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.

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. :)  

Mars Here I Come!

I think I would live a lot better on Mars.  I've got to be allergic to less stuff there then here on Earth.  To make a long story short, I've broken out in hives . . . again.

Last time I broke out (after a couple ER visits, Epi-pens, and IVs full of Benadryl and adrenaline), it was due to one of the two anti-seizure prescriptions that I was on.  That was Dilantin, and I believe that drug is evil incarnate after itching non-stop for a month.  This time it is my other anti-seizure that they kept me on since I showed no ill effects initially.  Here is a report of the events that have led up to my new disdain of Keppra:

Sunday - Managed to get a sunburn on the back of my neck.  Put some aloe vera on it, all was good.

Tuesday - The sunburn no longer hurt, but was beginning to itch.  I thought that it was just because it was such a bad burn.

Wednesday - Rock notices that there are bumps where the sunburn is healing, and that there are bumps where there was not a sunburn originally.

Thursday - Bumps/hives have now covered the entire back of my neck and shoulders.  It itches A LOT.

Friday - Wake up, only to find that the size of my hive area has doubled.  Time to contact the doctors.

I went off right after I got off work to see the docs, and their conclusion was that my Keppra was the blame.  First, the Keppra prescription makes some people more sensitive to sunlight.  Strike one.  Next, it was noticed on my Keppra prescription bottle the label of:  "This is the same medication you have been getting.  Color, size, or shape may appear differently".  Strike two.  Last, when they asked the date that I started this "new" Keppra, it happened to be the day before I got my bad sunburn that started the whole mess.  Strike three.  The docs decided to take me off the Keppra I was on (Levetiracetam Cambe), and put me back on the Keppra I was taking (Levetiracetam Lupin).  My next mission?  Finding a pharmacy that still had a stock of my Keppra/Lupin.  This is when imagining some James Bond music helps relive the adventure.

After visiting my original pharmacy, Rock and I discovered that they did not have the old version of my Keppra prescription.  Their suggestion?  Call up other pharmacies until I find one that does.  After calling up five pharmacies, mostly leaving messages, we received a call back from one of them.  It was there!  We drove out, and I let them know my "new" prescription for my "old" Keppra/Lupin medication.  It took them an hour to fill it.  A full hour!!  Apparently the other pharmacy that my prescription was originally at took their time faxing over a copy of it.  If nothing else it was nice to sit in air conditioning for awhile and find a couple types of anti-itch cream.

So, I now have the prescription of Keppra that I am not allergic to.  If my hives spread any more I get to have the duty of heading back to the doctors to try and figure out something else on Monday.  

On a much happier note, I've decided to stop shaving my head.  The hives that popped up stopped me from shaving it this week, so I'm just going to continue doing so.  There is still a section on the left side of my head that is being stubborn and not doing any regrowth, but the rest of my head seems happy.  If all else fails I'll do a epic comb-over or shave my head (you can thank the school secretary for this idea :) like Miley Cyrus.  This could be the next big look!   

Don't worry, I don't plan on doing the Britney Spears hair style when she shaved.  Even I'm not that crazy. . . yet :)

Stupid Sun

The only point of today's entry?  I learned a lesson today.  The doctors and nurses told me more than once to be careful when I exposed my head to the Sun since it would be more sensitive due to my radiation.  I've tried to be a good patient, and have kept my head covered 95% of the time that I am outside (the 5% is mainly due to answering the door when some new person comes along to sell their church - sorry, I'm taken - or putting the hat/scarf on as I'm literally walking out the door).  

For about three hours this morning my husband and I went outside to get some yard work done.  I spent most of my time doing the first set of weeding this spring.  I made a point to be a good person and listen to my doctors/nurses, so I wore big straw hat and some heavy-duty sunscreen.  I even wore a "Buff" head piece underneath since some light could make it through the hat (thanks Marie for that gift, it is awesome!).  It was nice to work outside and enjoy the warm weather and sunshine.  At least it was until I came inside.  My husband was observant enough to notice that the sun had made it through part of the brim of my hat.  Here is the end result:

The one good thing is that you can see some of my hair coming back in on the back of my neck.  The bad thing is that I managed to get a sunburn that burned like an iron when we put some aloe vera on it.  The pain from that competes well from when Dr. O pulled the drainage tube out of my head a day after surgery.

So, the end result is that yes, I do sunburn A LOT on my head and neck.  This is truly an momentous event, since normally it is my husband who sunburns when he even looks at the Sun.  Now I will have to be the vampire.  The good thing about all this?  I am soooo going to use this to get out of yard work.    

Want a Good Horror Story? Have a Cat Lick Your Head!

Three weeks after my last round of chemo, and I finally feel as if I am eating normally again.  In the couple weeks after my last round of chemo ended, food that often sounded delicious did not agree with my stomach, and eating more than half a bowl of cereal was a rarity.  I am very happy to say that I just ate two pieces of pizza and no thoughts of potential stomach "expenses" have passed.  Yeah!

I am also very happy to say that I am almost back to my original starting weight before they filled me full of steroids.  I'm a human female, so trust me . . . this is bigger to me than the hair.  I never thought being able to slip on an old and grungy pair of jeans would be so wonderful!  On another ascetic note, my hair follicles are growing back like weeds.  There is hair growing back on my entire head except for one section on my left side about half the side of my hand.  Everyday there seems to be more hair coming in, so I am really hoping that in a week or two I will be able to succumb to an itchy-hair-growing-scalp and stop shaving my head each week.  My new hair that is coming in seems to be an reenactment of my childhood head in a quickened time lapse.  It comes in blond and curly, falls out, comes back dark.  It is like being a childhood toe-head compressed to a two weeks span.  It is too early to tell if the hair that returns will be wavy like my previous hair, curly like when I was a kid, or coming in straight just to be different.  Time will tell!

The most important medical news is that my left ear is still a mystery to Dr. Stilles.  All swelling and redness are gone (woohoo!), however, now that all that gunk is gone, some scarring is now visible.  My hearing in that damaged ear has improved to about 50% though, so I'll take what I can.  We're going to let my ear continue to sit and (hopefully) heal more for the next six months, then do some more tests and take another look to see how this ear will be in the long run.  My next goal is to be able to turn my ears in two different directions to hear things said around me just like cats and dogs can do.  Now that would be cool.

Next big medical event will be my next round of chemo.  I did really well on my triple dose of chemo meds according to Dr. Wagner (apparently most people he deals with don't even feel well enough to get out of bed when they are on a dosage similar to mine - thinking about it, I really wouldn't mind being able to sleep in a couple hours each day over the span of a week ;).  My next round will be starting Tuesday night next week when I take my first dose for the next five days.  I didn't really feel this higher dosage too much until two or three days had passed; I'm hoping for the same this time.  If I do lose my stomach, I'll just make sure to aim for the cat instead of my husband.  He (the cat, not my husband - you know you thought it was Rock) owes me anyway for licking my scalp while I was asleep.  Trust me . . .waking up to a giant cat licking your head is more traumatizing than waking up from brain surgery.

Hairy and Loving It!

I am now (FINALLY) on my last day of this round of chemo treatment on my triple dosage.  The first three days went well, I was certainly more tired than normal, but it was manageable.  This weekend however has been a new chemotherapy adventure; it was much like the weather, stormy with occasional glimpses of sunshine.

Step 1:  My tummy felt a bit upset on Saturday when I woke up, so I decided to just make a couple pieces of toast for breakfast.  Bad idea.  Don't know if it was the butter or the bread that resulted in the rapid evacuation of my stomach contents.

Step 2:  Don't eat anything!  Smells were gross, thinking about food was gross, TV commercials were gross,  meals in my book were gross, water was gross, etc, etc.  My husband was kind enough to only eat non-scented food.  Anti-nausea pills did nothing!

Step 3:  Take more anti-nausea drugs!  My stomach stopped rolling enough that I decided to try and eat something.  I still wasn't hungry, but I do know that food is an important thing that contributes to survival of the fittest.  Toast still seemed like a big no-no, so I went with some good ol' $0.89 box of mac and cheese.  I managed eat about 1/4 bowl of it, and then stopped.  YEAH!  Survival!

Step 4:  Waited a couple hours for my stomach empty (NOT out of my mouth thankfully), and then took my last round of chemo drugs for the next four weeks.  Then to bed, my vomit bowl coming with me.  The cat may throw up/drool on the bed, but I refuse to.

Step 5:  My tummy this morning felt like it did yesterday morning, so I decided to try a small bowl of cereal instead of toast.  Success!  I haven't eaten anything since then, but the food is staying down.

Despite everything with my intestinal tract, my hair is very happy right now.  It is growing like there is no tomorrow!  (Much like the grass is some patches in our yard).  A couple months ago we had to shave about 20% of my head, now we are at least up to 50%, if not more.  We also now have to shave my head more often, since the hair that is there is growing in faster.  YEAH!  I'm planning on gradually beginning to switch over to wearing hats to work instead of scarves as the growth continues.

Two months ago

Today

Right now my head looks more a balding man's head than my own, but least my hair is coming back instead of going away!  Unfortunately, it does seem to coming back the same color now.  Darn; I was hoping for green or blond.

Anti-Nausea, Chemotherapy, Anti-Seizure, and Ear Antibiotics . . . A Recipe For Adventure!

Happy Spring Break everyone!  Teacher's everywhere probably agree with me, but parents whose kids are now home for the week might not.  At least it is sunny so they could always be pushed outside to play.  (Now that I've said that I'm sure that I've jinxed it and it will start raining/snowing any minute).

First things first; an ear infection update.  On Thursday I went in to see Dr. Stilles (my radiologist) . . . again. This time it was for a second look at my infected left ear to see if the given treatment had any affect.  Happily, all the gross gunk/puss/gooey-ness that was there is now gone, however it is still just as swollen as before.  The good thing is that this pretty much eliminates the chances that it is a fungal infection.  However, the bad thing is that it makes it more likely that it is permanent damage from the radiation treatment.  Dr. Stilles has put me on my antibiotic ear drops for another week to see if all we need to do is continue the treatment on the infection longer than normal thanks to my chemo treatments.  If there is no significant change when I see him again in two weeks, then I'll have to start searching for hearing aids.  Yuck.  If nothing else, it will guarantee that no one will ever be able to talk behind my back (Ha!  Knee slap on that one!)

I also visited Dr. Wagner (my oncologist) the same afternoon I saw Dr. Stiles.  I am very happy to say that the results of the blood work testing that was done that day with Dr. Wagner (or his identical twin brother ;) were really good.  My blood work, in a very pleasant surprise, came back 100% normal.  Woohoo!  Since the nausea I experienced with my last week of chemo was quite a bit below what most people experience with a double dosage, and my blood work came back so well, my weeks of chemo treatments over the next six months will all be triple my original dosage.  That Temodar (chemo) prescription and I are going to have to bond even more.  The only difference from now on (other than the dosage) is that I am going to start my five days of chemo treatment on a Wednesday instead of a Monday.  That way my last two, and toughest, days will be over the weekend instead of on Thursday and Friday when I am working.  I would really rather not lose my lunch on a student if I could avoid it.  So far I feel the most nauseous at home, not at work.  I think the fact that I am always up and moving at work helps with that.  However, this could be a good lesson in health class on the digestive system :).  

I also have a request for bald/balding people everywhere . . . how can you prevent getting a sunburn on your head ?  Sunscreen makes my scalp into a greasy mess, and most hats that look cool enough for spring/summer weather have holes or gaps in them that would expose parts of my head or my neck.  I went out into our yard yesterday for fifteen minutes without a hat, and managed to get a sunburn on my head.  They really weren't kidding when they said that the radiation treatment would make my head ultra-sensitive to sunlight.  Today when I go out to do some yard work, I'm going to just wear a hooded light jacket along with a bandanna.  I may look like a creepy vampire, but I won't get burned!

For anyone who gets really bored over Spring Break:
LOTS of dominoes

No More Flaming Tortillas Allowed

Three weeks of work complete and counting!  Sorry it has been so long since I've written another entry.  Being back at work does take up all the free/boredom time I had before.

I feel that probably my biggest accomplishment since my brain surgery in November is that I have managed to make it through the last three weeks of work without hitting what my husband calls "crash mode".  (I have a feeling he gathered that saying from one of his destructive X Box games).  I have also had my first round of chemo after my six week straight of treatment, and let me tell you . . . double the chemo dosage is certainly a new experience.  Before my major food repulsion was blueberry yogurt, thanks to my double dosage, it now seems to be ALL yogurt.  I had a hope that the nasty/gross/vomit/overall-eww feeling of this would pass after I finished that week of treatment, but unfortunately it has not chosen to leave.  After my next six months of chemo treatment end I am going to have to create some real courage to attempt to try yogurt again.  Or, if you have someone you really don't care for, give me some yogurt (preferably blueberry), and tell me where to aim.

Right now my life has changed from staring at the inside of our house all day to a very predictable schedule.  Now it is work, doctor, sleep . . . work, doctor, sleep . . . work, doctor, sleep, etc.  To help with this I have set a time limit on myself; my goal is to leave work every day by at least five o'clock.  For my first week back, my goal was 5:30, but I've learned that while I don't feel the tiredness at the time, I do feel it when I hit the bed that night.  My husband has been pretty nifty though and has begun cooking dinner during the week so there is dinner there and waiting for me when I get home . . . and this time he hasn't set fire to anything!  (To make a long story short, he once left tortillas in the oven and forget they were there.  You can probably predict what happened after about twenty minutes of tortilla-oven-cooking).

Last Thursday I had my first appointment with Dr. Stilles post-radiation.  It was good and bad.  First of all the good:  They did not feel a need to do the scheduled CT Scan since my MRI a couple weeks before showed absolutely no tumor regrowth or brain tissue damage from the radiation treatment.  Whew!  That was the good news.  Now the not so good news:  My left ear appeared to have an infection, but it was not a normal infection.  It apparently looks a lot like swimmer's ear since it is before my ear drum; but the problem is that the medication they had me take has had zero impact.  That leave my special left radiation-filled ear with two options; one is that it is an odd fungal infection.  The second option is that it is permanent damage as a result of the radiation being fired at the area for six weeks.  I will be meeting with Dr. Stilles this Thursday again to discuss options.  If nothing else, one amusing thing about this is that everyone sounds very odd in my left ear, while very normal in my right.  When I woke up this morning I let my husband know that he sounded a bit like a koala (No, I have no idea what that sounds like, I was half asleep and clearly in the middle of some really weird dream).  My hope is that I can figure out a way for my husband to sound like Leonardo DiCaprio.  Wish me luck! ;)

    

My New Best Friend? Anti-Itch Cream!

I've survived my first week back at work!  Don't get me wrong, it wasn't like it was a walk in the park, but I'm back and and I'm back for good.  With everything going on at the school it was more than a little crazy the first couple days, but with any luck there is no other place to go but up (knock on wood)!

The big news this coming week is that I am going to be starting my next round of chemo as of Monday evening.  It is only going to be a week long, so in theory it shouldn't affect my body as much as my six week stint of chemo did.  The big difference this time is that while I am only taking this round of chemo for a week, it will be twice as strong as my last daily dosage.  Ouch.  Dr. Wagner is not predicting that this will affect my immune system to any problematic level since my immune system kicked-some-behinds (in a good way) during my six weeks, all that he said could be bad is nausea.  Before I was able to just take one anti-nausea pill, and it would last me all day, and my only issues would be oddball ones (ex. blueberries).  I am planning on upping any anti-nausea drug up to "two a day" without an experimental "one a day"  this week.  I am also considering adding a new rule to my classroom of no more blueberries within my presence. ;)

This next week I also have another CT Scan on Thursday with Dr. Stilles.  The only goal of this CT scan is to look at my brain and check to see that appropriate repair within my brain has taken place since my last set of radiation four weeks ago.  I had a MRI a couple weeks ago that showed awesome improvement post-brain surgery, so I do not see any upcoming problems from the data that will be collected on Thursday.  The only annoying thing about this is that the latest the radiology department at the hospital could make my appointment was 4:00 pm, so I'm going to have to leave school just after the kids and try not to get stuck behind a logging truck or some quirky person who doesn't believe in going over 50 mph on a
70 mph highway.  My odds of avoiding those vehicles are probably a lot smaller than the odds were of me making it out of brain surgery in November 100% okay.  

On another happy note, my hair is beginning to show some more growth.  The only areas that are growing are still just the couple areas where I did not lose hair during radiation, but the rate of growth has certainly increased.  I now have to shave my had twice a week to keep my "Mr. T" patch to a short length. Except for my Mr. T patch, I do not have any new hair coming in, but I think I might be enjoying that for now, because I am now learning how growing hair on your scalp patches itches like no tomorrow.  Anti-itch cream here I come!

RIP Steroids, You Will Not Be Missed

Today has been my "let's see how this tumor is doing" day (that is a direct quote from Dr. O).  First, I had an MRI this morning at 8:00am.  It was thirty minutes long, which may seem like awhile, but goes much quicker when you enjoy the view from inside the machine.  There is a mirror above your head that gives you a reflective view of the parking lot out of the window, where there are plenty of cars.  I've discovered that if you imagine the cars animated like in the movie Cars, time goes much faster (and it really makes you wonder about your own car does when it is left alone in the garage).

After the MRI, I traveled a couple blocks away to see Dr. O and his resulting analysis of my MRI.  This was a really important MRI; the big thing that Dr. O was looking for was any visible sign of the tumor's returning presence.  If it looked like my James Dean was being stubborn and was regrowing, then this whole brain tumor removal process that started in November would begin all over again, except a lot more aggressively.  I am very happy to say that based on the MRI I took this morning that are no signs of tumor regrowth.  YEAH!  With the release of pressure inside my left lobe, my brain stem has happily returned to its normal location, my left optic nerve is no longer swollen, and the empty space in my left lobe left from the tumor removal has mostly refilled itself as the nerves on the left side relax with the increase in space.  Based on what Dr. O saw, he has now taken me off of all of my steroids and says that he hopes he doesn't have to see me at all for six months when I will do another MRI. I'm pretty happy about that since according to Dr. O today he removed 7cm worth of tumor.  That is big!  Now I can maybe begin reclaiming my jawline since my steroids are going on permanent vacation.

On another note, my hair is growing back in a very interesting fashion.  So far the only sections that are growing back are sections that never fell out in the first place during radiation.  My husband had much fun marking that out on my head.

 He wanted to use a permanent marker, but I put my foot down and said that I would only accept eye liner as his artistic tool.  He tried to draw a smiley face as well on my scalp, but his unconscious giggling gave it away. I am happy to say that even coming off radiation/chemo, I can still run faster than he can. So far the rest of my head that Chris did not outline is staying bald.  I figure I'll keep my cow-spot areas shaved short until the rest of my hair comes in.  Until then I'll just keep using hats and scarves to keep it mostly covered.

Oh, and here is a random bit of coolness with scarves . . . there are hangers that are created only to hold scarves!  That was a very fun find, since before this all of the scarves I was wrapping my head in were stored in a garbage bag stuck in the corner of my closet.

My next mission, to find a scarf I could wear as a head scarf on Pi Day (March 14th).  Now this will be a fun hunt!

Mr. T and I Might Need to Share a Hair Stylist

I'm done with radiation and this round of chemo!  YEAH!  Now I can hopefully begin to function like a normal human being again.  The thing I am looking forward to the most?  Eating!  I am really looking forward to drinking water that doesn't taste like metal, and food tasting like it should.  (Hopefully I'll continue my new-found likeness of meatloaf :).

The other thing that I am really looking forward to is my hair on my head returning.  My radiation was strong enough that I lost hair on my whole head . . . except for this ring on the top.  That section of hair is growing in nicely, but I look a bit like a balding Mr. T with my funky set of hair that never fell out, but is growing strong.  I am planning on keeping any hair that is growing in as a pretty short buzz-cut until all of my hair begins to return.  I would rather not look like a rocker from the 80s.  However, thanks to losing the hair I did learn that I have a total of eleven moles/birthmarks on my scalp.  Who knew?

Now that I am done with radiation/chemo for now, I am moving onto the next health issue brought up by my tumor . . . teeth.  My mouth was already messed up, but the dentist and I could not figure out why.  What was the oddity?  Well, I don't just have four wisdom teeth, I have six of them.  Yup, six.  My mouth had plenty of space with four, so there was no plan to take them out.  Two years ago, the dentist and I were a bit surprised when the x-rays were taken, and I had more wisdom teeth coming in.  Apparently this is something that is not unknown to dentists, but is normally a genetic trait that runs in families.  No one else in my family has had this, so it was a mystery.  The presence of the tumor might of messed things up enough that it caused my extra wisdom teeth to arrive.  Ugh.  Those extra wisdom teeth are squishing all my other teeth together, so before I can have my wisdom teeth removed, repair has to be done on my squished teeth.  Apparently the radiation directed at my head and this round of chemo did some stuff to my teeth and gums as well.  So I don't have any visits to my brain/chemo/radiation doctors this next week, but I do get to have bonding time with the dentist.  The dentist's advice to me when I saw him for my cleaning yesterday?  "Next time make sure to come in before you have surgery or begin radiation and chemotherapy, so we can try and prevent future problems."  I had to explain to him that I only had two days notice before surgery, and that they were closed those two days.  The world just might be ending the first time I find a dentist that is open seven days a week.

Next thing I am looking forward to is getting off my steroid prescription.  I am really hoping that when I see Dr. O and Dr. Wagner the last week in February, that they will be very happy to take me off of it.  I would love to have a jawline back.  Facial hair is also annoying, but I've been trying to keep it nicely groomed ;)

The last thing I am excited about being able to do again is returning to work.  It is said that a teacher never goes into teaching for the money, and it is true.  I am admitting that I really do miss my students and working with middle schoolers.  It will feel wonderful to wake up each day knowing that I have sometime to do with my day other than wandering through the house looking for ANYTHING to do.  Besides, playing with chemicals in chemistry is quite a bit more fun than playing with the chemicals used for cleaning the house.  
 

Thursdays Can Be as Happy as Fridays

The whole point of the blog post today is to share the list of happy news that has recently occurred and been verified!  Here is the list of "Happy News":

1.  My younger sister (Jaclyn) and her husband (Adam) who live down in Denton, TX (just North of Dallas) are expecting their first child!  Since there is still some doubt as to whether I will be able to have children after everything that has happened, this means that my husband and I are very willing to become a obnoxious and spoiling aunt and uncle.  We have already decided that we will make sure to send them those annoying gifts that the child loves, but make extra noise, have multiple lights, run through batteries like no tomorrow, and have special assembly requirements.  With any luck, after a couple years time when my husband and I can begin to relax after my James Dean tumor decides not to return, we can look into our own child options.

2.  Tuesday next week will be my last day of radiation, and the last day of this first round of chemo!  From this point onward, for at least the next six months, I'll have four weeks "off" and then a week "on" of chemo.  The first week I'm back on chemo will be the second week in March, and they plan at having me at twice the dosage I've been at the last six weeks.  Depending on how that week goes, my next chemo (four weeks later) will be at triple my original dosage.  I think that my anti-nausea medication will become my new best friend.

3.  I'll be returning back to Marion School to first the first Monday in March; March 4th!  My immune system is doing a lot better than average chemo patients, so I did ask Dr. Wagner at my last appointment if I could return sooner, but after some thought he said that I could return sooner if I wished, but recommended against it since the flu is still out and about.  Darn!  He also did let me know that he was pretty sure that it would be okay for me to continue to teach during my future week-long chemo treatments since my immune system did so well over the six weeks of chemo.  He did let me know that increased nausea might become more of a problem since it would be a higher dosage, so the second week in March was going to end up being the "experimental" week.  I'll be thinking a lot of happy-tummy thoughts that week!  

4.  My husband considers this happy news:  I now sneeze out of my nose.  Apparently how I sneezed before surgery (out of my mouth) was wrong and gross in his opinion. So, I still cannot move one of my eyebrows, but can sneeze correctly . . . while rolling my eyes at my husband.      

I Don't Feel Like Glitter . . . Twilight Lies!

I learned Friday that it is possible to be a vampire.  The radiation aimed at my brain makes the skin on my scalp extra sensitive, so I was warned about avoiding sunlight when I first started my radiation treatments.  Somehow in the ten minute drive between our house and the radiology/oncology department at the hospital, my uncovered left ear managed to get two to three minutes of direct sunlight (the rest was under a hat).  Well, to make a long story short, my radiation burn on my ear is now very unhappy.  It has now hit a point of vampiric classification.  Sunlight = pain/death of skin.  This means that Braum Stoker was correct with his Dracula, and Stephanie Meyer was incorrect with her Edward.  (Besides, anyone from Western Washington knows that everyone glows after nine months with no sun.)

When I was laying in radiation on Friday I started having an itch on my leg and let my mind wander  . . . "hmm . . . that is annoying, I'm not allowed to move . . . I should wash my jeans later . . . I wonder if it is a bug bite . . . did I just get the bug bite? . . . Spider Man had a radiation-spider bug bite . . . maybe I'll turn into a Spider Woman."  Anyway, after more superhero/villain thoughts while I laid there, I began compounding a list of superheroes/villains that were created with the "assistance" of radiation exposure.  I could really use this radiation I am receiving to my advantage in my quest to gain superpowers.

Superheroes
-  Spider Man:  No one is naturally that flexible.
-  Hulk:  I wouldn't mind being a She-Hulk, as long as I had the strength of a body builder without looking like one
-  Fantastic Four:  Invisible Woman would be good, expect for the lack of clothing required
-  Miss Marvel:  I don't think I meet the requirement of alien exposure, and only put up with flying when it involves being in a commercial airline.
-  Mr. Manhattan:  He is the equivalent of a resident at a nudist colony when it comes to clothing, so not for me.
-  Powerpuff Girls:  They are the same age as the students I teach, I don't want to age that far backwards in time.

Villains
-  Sandman:  "Mr. Sandman . . . Give me a dream . . . dumdumdumdum".  No more explanation is needed.
-  Godzilla:  Terrible breath.
-  Dr. Doom:  He wouldn't be too bad, the mask was awkward looking, but ruling the world would be nice.

If you have any other suggestions for my future (most likely) super villain status, feel free to let me know.  Then I can begin my process of taking over the world.  I am looking for minor henchmen to join me, applications must be received by the end of my radiation treatments on Friday.   Who knew that paying for radiation after my tumor removal surgery would be such a good investment?

Gross Picture Included

So far this week has been boring.  There have been no new major events with my tumor and it's treatment, and no new discoveries as to it's James Dean status.  So, this week's blog entry will be about radiation sunburns!

I realized earlier today (while I was getting my radiation treatment ironically) that I keep talking about radiation sunburns, but have yet to show you what it looks like.  Here is a picture of my most impressive "sunburn" behind my left ear:

The front of the same ear has a sunburn as well, but the sunburn it has just looks like peeling skin.  I did talk to Dr. Stille about the sunburn behind my left ear today, and he let me know that it has gone past the sunburn point and should now considered more of a regular burn like you would get from a hot stove.  Ewww.    I now have doctor's orders to put aloe vera on it at least twice a day, because there really isn't much that can be done about it until I am done with my radiation treatments.  I am still very happy that I passed my hearing test for this ear with flying colors.  Apparently this ear cooks well and is sufficiently stubborn when it is ordered to listen to noises produced by others.

On a final note, my blonde hair patch still exists and has not fallen out.  This could be "unique" hair I get when it all grows back . . .      

Marshmallows, Enough Said

My husband has now become a hair stylist.  It is looking like every Sunday is going to be the time allotted for my head shaving, with him handling the razor.  80% of my head is missing hair, however, I still have the rebellious hair trying to form a very slow growing mohawk down the middle of my head.  My mohawk hair is still dark brown, so even though it didn't grow any more than a man's five o'clock shadow over the last week, it is pretty visible.  The best thing to shave it with?  A woman's leg razor.  So men, if you are married and need a razor to shave your balding head, use your wife's.  (Just make sure you have her permission first, otherwise you might end up outside either underground or in the doghouse).  Here is a picture of Rock getting ready to test his new profession on my head:

He really did do a good job, but he did find something that he thinks is really cool.  I'm still undecided.  When he was shaving my mohawk hair, he discovered a patch of unexpected hair at the top of my forehead/skull lump.  This little patch of hair was growing back in . . . and was bright blond.  It is so blond you couldn't really see it, only feel it because it blended into my white scalp.  This either means that I am going to become a half blond/half brunette when all my hair comes back, or that it is just temporary hair that will fall out soon and grow back in brunette.  Maybe I made it too well know that I would like my hair to come back blond, and only some of my hair cells listened.  Perhaps I'll get a couple neon green cells to even it out.

I have also discovered a new food that still tastes delicious; marshmallows.  Last night I made myself some hot cocoa, and ended up eating more marshmallows than the hot cocoa itself.  The fact that marshmallows don't have a taste other than sweet goodness must be why it is so wonderful.  I have a husband who is wiling to shave my head, and a bag of marshmallows as needed . . . I am one lucky woman!    

Battle of the Bulge (Pun Intended)

Nineteen radiation treatments down, eleven more to go!   I have hit a point now where I actually enjoy going to my radiation treatments because I know that the end of them is in the near future.  The more I go to, the fewer are left!  

I gave myself a challenge this week.  Every Wednesday when I receive a radiation treatment, I get to have a meeting with Dr. Stille, my radiologist.  In my meeting with him, the whole point of it is that I can come in with any questions I may have about my treatment and hopefully get them answered.  Well, this Wednesday I went in with a mission . . . to convince him to reduce/get rid of my steroid prescription so I can regain my ballooning face.  (My face has been ballooning enough that the people who are giving me my radiation treatment each day were having a hard time getting my radiation mask to fit, even with my lack of hair.  Plus, I really would love to have my jawline and cheekbones back)  Now here is the tricky thing about this mission; my steroid prescription was not given to me by Dr. Stille (my radiologist), it was given to me by Dr. O (my brain surgeon).  I will not be seeing Dr. O again for another two and a half weeks, and he kept me on my steroid prescription because of the fact I was being given radiation treatments by Dr. Stille.  Whew!

I learned yesterday that there a big advantages to being a biologist and teaching middle-schoolers for a living.  I was successful in my debate with Dr. Stille!  I truly don't think he has ever had a patient question any decisions he has been in charge of, because he seemed a bit in shock when I asked him if the amount of steroid I was receiving was really being beneficial to my radiation treatment.  I am happy to say, that after some negotiations, that Dr. Stille reduced my steroid prescription by half, and after two weeks at their now reduced level, I can begin taking my steroids every other day.  After one week of every other day, I can be done with them!  Yeah!  Thank you to all of my biology and education professors that I have ever had; you are awesome.

Yesterday I was also lucky enough for UPS to deliver my next shipment of chemo drugs.  I have a feeling that the company that makes my Temodar is making more money off of it.  Now each pill comes individually wrapped, but still stuffed inside a prescription container:

The small container is what 15 days worth of prescription was before, the three larger
containers are what 15 days looks like now.

 In addition to the increased container size, they also now include much more information.  Before I had a twelve page packet listing off all side-effects, drug interactions, etc.  Now, I get a twelve page packet, and two sets of additional information on the chemo drugs.  One page (the page without drugs on it in the picture)  describes how the drug works, dosage calculations, the pill dosage color code, sources or research, and a least one graph for each piece of information.  The other page (the page with the drugs on it) is a repeat in much smaller print of my twelve page side-effects packet.  Anyway, to make a long story short, I now will be housing scissors in my Ziplock bag-o-drugs so I can cut open three little packets of individually wrapped pills a day.  These chemo drugs and I are going to have a close knit relationship, but I avidly look forward to the relationship collapse in six months.  

      

    

You Fooled Me For the Last Time Mr. Bond!

It's official!  My head is now shaved, and I will say, it feels soooo much better than it did before.  Before this my head itched constantly with all the broken hairs that kept falling out.  Now my scalp is free!  Since I don't have any more hair to lose now, it does unfortunately mean that our cat has won the shedding award since he is continuing to lose his hair on my lap as I type.

The best part of this was finding out that I actually have a fairly smooth head.  Granted, there is my scar and a lumpy spot on my forehead from some bone they dealt with during surgery, but my head is mostly smooth. It was a very pleasant surprise.  Going into this my husband remember his favorite Shel Silverstein poem and spent about an hour searching through his books to find it:

WAVY HAIR

I thought that I had wavy hair

Until I shaved.  Instead,

I find that I have straight hair

And a very wavy head.

Thankfully I now know that this poem is not about my head, just my husband's.  The other cool thing is that I am now able to see my entire scar from brain surgery.  It actually looks pretty good considering how long and serious the surgery was.  

You can also see pretty well in this picture where I had no hair, and where hair still existed.  As you can see, the hair that I still had present would of made a pretty good mohawk if I was feeling adventurous.  The only annoying thing is that the lumpy section of my skull from surgery above my eye is more visible, but it gave me an excellent reason to go shopping.  (Just so you know, all hats at Target are 50% off right now.  I am now stocked up for my winter baldness.)

I am also happy to say that I have now hit the halfway point of my radiation treatment.  As of Monday, I will only have three weeks to go!  I'll still have my chemotherapy for another six months after radiation ends, but both the doctors and I believe that I can put up with that since my immune system is doing better than expected.  Possibly the best part about radiation ending in three weeks is that I will finally be allowed to stop taking steroids.  They have had me on steroids to avoid swelling in my brain tissue. The doctors have had me on steroids for just over two months now, and while they may give men muscle and overall hotness (but not brains unfortunately), in ladies they make our heads and stomachs balloon.  I used to have a jawline, mostly flat stomach, and cheek bones, but the steroids have other ideas.  I work out at least 20 - 30 minutes everyday, which has given me very nicely toned arms and legs, but the steroids just have to make it complicated elsewhere.  On the positive side, since my current radiation/chemo is overall going so well, it looks like I'll be able to return to work the first week in March.  I believe that is very happy news to end my first hairless blog post on. :-) (Oh, and thanks Jen for the advice on earrings when your head is shaved; it prompted my husband to get me some nice sets of dangle earrings for my birthday.)    

Donald Trump Really Does Need a New Haircut

While I am writing this, my husband has literally locked himself in our bedroom.  Why?  He is wrapping a gift for me for my birthday tomorrow.  Yeah!  The radiation people were kind enough to give me a small cake (which will be breakfast tomorrow), and also let me know that my radiation appointment tomorrow is cancelled because the radiation facility is having a software upgrade to their computers.  That is a better gift than the cake.  Three day weekend here I come!

My cake from the radiation people.

Today was just a day of good news with the doctors.  First, Dr. Stille let me know after a hearing test that so far I have no hearing loss in my left ear.  This was something that was a concern originally since so much of the radiation I am receiving is going through the area around and through my left ear.  I would not enjoy having to get a hearing aid at the ripe old age of twenty-eight.    Second set of good news, I had blood work done at Dr. Wagner's today, and the results were great.  The best part of the results? My immune system is AWESOME!  Right now my immune system is low for my age, but not so low that I have to completely hide.  Apparently it is about at the level that they see in their more elderly patients before they start their chemo.  My husband and I are now actually contemplating going to a restaurant for my birthday.  I never thought I would love that thought so much.

Also, this weekend is going to be my GI Jane weekend.  I've continued to lose hair on the left side of my head, and the right side is now getting quite a bit of noticeable loss as well.  I've tried a comb-over, which does cover it up about halfway, but it is a bit too Donald Trump for my taste.  So Sunday morning when Great Clips is mostly empty, I'll be making a trip for a good ol' head shaving.  If nothing else it will be a nice way to save some money on shampoo.  The only sad thing about this is that I will no longer be able to make jokes about hair with my husband being the victim.  Darn.

Hair Today, Gone Tomorrow

Well, the radiation is finally getting to my head (pun intended).  I am now getting some pretty good visible hair loss due to the radiation treatments.  I know that it is mainly due to the radiation because most of my hair loss is happening on the left side of my head where most of the radiation is being aimed.  So far the chemo just seems to have stopped any hair growth.  That part of it is awesome, because it has now been two weeks since I've had to shave my legs.  Booyah!  To give you an idea of how quickly my left-sided hair has decided to leave, here is what came out of my brush when I brushed my hair last night after a shower:

I will say this, my hair does not do things halfway.  My husband did not appreciate the couple jokes I made about how I still have more hair than he does.  Here is a picture of the left side of my head now that hair loss is taking place:

The one good thing is that I now know exactly where the strongest radiation treatments are taking place on my left side.  I am also going to need to start channeling Demi Moore so I can do the GI Jane haircut.  Right now hats cover it up pretty well, but I have a feeling that will not be the case by the end of the week.  Until then our cat and I will compete for the top rate of shedding.  (So far I believe the cat is winning; that's what we get for adopting a long haired tom-cat).  

Radiation Pictures and a Draino Shopping Spree

I've survived my first full week of radiation/chemo!  Before this it was the holiday season, so I never had more than three days in a row, but I made it through five in a row this week.  TGIF!  I can now say that I certainly appreciate the weekend even more.

In honor of the five day week, I got one of the radiation tech people to get a couple pictures of me strapped in to the radiation machine right before the machine started its daily shooting at my head.  If you are a student of mine in Marion, enjoy these photos.  You know that you will never see me not moving just because I'm told not to again.

There is the mask getting ready to be hooked down around my head.

I'm all strapped in!  The blue and yellow dots are two of the nine spots that they are aiming radiation at.
The other seven spots are underneath or on the left side of my head.

The radiation machine is above me and getting ready to start.  

 Thanks to my mask I always have some good lizard scale marks on my face whenever I leave.  The radiation tech guys who set me up each time have also assured me that I can keep my mask when I am done with treatment.  I'll have to stick it up in my classroom on a wall, that way I am always watching . . . mwhahaha! ;)

This week I have also made some new food discoveries; some good, some obnoxious.
Good:
-  sloppy joes - if I make it a bit spicy, it tastes almost exactly the same as it used to before radiation/chemo
-  Pastor Steve's wheat bread - the middle of the bread I cannot taste, but the seasoning on the crust is wonderful!
-  Crystal Light - the different lemonades actually taste kinda like lemonade, and they cover up the metallic taste that water now has for me
-  A&W Root Beer - tastes like root beer!
Obnoxious:
-  blueberry yogurt - lets just say that my stomach decided to protest the presence of this substance (strawberry and peach are still on my stomach's good side)
-  dill pickles - they now taste like sweet pickles, which is just odd when you expect dill
-  Italian dressing - it doesn't taste like anything now other than soggy lettuce, I'm going to eat salad like a rabbit (without dressing) from this point forward

This week is also the first week that my husband has taken note of my hair loss.  It is happening a lot more on my left side since that is where more of the radiation is aimed.  His way of acknowledging it?  Telling me after a shower "We need to get some Draino.  Your hair is going to plug up the drain."  Thanks Rock, at least you're being proactive.  (We really did get Draino at Costco today.  What can I say?  Better to prevent future plumbing issues than deal with them later!)

Now I'm off to make and try another dinner item I have not eaten yet since starting chemo, enchiladas! Oh, and I hope the Seahawks destroy the Falcons this weekend.  I'm sorry if you are a Falcon's fan; I want you to lose horribly.

Witty and Sharp? I'll Take it!

First news of the day . . . I now like meatloaf.  I don't know if that is because I cannot taste it as much, or because my brain truly likes it, but I'll take it!  Leftovers for dinner tonight!

The big thing that happened today is that I had what will hopefully be one of my last meetings with Dr. O.  (If you remember, he was the lead surgeon on my brain surgery to remove the tumor in the first place.  Incredible surgeon, but needs help communicating with others).  My meeting with him turned out to be short, but sweet.  He came in, leaned back in his rolling stool against the counter . . . and then asked me if I was wearing a wig.  My shorter hair seemed to be a bit of a shock to him, but he recovered quickly.  Dr. O made many attempts to be social able, and did give me a very nice compliment by calling me "witty and sharp."  He does think however that I will be on my anti-seizure prescription for the rest of my life (better safe than sorry was his approach, and I do agree with him).  I won't be seeing him again for another four weeks, at which point I'll be getting an MRI before my visit so "we have something to talk about" in his words.  He is also anticipating that I will be getting multiple MRIs over at least the next two years just so we can see if my James Dean tumor decides to regrow itself.  All this happened in a total of about twenty minutes.  I wish all the appointments I've gone to over the last month and a half since my surgery were that fast!

Also, my husband has been enjoying the snow.  He often complains about how the snow is too cold and dry to make a snowman out of.  Well, we are having some warmer weather, so he went outside and spent about half an hour being a kid again.  Here is his snowman:

The arms are branches he actually kept from the last snowman he made earlier in the winter.  He thought that they were too good to lose.  The one thing he wants me to tell you about the snowman?  "It was really heavy!"  I love my husband, but he is a special man.

Food and Radiation Geekiness in One Entry!

A week and a half done, four and a half more weeks to go!  I wasn't really feeling the stereotypical radiation/chemo stuff too much up until now; but I have hit the point where I will sadly acknowledge their annoying existence.  The annoyances thus far:
-  complete exhaustion - I felt more tired getting out of bed today then I did getting into bed last night!
-  dizziness - standing on one foot or turning quickly without teetering is now a dream
-  nausea - my anti-nausea prescription has become my best friend, but sometimes it cannot even manage to
   help (I have discovered that eating some old ginger snaps from the holiday season helps though)
-  radiation "sunburn" - I am getting a great peeling "sunburn" from the heavy radiation directed to my forehead, my ear, and most of the left side of my skull.  My head is also usually cold because the radiation aimed there is resulting in the loss of a decent amount of hair.  So thank you to anyone who gave me a hat, they have become a good friend of mine when ever I have to go outside.

On the topic of my radiation, I managed to get a copy of the paper that shows how much radiation is directed at the different parts of my head!  It shows the parts of my brain, the dosage, and the location.  They created this at Dr. Stille's after they did a CT scan on me at my first appointment.  It is color coded, but probably the most important color is purple.  The purple area is the predominant space of my now removed tumor, so the purple space now is just filled with normal brain liquid.  I have a hole in my brain!  I think it is cool, particularly since I haven't lost any function as a result of my holey brain. (That is not meant to be a pun).  There are also some colored lines, which you might not be able to see.  The colored lines show the dosage of radiation.

I had a fun time as a nerd looking over this.  I completely understand if you don't.  My husband zoned out after a bit and started playing Angry Birds.

On another more humorous note, with the addition of my regular chemo drugs on top of my Temodar (the chemo drug just for brain tumors), eating has become a new adventure.  Not necessarily because of the nausea, but because of the taste.  I always heard people talk about how things will taste different, but I figured that it was a bit of people expecting it to taste different when it really didn't.  I was completely wrong.

Nasty food that used to be good:  

-  oatmeal - my favorite flavor of oatmeal now tastes like cardboard (with the texture of mush)

-  water - always tastes like metal (even my own saliva, which is just weird)

-  maple syrup - just a sticky mess that makes pancakes soggy

-  lemon - I'm pretty sure I could eat a whole lemon without wincing once from the sourness

-  wheat bread - it doesn't taste bad, it just has no taste 

-  Dr. Pepper - my favorite soda now tastes more like a plain Coke (which isn't bad, just odd)

-  spicy food - I am pretty sure I could eat a couple habaneros peppers without batting an eye or breaking a sweat

However, one nice thing about all the funky food tastes that I have right now is that I have been doing more adventurous cooking just because it is fun to see what I can and cannot taste.  I learned yesterday that I now like pineapple and cheese on my pizza! (Canadian bacon is still gross, whether I'm on chemo or not.  Ew.)  The adventure food I'm trying tonight after not liking it too much when I was a kid . . . meatloaf.  Baked ground beef here I come!