Only two more months of chemo left . . .

Two weeks ago I was the lucky recipient of an MRI, two doctor's appointments, blood testing, and yet another chemotherapy round.  This was all done since it had been just over a year since diagnosis/brain surgery of my anaplastic astrocytoma.

 The first bit of news, I am apparently the recipient of being "Mrs. May" for the hospital's yearly oncology calendar.  One of my appointments ended up being me going to Dr. O's conference area and getting some "realistic" pictures of me pretending to teach a science lesson.  I do not think that I have ever taught such a terrible lesson in my life; "tip your head to the right", "smile more", "stand facing the other direction", "can we adjust the light?", "pretend that we are students".  Ugh.  I was given a copy of the finished calender, and have passed it on to family, however, I have no desire to ever show it here.  While I agree that the picture taken of me is decent, the information written by Dr. O could not be any more corny and sappy.  As a result, if you want to see it, you'll need to get it from the hospital yourself.  The only reason we have one of the calenders in our house right now is because my husband has hidden it from me.  I think that burning May would be more appropriate.

The next set of news is that there is thankfully still no sign of tumor regrowth.  The only worrying thing that came up is that there is still a section of the left side of the brain that could be considered suspicious.  The area where my tumor was surgically removed has shrunk slightly in size over the last four months from 8.3cm to 8.1cm, but has not gone away completely.  This could mean two things; first, that the tumor is still there, but is shrinking due to continued chemotherapy treatments.  Option two, that the tumor is gone, and my brain tissue that was compressed by the tumor is slowly relaxing enough to fill in the empty space.  I am personally a fan of option two.

The last bit of medical news is that unless there is a clear sign of tumor regrowth, that I will be done with chemotherapy towards the end of February.  The one annoying thing about that?  My scheduled chemo rounds are not timed well by any stretch of the imagination.  My next round in January is the week of my birthday, and my last round (knock on wood) in February is the same week as Valentine's Day.  While the timing is not the best, I am still going to bug my husband into us celebrating in some way.  Unfortunately the anti-seizure prescription has made me sensitive enough to anything alcoholic that if I even smell it I get tipsy, but I think that bugging my husband into taking me out to dinner is reasonable :).  

Finally, I have met my New Year's resolution from last year.  To quote my blog entry on it from January 1st, 2013:

"James Dean, you're going down.  And I'll make sure that you go down with plenty of show just to illustrate how obnoxious and stupid you really are (even though in real life James Dean looked like quite a dashing  bad-boy)."  

If you want to make a bet to try and win the lottery, I would do it.  I never, NEVER, actually hold my resolutions for the whole year.  Who cares about the tumor?  I managed to stick to a resolution.  It is a miracle!  Now it is time to get ready for my resolution for 2014; to continue to keep my James Dean tumor in time-out and enjoy another year of being tumor free!

One year to the day . . .

Today was a big day.  Today is the one year anniversary to the day that I found out I had a brain tumor.  My big activity to celebrate?  I did not set my alarm clock and slept in until I could not sleep anymore.  It was wonderful!  I can only wish that I can do the same thing every November 16th for a looooong time.  This might just top my wedding anniversary; but don't let my husband know that ;)

The next big day of celebration will be Tuesday, November 19th.  This will be the one year anniversary from when I had my brain surgery to remove (as best as possible) my James Dean tumor "friend".  I really find it hard to comprehend that a year ago I was working on compiling a will, signing "do not resuscitate" legal papers, and explaining to my husband when I would like "the plug pulled" if necessary.  After the many, MANY appointments beforehand telling me about everything that could go wrong during major brain surgery, I still consider it a miracle to this day that I was able to leave surgery on November 19th with nothing more than a stubborn eyebrow that wouldn't move and a stutter that only comes up when I am tired or nervous.  All I can do is thank everyone for their prayers and the Big Guy up above.

My goal for the next year?  That my MRI/CT scans will continue to show no change, and that my James Dean tumor will continue being non-existent.  I know that anaplastic astrocytomas have a higher rate of re-occurrence than others, but I figure that since I have made it a year already without any sign of it popping up again, and without any of the predicted seizures, that I am already breaking quite a few odds.  I propose a toast!  To another year of being brain tumor free!

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.