The Benefits of Diversion - and the Care and Nurturing by Loved Ones and Dear Friends

Okay - so I said I was going into radio silence until the surgery. But I figured out something very handy - when you have control of the Blog password, you can put yourself back into circulation whenever you want to.

I figured that a bit of diversion and relaxation could not hurt so we spent Memorial Day Weekend with our dear and beloved friends the Pincuses. Lil and Bob are probably the closest friendship we have that resemble mishpucha (for the non speakers out there, that's family). We have shared the joys of our children growing up, the near identical birthdays of our youngests, the ups, downs, tragic moments and gloriously wonderful moments, as well. And, did I mention that for our money, the most delightful home in the village of East Hampton. We have been invited out here regularly since 1981 (with Eileen and Lillian being very pregnant with who turned out to be Lauren, Lauren and Joanna). So as I sit here upon their wonderful front porch, perched (porched??) in this idyllic east end tranquil setting, I bemuse myself with images of the great 19th century novelists impeccably describing their English countryside weekends.

Well, we haven't had a hunt yet, the picnic in the gazebo attended by footmen and lady's maids has been called off due to possible inclement weather, and no one really wants to play croquet this afternoon. And as the church on the corner of the Montauk Highway and Davids Lane chimes out four o'clock, I sit here prepared to ruminate about what has worked in keeping me sane and what I am prepared to look forward to.

You have to have had the privilege of playing a round of golf with me to understand that relaxing and playing golf are not necessarily terms that are compatible in the same sentence. But Bob and I did play a round on Friday at Montauk Downs which except for my long game, was a very enjoyable way to spend a day. I have been determined to keep myself very occupied (which I have also learned can be inclusive of just sitting and reading) and doing my best to focus on the here and not the events of two weeks hence. The Metropolitan Golf Association can let all of their members know that there were no handicap records set and Titleist can be comforted that we will be keeping the sale of new balls at a brisk pace.

Bike riding along the shoreline on the east end of Long Island was just what the doctor ordered. First of all I was able to prove to myself that my balance has not been significantly affected by the neuroma. Second, it was just a perfect day for the ride and just take in the beaches, the local flora and fauna, and check out the driveways and "back forty' of the rich and famous. Unfortunately not one lemonade stand was in sight. I guess all of the kids were packing up for Wharton.

You know, we go through life and try to avoid all of the supposed cliches - the clever ones like 'stop and smell the roses'. It has occurred to me over the last two months that we do need to slow down every so often and take in what life has given us. That's it for the deep philosophical stuff for now.

The weekend in the Hamptons proved to be a great diversion for "T minus 14 and counting". As it turned out, the already shortened week turned into an even shorter work week as Friday was pre-op testing day at NYU. Being a surgical naif, the processing routine is a very insightful observation on how easy it is for human behavior to become institutionalized - even robotic. Maybe I am more than sensitive to this I always feel our business practice needs to always remember that in order to create a trusting, comfortable and effective client relationship, each of our clients needs to believe that nothing is more important than who they are at that moment in time. And as importantly, no matter how routine the task may be, personalizing it is critical to why our clients want to do business with us.

Perhaps it is who I am , but as soon as I sense that service related folks are being a bit too droll, I try to use humor to break the rarefied air in the room. I mean, I know it's a job to them, but it's a cranium to me. So I set out on my day with the intent of at least trying to make it as minimally institutionalized as possible. I must say that for the most part, every doctor, nurse, nurse practitioner and phlebotomist I met with was professional, knowledgeable and intent on doing their job well. A few started a bit too intense for my liking and I did my earnest best to make our session a personalized one, not an institutionalized one. It is so easy to see how quickly your needs can become subservient to the process.

Having left more bodily fluids behind than I left with, I was given the okay for the surgery with flying colors. An important to word to the wise - I chose to donate a unit of my own blood to be kept on hand just in case I require a transfusion during or after the surgery. While I have been more than assured that there will not be a need for the extra blood at all, (99% assurance), I truly felt that better to know what your getting than not. And to prove that the warmth and generosity of family and friends never stop to surprise and warm the heart, Joanna, who is type O positive, as is our long time friend Dick Hecht, both stepped forward, unsolicitedly, to offer to donate blood on my behalf. The offer from both really moved me and struck me deeply on how selfless they both truly are. In any regard, I recommend that anyone who is scheduled for major surgery think of either self-donation pre-surgically or seek out donors that are willing to be helpful. Even with all of the testing technology in place to day, it just seems to me having one less thing to worry about is a good thing.

Meeting the Experts Part 2 and setting the date...

It seems the word is around that what keeps blogs interesting are pictures. I was going to draw a few, but I really haven't progressed very far from the tulips and trees I drew as a child. So instead since I keep on writing about my tumor and its spatial relationship, here's an illustration provided by Northwestern University in a recent publication:

I know, you are probably asking 'what the heck is all of that stuff up there?' Well not being a brain surgeon I will do my best. In short, the brain is eventually to the right; the rest of the ear's mechanisms are to the left. In my case, the neuroma is resting directly on the auditory nerve (which is the 8th cranial nerve). This nerve includes both the cochlear nerve (this carries auditory impulses to the brain stem) and the vestibular nerve (this transmits the impulses from the inner ear compartments that control our balance). Resting very snuggly above it is my facial nerve (this is the 7th cranial nerve) which controls the muscles that move the face and control the tear and salivary glands - it also carries the taste sensation from the front of the tongue. (Gee, maybe now I might be able to try Curry and not care what it tastes like - that's a sly bit of humor for those who have ever attempted to get me into an Indian restaurant!).

These nerves travel through the internal auditory canal. Hence, students, my Intracanalicular Acoustic Schwannoma. As the tumor grows over time it applies pressure and can enlarge the canal. That's what I am beginning to experience according to my MRI. To make this brief, it is the Schwann cells (which form the sheath around the vestibular portion of the 8th nerve) that overproduce themselves and turn into the benign tumor that temporarily is nestled in my head.

Okay group, our Neurological and Otolaryngological lesson is over for now. Let's get back to the experts. After our appointment with Dr. Golfinos, our next stop was down and across the hall to Dr. J. Thomas Roland's office. Dr. Roland is the Director of Otology and Neurotology and Co-Director of the Cochlear Implant Center at NYU. We were very fortunate to get this appointment when we did as Dr. Roland was leaving the following day for about a week for a conference in Eastern Europe. When we entered his waiting room we were face to face with a space that was literally wall to wall people - little people (babies, silly), adult people, elderly people (not that the elderly are not adults) representing about as many cultures as there were patients in the waiting room. We have never encountered a support staff that was more good natured, accommodating, cooperative and clearly happy to be working where they are. Dr. Roland's appointment coordinator, patient intake coordinator and remittance coordinator sat behind the smallest work space I have seen (oh, did I mention that those three jobs were all handled by the same person?) ever. I must say that my first impression was we're going to be here a long, long time and there cannot be any way I am going to be given any quality face time with Dr. Roland. But I said to myself that the experience with Dr. Golfinos had been so great, and that one out of two wasn't all that bad.

Well, the first sign that this was an unusually run office was the offer made to us that if we wanted to go down to the aforementioned lobby coffee bar (remember - chocolate chip cookies to die for?), they would call us on my cell phone when they were ready for us. Tell me when you had that offered to you the last time you were waiting for a doctor. Well we hung out for about a half an hour, got the call and delivered ourselves back at Dr. Roland's office - which, by the way, still had most if not all of the same patients still waiting. We were taken to an examining room and I think that it is safe to say that while we were waiting, there was this ongoing internal dialogue taking place in my head (yes, I can hear my own internal dialogue) that this can't possibly go well. He's going to feel pressured to get through all of these late afternoon appointments and our experience was going to be very perfunctory, at best. Boy was I ever wrong.

Dr. Roland came in and at once he made Eileen and I completely at ease. Our time with him was as if we were the only patient he was going to be seeing that afternoon. He too dropped the DVD of my MRI into his computer and began his analysis. He provided us with an even more in depth tour of my brain stem region, pointing out the now very obvious differences between the left and right sides of the affected region. He was thorough, kind and compassionate. He also was appreciative of our gathered knowledge and we spoke at length about the options between the Retrosigmoid and Middle Cranial Fossa Approaches - the risks associated with both, the advantages of either and the biggy for me, the odds of being able to retain my residual hearing.

We spoke at length regarding the fact that my reduced level of hearing created more difficult odds in retaining my hearing. He indicated that he was leaning towards the Middle Cranial Fossa approach but also indicated that he would be conferring with Dr. Golfinos to discuss both options. We agreed that the surgery would take place in June but their joint surgical scheduling person would have to juggle a few things to make it work. By the conclusion of our visit we both had this incredibly secure feeling that my head and its contents were going to be in the absolute best of hands and that as a team these two were indeed enormously formidable in talent, knowledge, kindness and experience.

It's hard to say that we left the hospital being happy, but certainly contentment was near at hand. The prospects of the surgery now being an absolute reality became very, very real. It's one thing to read and research this stuff. It's something else to start this blog enterprise to keep the therapeutic value of writing about my feelings, look for the light side, and create a dialogue with family, friends and other AN patients. But to know that you are getting that much closer to very talented people opening your head is a whole other layer of the stratosphere. I think that stratosphere is an apt description because when all is said and done this is still an out of body experience. Other people get tumors - I am not supposed to (I have that written in my lifetime warranty they gave my parents at the hospital after I was born).

But the reality is I do have a brain tumor and I want it out desperately. I want to continue on with my life as it was before this all became real. I want to continue to share my life with the love of my life, Eileen. And I want to watch all of our children continue to mature, grow as individuals, have families of their own and continue to make us as proud of them then as they make us proud now. I want to keep on doing the things I try to do for our greater community and continue to contribute productively in my business practice in which I have the great privilege of working with an amazing amalgam of personalities and talents.

See...you get me started....

So we have the date - it's Monday, June 8th. Presuming all goes well, I will be in the hospital for 4 or 5 days and then home for at least 4 or 5 weeks but possibly longer. Frankly that all depends on how much I work through the fatigue I have been told to expect, gaining control of my balance and hopefully the full recovery of any facial paralysis (or droopiness depending on how you want to characterize it). I look at it this way. I love all four seasons in New York, but if I were down for the count during ski season I probably would not be a very happy camper. So I guess I will have to force myself to sit by the pool and just recuperate and contemplate my navel.

The blog will probably go quiet for a bit now unless the mood strikes me. I will promise to keep you all posted on what happens post surgery so keep checking in. Oh, if anyone comes across any doo rags that go with a pinstripe suit, send me the info.

See you around the campus.

Meeting the Experts

Welcome back faithful readers and followers. I was considering turning this into the Great American Novel when I remembered this is non-fiction. I am not really sure I am ready to take on Doris Kearns Goodwin or David McCulloch - two of my fave historical authors, so I am glad to announce that this Blog will maintain its otherwise defined mid-brow factual content and somewhat cock-eyed attempt at humor.

While I am still pursuing the Doo Rag options, we did leave off where I wanted to share with you how truly fortunate I have been to have several serendipitous events intersect on my behalf. Shortly after I began to share the news of my IAS's existence, I learned that Josh Goldwyn, son of my first cousin Michael Goldwyn, is a PhD candidate, working as a graduate research assistant to Dr. Jay Rubinstein at the University of Washington Medical Center in Seattle. I actually knew that Josh was at the university and was doing medical research and probably even had heard that the research included acoustic neuroma and cochlear implant studies. But to be frank, why would I ever had paid careful attention to that small detail? Josh, who for all of the right reasons does pay attention to the details of acoustic neuromas, having learned of my situation from his Dad promptly contacted me and reminded me of his work. He also graciously offered to speak with Dr. Rubinstein and inquire about the names of the doctors I was to see on the 7th of May.

This is where you begin to wonder that even if you have a hard time with buying into the concept that there is higher order of things in this world and others, sometimes 'kismet' (I actually was once in that show - but once again, I digress) happens - or as they (who are 'they', anyway?) say in Yiddish, 'bersheit' (defined as destiny or fate) shows its hand just when you may doubt that such things exist. Next thing I know it turns out that Seattle based Dr. Rubinstein is good friends with New York based Dr. Roland - so much so that they occasionally conduct research together. Furthermore, Dr. Rubinstein, offered to read my MRI disc and the next thing I know I am on the phone with him the following afternoon. What he shared with me was the confirmation of what I already knew, but also explained further about the exact location of my tumor, what the good news was (not growing towards my brain) and what the not so good news was (it is growing towards my Cochlear and is nearly right up against it) - thereby continuing to create further deterioration of my hearing. We spoke about what the surgical options were and what he expected would be discussed with me the following day when I met at NYU with Drs. Roland and Golfinos, namely that the Retrosigmoid or Middle Cranial Fossa Aproaches were in all probability the options I would be offered. And lastly he said to me that if he were in New York, and if he had an AN, the doctor he would go to immediately was Dr. Roland. I say if Tom Roland is good enought for Dr. Rubinstein, that's good enough for me.

We go to meet the team, have a cup of coffee in the lobby, and start to get comfortable with the surroundings at NYU Langone Medical Center

As it turns out May 7th came faster than I would have originally expected. And while I have continued to try to be pretty together about the process so far, as I rode in the cab from my midtown office to meet Eileen at the hospital on First Avenue and 31st Street the reality of the signficance of what I was about to hear face to face and be prepared to make very important decisions about my health and my future began to engulf me. That was one heck of a long cab ride - and it didn't help any that the cab driver seemed to have had a hard time deciphering between Third Avenue and First Avenue. This was just not a good time to test my tolerance quotient.

After meeting up with Eileen in the main lobby of the medical center we proceeded to Dr. John Golfinos' office on the 8th floor. [Note to self: really nice coffee bar and cookie/muffin stand in the loby. Note to others: outrageous chocolate chip cookies!] Dr. Golfinos, Associate Professor and Chairman of the Department of Neurosurgery and Associate Professor of Otolaryngology (how are you doing with saying that three times fast? Personally, I think that if you can say "Otolaryngology" three times fast they should let you into medical school), has to be one of the most engaging, upbeat and clearly hugely talented doctors we have ever met. He put us both at ease and created an open environment that not only taught us more about my tumor from a Neurosurgeon's perspective, but encouraged us to ask as many questions as we needed to. There was never a moment that we felt intimidated or that any question was wasting his time. For the first time we watched the MRI unfold on his computer screen, revealing 'slice' after 'slice' of the innerds of my skull. And to all of you skeptics out there, there indeed is a brain in there. And that was when we were introduced to my very own personal Intracanalicular Acoustic Schwannoma.

Dr. Golfinos is obviously a very astute and bright guy. You ask how would I know that? Simple - he made a point of noting that I was extraordinarily prepared for our meeting and that I had saved him at least 30 minutes of describing my condition and possible treatments. (Gee, I hope that wasn't doctor speak for here's another smarty pants patient who thinks they know it all!) In all seriousness, though, Dr. Golfinos was enormously approachable, compassionate, empathetic, and extraordinarily knowledgable and truly made Eileen and I as comfortable as possible as we discussed my surgical alternatives. It was a good discussion, and I was truly pleased that I had done the research on ANs beforehand, because honestly, the situation is so stress producing as it is, I do not think either of us would have retained all of the information that was presented to us for more than an hour or two. What truly impressed me was at no time did Dr. Golfinos presume that we had come to decide that surgery was the path we would take. But he did give me the opening that literally had been drumming in my thoughts since I was first diagnosed. He said...".you know, there are just some people who just want the tumor out...period". Well to say that hit home is an understatement. That was all I had been focusing on from day one - just get out whatever hadn't arrived with the original standard equipment when I arrived on this planet. From there it became a lot easier. We did, of course, discuss the benefits and risks for each of the surgical approaches, with the primary focus being that I was adamant that after my own overall safety, attempting to save that portion of my remaining hearing was really important to me.

For those of you who may not know me well, music has always been an incredibly important part of my life. I was brought up by parents who loved all aspects of music, theater and performance arts. That ranged from my father listening to "Symphony Hall" on WQXR radio every night and my mother being so eclectic in her tastes that included classical music, opera and Dick Clark's "American Bandstand". It's where my love for the stage, performance and music came from as an adolescent and young adult. And it's what I found caused the greatest devestation to my emotional acceptance of this illness. I do often think about Beethoven, however, and how much amazing music he produced while suffering total deafness. But then again, he never heard that music fully orchestrated and performed - although historians do believe that he did hear it in his head.

Back to Dr.Golfinos...We arrived at the decision point that either the Middle Fossa Approach or the Retrosigmoid Approach were the winners. Both, as we have discussed in earlier postings, will provide the opportunity to remove the tumor and give me a 50/50 chance of saving the hearing I still have in my left ear. The differences focus on the angle of exposure to get to the tumor while limiting both the contact with the facial nerve and minimize the needed retraction of my brain during the surgery. We left that final decision to the conference he and Dr. Roland would have after we had met with Dr. Roland later that afternoon.

Next posting...we meet Dr. Roland and set the date...

Maybe a "doo rag" can go with a pinstripe suit....

There's been a lot going on. I have been on a raging campaign to learn as much about this illness as possible. What I have learned at the least is that I have to take full credit for its establishment and growth. There is no tangible evidence that I can blame this on any of my forebearers. Something else I have to take responsibility for.

How does the line go...'you have to walk a mile in someone else's shoes...' has taken on a whole new meaning for me. I cannot express enough how much it has meant to me that so many dear relatives and friends have reached out to just express their concern for my well-being. You know before you experience one of these events you just do not get how important that communication is. I truly have a whole new perspective and understanding of how a simple act of kindness can become such a significant event for the recipient. So fellow bloggers, reach out and touch someone - you will never be able to estimate how much impact it can have. And...don't presume that the ill person doesn't want to talk about their condition or their issues or their fears. If they don't want to, they'll tell you. But don't ever believe that someone knows your good intentions by being silent or distant. That may be easier for you, but it's not about you - it's about them.

Obviously, I digressed. Sorry - give me a soap box and see what happens - I'll just go on for ever. Back on topic. At the same time that I learned of Dr. Brackmann's existence I put a call into a client of our practice, Dr. Noel Cohen. Noel, recently retired from the NYU Langone Medical Center, was instrumental in the creation of NYU's Cochlear Implant Center. As a significant expert in the field of Otolaryngology, Cochlear Implants, and, as it turns out, Acoustic Neuromas, I could not have been more fortunate to have access to someone of Noel's sature and knowledge. Sometimes it just feels good to know that maybe there is a higher order that puts the various puzzle pieces of your life in order.

Noel, as I expected he would, could not have been more understanding and helpful. He also said something to me that will stick with me for a very long time to come. There are times when as a professional, you realize that not only do you get through to people and gain their trust, but they also understand the subtleties of your personality. Noel said to me that knowing me as he did, being a critical thinker, and how I approach problems and their solutions, expected I would be doing a lot of research to get myself educated as quickly and concisely as possible. Noel also gave me the names of two doctors at NYU - Dr. J. Thomas Roland (Otolaryngology/Otology) and Dr. John Golfinos (Neurosurgery/Neurotology). Drs. Roland and Golfinos work as a team in treating Acoustic Neuroma disease - and as colleagues of Noel fit the bill as significant forces in their respective fields. This no doubt explains why NYU has the stellar reputation it does in this field. Within fifteen minutes of finishing my call with Noel I had made back to back appointments with Drs. Golfinos and Roland for Thursday, May 7th. Being that our conversation was on April 17th, May 7th seemed a lifetime away, but I decided to focus on what should be important to anyone - my family and my work.

The fabulous news that had showed up two days before my diagnosis was that our daughter Lauren's longtime soul mate, Michael, had called Eileen and I to ask for our blessing for him to proceed with proposing marriage to Lauren that coming weekend. We of course gave Michael our blessing and are looking forward to many, many years of sharing wonderful events with he and Lauren. Anytime you want to duel with me about emotional roller coasters, I am pretty sure I'll win. Let's see - first of our three children to get married - benign brain tumor - that covers the range of emotions, n'est-ce pas? So the good news was we had been presented with a fabulous diversion. Of course that didn't stop my voracious appetite for learning about the courses of action that I would soon be discussing with my doctors.

It turns out that doing medical research on the internet can be informative and useful. Who would have thought? I have spent the last several weeks getting an education on ANs. I have read about diagnoses, treatments, side effects, expectations for success, risks, rewards, the two broad methodologies of tumor removal and the individual choices within those methodologies. I have read medical journal submissions by renowned experts in the Ontolaryngology (if you think that's hard to spell - try saying it three times fast!) and Neurosurgical fields seeking to find the voice that would arise and claim, "Eureka - here's the perfect solution - follow me to Valhalla!" Well as it turns out life just is not that easy. After being hooked on "ER" for its full run on TV, one actually buys into the concept that medical remediation is only a commercial away. Turns out life is just not that simple (and no commercials, either).

Decisions, decisions - - Incisions or not??

Here are the basics. There are two broad categories for treatment for ANs (well actually there are three as the option to wait, watch and monitor the patient's tumor growth and continued hearing loss can be a very appropriate route to take depending on age, hearing loss and other considerations) - either non-invasive or invasive surgical approaches. Non-invasive approaches have two options - either Stereotactic Radiosurgery or Gamma Knife (more on those in a moment). Invasive approaches provide three options - Middle Cranial Fossa, Retrosigmoid (Suboccital), and Translabarynthine. (Remember there will be a test at the conclusion of this session!).

Gamma Knife is the common form of radiosurgery. It's administered on a one shot deal of high-dose radiation (no, I do not know if the warranty comes with the promise of glowing in the dark). Radiosurgery is a multiple day or multiple week process which allows for the dosage of radiation to be spread out over that time period. The goal of either of these processes is to shrink the tumor. The tumor is not removed and nearly all of it is zapped by the treatments - however, the stem of the tumor may very well stay intact. Going this route is highly successful in thwarting the tumor's growth, and, where the patient still has all or a significant portion of their hearing in place, these treatments can assure the saving of the hearing. However, research has begun to show that after a period of years, hearing does begin to deteriorate significantly. The patient also winds up with the annual reminder of needing an MRI for the remainder of their lives. Why, you may ask? Aha - that's the rub. You see, there is no guarantee that the tumor could not grow itself back since the stem does not get the radiation treatment)- which can create all sorts of other challenges. Challenges such as the difficulty of surgically removing the irradiated tumor, while very remote, but none the less the vary rare chance of the irradiated benign tumor tissue becoming malignant. Often these approaches are used for diabetic patients, or patients diagnosed who are over age 70.

The surgical choices, as mentioned above, of course present their respective positives and short comings. Let's face it, having some folks (albeit very talented folks) with little tools and a microscope poking around inside your skull is a teeny bit un-nerving. On the other hand, from my perspective having anything related to this tumor hanging around in my head any longer than is absolutely necessary is way too long. The choices regarding the surgical approaches have a lot to do with what type of fashionable scar a folicly challenged 58 year old male is willing to accept as part of their destiny. And for me, always a slave to fashion, the consideration of a crescent shaped incision beyond my ear (going laterally back along the side of my head - that's the retrosigmoid approach) or an inverted question mark incision above my ear and up towards my hair line - [no wise cracks needed here] - that's the middle cranial fossa approach) is a critical part of the decision making. But once again, I digress.

Back on topic...the surgical approach that will eventually be decided upon has much to do with my individual circumstances. I do still have 64% of my hearing in my left ear, so having a consideration of keeping what I have is important. Risk associated with the surgeons noodling around my facial nerve is remote, but none the less important to consider. While certainly not a dillitante when it comes to dining and table manners, having a droopy left side of my face and having my lobster bisque dribble out of the corner of my mouth whilst in the midst of polite company could be considered an issue. Then again, being unable to give that knowing little wink with my left eye for a while would certainly limit those polite conversations where you need to signal a knowing moment where words would just not do. Then again, as a righty, I just tried to wink with my left eye and couldn't do it - so maybe that's not such a big deal after all. Sorry...back on topic...the other piece is the need for some retraction of the dura (that's the lining around the brain) and my brain itself so that the surgeons are able to get to where they need to does create the unpleasant after effect of having my balance mechansim a bit whacked out, which among other things, adds to the needed time to rest and focus on recovery. At this juncture, we are focusing on either the retrosigmoid approach or middle cranial fossa approach. We'll get to more of that at a latter posting, but at the end of the day, we're going to be looking at some decent battle scars on the ole noggin.

SO...the major question is, can a doo rag go with a pin stripe suit? Who knows...could be the beginning of an urban craze. I mean if it works for Hulk Hogan..??