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Brain Tumor Survivor: Joyce J.



Joyce


Last updated: 7/26/2011

My story isn't unique but it is true. Sometimes I feel that this all did not happen but must of been either a book I read or movie I saw. But here is the reality story.

My meningioma was frontal olfactory groove extending into anterior skull base, parietal and sphenoidal wing & temporal areas. It pushed a lot of the brain over toward the right side. I worked as a pathology transcriptionist for many years and then 10 years ago changed occupations & went to work in a govt research laboratory. I don't think occupation has anything to do with it but then you never know.....maybe it is set off by environmental factors if the body is genetically set for it. They claim it cannot be caused by trauma.

I was having bad eye days at work and complained about our fairly new TV making a buzzing sound (which turned out to be in my head from auditory nerve damage). Then the headaches started and the dizziness. I had been treated for "sinus infections" for many years and just got tired of taking antibiotics so I changed doctors. Best decision I think I made in a long time. Within a month I saw an ENT specialist who ordered a MRI and told me what the problem was and I had to go see a neurosurgeon as this was out of his realm. I asked who he would send me to if I was his wife or daughter and he recommended one of the best teaching neurosurgeons in the US and he was right here in New York. How's that for luck! There were more specialists, an angiogram of the brain, MRI and I was then booked for surgery very quickly. Didn't have time to take care of daily living and still think about what was going to happen.

I had a long surgery which revealed that my tumor was more extensive than showed on the MRI. My tumor did some damage prior to surgery which I did not realize or was just in plain denial that I was having a problem. Independent thinkers seem to have this problem! During surgery I had some problems and was put on a respirator. I guess I didn't like it and pulled it out (ouch, this makes for sore throat and choking). But all in all, I was allowed to leave the hospital on fourth day after surgery as long as I was never left alone. Being on the 18th floor during a rain and wind storm was more excitement than I like so begged to leave and was out of there like a shot. I am fortunate to have a husband who had been in nursing and knew how to take care of me.

I have both short term and long term memory problems but nothing I can't deal with - drives my family crazy but it keeps them on their toes when they have to hunt for all the things I put away in weird places. But I do remember having the articles in my hand, just don't know what I did with them after they left my hand....strange. My surgeon only shaved half of my head which was kind. Today the top of my head still feels different from the rest and there are dimples where I never had them before on the sides and front but a change of hairdo took care of that. Vanity played a part in that decision.

Believe me when I say with the frustration of not being able to do things and dealing with residual problems I was starting to think I had a head problem, but other than the "M" -I didn't. My left side is a little weaker than the right, I have no smell or taste ability (which makes cooking interesting to say the least). Because of the ear nerve damage I have ringing or buzzing continually (volume seems to be broke as I cannot control it) and this causes imbalance which in turn causes nauseousness. The imbalance probably bothers me the most because I don't particularly want to use a cane and I never know when it is going to hit me or where. The cane slows me down and it makes me feel older. There's that vanity thing again. My father was a drinker and I'm not but I'm the one who staggers at times. I sometimes wear a portable CD player to drown out the head noise but there are other ways of dealing with it. The double vision or should I saw the roaming vision was the pits. As an avid reader my reading is now limited as the left eye decides to get tired after a couple of pages but at least the floor doesn't seem to be moving anymore. TV was interesting tho...I got to watch two of them at the same time, would have been better if they were playing different movies.

I am 57 years old and have permanent custody of four of my grandchildren. I did not have panic attacks until after my surgery. They were frightening with chest pressure and not being able to breathe. I just felt like I was going to die. Once my husband had to bring me to the emergency room but after a few hours I was fine. I think the stress of not knowing what was going to happen to me was setting them off even though I was not conscious of it. I got medication and they have been under control - thank heavens. The Dr. added small dose of Zoloft to my Dilantin and they have helped. Other than antibiotics & sinus pills I never took medication. Dilantin caused some weird and wild dreams but they are definitely better than seizures. They are now saying that I might have to take them for life....that is when I don't forget to take them but as long as I keep having negative EEGs I'll deal with it as a minor problem. After this the ENT specialist increased the Zoloft as it is supposed to help the tinnitus situation calm down a bit, which it does.

My doctors put me out on Social Security Disability and I had LTD disability insurance which I am thankful for. I know in my heart that I could not work and keep a job now if I had to but on the brighter side - I have been given the opportunity to be with my grandchildren and to raise them when with my own children I had to go to work and always felt guilty that I did not have enough time with them. I guess God works in mysterious ways.....but I sure wish he would lighten up a little. Last month I actually got to go as a chaperone with my granddaughters 5th grade class to the Fire Academy School and crawl through I smoke room. It was a good thing the kid in front of me knew what he was doing! This was a first and now I know that in a real fire I probably won't be able to find my way out of the house.

It's been a long road, a bit rocky in places but that is what life is all about...bouncing back. I feel fortunate to be here and hopefully to help someone else through a rough time if I can. It is a scary trip but there are rewards along the way that we seem to forget during the everyday hassles and stresses. After this experience I feel that all the other mountains are little ant hills and can be conquered. I know others who are not as fortunate as I have been and a few who have passed on so every day that I wake up is a great day to me and all the rest of the problems & frustrations are inconveniences that I can cope with. I had been a part time student in a local college when this happened and in time hope to go back and take some courses....if not to finish my degree than to take some fun courses. We'll see what the future holds. In the meantime, I try to do what I can around the house, have taken up crocheting baby sweater sets and am making & hand painting candles as something to do to help occupy my mind. Don't want to be caught up in the "catch 22 circle" of worrying about everything & focusing on my minor problems and then going back into major panic attacks and feeling every pain or ache and not being able to live some kind of life.

Best wishes and hopes for a rapid recovery to all those who are traveling this path...KOKO (Keep on keepin on) as I learned from another M friend!


Update: 7/26/2011

So here it is July 2011 and I am still here fighting the Beast. Original surgery was in 2002. The only way to describe the next few years is the word horrific. I was diagnosed because of continuing sinus problems and was then sent to an ENT specialist who ordered a MRI. I thought he was going to scare me with the words Asurgery for nasal polyps.@ When he said Abrain tumor@ it didn=t scare me as much as nasal polyps would have. Since the Beast was mostly frontal my emotional responses were a little impaired and there was no response at all. I also was noted to have no facial expression responses. After surgery I couldn=t get used to all the things I couldn=t do anymore. I suffered with double vision, severe memory problems, head noise and loss of balance, etc., etc., etc. I cannot smell or taste any longer, which is most interesting to say the least. One of the more annoying things was I was not making rational decisions and it was constantly being pointed out to me. Example of this: one day when I had a headache I got in the car (with double vision) and drove to the primary doctor=s office a couple of towns west, about 20 miles from where I lived. Once there I did the waiting thing in the waiting room. My husband was at home and when he realized I was gone, with the car, he was frantic. He and one of my brothers started calling around to find out where I went and one of the places they called was the hospital and then the doctor=s office. I had never thought to leave a note which I had always done before. Luckily the PA knew I was alone and kept me there until they arrived to take me back home. I don=t think I ever saw dear hubby or brother so angry. To prove to me I shouldn=t be driving he handed me the Rx and told me to read it......I couldn=t see it well enough to take from his hand. The thought that I could have had an accident had not occurred at all. There was no fear or thought that I could have killed someone or myself. One of the feelings I did have after the car keys were all hidden was of total despair and loathing where I was now. Having always been the independent one who was able to do everything and even to helping others I did not like the position I was in. I was determined to get back to my old self as much as possible. Over the ensuing years my vision with glasses corrected and now I drive. I was absolutely lost without this privilege.

Due to the poor vision I have fallen, have reached for something on a top shelf in the basement only to have a pipe come down, striking me across the nose and across incision line and pins inserted at surgery. Nose was broken but not displaced, two pins were knocked loose but not floating around in there. Thank heavens this doesn=t cause any more electrical circuit problems in my brain. I have missed a step on the stairs and gone down a way other than how one is supposed to go down, skinned up a leg but it healed without incident. Turned too fast and fell in the snow, breaking my wrist. How does one break a bone falling in that white, fluffy stuff!

When Social Security sent me to their and psychologist for testing I failed the test with flying colors and was granted disability. About two years later a friend told me I could apply to SS for a copy of their findings. I did and I was upset when I read the results of the testing and diagnosis. It read as if I was mentally retarded. It was suggested that I not be left by myself, not to trust me handling household finances or the bank accounts and that we should consider moving to an area where the way of life was much slower. All my family and friends were here; I did not want to go somewhere else. I was enraged and my feelings were, Awho are these people to say things like that about me.@ This was just more fuel to the fire that pushed me to do everything I could to get back to my old self.

First off, the seizure meds that I was given were causing severe side effects and after complaining multiple times about it, the doctors finally changed it. It took a few years but now I have no seizures at all. The worse ones were when I woke at night seizing. This was scary and my only thought was if I did not wake up during the seizure I was going to die. Once this problem was solved I was to be weaned off steroids. I have heard bad things about steroids but my metabolism must of been just right for them. I lost weight (Yea), had the energy of ten people and was so hyperactive that it was driving others crazy. I would have gone out and been a famous baseball player if only I could see the ball. Touch of humor there. I could not sit still and have a cup of coffee without jumping up to check the coffee pot, wipe the counter top, run out to check for mail, etc. and all the while trying to have a conversation with company. This was a joke because most of the time I could not keep track of what was being discussed anyway. I still have this to some degree even off steroids. I was never hyperactive and always could stay focused on the project at hand, even when multi-tasking. Now I can jump from one thing to another and have to work very hard to start, do and complete a project before moving on to another or nothing would ever get done. I can no longer multi-task. I get confused if too many things come at me at the same time. I have to walk away, regroup and then tackle one thing at a time.

My language skills were messed up. My comprehension was messed up. My speaking language was messed up. Sometime I could think of what I wanted to say but couldn=t find the words to say it. My ability to learn new things was messed up and I found myself asking others to show me how to do something that I knew or to help me with instructions that I could read but had no clue of what the words meant. My language skills went from college level to grade school level. My neurologist suggested that I start taking Vit. B complex pills and doing word and math puzzles to gain back some of what I lost. In other words, I was to push myself to be mentally active. I took his advice and also went to the library and started reading large print books. In the beginning it was difficult and many times I just got frustrated and stopped. Major frustration and anger with myself made me keep pushing.

I still have memory problems but not like I did after surgery. The cliche, Aout of sight, out of mind@ definitely applies to me. I still do the note thing and think I am keeping 3M in business. Everything has to be put on a large calendar or appointments, etc. will be missed. With glasses the double vision was cleared up, except when I am really tired. Since I was an avid reader before the Beast invaded my life I am now able to read large print books from the library. Thank heavens, something from my old life was coming back! Now comes the good part, remember Aout of sight, out of mind?@ Well, I now put my initials in pencil in each book I read because if I don=t I could read the same book a dozen times and never have a clue that I read it before......the old memory problem. Strange that I am afflicted with this annoying and frustrating problem but am confused that I can remember how to cook dishes that I always made or to crochet/knit patterns that I have always done over the years. Not that I am complaining but it would be nice to understand it and work on correcting this.

I am determined to beat this learning problem also. I am taking quilting lessons an hour each twice a month. I have to admit I am very slow at this and often forget an important lesson but there is another woman in the class who also had brain surgery but for an aneurism and she is just as slow. She just does not forget what she was taught as much as I do tho. I know it is not nice to point the finger but with her in the class I feel almost normal - finally. We have become good friends and can laugh at some of the things we both have gone thru that most others do not understand.....we both get it. The space were my BT was is now mostly just space so I guess it is safe to say I am now an air head! She has to worry about another aneurysm, stroke or clot on a daily basis and I worry about the Beast=s baby starting to kick. Yes, I have a baby Beast but so far it is happy to stay a baby. I will not let this effect the progress that it has taken me nine years to make. I am determined to stay optimistic. I figure if it took thirty years for the Beast to grow to grapefruit size before starting cell changes that with my age plus thirty years more, I am not going to worry about it. It=s possible I won=t be around when the odds are no longer in my favor.

Because of auditory nerve damage from the Beast, not the surgery, I have head noise all the time. It is worse at night when lying down. This damage also effected my balance. I carry a cane in the car at all time because I never know when the balance problem is going to strike. I cannot look up or I will fall over so I have learned not to look up unless I am holding onto something sturdy or sitting down. I also cannot dance, I cannot turn my head quickly or bend down to get something out of the lower kitchen cabinets or I will lose my balance and fall. I use a shower chair, especially when washing my hair just in case. Instead of bending or reaching to get things I get down on my knees or use a small step stool - which my family doesn=t like but I cannot just ask others all the time to stop what they are doing to come do something for me.

One can learn how to live without doing some things that were once done. The brain can help us compensate in areas that we are now lacking. The important thing is not to give up, not to lose focus on trying to become what we were before the Beast if this is indeed what you want. Don=t sit back and let life go by without doing anything to help yourself. I am grateful that I had the drive to accomplish all that I have and am able to change or learn to live with what I have to. I consider myself lucky to be here today to share with others. My sister-in-law tells me I am a blessed one. I guess everyone has their own way of looking at it. I see it as my job is not done (whatever that is) and I am a nine year survivor of a grapefruit sized Beast with atypical cells, who has left me with a baby to care for. No one has told the Beast that I am retired!

As it turns out after taking care of the Anew me@ my Dear Hubby=s heart has decided to take a turn for the worse. It is slowly declining and he is not a candidate for a transplant. Now it is my turn to take care of him as best I can. To me, this is worse than all the problems that the Beast has caused. My illness is a drop in the bucket compared with what I see him now facing and my pain is totally emotional. Here it now is, nine years later, and I am able to feel emotion again. I don=t want to feel this!

We sold our home of 38-years and had a modular home built in PA and delivered to Son #2's property. Most retirees downsize but we up sized. In my irrational, illogical, crazed moments in trying to heal myself I designed the retirement home that I thought would be nice. Once it was actually built, it turned out really nice - don=t ask me to explain this for I cannot. I should have put a patent on it. LOL Suggestion: Don=t doodle on paper and let someone else see it - you could be in trouble. A friend saw my doodling and sent it off to a modular building company and they liked it - thus my new home. No, they didn=t give it to us - they liked the design, built it but we had to pay for it. I sometimes wonder if they use my design, shouldn=t I get royalties or something. Fat chance......

We have temporary custody of our three year old Great Granddaughter until the parents get their act together. She is a joy in the house. When we got her in April 2011 she didn=t talk at all. Now we can=t keep her quiet. LOL It is a good thing I never threw out all the children=s videos and toys that we had. It was a consideration when we built and moved into our retirement home but I kept them. I always knew they would come in handy some day. LOL My home decor has slipped back into early childhood and my language skills are easy to handle - potty, peepee. poopy and yucky. We also have our 16-year old Granddaughter who we have had since she was one. She is my right hand. She helps me do some of the things that I no longer can (when she is not texting that is). She scolds me when she sees me up on a step stool and both girls head for the kitchen when they see Grandpa heading there because they know he will share good things with them. I am truly blessed in that we have a close knit family and the offers of help are always there.

It has taken me a long time and a lot of editing to write this update and apologize for it's length but nine years really is a long time even though it seemed to fly by. I still have many doctor visits to make sure things are continuing on the right path and still have to have annual MRIs. I hate MRIs. The first postop one after discharge was a horror which sent me into hysterics. Major seizure hit while in the tube but the tech was not sitting outside the window like he was supposed to. Of course, while seizing one cannot hit the emergency button. When he finally returned I was half off the table and couldn't get the basket thing off my head and all he could say was, "Mrs. Jones are we having a problem." Murder was going through my mind and ever since I have major anxieties about having this test done. Logically I have tried to psych myself into being calm but for some reason I cannot. I have told myself this is a stupid reaction, it is a noninvasive procedure, I am an adult and this is childish behavior but so far nothing works and I have to admit that the anxieties make me a person not fit to be around. I can only hope that some of my experiences can help the reader and give them insight as to "there really is light at the end of the tunnel." Best wishes to all who get it.

Joycey J in NY
Frontal olfactory groove extending
into anterior skull base, parietal and
sphenoid wing & temporal areas,
completely resected 3/2002 but left
with neurological deficits.
12/04: Hyperintense Enhancement
9/05: 2mm Enhancement.
9/06-present: W&W



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