My Story

Some folks tell me that my story is beneficial to them. I don't know about that (!), but here it is:

It was 1994, and I crawled under my car for some repairs. I had to stop what I was doing - I suddenly got very nauseated - attributed (I thought) to a recent bout of the flu. Next, the fingertips on my left had started to tingle. I figured they would stop on their own. Instead, (over a few months), the fingertips on my right hand started tingling...Then, I noticed that at nights, I wasn't swallowing, and would slobber on my pillow (This was DISGUSTING!!!). I would awaken each morning with a terrible headache (really, my upper neck). This was solved by taking three extra strength Tylenols, and lying on the couch for 1/2 hour. Every once in a while, I would cough badly (because I used to smoke cigarettes). When this happened, I would become VERY dizzy, and everything would go black, I would almost pass out. I found out later that this was from "hydrocephalous", the build up of fluid on the brain. I remember driving on the highway at this time - I had a coughing fit. I knew what was coming, and realized that I just couldn't black out while driving on the highway. I remember screaming out loud, "No! No!!! - It passed, and I did not black out. God was there. My vision was doing some strange things - I was diagnosed with "vertigo" (incorrectly). I got out of breath very easily - sometimes just when standing still. People noticed me staring off into the distance with a blank look on my face for 20 to 30 minutes...I could no longer take our dog for walks. I wouldn't play outside with the kids...Once, I was sitting on the "Throne" (commode) one night...I felt everything go black, and fell to the floor. Although totally awake, I could not move a single muscle. After five minutes or so, I was able to pull myself to my feet and stagger back to bed...

So - why didn't I go to the doctor? Well, I did. I was misdiagnosed for a period of two years. I was in the military at the time, and went to the local base clinic. I have to accept some of the blame - even if a PA (Physician Assistant) told me that nothing was wrong with me, I KNEW there was, and I should have pursued the matter further. In retrospect, I suppose I was afraid of the reality. I knew something was seriously wrong, no matter what I was told. I took a "stress test", where they plug you up with many wires attached to your body, and I was to walk on a treadmill. The technician had me lying flat while he applied the wires - which ran to a computer. He told me, "OK, stand up, and run on the treadmill for X number of minutes". When I stood up, his monitor went "nuts". He told me to sit down, and then got 3 doctors to come and see. They did, and the test was halted. These 3 I really blame - they SAW that there was a real problem, and neglected it. The PAs who are not fully trained doctors (yet), just didn't know better. I went to one complaining of all of my major symptoms. He told me we would deal with "one at a time", which made sense to me, but was wrong. He should have looked into what was causing all of the problems. This went off and on for two years, as I already wrote. Then...

I had a seizure. I was at home, on my couch. I flopped about, and vomited on myself. All of this was in front of my poor son, who was just a child at the time. I didn't hear his calls to his mother. She ran into the room, scared to death, just as I was coming "to". This was the "straw that broke the camel's back". She cried to me that I just "wasn't right" anymore, and I had to go to a real doctor NOW! I went to the clinic, and since it was on a weekend and there was no doctor around, I saw another PA. He told me that since I had not urinated on myself, that it was not a

seizure. The following Monday, I was back at the clinic, this time to be seen by an MD. I demanded the best they had. When she called my name in the waiting room and I staggered toward her, she knew something was seriously wrong with me. She called another MD in to the exam room. They both did tests on me, then spoke to each other in hushed tones. She sent me to an off base diagnostic center that had an MRI machine. That test was performed - I returned to the base with my scans in hand. She looked at them for a bit, then sat Shirley and me down..."I have some bad news...You have a brain tumor. You are NOT to drive anywhere, which is a DIRECT ORDER. Be back here at 1800 hrs (6:00) for an ambulance ride down to Bethesda Naval Hospital. They have a brain surgery department there. You will be on medical leave for three months"...

After I was ambulanced it Bethesda, Maryland, I immediately entered the "National Naval Medical Center" emergency room. In a few minutes, a doctor (my neurosurgeon) came up to me. He did a very brief examination, then asked me,” where’s your family?" I told him that they were back in New Jersey - the kids were in school, and we didn't want to take them out and disrupt their studies. His next remark made the gravity of my situation apparent, "get them here". He then turned and walked away.

Zoom ahead to the day of the surgery (the next day) - because I don't remember anything in between. I do recall being on a gurney, and being wheeled into the operating room. The anesthesiologist approached me with a mask for the gas. He asked, "Are you ready?" He then jumped up on my back, and clamped the mask over my mouth, very hard. He did not immediately turn on the gas - I had nothing to breathe! My last recollection was of me fighting this guy for my life...He must have turned on the gas, because I went out...

I was then laid face down on an operating table. The surgical site was prepared. Surgery took 13 hours (or so I am told). My wife was updated hourly. While happy to be kept informed, she later told me her heart "stopped beating" whenever that phone would ring. Surgery was performed by two neurosurgeons. They wore microscopes that helped them see the minute differences between the tumor and the healthy brain tissue. Ultimately, over 99% of the tumor was removed. I have since tried to contact these doctors to update them on my still being alive after all of this time. But as is the case in the military, they have long since moved to other bases, and I cannot locate them.

I awoke in intensive care. Tubes went in my mouth. I was groggy. My Father told me, "You did good!" I thought, "No, the doctor did good - I was asleep!" I stayed in ICU for a week. Some interesting things happened...I was wheeled down to get an MRI. I fell asleep - if you have ever been in an MRI machine you may find this hard to believe - lots of banging, clanging, etc. My sister told me what happened another time...a nurse made her "rounds", and gave me morphine in my IV. Then, she either forgot to annotate her actions on the chart, or the next shift of nurses misread it, because I got ANOTHER dose! I was extremely stoned - to the point that I even asked for a pen and paper and asked my sister if I could borrow her car! I am told now that such a "double-dose" could have killed me...

Don't try this at home...I remember this one well. I had a "morphine moment" where I thought that there had been 22 tubes down my throat, and they took out 21, but forgot the last one. So, I took it out for them! I remember how when I had the thing halfway out, that I probably shouldn't be doing this. But, I couldn't shove it back down - I might damage something in there...so, I took it out and handed it to the nurse...I remember her screaming, "Doctor!...Doctor!!!" The next thing I recall, I was waking up again with the tube back in my throat, and my hands tied to the bed! It had been my breathing tube, without which I would have suffocated.

What a sight! I had the big breathing tube in my throat, a feeding tube in my nose, and a catheter in my...well, you know. My vision was terrible - everything was double. (Still is). I was confined to the bed - no way could I walk (yet!). I could not eat, I had no swallow reflex. I was fed through a tube that was first in my nose, then through one that went directly through a small slit in my skin directly into my stomach. I couldn't talk - not with the breathing tube in. So to communicate, I was given a board that had the alphabet on it. I was to point to the proper letter and spell out my message. This would be maddingly slow in itself - but with my double vision, I kept pointing to the wrong letters. My wife wondered just what in the world I was trying to say - I usually gave up in disgust...

After a while (I have no idea how long), the decision was made to remove my breathing tube and see if I could breath on my own. They did, I remember taking short loud gasps for air. My doctor told me, "calm down and try to breath normally" I REALLY tried hard. But - I woke up with a trache tube cut into my throat. It was for breathing - still, I could not talk...

I then moved out of ICU and into a "regular" ward. I had an IV, a "pulse oxymeter (that measures the oxygen content of your blood), a catheter, a PEG (feeding) tube, and these really cool stockings (NOT socks!) that were supposed to eliminate the formation of blood clots. They failed, but I'll tell you about that later...I had an oxygen tube going into my nose. And, my pajamas were three sizes too big! Those and my stockings made quite the fashion statement...

Now that I was in the "regular" ward, things happened fast. It was determined for me that since less than 100% of the tumor was removed, I would need radiation treatments. They would be administered at another hospital in the D.C. area - Walter Reed. My days were pretty full, with this doctor and that one poking their head into my room, testing this or that. I remember being annoyed at these interruptions - all I wanted to do was sleep!

One doc came in. "Who is the president?" (I got that one wrong...) "What was D-Day? What is your name? Your wife’s' name?" All sorts of neato things for me to "peck" out on my alphabet board. Although I had the trache in, it wasn't "plugged"; the result was that I could not talk. I was helped to a lounger chair to sit in. While in bed, the nurse put my sneakers on me so my feet would not go flat. My mother had told me that I had better NEVER lie in bed with my shoes on. Boy, if she was here, she would be MAD!!! One day, a doctor came in to tell me he was "downsizing" my trachea. Big deal - it still felt the same! About a week later, they plugged it up completely - to see if I could breathe on my own. It worked - I could talk. The speech therapist asked me if there was anything I wanted to say to Shirley...I croaked out, "I love you" (WooHoo - points!!!) My voice really sounded terrible - I surprised myself!!! I sounded 150 years old...

I had daily speech therapy sessions, where they not only worked on my speech, but my swallow and gag reflex. This lady had a glass of ice that she would chill a spoon in, and then put it in the back of my mouth. I did not gag, I did not swallow. It was just there. I was annoyed, I wanted to sleep...Eventually, I had a "barium swallow", where I had to eat this radio-active substance called Barium, while standing in front of an X-Ray machine. That way, the docs could watch and see if I was swallowing completely or if some was going into my lungs (a bad thing). I failed miserably. More feedings through the PEG tube in my belly...Two weeks later, I had another Barium test - I passed! The tube was removed, and I was put on a regular diet. Hospital meatloaf has never tasted so good!!! Mmmm!

In speech therapy, I had to speak into a microphone which went into a computer. When looking at the readout, my therapist mentioned that mine was the most "messed up" test she had ever seen! Croak on!!!

Psychologists came to my room to see how depressed I was (I wasn't, and they never came back). I was taken to physical therapy one day - I was laid flat on a "bed" and had to learn how to sit up all over again! (I was pretty bad off) Weeks later, again in physical therapy, I had to walk about 10 feet, while holding on to these railings for balance. I tried so hard - concentrating completely on each step...Finally, I noticed people were laughing at me, pointing at me. My wife had a look of horror on her face. I looked down. There, around my ankles were my PJ bottoms...no wonder I was having so much trouble walking! Of course, I had nothing on underneath. Strange - that wasn't as important as making it to the end of my walk! I pulled up my drawers, and kept trying! Whatever!!!

I stayed in this hospital for about one month. All of my family had to leave to get back to work, etc. My wife and kids also had to leave - they returned home so the kids could get back into school. They had already missed a whole month. I assured everyone that I would be fine, and off they went. *note - this was VERY hard on Shirley. But, I assured her I would be fine. In a few days, I was taken by ambulance to Walter Reed.

The ambulance ride to Walter Reed was uneventful. I arrived OK, but the Naval folks sort of forgot to send my medical records with me...it was just me!!! I was shown to my room. It was determined that a doctor would have to do a physical on me. This pretty young female came into my room, and told me, "OK, take your clothes off". I told her I would, but she had to first...then she told me she was a doctor! (I didn't know - hey, I just had brain surgery!!!)

Walter Reed constituted the second part of my treatment - and would be my home for two months. Many different treatments happened there. I had radiation treatments, physical therapy, occupational therapy, speech therapy. All sorts of infections happened there. (Not that it was a bad place - the care was top notch. My infections would have happened anywhere). While at Walter Reed, I saw many other patients, some way worse than me. This gave me strength; it made me realize that I wasn't so bad off. That was one of the most important things I learned - you can't get any better if you are dwelling on the severity of your current situation. So in a very real way, those very ill folks performed an important task that they never even knew they were doing....

At this point, I was confined to a wheelchair. This was my first exposure to such a device. As I sat in it for the first time, I tried to wheel away. It felt difficult to wheel on the left side...I guess my left arm had weakness - from the tumor or the surgery. I had seen little old ladies wheel themselves around...there was no way I wouldn't be able to do the same thing. So, I "toughed" it out....A WEEK later, I found that the brake was on (duh!). I removed the brake - life instantly got better! I moved to a walker for a short while, then to crutches. (To this day, I keep a cane handy - my balance isn't the greatest...)

Physical therapy seemed useless...I had to wheel myself down there, wait the usual 10 to 15 minutes, and then get to ride a stationary bike for 10 minutes...Or, I would get this exercise or that one. What a waste, I thought...actually these things worked! I still can't dance, but come to think of it, I never could (!) Life went on this way. I would have daily radiation treatments...where I had a special mask made out of plastic mesh that was heated, and laid on my face to conform itself. Once put on and strapped to the table, I couldn't move my head. That way the radiation would be EXACT. The beam of radiation is many times more intense than an average X-Ray. Its purpose is to destroy any tumor cells remaining. Unfortunately, it also damages good tissue along its pathway. Both of my ear canals became inflamed and tender - and now years after treatments, I still have problems with my ears that require medical attention (I have an appointment next month...Until then, I will be hard of hearing out of my right ear, and there will be this loud "ringing"...Oh, well - at least I am alive to complain about it!) My hair fell out in the back of my head. When it re-grew, it came in a few shades lighter. Does it look good? Who cares - I don't have to look at it - that's YOUR problem! There were many somber faced folks in radiation oncology. I finally realized that they had CANCER!!! Pathologically, my tumor differed from cancer only in how it looked under a microscope. So - mine was benign - Thank God! (I have since had many friends with "benign" tumors die...any time something grows in a confined space such as the skull - it is a BAD thing)

My weekdays were taken up thusly - this appointment today, that one the next day. Most just broke up the drudgery and boredom. Radiation treatments can cause

many unpleasant reactions in people. In my case, I just got tired....It seems I was always tired!

One day during a slack time, a nurse wheeled me outside to get some sunshine and fresh air. It was a beautiful spring day - she pointed out a robin....I broke out sobbing! Now, I had no connection with the bird - I actually had no idea why I was sobbing. But - let me tell you, I was doing some big boo-hooing! Tears and everything! I found out later that some folks that have just had a surgery can bawl at times. So, although I was sobbing, I was also laughing. How strange! (That nurse NEVER took me for a walk again!!!) ***Note - this also happened to my friend David (angel now) at his daughter's bat mitzvah (or however you spell it). She was about to be honored in this solemn ceremony, when her dad busted out in uncontrollable laughter. He wouldn't stop, some of the audience politely chuckled, although they didn't know why! After the "bird" incident, I was allowed to go home on the weekends, providing I was back in place next Monday morning. This single allowance helped me SOOOOOO much. I will ALWAYS be indebted to the members of my military squadron who volunteered to drive the 4 hours to D.C., and the 4 hours back home. It was on one of these trips back home when I noticed my hair was falling out. Now - what do you do when you are in someone’s car, with a handful of hair? I'm sure they wondered why I was opening the window - it was still cold outside!!! I tossed the many handfuls of hair out...

Up till this time, I would have my many appointments Monday through Friday, and then just watch TV Saturday and Sunday. BORING!!! But going home made me feel more like ME - although I usually slept the whole weekend, I got to see my wife and kids. My doggy remembered me!

One week before my surgery, Shirley and I picked out a house we liked. We got a VA loan....Their red tape dictated that the loan could only be approved to an alive veteran, so (I still love this) I had to make the statement "I am Bruce Blount, and I am not dead." This was witnessed by an officer, annotated, then faxed to the V.A. Shirley had to close all by herself. While signing the many papers, my wife was told that there was an outstanding warrant for her arrest. With my frightened wife reduced to tears, she recieved an apology; she was evidentially not the same Shirley Blount - who is a black woman, and my wife is white. She composed herself, and continued signing. I came home to our new house. Life was looking up.

"Why is your left leg so much bigger than your right one?" My doctor (the pretty one) asked one day. "I have no idea" was my reply. I had noticed pain there, all that day. The nurse told me it was probably due to my not walking too much....

I was taken to ultrasound - where they "looked" into my left leg. More hushed words, then the familiar tone of voice, "I have some bad news...." I had a blood clot in my leg. The big worry was that it could dislodge, travel to my heart, then to my lungs, killing me. Oh, boy....Treatments were to either chemically dissolve the clot, or install a "Greenfield Filter" in my Vena Cava next to my heart to catch the thing, should it dislodge. The doctors were hesitant to use the dissolvers, as it might have impacted the healing of my surgery. So, I now have a titanium filter in my chest. This doctor "snaked" it through my vein - from an incision in my groin. A” Little Pinch"? It hurt like hell! After a few, he said, "all done". I was told to lie on my back, and not move for 24 hours. Wonderful...

Let's see - I also had pneumonia which was treated with drugs. I contacted a urinary tract infection - a high fever and all - more drugs...I lost a total of 30 pounds while in the hospital. I later joked that I had invented the "Brain Tumor Diet", and was going to get rich!!!

Later, in my bed, a doctor checked on me. I wasn't asleep although he must have thought I was - my eyes were closed. He said, "Poor guy, everything has gone wrong for you".

Optometrists there prescribed "Prism" glasses for me. They (pretty well) corrected my double vision. Up till then, I wore an eye patch, and resembled a pirate...AAARGH!!! To this day I have to wear prism glasses. This is OK; they look just like regular glasses.

The day came when I had my last radiation treatment. Speech therapy was finished. So was occupational therapy. Eventually, the day came when I was set free!!! It was almost three months to the day since being diagnosed.

The military had little use for someone unable to run (barely walk), with extremely poor balance, double vision, and extremity weakness - I was told that I would be "boarded out" of the Air Force. This was fine with me - my priorities had changed so much....It took a whole year, but I was medically retired. Did I end up with a 100% disability rating? Nope....

The next few years were comprised of me learning the "new me". But - I got bored with "me", and decided to go to college. I did well there, earning a 3.45 grade point average. Then came Algebra. What a disaster!!! I have never tried anything so hard in my life! I took notes (3 notebooks full) - I got a tutor. Nothing worked - I failed the course. Not once, or twice...I took the same course three times. Each time I failed. I just could not remember those little "squiggles"... I went to my school counsellor, and told her about my problem with my memory. She scheduled a meeting between me and the school doctor - I was going to try and get a waiver for math. I met the doc - he had a suitcase full of little wooden blocks and such. He tested me for an hour, then told me, "I don't see a problem...I don't think you are trying hard enough." I am usually very calm, but my blood "boiled" when he said this! I told him, "maybe your little test does not work for a brain damaged by a tumor"...I got up and left the room...The end result is that I do not have a degree.

One day, I "Googled" the words "brain tumor" - and clicked on a link to something called T.H.E. Brain Trust. Within that organization, I found an online support group for adult ependymomas. I went there, and wrote to the facilitator that I was a survivor, and would be willing to help others however needed. She added me to the group. About one year later, she asked if I would take over for her. I did, and to this day I remain at the position of facilitator. I like it, and have gotten many "thank you's" which mean everything to me! I have made friends there that will be in my life for as long as there is life in my body!

I also co-facilitate the Monmouth and Ocean County Brain Tumor Support Goup here in New Jersey. The people there are my friends - I love the connection with them!

There are other things I have accomplished - which I will mention, but not go into detail. (I dislike people who brag!).

I have been to Washington, D.C., acting as a brain tumor activist. While there, I spoke to elected officials and their staffs about BTs. I have written an article that was published in a local newspaper (BTs again). I have requested (and gotten) a proclamation from my mayor declaring the first week in May as "Brain Tumor Awareness Week. Probably my greatest acievement was being highlighted on CNN.COM. After that, I was written about by three local newspapers, and honored by my mayor. I have spoken at one conference, and am scheduled to speak at another in a few months.

So - did I ask for the tumor? Of course not. But, I'll say it again - I have said it before. (This one is sure to anger some of you) - "I recommend a brain tumor as long as it does not kill you". My life has purpose now. I appreciate each and every second I am alive.