Sunday, May 26, 2013

sick and grateful

I have been sick this week.  It's been hard to determine if it's the cancer, the pain pills, or the PD-1 infusion.  Not liking the pain pill side-effects.  Sure not liking the pain.  But strangly loving the things I know for sure are from PD-1.  Like the flu-like symptoms, and especially the severe chills I get in the middle of the night.  I wake Josh up to witness those.  Because that my friends, is an immune response.

I am almost sure that my little tumor in the armpit, that I first felt a couple of months ago, is on it's way out.  The large one?  May be loosening up.  With IPI it took 5 days to notice tumor shrinkage, I think this is even faster.  No major side effects yet.

Wish I had more energy to write about all the things that are filling my mind.  I have spent enough time in bed to get something accomplished in here...  They say the fatigue usually lasts only a few days after the infusion, so let's hope for that.  And for a complete and miraculous response.  :)

Thanks for all the prayers and kind words.  God has been so very good to us.

Monday, May 20, 2013

on my way

Brain MRI looks good. Insurance company is being reasonable.  Plane leaves in 30 minutes.  This is finally happening!!

Sunday, May 19, 2013

may 19th

Not in a writing sort of mood.  But I know you are wondering about this week.  The insurance company finally responded Friday, and I will be starting the medicine this Wed. (assuming I pass my brain MRI tomorrow, I will fly out for testing on Tuesday).  They (back to the insurance company) did not give me the answer I wanted, so I will continue to battle it out.  But it is sucking all my strength to wait for phone calls, to be on hold, to leave messages, to try and explain the situation to dozens of people.  To hope.

I do not mean to complain about the money.  We don't need a bake sale (yet).  We have budgeted $8,000, and although the insurance is asking me to pay more, we also have more.  We just don't want to spend it on hospitals if we don't have to (we have other bills and dreams believe it or not).  If we shouldn't have to (which is my opinion). 

Today I have been on pain pills all day for the first time.  It is only the second time I've needed them during the day. 

Today is also our 13th anniversary.  I cry when I think about it.  All the loveliness and now all the ugly things we have had to deal with.  Josh is the most amazing person in the world.  I have a hard time not feeling like I've ruined his life, but he says 'no question' he would have married me even if he would have know.  I really wonder if I would have married him, I don't know if I could choose to break someone's heart. 

I guess it's a good thing we can't see into the future.

Sunday, May 12, 2013

mother's day

I have given three wonderful children life, but I can't shake the feeling that in some strange ways, they have given me mine.

I am alive, in part (or mostly), because of these three reasons to live.  They are the part of me I won't give up on.  There have been many days I thought I could not go on.  But they come out of their rooms in the sunny mornings, their bodies still warm and a little limp, open up my blanket, and curl up right beside me.  Big eyes staring at the ceiling wondering what the day will bring.

There was this day last year, some serious fight stirring in me.  I will need that magic again this week in a battle I didn't think I would have to fight.  It's me against the insurance company.  It's a long story, but basically 'the board' denied coverage for the trial.  My mind was very clear as she read off the reasons why they made that decision, and when she was finished I debated every point with perfect logic.  I just wish I could have said it with power!  My voice was shamefully quivering.  I was on the brink of sobbing my face off.

She said "Yes, I see what you're saying.  Let me call you back."  She took it directly to the head MD and called back an hour later.  They are gathering information and will get back to me.  They will pay for some at least, she assured me.

They better, I don't know who would want to deal with this angry mother.  One who has researched this cancer, her options, and this drug in her spare time.  One who for the first time had to take a pain pill during the day today.  One who knows there are drugs out there that help her. One who has tasted victory and will not accept defeat.  One who would do anything for those boys who call her mother.

Bring on your best.  There is no match for this. 

Tuesday, May 7, 2013

the first stage of grief

Well folks, turns out I was in complete denial.  The pain is tumor related.   Some of the symptoms don't match gallbladder disease.  One of those is the pain I'm getting lifting my right leg when I put a sock or shoe on.  There is a tumor right by the muscle that makes that motion.  Another clue is that the pain is not at all affected by what I eat.  I have been putting this to the test, eating some pretty greasy, gross dinners to see if it would make things worse.  It never did, I just got fatter.  Also just the location of tenderness is pretty much right by the tumors.  The gallbladder looks fine on the CT scan.

I was so amused that I hadn't seriously considered it.  It was gallbladder to me 100%.  "Cancer....hurts?"  I ask in disbelief. 

I came home with some pain med prescriptions.  Hopefully only for occasional use.  

And tomorrow I could have started my dream drug!  Wow.  I guess I can wait 2 weeks.  Right?

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.