SURVIVOR - OF MY SIXTEEN PLUS OLLIE RESIDENT

By Dr. Ross Lax

I grew up in Howard Beach, New York, next to JFK airport which was about fifteen miles from Manhattan. We were so close to the airport that often our dishes would rattle as the big jets would fly overhead. As a kid, one of my favorite things to do was to watch them land and takeoff from the runways. My dream was to be a commercial pilot, even if I had to be forced to work alongside many pretty stewardesses. Ironically, my uncorrected vision was not good enough to fly. Sadly, my childhood dream never materialized.

My father was an intimidating force and when he raised his voice it would scare us to death. Luckily he was usually in a good mood. If you caught dad at the wrong time when he was angry, he'd force us to get a military style crew cut. I can remember hiding with my brothers in the closet from him. I really wanted to keep my 70’s stylish long curly blond hair. Unfortunately, I wore it too long, and with my “baby face”, I once was innocently mistaken for a girl. The next day I ran down to the barber to get my hair cut much shorter, but still it wasn't anything close to a crew cut!

At times, I’m sure my brothers and I drove my mother insane with our incessant fighting. I could remember her saying, “Just you wait till your father comes home.” My dad was a travel agent for Greyhound and worked in the Port Authority Bus Terminal in Manhattan. It would take my dad at least an hour to get home during rush hour, so we all had plenty of time to hide.

My dad was very well liked and popular at work. People always enjoyed his sense of humor. I always admired how he could tell a joke without messing up the punch line. He'd always say that his biggest regret was not taking school more seriously. By the time he graduated high school, he had difficultly finding a college to accept him.He ended up going to a small junior college in Massachusetts and finished with a history degree. Of my two brothers, I could relate to my dad the best. We both enjoyed working on the yard and getting our hands dirty.

Mom definitely was the softer side. I was always so proud of my mom. She was a beautiful woman. She looked like "Samantha Stevens" in the TV show Bewitched. I'd loved when she'd volunteer for school field trips. Mom was also the great healer, she always new how to take care of our “bumps” and “bruises.”

My mom and dad really valued education above all. When we were very young, my mom dreamed that all her sons would attend Ivy League Colleges. I remember seeing many pictures of us as young children wearing blazers with Ivy-League insignias on our pockets. One of the funny stories I tell about my mom is how she knocked the New York accent right out of us. She played the pronunciation game with us. A good example was the word "Water." If you wanted Mom did give you water, you must avoid making any sort of "AWE" pronunciation. Till this day people don't believe that I grew up in and around New York City.

I remembered when I turned sixteen, I needed my father’s signature for a work permit but he refused to sign. Despite my protests he said, “don't worry about getting a job, there is plenty of time for that! As soon as you finish college you'll be working the rest of your life.” While dad discouraged us from working for an income he pushed us extremely hard to excel in academics. I always remember dad would know everything about my grades. I would recall that if I received a bad grade in a subject he would feel worse then I. My older brother of four years just graduated when entered the same large high school. He was extremely popular. He was Editor and Chief of the school newspaper, involved in the Drama and the French club and was President of the National Honor Society. If that wasn't enough, he was also the Valedictorian of the school. As I entered the high school I really felt that I lived in the shadow of my big brother‘s many accomplishments. Often teachers would call me by his name. Could you imagine how frustrating that was! I felt tremendous pressure in school to do as well as I could. I worked very hard and felt immense stress. Often I would feel a pit in my stomach especially on exam days. I can remember “choking” big time and feeling overwhelmed on several tests. When I graduated in the top 10 percent of my class, it really didn't feel like it was any big accomplishment.

Thank goodness that my younger Brother, decided to go to a different high school that specialized in Oceanography, even though he had no interest in that subject.We were very close in age. One year five months ten days and six hours, but whose counting. We shared the same room and were extremely competitive with each other. We would be the best of friends shooting hoops and a second later cursing each other out. It’s funny, we fought so much that in the same day I wasn’t sure if he was angry with me.To no surprise, my younger brother also excelled in academics and was Valedictorian of his school. He also was also quite the perfectionist. I remember him typing his homework in elementary school. How many kids do that!

My older brother went to University of Pennsylvania were he got a degree in Medicine. My younger brother attended NYU and got a degree in Mathematics. I went to Polytechnic University and struggled for four years and got a degree in Bio-Medical Engineering. At the time I really disliked my major, and decided that I had enough health science courses and applied to Optometry School. Next, I spent four years of hell at the University Of Houston College Of Optometry. The program was nerve racking and filled with tension.

The last year, I chose a six month internship at Castle AFB Hospital in Atwater California. A learned more in this short time from my instructor than I did in four years of Opt school. He really challenged me and got me thinking about what I was doing in the clinic. He also made sure that I would take and passed all my written Board Examinations before the end of the internship. Many of my instructors at University of Houston were complete jerks. Some of them really loved to sadistically torture students. This made learning much more difficult and also caused undue stress. I spent many sleepless all-nighters, especially during my first year.

I had my first serious relationship when I started dating the other Optometrist in our clinic. It’s funny, but from the start, we had an instant dislike for each other. She was quiet and I mistook that for being unfriendly and “stuck up.” She was from down south and I was a Yankee. She really kept to herself and we really didn't have much contact with each other even though the clinic was quite small.

We started working together when my instructor left the clinic for a week. The experience was great as I enjoyed working with her. She was only a few years older, and recently graduated from her Opt school. By the time my instructor returned, I casually asked her out and we gradually got to know each other. I also got to meet many of her friends, which was especially nice.

When I left my internship we were still dating. By 1987, it was time to start paying back all of my student loans. I was ready to work and chose a small town in Pennsylvania called Muncy. I really enjoyed working at the new office location inside a commercial practice. It was great getting paid for the first time, instead of having to pay tuition and board, only to be abused by instructors at school!

We carried on a long distance relationship when I started practicing in Pennsylvania. Thank goodness for shopping coupons from Continental airlines! Every few weeks I flew out to the airport in San Francisco. We spent an incredible four to five days together and then back to Pennsylvania. Then she would come out at much as possible and visit me in Pennsylvania. My parents really fell in love with her. She really had a sense of humor my father especially related to.

At the time, she was nearing completion of her military commitment, we were talking wedding arrangements. On a trip to Pennsylvania, we were looking at a home to purchase, that would ultimately be an Optometry practice that we could both work.

We spoke every evening on the phone. With only a few days left on her military commitment, she completely shocked me. For the first time she was talking about delaying our plans. At first she said she needed more time. As we continued to talk I realized what she was expressing her doubts about coming out to Pennsylvania. She was purposefully vague. I remember that she kept going on about a decision she needed to make. When we got off the line I couldn't move a single muscle. I stood glued to the phone after she hung up. I don't think I ever felt that sad in my entire life. I was truly devastated. I tried to call our friends in Merced, to find out what had happened. After speaking to her roommate, I believe she was dating another person for a few months and their relationship was starting to develop.

It was difficult moving on. I just thought that this was the women I was going to spend the rest of my life with. We had so many plans. I was hurting so much, one night I tried to drown myself in my sorrows by eating an entire large carrot cake in one sitting.

I felt the best way to get over the pain was to find as many dates as possible. I resorted to the dating section columns of our local newspaper which happened to include incarcerated women. Managing to avoid the incarcerated or soon to be released, I answered as many blind dates as I could find. Over many weeks, I met some of the weirdest and strangest characters. Often, I was having fun when I didn't fear for my safety.

Eventually thru a coworker, who met his wife thru an actual dating service, I decided to give it a try. After going down to the agency they had a very detailed list of very personal questions they matched me up with a very girl from a small coal town in Pennsylvania. Deb was very pretty and I was immediately attracted to her. She was smart, intelligent, and had a good sense of humor. She taught music in an elementary school a few hours away. She was home for the summer from school and was looking for a more meaningful relationship. We enjoyed each others company and just loved spending time together. She was also was an extremely caring person and she was extremely close to her family. We also had very similar interests in music and we both enjoy theatre and dining out. We both shared similar life values. We dated for a few years, and we both were ready to settle down and eventually start are own family.

Then life changed on a dime for us. One night I woke up and I was convulsing. My entire body was shaking and I had no control over it. I found it difficult to swallow and the episode lasted for a few minutes. The next day I took off and saw the local neurologist. He sent me for an EEG which came back completely normal. He said that if anything like this happens again to notify him ASAP.

Six months later, in August of 1991, I had lunch in my office and when I came out of the room my coworkers said that I looked like I was just beaten up. I had blood on my lips and I felt that the muscles in my body were extremely weak. I went back to the neurologist and he ordered an MRI. From that point on, my life was never the same.

I remember driving down to the hospital to get the MRI, even joking around with the staff. I said. “I bet this is what a brain tumor ffeels like..Ha Ha”letting out a big chuckle. Turns out the joke was on me.. Life has a way of getting our attention sometimes. Up till that point I was a healthy vibrant 29 year old guy. I felt great; I exercised every day, enjoyed biking, and loved to play tennis. I always prided myself on my good health believing that I'll never have to see a physician ever. After all, I inherited good genetics from my family. No heart disease, diabetes, just lung cancer my grandfather developed from lifelong smoking. After all, I never smoked, I wasn’t a drinker, and I'm not overweight. My only vice was eating carrot cake and I would swear occasionally. But then again who doesn't.

I remember my first MRI like it was yesterday. At the time I didn't know what to expect. I was asked to remove all the metal objects on me and place them in a locker. I started with my tie clip, belt buckle and glasses. Then the technician escorted me into this large cold room with this huge machine. She asked me to lay down on my back on a hard gurney covered with a white sheet. Next she slid something over my head that looked like a helmet with slits in it. After that she immobilized my head with two plastic clamps by each ear. She offered me a pillow for my legs and a blanket for extra comfort. Then I found myself slowly sliding into this hollow lighted tube. Then I heard her exit the thick door which reminded me of a bank vault. OkI was only a liittle nervous and found myself trying extra hard not to move my head. The more I thought about not moving my head the harder it was. Then I took a couple of deep breaths and adjusted to my surroundings as if I was in a deprivation tube. All of a sudden I heard this creepy hollow knocking sound with a reverberation. It reminded me of a knocking sound from a door you'd hear on the TV show, The Adams Family. Next some clicking and humming sounds. Then all of a sudden I felt I was cast into the middle of a war zone. I heard what sounded like "AK47" machine gun fire. Next there were more buzzing, knocking and clicking sounds. Then, back to the machine gum fire which caused enough vibration to shake my entire body while in the tube. I'm thinking wow, what a ride; it’s just missing the light show and loud music. This goes on for about twenty minutes which felt more like several hours. Then, just when I think it’s all over, everything comes to a halting stop. The machine doesn't make a peep. So I'm waiting …waiting waiting .to be pulled out. When thWhen that’s not happening my mind starts to wander. I start to increasingly grow nervous. What if there something wrong with me? It’s getting really scary!..please someone talk to me! Say something! .. Anything!!! Finally they rolled me out. I remember getting up feeling very weak in the knees. I asked one of the technicians if there anything wrong with my scan. She looked away and then turned to me and said, “ I couldn't say without talking to the radiologist.” I left the MRI center tired. I just wanted to go home and put the experience behind me. I just thought I'll get a good night sleep and start back to work in the morning.

The next morning while getting dressed for work I received a phone call from my neurologist. He first told me that I should sit down. Then I'm thinking, Ooh sh-t ...that doesn't sound too good. He literally scared the crrap out of me. He told me that I need to rush to the pharmacy ASAP and pick up oral dexamethsone. He said they found a “mass” on my brain during the scan. I naively asked him if he has seen this type of thing often. In a harsh tone he said Ooh God.No! He really seemed impatient with me on the phone. He ssaid I needed to return to the MRI center so and they could repeat the scan and inject dye to help light up this “mass.” I'm thinking .Greaat.“lets light the crap out of this mass!” Looking back, my neurologist probably felt that he was doing a big favor delivering this news himself. He probably would have preferred one of his secretaries to deliver the happy news into my answering machine. I could just tell he wanted me to get off the phone and he was in no mood to entertain questions. I was so stunned I really didn't have any questions. But in the back of my mind I'm still thinking that this call is a bad dream and I'll awaken shortly.

It was a beautiful sunny day. I was getting ready for work. I felt perfectly healthy. I was scheduled to play tennis that night with friends. Now what.you've got to be kidding! I did rush to the pharmacy andd took the pills. Along the way, I phoned work and told them that I'm not going to be able to come in and to cancel all of my appointments. I rushed back to the MRI center where they were waiting for me. Now for the second time I'm going to be placed into that hollow lighted tube. The knocking starts and all of a sudden my mind is going completely out of control. I'm inundated by an unbelievable amount of thoughtsmostly negative which are entering and exiting my brain.. I'm no longer transfixed by the humming noise of the MRI machine or just trying to keep my head immobilized. Just thinking..thinking.and thithinking again. Then all these questions start flooding my brain all at once. I'm starting to feel all sorts of emotions. Fear, anxiety and yes anger. I was feeling annoyed Who had the hell had the nerve to put that mass into my brain in the first place? What the heck was it doing in there? Is the damn thing growing in size? Then I'm wondering Can I live with having a mass in my head? Than more logiccal questions How big was the mass? Can the mass be removed? How serious is this? Then to fear If this is serious how much time to I hI have? Then I start thinking about my funeral.Who will come to my funeral? Who will delliver my eulogy? Where will I be buried? Then all of these anxious thoughts turn to sadness as I regret not doing more with my life. I started feeling like my life really had no meaning. What was my purpose in life? Had I missed the boat? I wished I took more chances with my life? I wished that I would have traveled more? I wished that I would have had more fun and not take my life so seriously. Then back to my ObituaryI feel sorry for the person who has to writte it, it’s going to be a challenge trying to get more than a paragraph out. What have I really done with my life? Then back to the eulogy.Again.Wh.Who would be picked to deliver it? Worse yet what would the poor SOB have to say about a life as shallow as my own? Again there would need to be serious embellishment here to fill the time! I'm also wondering where everyone will go to eat after the service.

Then I stop myselfI‘m actually hyperventintilating by this time. After I calm down and come to my senses I realized that this really isn‘t a dream. This thing is really happening to me. Why would god punish me I thought? I‘ve always tried to be a good person.I was politeand caring.g….and I‘m sure I helped people along the way in my many random acts of kindness. I also was a big tipper, always 20 percent unless the service was horrendous. Than I‘d drop it down to 15 percent. So..Now I‘m thinking you guys must have made a misstake. Surely someone who’s as nice as me and basically an all around “good guy” would be protected by god. Then I start thinking of the book when bad things happen to good people. Then I go into denialIn no way is that scan belong to me!!e!! It probably was that frail old lady I saw leaving the center when I arrived. They mixed up our MRI scans! Boy that’s got to be it! Surely this whole thing is a mistake of gargantuan proportions. It’s not my MRI! Then I feel bad foor that poor SOB with that mass on her brain.

After the MRI, I was a psychological mess. I needed someone to talk with. My first choice was my mommy. When something bad happens to you some people they invariably revert back to childhood. After all, my mom always knew how to heal all my boo boos.

My mom was great on the phone and that evening my folks drove several hours to my home to comfort me. I spoke with my fiancée that evening and she always knows how to put a positive spin on everything. She had a strong spiritual faith in god and she knew I was going to be fine. She would spend the weekend with us the next day.

My mom being a school secretary was extremely organized and started doing research with my older brother to find an excellent doctor in New York City to help. The next day she used FedEx to overnight my scans to NYU medical for Dr. Ransahoff. It was Saturday, when I got a call from him. I‘ll never forget what he confidently said to me“Kid it looks like an Astrocytoma and I can get it out of there for you”.that was such an incredible weight taken off my back. We scheduled an appointment first thing Monday morning.

I met Dr. Ransahoff, with my folks and older brother. I found out that he was in his late-sixties. Not knowing Dr. Ransahoff, If you’d asked me if I’d let someone that age perform delicate surgery on my brain, I’d think that they would need their head examined. Dr. Ransahoff was quite a character he looked more like he was in his fifties. He ran marathons and had a very young wife to keep him in shape. I also found out that Dr. Ransahoff was world renown and wrote a book on neurosurgery. So I felt I was in good hands. He asked me when I would like him to perform the surgery and I said yesterday. We were able to schedule it the next day.

I remember my first craniotomy with some fondness even though I was asleep for most of it. It introduced me to the wonderful world of anesthesiology. I’ll never forget how great I felt as I’m counting numbers backwards before going under. Every bone in my body was completely relaxed for the first time in my life. It was like drinking this tonic that made you feel warm and comfortable inside. It’s amazing how stiff we hold ourselves. I remember telling the anesthesiologist he could make a fortune if he could bottle this up.

The following day after a stint in ICU I met with Dr. Ransahoff. He told me that he had some good and bad news. “Ok doc.what was the baad news?” He said that you did have an Astrocytoma and I couldn’t get all of it….“so what’s the good news?”..“well. you won’t needeed chemotherapy only some radiation treatments.” At that point I was feeling angry with Dr. Ransahoff.“what do you mean you didn’t get the entire mass?” Then he said, “If I went after the whole thing we wouldn’t be having this conversation.” Going into this operation I did no research on brain tumors. Up till that point no one including Dr. Ransahoff had mentioned that I had brain cancer. At that time, a rarely used the internet for information. In retrospect, maybe it was better going into this without knowing too much.

The pathology of the tumor came back as a Grade II Astrocytoma. There were no mitotic figures or any vascularization. I came thru the surgery very much intact. On thing I remember while I was in the hospital was how important it was to get back into my own street clothes. Hospitals are depressing enough but having to wear the unstylish hospital gown with my own butt hanging out puts you into the subservient role as patient. I really wanted to get back into my own clothes to restore some sense of normalcy and empowerment. It made such a difference in the way I felt about the whole thing.

The other thing I remember was that I really wasn’t fond of my new haircut so I wore my first wig. It looked sort of natural.just a little unccomfortably hot at times. Dr Ransahoff never said a word about taking other medications. I was sent home and took some months off from work. Shortly after the operation, ay I was driving my grandparent’s home from a restaurant and I couldn’t remember their names and who they were. I was drawing a complete blank. I started to panic.and then I blacked out. I ended up having a seizure in the caar while I was driving and luckily hit some parked cars. Thank god no one was hurt. I awoke in another hospital and found out later I should have been placed on Dilantin after the surgery.

I started doing a lot of reading about cancer and picked up Linus Pauling’s book and met with several holistic practitioners. They all advised the importance of organic vegetables and fruits in my diet., and staying away from sugar. Trying to eat like this proved difficult and was often impractical. I decided to add more veggies and fruit to my diet and drink more water. I tried my best to avoid deserts but gradually gave in to very small portions. I also read in Linus Paulings high dose vitamin C can help fight cancer. I overdosed on powdered Vitamin C which is hard to do since Vitamin C is water soluble. I had to go into the ER when I was in excruciating back pain. Seems I overloaded my kidneys with the Vitamin.

Staying at my parent’s home was nice for the first week. I had been on my own for so long, so going back home started feeling like I was regressing back to a small child. When I finished my six weeks of radiation treatments in NY, I really wanted to go home to PA. I loved my parents very much but it was time. I went back home and a few weeks later was shortly back to work. Things started to gradually feel more normal. My hair started growing back and people would have no idea I went thru this ordeal.

Thru the entire time my fiancée stuck by me. She was really looking forward to putting all of the marriage plans together. She dreamed about getting married her entire life! She loved planning every minute of it! I told her I’d rather get it over with and take her to Vegasbut she wanted a large old faashion wedding. I know I sound like a slug but my only job was to show up. This almost didn’t happen because I couldn’t find her church. So what if I was thirty minutes late.after all, I’ve been thru hell and a brain tummor is a perfect excuse for many things We were planning our honeymoon, a Western Caribbean Cruise which we almost didn’t make when we overslept and missed our plane.

I think early in our marriage we were really two goof balls who thought we were immune to anything else going wrong in our lives. After all ,we hade gone thru so much already, and for better or worse, in sickness and in health had real meaning to us.

We had a really strong marriage and enjoyed spending time with each other sharing our collective daily experiences. My wife found an excellent job, teaching music in an elementary school. We were both secure in our jobs and continued to keep our marriage fresh with “date nights.” We would go out to different restaurants every Saturday, then off to a movie, or a concert or play, or a quiet night at home with a “chick flick” rental. Sometimes I got a choice of moviesbut I have to admit “Rambo” sadly was not on the list. After a few years we thought it would be nice to start our family. We never anticipated that it would be so hard to conceive a child. This seemed so unfair, especially to my wife. All of our friends were just starting to get pregnant and it was hard not to feel envious of them. People had no idea we were trying so hard and were unknowingly insensitive.

Deb saw her gynecologist and I had my sperm count checked by my local doctor. It turned out that my wife had a severe case of Endometriosis which made it very difficult to conceive. She had to undergo a laparoscopy procedure to remove scaring. We thought that would take care of the problem but when it didn’t my wife started to become depressed. I thought that if I could bring a little life into the house that would help. So are first baby was a two pound Yorkshire terrier. We still never gave up trying but when her gynecologist recommended a medication that would take her out of her fertility cycle we asked him for a second opinion. He sent us to a fertility clinic about four hours away. The doctor determined that one of my wife’s tubes was blocked and needed to be freed up. He performed a second laparoscopy and a few months later we had a beautiful baby girl.

I know that all parents think that there baby is the most beautiful child in the worldbut she had the most perfect features. She really lookeed just like her mom. I remember rocking her for the first time and feeling a sense of awe that god could create such a perfect creature.

We named her Allison, Ally for short. She was so quiet and content in the hospital. It took her a short time to catch onto breast feeding and when we came home we expected an easy transition. As new parents we knew nothing about raising a baby. When we came home Ally decided it was time to test out her new lungs with some very loud cries. We couldn’t stop her from crying. So I calmly found an internet web site for new parents which had some helpful suggestions. It turned out that the best way to calm her was to take her in the car and drive her around until she would fall asleep. As impractical as that might seem, we started getting used to these midnight trips and for the first year she was born we put a lot of extra miles on the car.

Looking back, the real problem is that hospital, doesn’t supply parents with a user manual when they send the babies home although we did get a free baby car seat. They really should! We were so lost those first few days, weeks and months. Ally really had difficulty adjusting to time differences…..she cried all the time regardless of the hour. I’m a very sound sleeper…a nuclear bomb can go off in the house and I’d still be sleeping. Deb was a lite sleeperso when Ally would cry she would instantly wake up. Soon she would grow resentful of my ability to sleep thru the night. Clearly annoyed she would shake me, and if that didn’t work she knew how to use her elbow. So got up and out for my midnight run. That’s when I realized my wife wasn’t all that nice. What happened to the sweet women who I fell madly in love with?

We were a happy healthy couple with a beautiful girl who was growing so fast. I remember reading a report in Newsweek which stated that brain tumors were cured in Mice, and this was heralded as the next breakthrough cure for brain cancer. At the time, I look at the article with only casual interest, thinking wow that’s really nice. I’d feel even more excited if I were a furry rodent. The drug, Endostatin, was developed by a Dr. Folkman. Endostatin, worked as an anti-antigenic agent which effectively shrunk blood vessels which feed tumors allowing them to grow. At the time Dr. Folkman was heralded as a genius. I never realized that in a few short months I’d be back thinking about brain tumors all over again.

In August 1998, I was at work when I was examining a patient I started suffering from a brief period of aphasia. Aphasia is common condition which affects many people with brain tumors. They are best described as an inability to express yourself vocally as if someone is preventing you from speaking. You’re fully conscious in the moment, but for a period of 20-30 seconds no words come out of your mouth. It wasn’t the first time I experienced aphasia before, but it had been so many years since I ever had suffered this type of episode. They call these temporary “focal seizures” but the more correct term would be “vocal seizures.” What happens is the harder you try to speak the longer it takes for you to recover. My patient got worried; she thought I was having a stroke. Embarrassed by the whole thing I apologized and went on working thru the day. My first thought was that my Dilantin level was maybe too low or I just didn’t get enough sleep. That same evening I was starting to have difficultly swallowing once again and so my wife took me to the Emergency Room, where I was rushed back to the MRI center. A new area of pronounced enhancement indicated a probable recurrence of the tumor.

Unfortunately, this time Dr. Ransahoff was long retired, and I needed to find another doctor.

At that time I met with several doctors. I was really hopeful that Dr. Patrick Kelly would be able to help. He was highly recommended and had an excellent reputation for being a top neurosurgeon. His demeanor was quite negative about performing any surgery. He was concerned that if he would go in an remove it it would g=come very quickly. I remember leaving his office deflated but still wanted to seek out other opinions.

My next stop was Sloan Kettering in New York. My folks and I were ushered into a small brightly lit room. We were waiting for Dr. Lisa DeAngalis for quite some time. When she finally arrived she brought in a half dozen residents who were following her. The room was extremely crowded. She took out my scans, shook her head and said this is really serious. She said that the tumor had surely upgraded. I started to feel so overwhelmed I started to cry; she never acknowledged me or my folks and kept on discussing the cold clinical aspects of the MRI scan. She acted like I wasn’t even there. I hated the fact that my parents were there to see this play out. I remembered how we all couldn’t stop crying after that visit.

My next visit was with Dr.Johnathan Finlay, a pediatric oncologist who was quite nice and spent a lot of his time answering our questions. He was telling me about high dose chemotherapy which might be a good option. He said he had some of his patients do very well with this procedure. Basically they give you a tremendous amount of toxic chemotherapy drugs all over a short period of time to kill the tumor. Just before your bone marrow becomes completely depleted they infuse you with your own harvested peripheral stem cells. At that time it seemed liked the most reasonable approach. I wasn’t scared, I was prepared to do whatever it would take to kill that tumor. I decided that this would be the way to go. I checked into the hospital and went to have my stems cells harvested from my body.

I also did a ton of internet research and found a Dr. Allen Friedman at Duke who was one of the top neurosurgeons in the country. As a final consult, we went to North Carolina to visit him at Duke Med Center. He was very confident in his ability to removed the enhanced area. I felt very at ease with him and I thought ultimately this would be the best approach

. The surgery went very well and all of the enhanced area of tumor was removed. The pathology of the tumor was considered anaplastic Grade III. This was definitely and upgrade in tumor malignancy which was depressing. We did send the slides out to two other brain tumor centers. Both centers agreed that the path interpretation was more of a Grade II Oligodendroglioma than an Anaplastic Astrocytoma.

At the time, I was off from work again and did as much research as I could to determine my next treatment. The best part about being home was that I got to see my daughter take her first steps. It was so incredible watching her walk across the hall for the first time. I really loved being home with her but I also missed not working. Deb and I were traveling to many clinics still looking for the next approach when we decided on an experimental drug called Temozolamide. A Phase II study was being run at Beth Israel Hospital in Manhattan. I started the trial but after five months the toxicity of the Temozolamide was becoming too great. I dropped out of the study.

After the recurrence, I thought it was finally time to tap into the spiritual side of things. I decided to go thru the RCIA program, to convert to Catholicism. I was born into the Jewish faith but really was raised with no religious sensibilities. My father always would make fun of religious people. Especially, the bad experiences he had as a child. His mother would force him to learn Hebrew. He was forced to learn it from an old rabbi with bad teeth and poor hygiene. The Jewish faith was very important to my dad’s mom, so she made sure we were exposed to religious education and all my brothers would have a Bar Mitzvah. Which we certainly had to do. I rarely went to Hebrew school, cut classes, and still graduated. To make matters worse, my grandfather on my mom’s side was also not a religious individual. He was amazing well liked man, who lived his life always doing for others. My grandfather was also well read and took an interest in reading all books on history. He firmly believed that religion was the number one cause of most wars and grief in the history of mankind.

I could never understand my wife’s obsession for never missing a church service. What I loved about Deb was that she never forced her strong catholic faith on me. Before we got married, I agreed to raise Ally as a catholic and reasoned if she turns out anything like my wife I couldn‘t be happier. One day I decided to attend an early morning service at her church. I remember how I really connected with a priest during his homology. From that point on I was hooked. I wanted to learn more about the religion and I’ve got to know him better over the years. I also thought that it was best for a child to grow up believing with a sense that there is a “god” or “higher power.” Often I regret not growing up that way myself, because when you go thru difficult times it’s extremely comforting to know that were really “never” alone. This allays so much fear and anxiety.

At the time I also felt that I wanted to contribute to Brain Tumor Advocacy. I got up in church, and told my story. How I found the church, how I joined the RICA program and why I thought it was so important to collect funds to help brain tumor research to find a cure for this monster. I also was telling everyone about my experiences and there was allot of hope out there.

Not knowing many people at church at the time, I was at the grocery store with my daughter when I came across a man from the church who also was shopping with his girls. The man introduced himself as Tom A. He said he heard me at church and he was also just diagnosed with a brain tumor. I remember him saying.“RossLook at the two of us.would yuld you believe that were dealing with this darn thing.” Tom was a man in his forties and looked incredibly healthy. He had three beautiful girls and he was still working as a Pediatrician. He also enjoyed mountain biking, running and exercising. We had many similar interests and we soon became good friends. Over that year Tom’s health started to slowly decline. We would take long walks together and I was stunned how he was peacefully able to surrender to the disease. He was slowly losing his capacity to do the things we all take for granted. I remember how he loved to read and his wife called me and said Tom now has “double vision.” I tried to help in in my office prescribing prisms to eliminate the problem. It worked for awhile, but thru the weeks I was there to witness Tom go thru a stunning decline. I started to feel guilty going over his house, but his wife would encourage me to spend as much time as I could with Tom. A few weeks later, Tom passed away, in his home. Tom told me that while he was healthy he was making a videotape for his girls complete with fatherly advice. They would receive one for each and every birthday up till the age of 18. Tom had a strong spiritual faith, which I feel helped him thru his brain tumor journey. When I found out Tom had passed away,

I felt depressed and cried for weeks.

I was still working and asymptomatic. I had an excellent quality of life even through the Temodar was hard on my appetite. I continued to thrive and take on more responsibilities at work. I left the commercial practice and joined a practice with an established Optometrist. I tried very hard to help build the practice but the other doctor really refused to let me examine his patients. He really wanted me to bring in my own patient base which was difficult due to the disparity in charges at his office. I did many things to try to build the practice and was never reimbursed for any of these efforts. I became frustrated for the first time and it was hard to keep a good attitude at work.

I eventually left the practice to go back to a large commercial practice. I was overwhelmed with the amount of patients I was seeing each day. I really felt pressured to keep up with the pace. I was also responsible for keeping the practice staffed for many long hours even when the patient load was extremely lite. I had to hire my own staff, and pay other doctors to cover the office in my absence. I had problems getting along with the manager of the department, who gave me no slack with hours covering the office. Often she would pull my paid staff out to help her out front. While the practice was extremely lucrative I wasn’t happy about being there and also started to grow bored with Optometry. I knew I had to leave the practice but I hung on there for way to long! Again, I felt more frustration about things and blamed myself for not having the “guts” to leave. Finally my relationship with the manager became so poor that the corporate office got involved and I was asked to leave.

I decided that I just needed to work a less hectic schedule. I started feeling better about work, when I joined a small group of doctors that covered commercial practices. But I still had frustrations and went thru periods of share boredom. I found my skills slowly eroding, due to my growing disinterest in the field of my work. This created even more anxiety at work.

In 2004, a small punctuate spot showed up on a routine MRI. I sent my scan to Dr. Freidman who recommended that a biopsy of the area should be performed. Not thrilled about going for a biopsy I opted for a PET scan which showed suspicious activity. The area was slowly growing and I decided to have the biopsy performed at Duke. The area was considered low grade II and they thought standard dose of Temodar over five days would be the best treatment.

I was doing great with Temodar for nearly two years. At that time I was still working and I was able to keep up my exercise routine, and enjoyed biking and playing tennis. Life was great and the tumor was stable.

Once again the tumor reared its ugly head. What I thought would be a routine MRI, turned at to be another area of enhancement along the original tumor bed. Wow.That was extremely upsetting! I really thought I wouuld live on Temodar for my entire life while maintaining an excellent quality of life.

Someone up there doesn’t like me! Why don’t they just leave me alone. I’m tiredI fought this hard to reclaim my life! Why the hell is this haappening to me! I was really pissed off! I really was starting to get angry!

I went down to NIH to visit Dr. Fine. He was very nice doctor and thought that taking PCV rounds would be his recommended course of treatment. The P in the PCV is Procarbazine, the C is CCNU, and the V was Vincristine. I opted out of Vincristine with the doctor’s approval, because of concerns of peripheral neuropathy and stated taking Procarbazine with CCNU. The first round was more difficult than the previous chemo treatments. There were many foods that I enjoyed which had had to avoid while on the Procarbazine. I had to avoid cheese, which was a major bummer. Both drugs were given orally. It amazed me that CCNU only given for one night can cause my blood counts to become so depressed. That really sucked. But after the first round the enhanced area was just about gone. I was very excited so I definitely wanted to continue with the therapy. Unfortunately the tumor started enhancing again and new growth was now seen.

I sent my scans back to Dr. Friedman and he surprised me when he said that the new areas were accessible and he could safely remove them. Wowtthat was a great relief. I drove back down to Durham, for my third Craniotomy. You know what they say, third’s time a charm,” so I felt safe. Another operation seemed like a no brainer!! The night before the surgery he told me this time I would be awake for the procedure. I’m thinking are you nuts! I know that the brain doesn’t have any pain receptors, but given a choice please send me to the wonderful world of anesthesia. Actually I knew of the risks involved and felt better keeping me awake so that he would know if it was safe to remove certain brain tissue.

I came thru the surgery with all my marbles intact. I knew I would need to decide on my next therapy. People I spoke with recommended Avastin combinations with chemo agents. Duke had experimental studies for patients with malignant gliomas. They were offering Avastin combined with VP16, which is a sister drug to CPT11 with less side effects, or a combination of Avastin with Tarceva. I chose the combo with the VP16 because Taraceva is notoriously hard on the skin and causes severe rashes. Patients have been currently doing well with Avastin and CPT11 and reasoning that VP16 is so similar to CPT11, I thought it would be a good choice.

To date I’ve completed two months of Avastin combo with VP16. The radiographic evidence of remission the enhanced area looks encouraging. I’m not surprised by the result since Avastin is known to make MRI’s look a whole lot healthier. My concern of course is what’s next. If and when this combo stops working what will my next decision. I continue to research all my options. But I just hope beyond hope that more options will be available to us in the near future.

I’m only working a few half days now but would like to do more. I feel well enough to work but the study I’m involved with has me traveling to Durham every four to eight weeks. It’s difficult to schedule a consistent schedule around my many doctor’s visits and lab appointments.

One thing I’d like to mention are the extraordinary folks who have taken me to Durham so I can avoid the nine hour drive. The two groups are “The Volunteers Pilot Association” and the other has been “Angel Flight.” Both have been an amazing resource for defraying the cost of travel from my home airport in Pennsylvania to the airport in Durham, North Carolina. The pilot’s have all been wonderful considerate people. I’ve enjoyed getting the chance to meet them all and enjoy flying in small planes. What’s really great is that a few years ago I was taking flying lessons and I’ve always been interested in aviation.

Now the challenge is for me to be patient. I need be thankful for what I have and enjoy every minute I have on this earth. Breath in the fresh air and take life as it comes. Nobody knows what the future will hold for any of us. In the history of medicine, many diseases which were considered terminal are no longer, because of some miraculous discovery.

We all have interesting stories to tell. I’ve enjoyed writing a little about mine. I hope that in some way I can encourage patients to keep hope alive in their hearts, and never give up. I’ve been living with a brain tumor for over sixteen years and have managed to maintain an excellent quality of life. No it hasn’t been easy! But I‘m still alive, I can still feel the warm sun; I can still make people laugh.

I was listening to Dr. Wayne Dyer, and he asked a very profound question to his audience. The question was what would you do if you were told you only had six months to live? After pondering the question Dr. Dyer said we should all lead our lives thinking this way. He was telling his audience to think in terms of a six month block of time. Now that you know this….“Live the life you want to live.” “Do whatever you want to do, go wherever you want to go.” I’m thinking how many people truly can live this way. Don’t we all think were going to live forever! I know I still think that way.

I remember I was given a very grim prognosis by a non-compassionate doctor at Sloan Medical Center over ten years ago. If I bought into her prognosis I probably wouldn’t be here. I thought at the time that I’d like to spend my last few months on a beautiful island in Hawaii. I’d just like to lie on a quiet beach and feel the surf, listen to the ebb and flow of the warm water and enjoy the tropical breeze against my skin. Everyone would wait on me.I woould enjoy sumptuous meals along with an assortment of incredible deserts. I would like to share this experience with my wife and daughter.

I don’t know what the future will hold. I’m praying and hoping that a treatment will soon be available to help patients live a normal lifespan with these tumors. I really envision a cocktail approach similar to the treatment of HIV. I don’t see this approach taken enough in any clinical trials. Hope.Hope.Hope .is all any of us have, it sustainstains us and keeps us alive.

Ross Lax -- (16+ year Survivor of resident Ollie)

I have been truly blessed in my life. I’m happily married to Deborah Washleski of Shamokin PA. I have a wonderful precocious and beautiful ten year old daughter. A supportive family and friends routing me on.