Friday, November 20, 2009

Good news!

All right, you all can stop your anxious nail-biting/smoking/hair twirling/feet tapping!
  
The MRI results are in.  And I'm not one for suspense when it comes to medical results either.  So here goes.  The doctor says that everything looks fine.  The medical terminology he used was, "stable".  He said that at this point, taking a "watch and wait" mentality with the tumor is acceptable based on the conditions he saw in the MRI.  Therefore, we are now watching...and waiting.  The next MRI is scheduled for March for continued monitoring.  Like I said in my last blog post, the first year after surgery is crucial in determining the future path to treatment.  If the tumor continues to be "stable", then we will ease up on the number of MRIs and follow-up visits.  If the tumor grows, then treatment will be required with frequent monitoring.


Anyway, we are so blessed to have this good news and appreciate all the prayers and good vibes that were sent our way!  Appropriately, we are having an early Thanksgiving dinner tonight with my grandparents.  I think we all have a lot to be thankful for this year.  Pictures to come soon.  :o)

Thursday, November 19, 2009

MRI tomorrow!

I have my first post-surgery MRI tomorrow!  I'm feeling a little anxious about the whole thing.  The first year after surgery is really the most significant when it comes to monitoring a brain tumor.  If all is well in the first year, then we can lighten up the monitoring in the years to come.  If all is not well in the first year, then we know that we have a long hard road ahead of us.

I don't mind the actual MRI process too much.  The worst part is being injected with a dye.  My experience with this in the past has not been the best.  They'll miss the mark and have to stick me numerous times.  Ouch.  I have been lucky with some needle-angels though.  I tell them about my tiny, wiggly veins and they take their time and take it as a personal challenge to find it on the first try.  Some MRI locations will ask you your favorite music selections and will play the music in the room while you are in the MRI tube.  I've been scanned in a different location every time I've had one done, so I'm not sure what to expect tomorrow.

I appreciate all the prayers and good vibes I've been getting.  I will make it a priority to post the results here on the blog tomorrow when we return from the hospital.  Let's hope it's a good one!  Gooooo (away) tumor!

Monday, November 16, 2009

A little extra




So, the other day I realized my blog was severely lacking something.  Pictures!  What good is a blog if you can't look at pictures?  I mean.  Don't get me wrong.  I think that what I have to say is important.  But it is not quite so interesting to you, the reader, unless you have a visual to accompany it, right?  So today I'm posting pictures of the cuties in my life.  They are my inspiration, therefore, they get top priority when it comes to getting pictures posted on the blog.

  

Anyway.  In the future, I hope to post more pictures to keep the crowds coming to the blog.  I foresee myself posting more pics of the kids for sure.  Adam suggested posting pictures of some of the new foods we are cooking up that are high in super foods and low in refined sugars (see pumpkin pancakes above).  Maybe I'll post pictures of my brain or pictures from when I was in the hospital?  We'll see.  I'll also be willing to take special requests.  Hope everyone is having a great Monday!

Wednesday, November 11, 2009

Gotta have faith, Part 2

In this two part series, I'm addressing how my faith has influenced my thoughts and actions over the past few months.  In part 1, I talked about how my faith has influenced my actions.  In part 2, I plan to cover the influence on my thoughts.  That sounds a lot more formal than I intend it to be, but I want to make sure I stay focused on the question!

First, my faith has influenced my thoughts by providing me with a source of comfort.  It's comforting to have faith in a higher being to pray to for help and guidance.  Also, I believe that everything happens for a reason.  I have noticed that every time something that I perceive to be bad happens, it always turns out to be for the better.  Or it turns out to be some sort of test of my strength or character.  For example...I was not hired when I applied to my first job out of college.  I was pretty disappointed about it.  But the woman doing the hiring pointed me to another job and I got it!

The point is, that this belief in fate helps me stay positive about my situation (and all situations).  Clearly, I have a brain tumor.  Now, I can either sit and cry about it and feel cursed and angry.  Or, I can learn from this experience and teach my children how to respond positively in adversity.  At the end of the day, I'm still going to have a brain tumor.  In Islam, we believe that we as humans don't have control over what happens to us (natural disaster, disease, etc.).  We believe that what we do have control over is how we respond to what happens to us.  For my part, I'm trying to think positive, productive thoughts and educate myself as much as possible about cancer and treatment.

Well, I'd like to conclude with some news.  Two weeks ago, I had an EEG.  Lots of fun.  Had electrodes all over my head and got to relax while bright lights were flashing at me.  I got the results back yesterday and everything is normal.

Monday, November 9, 2009

Gotta have faith, Part 1

One of my readers queried how my faith has influenced my thoughts and actions during the last few months.  Well, this certainly got my cogs a turnin'.  I began to think that others may be interested in reading about this too, so I decided to write about it in my blog.  Today, I'll address how my faith has influenced my actions.

For those of you who aren't aware, my family is Muslim.  However, this does not remove us from any of the issues that a person of any other religion might go through.  The same questions went through my head that would go through anybody else's head, "why me?" or, "why now?".  In my faith, prayer is exceptionally important.  In the last few months, I've found myself praying more frequently than before; which to me, is a no brainer (pun intended).  People certainly pray more when they are going through difficult times.  What I have found though, is that my prayer is more meaningful and focused.

How else has my faith influenced my actions?  I would say that I am trying to spend more time with my family.  Although I spent a lot of time with family before I found out about the tumor, I feel that nothing could be more important now than doing things with and for my family (and friends).  Adam and I have even decided to move closer to family and friends in Ohio in the next calendar year in order to fulfill this act of faith.  As in most religions, an important tenet is to take care of family and those you love.  Therefore, we are making a move to ensure this happens.

Finally, faith has impacted how I take care of my body in the past few months.  We have been working out, eating healthier, and thinking positively in order to take care of our bodies.  In Islam, it is important to have a healthy body in order to worship (praying, fasting, and attending services all require a healthy body).  These have all been great moves for the whole family because we're all feeling better and actually feeling like we are doing something to better our situation.

Sometimes we feel so powerless when tragedy hits us.  But then we look around and see the tools we are given (ability to pray, ability to move to be near supportive family, ability to change old habits) to make things better and we realize that we actually are empowered--we just have to find and use what we are given.

Alright, next post will be about how my faith has influenced my thoughts in the past few months.  Hope you'll be able to make it!  :)

Friday, November 6, 2009

Reform

I've been getting questions about the insurance and I want to tell you the story of how a family can very quickly get into an insurance mess.  By the way, insurance is very messy and sticky, no matter how you look at it.  Just when you think everything is fine, the rug gets pulled up from under your feet.

Our insurance thought process over the last 18 months...

May, '08: I'll quit my job, stay at home with my daughter and work part time or work full time somewhere with better pay to afford day-care.
June, '08: Hooray!  A part time job that provides insurance and allows me to stay at home with Lilla.  All we have to do is pay $80 per person per month!  Great!  Lil and I are covered for only $160/month.
August, '08:  We'd like our children to be close in age.  Maybe we should have another one.  Let's call the insurance and see what they think.  I call my insurance, they say they cover pregnancy 80/20 (we pay 20%, they pay 80%).  This is the same deal we had under my full time job insurance coverage!  Awesome.
January, '09: Suddenly, we begin receiving notices from Aetna that our pregnancy bills are not covered.  We talk to ObGyn office.  We call Aetna.  We call ObGyn office.  We call Aetna.  And so on.  Apparently, we are not covered at 80/20.  This came as a surprise to us and our ObGyn office who was also told by the insurance company that we are covered 80/20.
January 31, '09:  We all get food poisoning.  Will this hurt the baby?  I call my doctor's office.  They tell me to go to the hospital because it might be early delivery.  We go to hospital, have tests run, and 5 hours later go home with an a-okay from the doctor.
February, '09:  We get a bill from the hospital.  It's $3000 and the insurance will pay nothing.  I call insurance company demanding an explanation.  They blame the hospital for not billing it correctly.  I call the hospital, they say insurance refuses to pay.  I call Aetna....you get the point.
February, '09:  At this point my pregnancy hormones are in FULL force.  I have to protect my family somehow.  I start looking into Medicaid because we can't pay for the recent hospital bill and a delivery out of pocket.  As it turns out, we are eligible for Medicaid.  I drop Aetna immediately.  Why pay $160/month if they aren't covering anything?  The children and I are now on Medicaid, which covers our unpaid hospital bill and our future pregnancy related bills.  I'm humiliated that we have to go this route, but relieved.
June, '09: Baby is born.  He is admitted to the NICU for breathing problems.  Thankfully, Medicaid covers the whole experience.  My Medicaid coverage ends 60 days after his birth.  We're feeling pretty good because what else would I need coverage for?  I'm healthy.  I'm young.  I'll wait to get insurance in August...or whenever we can pay for it.
June, '09:  Two weeks after delivery we discover the brain tumor.  Surgery is scheduled.  State of panic sets in.
September 1, '09:  Medicaid coverage ends.  We decide to sign me up under hubby's health insurance (Blue Cross).  They say that as long as I have no breaks in coverage, they will cover my brain tumor related bills.
October, '09:  Blue Cross says I'm not eligible for brain tumor related coverage because they have no proof that I was insured.  Adam fights the entire month of October (making phone calls, leaving messages, faxing evidence, emailing, etc.) to rectify this.
November, '09: I am finally fully covered under Blue Cross for just a "measly" $670/month.  And then we pay 20%.  And deductibles.  Which, did you know there are numerous deductibles under one plan?

As a back up plan, I also signed up for non-pregnancy related Medicaid--just in case Blue Cross would not cover me.  Medicaid is now my secondary form of insurance.

I cannot believe how incredibly blessed we have been.  Shhhh!  Don't tell the hospital--we have not seen one single bill from my surgery or any of the doctor appointments involving it.   We believe that Medicaid is covering it all from when I was covered with my pregnancy.  Thank God.

And now I pose a question to you, do we need health care reform in this country?

Wednesday, November 4, 2009

and it's only Wednesday!

It's been a rough week ( I know!  It's only Wednesday!).  I just feel myself getting very impatient and frustrated with tiny day-to-day things.  For example, just looking at my pile of laundry gets my blood pressure up.  Or the dishes, vacuuming, mopping, errands, etc.  Ay yi yi!

So, in an effort to maintain sanity around here, my dear hubby stayed home from work today to help me out and take care of me and my brain (and the kids too).  I am so grateful for his help and willingness to take care of us.  I don't even want to imagine what it would be like without him here.

Anyway, we finally worked out our insurance situation so I scheduled my first post-surgery MRI.  It will be on the morning of November 20th.  I'm looking forward to the MRI because I feel like we'll have some answers once it's done.  Also, we will be getting the results immediately after the MRI is complete, so no waiting around either.  It will be nice to have it behind us with either a positive ("see ya in 3 months for your next MRI") or negative ("we should begin radiation immediately") response because with so many unknowns, it's helpful to have at least one solid known.

I'll keep you all posted on how the MRI goes and the insurance hoops we have to jump through in regard to that.  Did you know that going to the hospital for an MRI is more expensive than going to a freestanding radiology office?  Therefore, I have to go to this freestanding place, then go to the hospital to have my results read.

Well nap time is almost up, so adios for now!  :)

Tuesday, November 3, 2009

Welcome to my blog!

Allow me to introduce myself.  I am a 27 year old mother of two children, a girl and a boy.  My husband and I are committed to a life of service to others.  We both participated in Americorps for 2 years.  I also participated in Teach for America after serving in Americorps.  Now I stay at home with our children while he teaches at the local high school.

Shortly after the birth of my son, I had a tonic-clonic seizure for the first time in my life.  While the experience was frightening, it was nothing compared to the news we would receive at the hospital.  After numerous scans and tests were run on me, a "mass" was discovered on my brain.  Further MRI testing found it to be a brain tumor.  I was immediately scheduled for surgery to remove the tumor.

The week I spent in the hospital for my surgery was the longest week of my life.  I was operated on twice and constantly in an out of consciousness.  My wonderful, supportive family visited frequently to make the time pass, however, it was seemingly never ending.

Now I am home, unable to drive, and tired from taking care of two active children and recovering from surgery/childbirth.  I decided to start this blog to give myself something to do, share our activities with friends and family, and to educate others about our experience with having a brain tumor, treatment, insurance, etc.  I've also been having trouble with recalling recent events in my memory.  I'm hoping that "writing" it down will help my memory improve.

Thanks for visiting and hope you stop by again soon!  My goal is to update as frequently as possible.

-Ayisha