Let Countdown #2 Being!

Today I had the big appointment with my oncologist (Dr. Wagner) and neurological surgeon (Dr. O) on whether I would be done with my chemo.  I was very happy to find out from my last MRI at the meeting that there was no sign of tumor regrowth; the new MRI looked almost exactly the same as my first MRI a few weeks ago.  Since there was no change, it was looking good, until Dr. Wagner brought up the fact that the name given to my tumor (anaplastic astrocytoma) implies that it is very aggressive tumor.  My math lesson today in the doctor's office today was that anaplastic = treat as much as you can or you are in trouble.  The fact that mine is in the anaplastic category of names typically means that thing would go from bad to worse, but my tumor still also has it James Dean characteristics by growing slowly and being non-aggressive.

Either way, the doctors decided that it would be best to play it safe and continue my chemo for another six months, just as they would for an aggressive tumor.  The only annoying reason they had for continuing my chemotherapy was that my body dealt with my previous chemo rounds much better than expected, so going six more months would not be as taxing on me as with "normal" people.   Clearly chemo drugs and I have a love-hate relationship, with me doing most of the hating.

I'll be starting my first new round of chemo next week.  I can now kiss my slowly reoccurring pallet of food good-bye, and get used to only eating when stomach isn't rolling.  The one good thing about this?  I won't be on a round of chemo when I am running 6th grade camp, and going to 8th grade graduation since I will be done with this round February next year.  I also know what to expect this time around instead of having to view each chemo dose as a new experiment to see what will happen.  Good-bye blueberries, chocolate, and being normal; Oddball Chemo Land here I come!  

MRI techs trained by Willy Wonka

All I can say is "YEAH!!"  Apparently the MRI techs do need some help, because I found out today at the meeting with my oncologist that there was no "smudge" on this most recent MRI.  The last MRI that they did before this one that had the "smudge" was not a tumor at all, just not the best work from the MRI techs.  As of right now I am off of my chemo drugs, and plan on being able to enjoy eating normally for awhile. 

Since I have had one MRI that showed a tumor, and one MRI that has not, I will be having another MRI in four weeks; just to be on the safe side.  If it shows anything that is hinting at the return of my James Dean tumor, then I'll be on chemo for another six months.  If there is still no evidence of a tumor, I'll be chemo free, hopefully for a VERY long time.  I'll then have another MRI done towards the start of December to see how my brain is looking about a year after the original brain surgery.  It is a bit crazy to think that I had major brain surgery to remove a good portion of my left lobe less than a year ago.  The right lobe of my brain is going to think that it is on vacation pretty soon.

I am very happy to say that it does not look like I'll be turning into a oompa-loompa anytime soon, either mentally or physically.  Kind of wish that I was though . . . then I might start liking chocolate again. 

Never throught I would be happy to find out that MRI techs have problems

Sorry it has been so long, I've actually been busy.  In the last couple months my husband and I have created a raised flower bed around a funky mound of dumped dirt left by the last owner, installed a hardwood floor inside the house, and repainting of a good portion of the inside walls. The summer has been great, but within the last week things have started to become a bit crazier than normal.

 First of all, I have been lucky enough to have some more fun with my new pharmacy insurance carrier.  A couple days ago I went to pick up my prescription for one of my anti-seizure drugs from the pharmacy.  I had already let them know that the section of my insurance that involved prescriptions had changed in an attempt to make things easier for everyone.  That did not quite work.  I arrived to pick up my one month supply of one prescription, and was given a bill of $658.40.  What in the world!!?  Before this I paid $10 a month.  Grrr.  This prompted me to sit down on the bench in front of the pharmacy and take out my cell phone.  I was on the warpath this time, trying to forge a mental alliance in attitude that was a combination of Beowulf and Two-Face.  The last time I called to deal with them not covering my chemo drugs was an adventure of being transferred to multiple useless numbers that became a game of phone-tag that I did not enjoy.  This time it only took 15 minutes to solve the problem; all I had to say was, "If this continues to be a problem then I am going to need to hire some help to solve this."  Translation:  I'll hire a lawyer.  It really is amazing how fast things are solved then.  They called me back later in the day to let me know that they were not covering the anti-seizure drug originally because they misspelled the name of the prescription when they put it into the computer.  Apparently spelling "Keppra" is very complicated. 

The next big event that occurred was earlier today.  I went in for a MRI early this morning.  It seemed almost like a celebratory event at the time, since my last dose of chemo (knock on wood) was yesterday.  The MRI went quickly, and then I headed over to see Dr. O (my neurological surgeon) a couple hours later.  I passed my neurological testing with Dr. O with flying colors.  I am happy to say that all of my fingers and toes still work, my vision has improved, and my balance is a boatload better.  Then Dr. O showed me my recently done MRI and the results.  On the MRI there is a small "smudge" where my tumor was growing before surgery.  This is where the news goes downhill.  This smudge is either the start of the regrowth of my tumor, a bad MRI, or both.  I was sent off to get another MRI as soon as my appointment with Dr. O ended.  I have another appointment Wednesday to go over the new MRI results.

If it is a recurrence of the tumor, the first thing they are going to do is to have me resume my chemo drugs, and possibly radiation, for at least two more years. If the doctors cannot decide if it is a tumor or not, then I will be on a low dose of chemo drugs for the rest of my life.  If the smudge completely disappears and it becomes clear that my tumor is gone, then I will be off my chemo drugs, but will be doing a MRI every six months for awhile to make sure things are going well.  That is a lot of "ifs"!

Until Wednesday I'll just have to sit around and try not to go too crazy waiting.  As long as I don't hit the crazy status of a oopma-loompa I should be good.  But then again, they do have that green hair that I wanted . . .

Health Insurance = Evil Incarnate

Up until today, my health insurance has been a lot better than expected with all the shenanigans that my brain has decided to pull.  But with the change of the pharmacy section of my health insurance things got more than a little crazy . . . more on the insane side of the spectrum.

1.  I get a call from Diplomat Pharmacy (there is some irony in that company title) asking if I was ready to make my next order of chemo drugs.  I was expecting this call from Diplomat, since CVS Pharmacy was not part of the additions to my insurance.  I made the crazy assumption that I would pay the normal amount, $100 for my one week of treatment next month.  Well, I about died mid-step when the guy on the other end of the line asked how I would prefer to pay the $4,450 bill; with credit card, check, or online.  AHHH!!  He said I was getting a discount from a "discount card" (???), that seemed to be 0% in my eyes.

2.  I am now in shock.  After asking him if he was sure, I passed the phone off to my husband.  After Rock talked to him for a couple minutes, the Diplomat guy told us to call our new pharmacy program, URx.  While he is calling, I am searching on the computer in my new URx account trying to get a quote on my chemo drugs from there.  The only difference online was that they gave me a "10% discount" because of my "discount card".  Hate to tell them, but even a 50% discount from an imaginary card would not suit me well. 

3.  After sitting on hold for a bit, Rock talked to someone at URx.  They said to call MUST (my regular health insurance).  They were apparently the only people that could help.  He called them.  They closed 30 minutes earlier.

Next day . . . 

4.  I call up MUST.  They then transfer me to someone else in charge of my region to solve the problem.  She tells me that she will "call back in a couple minutes" with a response.  An hour and a half later, and there is still no call back.  Rock calls this time, only to find out that the woman I talked to is off for an hour long lunch.  Grrrr.  He left a very good angry sounding message.

5.  Wait.    And wait.     And wait.

6.  A couple hours later, I get a call from Diplomat asking if I was ready to fill my prescription.  I asked how much the co-pay was (expecting my heart to stop again when I heard $4,450), and she said $200!  I started dancing in the hallway, and happily paid.  Don't get me wrong, $200 is still twice as much as before, but it is a heck of a lot less than $4,450 for a five day supply of chemo drugs.  

That has been the drama of the last two days.  Health insurance can be a wonderful thing, but it can also be evil and cut a couple years off my already brain-tumor stressed life.  Thank you, and good night.

I'll Never Beat my Cat When it Comes to Hair Volume

I figure since I have not written anything since the end of the school year, that it is time for a update.

First order of business, I had another MRI last week.  The doc who did the MRI didn't pull me into his office afterwards, so I am guessing that all is good.  I'll be seeing Dr. Wagner next week, so I'll bug him for a copy of my MRI write-up then.  This MRI I did for Dr. Wagner is also serving a dual purpose as a MRI for Dr. O.  He will be looking over the MRI himself as well, then let me know the results more specifically when I meet with him in two weeks.  I've asked, and if the MRI is still looking as good as my blood work has been, then my three doctors might make a decision early about any future treatment with my (hopefully now non-existent) James Dean tumor.  I know without a doubt that they will have me finish my next two months of chemo, but I might know what is happening after those last two months in just a couple weeks.  I'm going to cross my fingers and toes on this one.

Second thing of importance, my hair is continuing to return.  The sides of my head right now look like two-face from Batman.  These two pictures were taken yesterday, each showing one side of my head:

Left side

Right side

The hair on my right side that received a lower amount of radiation is growing back really well, but the left side where I got my mega-doses is a bit slower to respond.  Believe it or not, there actually is hair growing in all the spots on my left side that look blank, they are just so light it is easier to feel them then see them.  The good news for all of this funky hair?  I now have more hair on my head than my husband.  The bad news?  He still has more on his back.

Alice Cooper . . . Crazy, But Perfect

The last week has been a bit crazy.  The main reason?  I started another round of chemotherapy.  When did I start it?  Tuesday afternoon, the day before 8th grade graduation for the students at Marion School.  I am very happy to say that I made it through the entire graduation without feeling the need to lose my lunch or crying (only tearing up), seeing some of the students that I have taught for three years in science leave and head off to high school.

I am not ashamed to say that I crashed that night.  I literally slept in the dress I wore to graduation for awhile, before my eyes sealed up by dried up contacts woke me up.  The next day I went back to work, the last full day of the school year.  Unfortunately this time I went back with a cold.  Ugh. 

The last time I had a cold, it was not during one of the weeks that I was undergoing chemo; this time it was.  As a result, instead of getting better, I got worse.  A lot worse.  I left school that day practically the same time as the kids I was so wiped out.  The one positive thing about this is that after talking to Dr. Wagner, he decided to take me off this week of chemo a couple days early so that my body could actually fight off the virus more effectively.  Sure enough, two days later, except for a drippy nose I am now feeling back to normal.  

I also have had another set of blood work done (the same day as 8th grade graduation; needless to say, that was one crazy day).  They have been drawing and checking my blood work every two weeks, and it always came back really good.  Almost like I was a normal person not undergoing chemo; but all three doctors agreed (the world must be ending soon if three doctors agree on something) that my results must be contaminated or inaccurate if I was continuing to get those abnormally good results.  Their solution was to test me more . . . five drawings of blood in one sitting instead of one, from locations other than my arm, and doing the two tests my blood normally goes through ten times instead of two times.  The results were still good enough that one of the nurses who drew the blood told me I should join Marvel Comics as the next superhero.  I'm afraid that I do not feel like only wearing spandex and a cape, so I will stick with teaching as my career.  On second thought, I wonder if tight fitting black clothing is as flattering as a good black dress . . . 

Hair vs. Lawn . . . Least I Won't Have to Spray Weed Killer on it

Today is a blog post of happiness.  First of all, my hives are gone!  Within 24 hours of taking me off the different version of Keppra, my hives had decreased by about half.  I am now very happily itch free.  Over the last six months I've had more allergic reactions then I think I have had my whole life.

Second piece of happy news is that my hair is coming back very wholeheartedly.  Now that a bit of time has passed, my hair seems to be coming back in darker, but when the Sun hits it, it has a bit of red-tinge to it.  I'm very intrigued to see what it will look like in the end.  Here is a picture of me trying to raise both eyebrows while Rock manage to catch me off-guard:

The hair is now back on about 90% of my head.  With any luck, by the end of the summer it will be back to 100% and will have grown longer than the hair that the balding man in every neighborhood has.  

The last piece of happiness is that I caught my first cold since I had my tumor-removal surgery/radiation/on-going chemo treatments back in November 2012.  This may seem like a bad thing, but it is actually really good.  I managed to fight it off!  I had a sore throat and fever on Friday, which turned into a clogged up nose and cough on Saturday.  By today (Sunday), I almost feel back to normal!  Now it is just a bit of a drippy nose; and other than that I do not feel sick anymore.  My immune system is now my hero (hopefully a really hot looking one - Avengers here I come!)

Oooo!  Another happy thing that I almost forgot about!  I am very happy to say that I will not be going through a chemo treatment during my ten year high school reunion in August (Go Ferris!).  My final (knock-on-wood) chemo treatment EVER is the week before, so I plan on being there.  I wonder how many of the women/men who come will be crazy enough to wear heels and suit coats at Manito Park.  This could be amusing. :)