Wednesday, September 11, 2013

Catch-up

Since I last wrote, a few things have happened.

I've told basically everyone at this point.

It's hard to capture the feeling of panic that had set in while I was looking for doctors.  I spoke with my main doctor who referred me to a practice that works with the hospital that I was told is the best.  I scheduled an appointment.  The receptionist, who was extremely helpful, told me that I would need to get special permission from my insurance company in order to see them as they are out of network.  I contacted my insurance company....I have no out of network benefits.

Ok....so let's find a doctor that works out of that hospital with the awesome reputation that takes my insurance.....Crap!  There are none....not a one out of the best hospital.

I call my neurologist office, Dr. Monck, and speak with an extremely helpful young lady there.  She refers me to a couple of doctors. I explain to her the best way that I possibly can.....My insurance isn't allowing me to go to the best doctor around.  This isn't like removing a mole.....we are talking about BRAIN SURGERY here!  (I was nice...but I definitely was in a panic when I spoke with her.) She quickly let me know that one of her good friends from high school had gone to see one of the doctors that she was referring me too and she is doing great.   She has a lot of patients that have gone to him and are all doing well.  In other words, she calmed the crazy lady down.

From that point, I did some research....what type of reviews are out there with this doctor(because only one of the 2 doctors were in network)?  Basically....the first doctor had received a 5 star rating out of 5 on healthgrades while the second doctor received 4 and a half.   Ok...that's not too bad.  So I call the office.

Keep in mind that I also have a background in medical & dental insurance and front offices.  I'm trying really hard to stay realistic and positive.  The fact is that at this point, I have hope.  Prior to this diagnosis, I had none.  I was doing the best I could to stay positive and deal with it but I didn't really expect that things were going to get better....what I expected is that I will get used to it.   Now, I have some hope.  It is possible that the fibromyalgia is my body's way of screaming at me that I have a brain tumor.  It's also possible that if they remove it, my fibro just may go away.  ....It also may not and I do acknowledge and respect that ....but there is hope.

So when I called to schedule the appointment with the neurosurgeon and the receptionist(I'm sure she is so much more but obviously I don't have her title.....just have to give a shout out because I've been there) tried to dissuade me from scheduling till after I see Dr. Monck.  I explained to her that we were looking for a possible tumor about a year and a half ago when my symptoms first emerged.  We didn't find it then but we did find it now and my symptoms have progressed.  I would rather schedule for a consultation even if it's just to meet with the doctor and get his opinion than wait and have to wait longer later.

The truth is that even if they decide to watch it.....there is always a chance that things will progress and they may have to quickly move to remove it.  I'd rather have a doctor who has seen me, spoken to me, knows who I am and I have chosen than wait for an emergency and end up with any Tom, Dick or Harry.

So she scheduled me for a few weeks from now. I go to see Dr. Monck tomorrow.

That's where I am at this point with regards to my tumor.  My friend who has known me the longest in my life and who truly is the best in the whole wide world asked me this morning if I have named my tumor yet.....I haven't ...but now I feel compelled to get to know it a little better to give it a good name.  Hopefully, my doctors can help me know more about it ;)  


Thursday, September 5, 2013

Amazement

I told the children 2 days ago.

They had been guessing what the family meeting was about for days but none of them had guessed brain tumor.

Truth of the matter is this:  I can see myself in my children so very much.  I sat them down. Immediately offered them milk shakes, which their response was to promptly asked me what's going on because it was obvious by then that it was bad news.

It amazes me that after I explained ,that it was a brain tumor and all that went along with that, my oldest son's response was to state" so what you're telling me is that there is a chance that the tumor has been causing your problems and if they take it out you would get better".  How many people can say that when faced with adversity their children find the positive within the situation? So at this point it appears as though everybody's ok. My son who is clinically depressed, is thinking positive!

I told my daughter is that I need to make a list. This list is to contain all the things that I want to do when I'm back to my self. Hiking, walking, swimming, traveling, I'd need to find a new career..... To which my daughter promptly said " don't get carried away. We can't get our hopes that just to be disappointed if it doesn't work". My daughter who suffers from anxiety, is being realistic!


A couple things have been different the last two days. My youngest son has called me a couple times. He asked to go to dinner. He asked to come on a trip with his sister. It seems as though my youngest son, who seems to avoid certain issues, wants to spend some extra time.

I am very proud of my children, words really don't express it. I try to stay positive. Through all of the difficult times that myself and my children have gone through, I refused to give up, to let things drag me or my children down. Which brings me to today, my children learned well!

August 30, 2013

The Big IF

I've decided to tell the children.  They are young adults at this point.  Reality is that I want to give them time to wrap their heads around the fact that I HAVE A BRAIN TUMOR....whoops sorry...that keeps happening but not as often as last week.  So as I said, I want to give them time to adjust and time to realize that everything is going to be ok. I'm working myself up to doing it though. Then IF....see it's a big if....IF the doctor wants to operate, at least they have had time to adjust to it and don't have it thrown right in their lap that oh...so btw, your mother has a brain tumor and is going in for brain surgery...Whew...That doesn't feel like the right thing to do ....Hence, I have to tell the children.  I've told 2 out of 3 that we need a family meeting.  We are having our Summer BBQ today while also celebrating my one son's birthday.  I don't want to tell them today.  I'm going to have to get them to figure out their schedules so that I can get all 3 of them in the same location again very soon.


On a similar note, I picked up my CT scan to bring to the neurologist.  While at the hospital, I asked where is known for their neurosurgery in the area.  This led me to the "Brain Tumor Center of NJ"(http://www.atlantichealth.org/neuroscience/our+services/services+by+condition/brain+tumors/) .  Sounds serious.  I"m going to call them on Monday and get an appointment with a neurosurgeon.  Figure why wait another 3 weeks after seeing the neurologist for an appointment when I know she's going to want me to go for an eval by a neurosurgeon.  Besides, even if they just watch it for now, God forbid something happens later, at least I will already have a doc to call.

Well, off to finish getting ready for our BBQ & shower.....hopefully, I can bend down far enough to shave my legs today...

Long Story Short

How do you tell the people you love that you have a brain tumor without setting them into panic mode?   I've spent the last week walking around thinking....I have a brain tumor...I have a brain tumor....I have a brain tumor.

I try to take everything in my life in little steps.  If you stare at the big picture too long, you get overwhelmed but if you break it down into pieces that you can manage....well, it tends to lessen the overwhelming desire to stand in the middle of Walmart screaming "I HAVE A BRAIN TUMOR"  

I have told a select few...My honey, my mother, my father & step-mom, one friend, two acquaintances and one stranger.  That's it so far.

Here's the long story short:  Research shows that when symptomatic it is recommended to remove the tumor.  The problem is that some of the symptoms are also symptoms related to fibromyalgia fibro fog..  So right now, I don't know if it's from the tumor or the fibro.  Next step, see a neurologist.  I'm scheduled in September and on the waiting list.

I spoke with a friend last night.  She called because she was having some issues that she wanted to talk through.  This is the friend that honestly, I've been resenting because she hasn't "been there" for me since I've been sick.  In the course of the discussion, she revealed something that made me very ashamed of my resentment. It's well known by those that know her that she suffers from anxiety.  She was telling me how the last few days (about 5) she has been overcome with anxiety.  In the course of the discussion, I was trying to help her to understand that we have to fight back by breaking things down into small things and that we also need to embrace the positive and happy things we have in our lives, that way it's easier to handle when something bad comes up.  Here is where she told me that there are certain people in her life that she couldn't handle if something happened to them.  She included me as one of those.  She was very clear that if something bad were to happen she literally would not be able to be there to help support any of these people because she would be a mess.  I never thought about how my fibro was affecting her.

I can't not tell my family. God forbid something happens suddenly(which is often the case with these types of things) and I haven't spoken to them first.  But how....How do I keep their anxiety at bay when I am havinng a tough time holding my own a little at this point. I'm staying positive  but I just keep thinking....


I ......have.......a.........brain..........tumor!  

Like I said when we found Roxie, my dog's, tumor.....keep saying the word...it takes the power away from it.  

I think we need a family meeting.  But holy shit.....how do I reassure them and make it not a big deal for them?

Let's not forget my honey....my mountain that believes that if we don't talk about things they will go away.  He knows......he hasn't really had much to say..  He's listened to me....but what could possibly be going through his mind.

One step at a time....call friends who can handle it....schedule family meeting....then tell friends who can't handle it....

Tuesday, August 20, 2013

The Day After......


An appointment is scheduled by permanent disability in relation to my fibromyalgia for the day after

I can not cancel it

I wake and shower

I put my soft collar on

It hurts

I take my soft collar off

Update my "Instant Me" on patientslikeme.com

I add colloid cyst to my list of diseases on my profile

Hmmmm....6 other people list this

Fibro=37,013 people

Tuck that info away till after your appointment

Honey please drive me

Fill this out

Are you depressed?

Have you ever been depressed?

Say these words

Spell this word backwards

Count forward

Skip these numbers

Say those words

Are you depressed?

Pick up cat food

Let's go home after this

Getting Sore

Forget daughter has to work

Rush back
Pain
Neck hurting
tired
lie on couch
call doc to inform
inform insurance
eat something
rest neck
doc's office says please call back with claim number asap to schedule
research
"Colloid cysts are non cancerous (benign) congenital brain tumors. These cysts can be problematic because of their location and size. The tumors usually become symptomatic in adult patients ages 20-50 years."  www.patientslikeme.com

Wait...What?  Does that say brain tumor?  But didn't that er doc specifically tell me that it's NOT a tumor? 

'A colloid cyst is a cyst containing gelatinous material in the brain. It is almost always found just posterior to the foramen of Monro in the anterior aspect of the third ventricle, originating from the roof of the ventricle. Because of its location, it can cause obstructive hydrocephalus and increased intracranial pressure. These cysts account for approximately 1% of all intracranial tumors"  Wikipedia  

There's that word again 

Tumor 
Brain
Brain tumor
1.% 
Rare 
1 in a million
Usually found accidentally....or post-mortem
What?
Don't panic
Breathe
Don't tell anyone till you speak with your doc
don't panic
time to sleep 
Sleep....please sleep.....
Fine...read a book
zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Thursday, August 15, 2013 






The Discovery

Xrays of the neck, the upper spine, the middle spine, the lower spine,
MRI's of the neck, the upper spine, the middle spine, the lower spine, the brain,
physical therapy including chiropractor, TENS unit & massage therapy,
nerve conduction test(yeah this benign test hurts like hell),
spinal specialists, neurologists, rheumatologist. ENT, pain management,
fighting through the pain at work,
being told straight out that it's all in my head,
pulling over to the side of the road crying because it just hurts too much to go one inch further.
fighting through the pain to keep working,
hands spasm,
peripheral neuropathy,
widespread pain throughout mostly my right side,
difficulty with balance,
difficulty standing,
legs hurting,
lower back hurting,
can't communicate properly(can think of what to say but the words won't come out properly),
giving wrong directions (saying left but meaning right and not even realizing it)
can't function well enough to work any longer,
home resting,
can think a little clearer but still have issues communicating at least once a day,
blessed that I have my honey to help me day to day
wish that he would not be so afraid to commit
medication,
pain,
rest,
Missing my old life of friends, karaoke, beverages,
load of dishes, a little laundry, time to nap, exhausted,
taking one step at a time,
adjusting to no longer having a choice as to whether I can work or not,
ex-husband still not paying what court ordered,
son tested for diabetes
dog has tumor on right shoulder
biopsy done on dog
doc's office tells son that he "most likely" has diabetes,
More blood work done
biopsy inconclusive, repeat biopsy,
son doesn't have diabetes! Yipeeeee!
Dog's tumor is nothing but a fatty tumor! Yipeeeeee!
honey's car needs work,
dog gets groomed (thank God she doesn't stink any more)
Drop off dog at home
heading to pick honey up,
sitting at a light waiting for the car 2 cars in front of me to make a left and............................


WHAM! The blonde bytch hits me from behind

Neck hurting more than usual
Ambulance takes me to hospital
Headache....bad...Like tears rolling down face involuntarily bad
too much ice tea....damn I have to pee
No dignity for the broken.....bedpan
Honey arrives right at that moment of course
Doc comes in and says...neck xray needed
waiting for xray.,,,,,,,
Wish I had known that that girl was going to hit me....I wouldn't have had that much ice tea
Bedpan time again
Nice young man takes me for x-ray
back to er cubby  #6 to wait for results
doc arrives and removes the neck brace since x-ray all clear
head still hurting pain level 8
Order CT scan
We wait.
Honey finds "Godfather 2"
time for my meds
watches the whole show
we wait
very nice man takes me for a ct scan
he made me feel as comfortable as you possibly can in a hospital
back to er room #6
wait
pain level is down to about level 6
wait
wait
starving
oh let's get Chinese
wait
wait
honey is getting cranky cuz hungry
go get some chips
wait
wait
wait
wow, it's getting late...I'm sure the results will be ok since the headache has subsided some
go to the bathroom....wow there are people out in the halls....
wait
wait
wait
doc comes in...immediately apologizes and then goes on .......................................










and tells me that the CT scan found something unrelated to the accident.......it's a colloid cyst and it is found in the area of the brain that produces cerebral spinal fluid.  It's usually benign .  I quickly tell the doctor that my brother had a brain tumor that was benign and he had to have surgery.  The doctor quickly tells me that this is a cyst not a tumor.  It's just good to follow up with your primary doctor because he will probably just want to watch it.  No worries.  So that being said, I'm going to get you a brace that I want you to wear unless it causes more pain.  The idea is to let the chin rest on the brace to rest the neck.  But if it hurts, don't wear it.  I'm going to get the brace, I'll be right back...you can get dressed.

And he's gone.........


Wednesday, August 14th, 2013 to be posted asap once more info known & as soon as I can let as many people as realistically I can reach.

PS   If I did not reach out to you, please understand that I can't get to everyone I would like to...It's just too much....but it doesn't mean that I don't wish that I had reached you.







Tuesday, June 18, 2013

A Brand New World

Hello dear reader,

It's been a roller coaster week with my pain.  Tonight is not the worst but it's close to it.  The weather in contributing in a very large way to the pain.  So I hope you will allow me to distract myself here.

I am heading into subject territory that is very dangerous.  I am taking my life into my hands by discussing these things here.  That being said, I will do my best to keep things as general as possible to protect the identity of my daughter.  Oh chit, the cat's out of the bag.  Well, she doesn't really pay attention to what I do anyway and thus will probably never stumble across my blog, let alone seek it out. Maybe I will be safe..LOL

Ok  Let's be serious:  She has a boyfriend.  The unique thing about this is that she met her bf through a video game.  Granted, nowadays, that's not so unique.  But....we didn't have the internet when we were growing up and atari sure as heck didn't link to other people in other houses so you could play together.  If you wanted to play together, you had to know one another, go over to one person's house and....wait for it.....Take Turns!    So now I sound old...Granted, I'm older.  All that being said, I am actually supporting my daughter.  I have made friends online.  I have lost online friends (as in they have died).  I have gone to an online friend's funeral and met online friends IRL(see I"m a little cool).  So I can't judge my daughter on the fact that she is doing what comes natural to her generation.

I am still her mother though and my responsibility is to keep her safe.  So we are going to meet this young man IRL and I have made it clear that the rules are very simple.  Stay close enough to me that if you need to scream, I can hear you.   I don't need to be "up their butts" but I have a responsibility to be sure that the nice young man that she has gotten to know, doesn't suddenly turn into that serial killer we have all read about.  

In today's world, boy meets girl through video game. Boy & girl talk all the time, not through the phone, but through "facetime"(in case you aren't as hip as I...that's a video chat).  Boy hangs out with girl all the time this way...except of course when they are playing a video game together and then they chat through the headset while watching each other's back as they kill off other gamers.  At some point though, there has to be a meeting IRL.  They just can't stay that way forever.   With every change in the world, there is good and there is bad.

I think the internet and all it's glory has opened the door for many shy young people to make friends and warm up to them long before they ever have to actually have a face to face conversation....and then even longer before having an IRL "date".  Obviously, it has also opened the door for people to misrepresent themselves.  Sometimes, simply that they aren't the 6'4" football player.  Other times that they are really dangerous & evil.

The fact is that those dangerous & evil people were around long before the internet and meeting people exclusively IRL doesn't keep you safe either.  My ex never needed the internet to be dangerous & evil.

 So I will do everything in my power to keep my daughter safe (even if she is embarrassed that she has to stay in the same restaurant as I) while giving her as many choices in her own life as possible.  I have to trust my daughter's judgement while protecting her.You usually know that you are handling a situation with a teenager the right way when no one is happy.  She would love to go off on her own & I would love to sit at the same table as her.  I think the "within screaming distance" rule is a good compromise.  I have to accept that it is a brand new world and do my best to adjust to it.  I also have to accept that my little girl is growing up.   I think I'm doing pretty well for an old chick ;)