Tumor in the Brain

Tumor in the brain describes my brain tumor survivor story. Medically I underwent successful brain tumor treatments, yet my real life brain tumor story is: why do I have so much headaches after the tumor is removed, that I can not even hold a normal 9 to 5 job? Read what happens after they removed my tumor in the brain.

Well, knowing I had to have it done and in only 2 weeks… didn’t give to much time to “plan” things. No, I didn’t particularly have anything to deal with planning or preperation, no money, no assets nothing where a will would be needed. I didn’t have anything, but I did do some journaling to “say my final words” to my kids.  Sounds a bit corny, but if you are in this situation, you know what I am talking about.  It is hard to accept that you might live or die and you don’t know which, so what do you do? We knew basically nothing but there was a tumor, it was dangerously close to the brain and they would remove it and “see what happens”. They couldn’t tell me anything else so what was there to talk about? How do you handle what you don’t know? Life goes on for everyone else and we just took it best we could, didn’t talk about “it” much, just spent time together.

My son took me to the pre-op stuff- you know where you have to go in 3-5 days prior to the surgery and get registered, blood work and such. I also thought that I’d donate my own bood for myself. Might as well, considering all the tainted blood problems you hear about. So on Wednesday before the surgery day of Monday, he drove me over to Los Angeles (about 60 miles and 1 hour west of me).  Inspite of my having an appointment, and being there about 15 minutes prior to that appointment, I still sat there for 1,1/2 hours waiting. I was really aggrivated  as there was no one else there, nothing appeared to be going on, but there I sat.  Finally they called me in. No one else was in the room, no other patients, no one else waiting where I was, seem totally evacuated. Just me was there. Why did I have to wait so long? Well, they took my blood and than I went to the hosptial  to do the other pre-op stuff and they say “Oh, no! You can’t do them on the same day you had blood taken! You have to have at least 24 hours between these things”.  So I have to go home and come back the next day.  Why didn’t they tell me that before when I made the appointment!!!!

So I go back the next day – Thursday – and it literally took 6 hours at the hospital to do what turned out to be maybe – at the most – 1 hour of actual “work” for  the pre-registration, few x-rays and general blood work. The rest of the time my son and I just sat there being uncomfortable, hungry, annoyed that again, even though I had an appointment time and was on time, the entire day was spent sitting in one waiting room after another – just thinking and realizing why I was there in the first place and getting more and more scared and nervous. And we usually couldn’t even sit together – he was in the waiting room, I was someplace else. We couldn’t even talk.  And I gotta say that this hospital’s employees were some of the rudest and most uncompasionate people I have ever met in my life.  This huge, nationally renouned hospital and they can’t even be “nice” or pleasant to the paitents, much less show any compassion.  I kept thinking – “boy, if they registration people are like this, what are the nurses going to be like?” I wasn’t concerned about my doctor as he was the most accomodating doctor. He answered all my questions and even asked me to ask him more! He and his staff were the nicest and most understanding people, so I didn’t worry or wonder about that.  But after the surgery, I’m in the hands of “other” people and my first impression of the hospital staff was not good at all. NOt something I want to know at the start of such a major surgery.

Well, with all taht finally done,  we went home  to wait out the weekend. I had to be back Sunday night at 6pm for check in because surgery was scheduled for 6am the next morning. 

At the conference with the doctor, he seemed very sure of himself and his ability but good grief, that’s his business – his skill. He has to be calm! Gotta admit tho, he was really nice about it and reassuring. I’ve been to other doctors that didn’t want to bother answering questions and were not very compassionate or even friendly. It was like they just wanted you to take their word for it and not bother them with any questions. This doctor ASKED me to ask him questions! My son did most of the asking, I was too spaced out. He was a rock,  my son. I thank God every day that it was him that was with me that day. He had eye problems himself and knew some of the impact on the vision end, not the surgery part, but still, he was  calm and asked intelligent questions. I’m sure he knew that I would be asking him, “what did he say?” on the way home.  His strength is what I held onto.  I couldn’t have done it without him.

On the way home, I was quiet. I was not ready to hear it all again – and understand it this time and have to accept it. The traffic from Los Angeles headed east at 5:00PM on a  Tuesday – well, just say “parking lot” and you get the picture. The time was there. So I asked my son to recap it all for me – in simple terms. Basically, he said, the neurologist doctor said it was a Meningioma tumor  and he will do the surgery – about 10 hours long if all goes well. He will cut away the skin on the left side of my head (a backwards ? mark  pattern),  pull the skin back, cut a circular hole in my skull over where the tumor mass was and take out that piece of skull. Then, go in and cut out the tumor. The vision neuro ophthalmologist would address the tumor in the orbitz area in my head and then turn it back to the neurologist. He would do any “repairs” and then place the circular skull piece back over the hole, secure it with titanium screws, pull the skin back over the area, and staple it closed. I’d be in the hospital for at least a week, and on heavy morphine for at least 5 days. End of story. Any questions? None from me.

It was odd that I wasn’t a basket case. Meningioma tumor – I can’t even pronounce that word! But at least it wasn’t cancerous. At least I had that to hold on to. Plus, since the options were ”do it or die”, what choice did I have? That is probably what helped me stay together. If I don’t do it, the tumor will attach to my brain and the problems will be enormous, serious and evenutally debilitating. If I have the surgery, I still could die, but at least I had the chance of full recovery. It was a no brainer…well, guess that is not the best phrase to use, but I have found in life that if you don’t laugh, you will cry, so just accepted it and did what I needed to do.  Plan for the worst and hope for the best. 

I look back now and think that maybe since it was explained to me in such simple terms, it didn’t sound so complicated and serious, so I didn’t crash and burn over it. It had to be done. I knew that.  But now I understood WHAT had to be done. Even though it was an extremely complicated, serious and dangerous procedure,  since there was nothing I could do about it, “don’t worry, just do it” seemed to settle in me and I accepted it and dealt with it. I had 2 weeks to do what I felt I needed to do. I just did it and hoped for the best.

There wasn’t much time between the time I was told the news of the meningioma tumor and the time I had to have the surgery – just 2 weeks. Trying to get “things” done incase I died was my only thought. I wanted my kids to have certain things, to know certain memories and such. I spent several days just doing things for them – getting things in “order” if the worst should happen. My grand daughter was nearly 3 years old. I didn’t want her to forget me. So I wrote to her in a journal and to each of my kids. Thank God those journals are still in my closet.

My son took me to the nuerologist who said explain the MRI finding to us. Of course neither of us with any medical knowledge, it was all foreign to us. Doctor reviewed the MRI films and said, “there is a very large mass located within the left greater sphenoid wing. The mass has a large dural tail; which also extends and involves the left orbital cavernous sinus and the left orbital apex, extending along the lateral aspect of the left orbital wall. The extenstion of the orbital apex may involve the superior and lateral rectus muscles. The extra-axial mass also markedly erodes in the the bone. At this point, I can’t assertain whether this it was an extra-axial, dural-based mass with is greatly involving bone, such as an agressive meningioma or a meningiosarcoma/hermangiopericytoma, or was it actually a bone lesion which had expanded through the osseous cortex into the lateral orbital apex and sphnoid wing. ONly surgery can tell that.”

My son was my rock, and he spoke up and just said “give it to us in simple terms”. Doctor said – “she has a very large tumor that is so close to her brain, that these films don’t tell me for sure that is isn’t already attached to her brain. The positive I can give you is that since you are not having any motor-skill or speech problems, there’s a hopeful chance it isn’t attached, but it still could be recently attached and the problems haven’t materialized yet. I can’t tell you if it is cancerous or not until a biopsy is done, but from the films it appears to be a very “clean” mass. Cancerous masses are usually more sloppy and mushy looking in the films. This mass is specific and clear. I advise you to have it removed immediately as if you wait, if it is not already attached to your brain, maybe 2 months before it will be. Once attached, there will be addtion problems, even more serious. If it isn’t attached, it will be easier to remove. The reason you are having vision problems is because the tumor mass is attached to the rear orbitz area of your eye. You need to see a Neuro Ophthalmologist for more on that as he will have to assist in the surgery in that area.”

He told his secretary to schedule me for the very next available surgery date. That would be in 2 weeks. I’d be in the hospital at least a week, the surgery would be about 10 hours long.

Okay, whatever.

I hate to have to admit this, but it literally started with nothing. I had no pain. I had no problems. At 47 years old, I had no health problems or symptoms. I have Congenital Cataracts, inherited from my mother’s side of the family – no big deal or major problem. All females have congenital cataracts on our eyes. My son was born with them – first male in the family to have them. He was nearly blind in his right eye and had to have the cataract removed when he was 5 years old and wore a contact lenses until he turned 18 then had a lens implant. Then one day I noticed that I had a problem with my vision while night driving.

The glare from the street lights and vehicle lights was pretty bad and very annoying and made it a bit hard to drive as it was so bright and distracting, I just figured it was due to the cataracts getting worse and I’d have to have an implant like my son (His vision is now 30/20). I went to the same ophthalmologist that preformed the cataract removal for my son. He deals with the front of the eye, and he checked my eyes and told me there is no problem. The cataracts have not progressed at all in the 18 years I have been seeing this ophthalmologist for routine check-ups. He said they were not so bad that they should be causing the problem I am complaining about. He sent me to another doctor that deals with the area behind the eye and he too, said there is no problem with the rear area of my eye. So my ophthalmologist said we’ll try the lens implant and hope it takes care of the problem. One lens implant later and absolutely no change at all. Got glasses and still no change. Still had that annoying glare while driving at night, seemingly getting worse.

at that time, the doctor said that since I was complaining about a problem most would not complain about, he said he wanted me to get an MRI to see what was going on in the back of my head, in the orbits area.  Well, taking an MRI is  a bit scary as you are strapped to a table and rolled into a narrow tunnel and literally in a tube with your head strapped in place so it can’t move! When the doctor got the results back, he called me immediately and said  that there was a very large tumor mass in the rear orbits area of my eye, very near to my brain!  This was not his area of expertise, so he told me he was working to get me in to a Neurosurgeon that specialized in this area as soon as possible.

I was totally shocked. A tumor? A cancerous tumor? Am I going to die? He didn’t say. Just a tumor mass, which tells me nothing. I started to wonder. I have never smoked, never done drugs, never any alcohol, don’t drink coffee – don’t do any of the things that are commonly attached to cancer! Yes, I was a quiet, goody-two-shoes girl! Never smoked, drank or kissed boys that do! So where in the world did a tumor come from? Was I going to die? And so close to my brain! Talk about a double whammy! Cancer on the brain was all that went through my mind. I was working so hard to tell myself, “Don’t panic. You don’t know the details, you don’t know it is cancerous. You know nothing more than it is there. Don’t panic”. I didn’t want to die. I didn’t want to leave my kids.

The next day, New Year’s Eve day 2003, the Neurosurgeon’s office called me and said to come in right away and the doctor will see me as soon as I walk in the door. Okay, so now I am even more scared. When was the last time you went to the doctor and got in at your scheduled appointment time, muchless the minute you walked into the office?! It had to be bad!

You know what, though? One good thing happened in this. I knew I needed someone to go with me. I needed support. I needed strength and in a big way not to mention driving clear into Los Angeles in my condition – I couldn’t do it. I knew I was going to fall apart and wouldn’t understand what the doctor was going to tell me. I needed someone.

When I asked my husband to take me, he didn’t want to take me, but without even being asked, my son, then 21, jumped up and said he’d take me. For a few seconds, I forgot about the tumor and realized and relished the knowing that my son loves me and is “there” for me. You always think and assume that about your kids, but when it actually exhibits itself, without any push or shove, and is just showered on you, it really hits home and at least you have that feeling and knowledge to hold on to while you go through the hard times. Granted, I wish God had chosen a different way to show me that, but then again, maybe it wouldn’t have had the impact on me that it did, at a time when I really needed to know it.

My son drove me into Los Angeles and we saw the doctor. I didn’t even have to wait to complete all that paper work! I was about 1/3 the way through it all and they called me in.    To be continued.

Tumor in the brain describes my brain tumor survivor story.

Brain Tumor Symptoms

It is important to point out that I didn’t have any brain tumor symptoms, yet the brain tumor was there for more than 40 years…

Medically I underwent successful brain tumor treatments, yet my real life brain tumor story is:

why do I have so much headaches after the tumor is removed, that I can not even hold a normal 9 to 5 job? I will post why… Read my brain tumor survivor story before and after they removed my tumor in the brain.