily through this site.  We will be setting up a Go Fund Me account soon, but we haven't had time yet.  Obviously this will have a huge affect on Steve's career, but the Union has already been helpful to us.  Right now, we just want to get through the next twenty-four hours, followed by the weekend... and so on.  One step at a time.

Already we've felt the love from so many of you, and we have the utmost confidence in the incredible team of doctors helping us.  And thank God for the ACA.  Leave messages here and bear with us while we find our footing again.  We will post updates as best we can.

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