Monday, May 6, 2013

if you are wondering why the word cancer stikes fear into the hearts of man

I'm still in Utah. 

After a very frustrating final call to the insurance company this morning, it was clear we would not have approval today in time for my flight.  Nor would we likely have it until the end of the week.

And now let me vent.  I called my insurance company right after my appointment with Dr. Weber, before I even left the Moffitt cancer center.  I told them I was accepted into the trial, that we needed to start the approval process.  I talked to the insurance man at Moffitt.  The Moffitt people were very reasonable and kind.  The trial will pay for the drug, and the insurance picks up the doctor visits, infusion room, and lab work.  Moffitt was willing to charge network prices, even though they are out of our network.

The people at my company said they would get things going, and although the process usually takes 14 days, it could be expidited.  Good.  I set up an appointment to come back to Moffitt 14 days later.  The insurance company said they would get back to me with an answer.

I had my doubts.  I had tried to work something out with them before my first visit and they were ridiculous.  So, I started bugging them, trying to find out where we were in the process.  I left message after message.  I finally got to the the advocate doing my case last Monday.  "The process is started, it has been submitted to the committee."  "Okay, perfect.  So I am supposed to get on a plane in a week, will we know by then?"  "We should have an answer by then, yes." 

Still.  I kept calling.  I kept leaving messages.  My call was finally returned on Friday afternoon, three days before I was supposed to leave.  Guess what?  I had just broken my phone.  I tried to call her back an hour later.  Voice mail.  I got very nervous.

We moved on Saturday.  Said goodbye on Sunday.

Monday I woke up and called my 'advocate'.  "I was going to call you, I just didn't want to wake you up."  Wake me up??!!  "Sorry about all the messages.  I really need to know what is going on, my plane leaves this afternoon."  " has been really hard with the time difference with Moffitt and playing phone tag and all that, to get all the information we need."  "Tell me about it."  I said knowingly.  "But we are finally ready, and the committee will be looking at it and we should know in 14 days."  Insert a long and tearful explanation of what I was told was happening, and wondering how this could possibly be happening.  "Do you want to talk to the department that does the approval?"  Yes, yes.  I want to talk to someone, anyone!! So I get that department, who tells me that they just received my information, but are missing all my documents to prove that I need to go out of state.  In short, they didn't even have the information they needed to make a decision.  I knew then that I would not be boarding my plane this afternoon.  She said the information they needed was never ordered.  That whoever was handeling my case had dropped the ball.

I asked what would have happened if I had not called them today.  "I don't know.  There were no orders, so I don't know."  Wow.  Glad I've been calling everyday and everyone says we are in the process, and we will have answers soon. 

I am still having a hard time believing this.

But let me tell you why I did not break.  First of all, I remember that this company did pay $350,000 in 2012 to keep me alive.  Yes we have a high deductible every year (met it every January since 2008 with scans alone), and pay monthly, but nothing compared to that.  They have been perfect up until now. 

And second, I have for a sometime had some pain in my right side, under my rib cage.  This last week it has escalated.  I have 2 pretty big tumors right there, and have been radiated in that very spot.  But I have worred it is a gallbladder issue.   One morning I couldn't get out of bed.  But by the afternoon I was up and okay.  A couple days I have taken a tylenol to get me through the day.

This weekend it got bad.  But I had to move.  I had to pack up.  I had to clean.  I had to say goodbye to the very best neighborhood that could possibly exist.  I had to do it all in pain.  Pain is so consuming.  I could not get excited about anything.  Not the new house, not the drug I was about to take that was going to save my life, not even my children's little witticisms. 

This morning, at 4 am I woke up in pain.  The kind you can't stand.  I had Josh get me a pain pill.  And 20 minutes later I felt good for the first time in a few days, my side felt like the rest of my body.  Wow. 

And so, I will see my doctor tomorrow about this pain.  It could be the cancer.  I would be very sad in that case.  With all the cancer I've had, I haven't had to take anything for pain yet.  Could be the gallbladder which if they can remove it on Wed. I would still qualify for the trial in Florida (they rescheduled my appointment to start 2 weeks from now).  You have to be 2 weeks out of surgery before you can start. 

This is confusing, sorry.

Basically, I am hoping for the following:  that this mess up all happened for a reason, that a simple surgery will get rid of this pain, that I will still qualify for the trial in 2 weeks (guess what? We have to repeat brain MRI since they will be over 28 days old in 2 weeks), that the insurance company will help pay for this (even if it does get approved I pay for the first $8,000), and that I somehow cope. 

I have so many wonderful things to write about.  This business has, unfortunately, pushed all the good aside for now.  I am sorry to admit it. 


  1. I am SO sorry! We have been praying that things will work out with your insurance and will continue to do so.

  2. Horrible story, Alisa. I'm praying for this to work out well.

  3. You are amazing, who would ever know you were in pain. I hope this turns out to be a story like Steven's and the broken leg. We would all pitch in for ANYTHING! the insurance won't pay.

  4. Dang it. Dang it dang it. The only thing I can say is that I'm relieved the doctor will be looking deeper into this gallbladder situation. That has been worrying me. I am so sorry for your pain and your frustration. I bet you could use done chocolate. I'll be in your neighborhood tomorrow.

  5. I always wonder why things can't just go smoothly when you're already dealing with something difficult. I hope things iron out for the best, as I'm sure they will. I'm still wanting to come see your new house, but I don't want to disturb if it's too stressful.

    Love you Alisa.

  6. Oh, that sounds so frustrating. Hope you are settling in to your new house okay amidst the mess.
    Miss you already. Hate driving by.