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!

Good News! My Tumor is Weird!

Today was my first day of seeing Dr. Wagner for my chemotherapy, and I am happy to say that prescription-wise it was uneventful.  I only have two more pills that I will be taking, and one of those pills is an antibiotic to try and be proactive against any possible future infections.  Here is me with my daily line-up:

Only two of them are supposed to cause the nausea/compromised immune system, however every single one causes dizziness.  Even the anti-nausea pill itself! (There is some irony there).  It could be humorous to watch me walk after a couple days.  Who needs a New Year's Day celebration when you have a dizzy pill prescription for a good time?

The main question I had for Dr. Wagner today was how much I should limit myself around others.  His answer?  "Avoid anyone who is sick or could be exposed to those that are sick.".  That is pretty much all of society.  So, if you would ever like to come say hello at my home, I will hide.  I would rather not have to stay at the hospital for a couple days because I caught a "cold".

There is also more news that is very, VERY, happy.  We got some results back from the specialists of the specialists on my tumor!  They are actually good!  Due to the slow growth rate of my tumor, it is officially being classified as non-cancerous.  YEAH!  However, it is still classified as anaplastic astrocytoma, which up until now has always been considered a malignant type of tumor.  As a result, they will still treat my tumor aggressively as they would a malignant anaplastic astrocytoma.  The specialists also did some genetic work on the tumor samples sent to them, and it turns out that my tumor cells had multiple copies of chromosomes 1 and 19 in them, which are not normal for my anaplastic tumor friend.  This means that my tumor has hit the weird category.  None of the doctors or specialists have ever seen this type of brain tumor before, so it will eventually be given its own name and classification.  Now that is cool.  James Dean, you deserve some congratulations for being rebellious, even from beyond the grave.  

It is an Obvious Resolution this Year . . .

My New Year's Resolution this year?  My goal is to beat this fracking brain tumor into the ground, with maybe a couple shots from a .50 caliber just to help it along.  (A bad word from Battlestar Galactica doesn't count as bad . . . right?  Yes, I'm a geek).  I have calculated it out, and I will be done with my chemo/radiation combination at the end of February/beginning of March.  So I'll be back at work at the start of March; knock on wood.  Then I will have my six months of my four weeks off and one week on chemo that will end right at September, the start of the new school year.  Perfect!

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).