Costco Applesauce = New Best Friend

So, good news first; I had a wonderful time yesterday enjoying my last day out in public.  I know that soon my brain chemo drug will start to affect my immune system, and that will be combined this coming week with the normal chemo drugs, so I might as well enjoy myself while I can.  After this weekend I will view you all as potential virus and bacteria hoarders.  Sorry, my immune system and I are going to have some relationship issues.

Les Miserables was an absolutely awesome musical movie (it actually didn't cut out any of the Broadway music, which was nice), and Costco was Costco at its finest with free food samples everywhere and enough people to run them dry.  I also decided to make a run to Great Clips to get my hair its final cut before my chemo hits full swing.  Since I started my Temodar, I've noticed that all my hair growth has stopped.  Which is nice, (I haven't had to shave my legs in five days,) but it does imply that hair loss is coming once regular chemo drugs are added on top.  Plus radiation to the head guarantees hair loss, and I'm already getting that and beginning to notice a few more hairs leaving my head when I brush it in the morning.  So I went short.  The shortest I do believe that I have ever had my hair:

The hairstylist who cut it was awesome, she actually made it so it covers more of my scar than my longer haircut did.  Since I started this brain journey, I officially have had eight and a half inches of hair cut off.  Now I get why men like having short hair.  My hair brushing this morning was called "run hands to front of head through hair - done!".  The woman who cut my hair is also a cancer person; she has surgery later this week for a thyroid tumor.  I made sure to tip her very well, and let her know that there will be some prayers out there for her as well this week.

Now, the not so fun news.  I'm back on a anti-seizure prescription.  Since I started my radiation, I have been noticing random flashes of light, just like the flash from a camera, at odd times.  A couple times even with my eyes closed.  I now get why the famous find paparazzi annoying.  After talking with the docs, it was decided that the flashes I'm seeing could be one of three things:

1.  Seizures
2.  Cue that a seizure could be coming
3.  Damage to optic nerve that is just now appearing

So, I'm now back on my good ol' Keppra, and the flashes have not been a problem since.  My dosage is lower than before, but the pills are impressively large.  This is by far the largest pill I have ever seen in my life:

This is a pill that I cannot swallow with water, even cut in half!  So my Mom gave me the trick they use with the elderly . . . applesauce.  If I cut it in half and take a spoonful of applesauce with it, it goes down easier than my smaller prescription pills with water!  Plus it is a good excuse for a late night applesauce snack.  So my medical advice for all future large pill users; visit Costco and buy applesauce, A LOT of applesauce.  

Being proactive can be annoying

One annoying thing about brain tumors . . . you get the privilege to start some chemotherapy drugs before your chemotherapy actually starts.  

I get to take 150mg daily, through my entire radiation/chemo treatment of a drug called Temodar.  Woohoo! (can you sense the sarcasm?)  It is only given to people with brain tumors, so it gets to be started early.  It is an odd enough drug that the pharmacy doesn't even carry or receive it, so this nice and expensive prescription was granted being shipped directly to our house the day of my first radiation treatment.   I have to say, I do believe that I received some better Christmas gifts than this from UPS.  Here is a picture of my new drug:

My Temodar manufacturer was kind enough to send a seven page packet listing off almost anything someone could want to know about it.  I learned that its potential symptoms are:

• nausea and vomiting.  Your doctor can prescribe medicines that may help reduce these symptoms.  

• headache 

• feeling tired  

• loss of appetite   

• hair loss  

• constipation 

• bruising 

• rash 

• paralysis on one side of the body 

• diarrhea  

• weakness 

• fever 

• dizziness 

• coordination problems 

• viral infection 

• sleep problems 

• memory loss 

• pain, irritation, itching, warmth, swelling or redness at the site of infusion  

• bruising or small red or purple spots under the skin 

Whew!  Now that is a list!  So far after three days of this drug the only thing I have noticed is the headache, nausea, and loss of appetite.  I will say though, this is one drug that takes the nausea symptom to the next level.  The first night I took this I was pretty sure that the next Indonesian tsunami was about to take place in my stomach.  Thank God for an anti-nausea prescription!  However, on the happier news-front, I had a blood test, and so far it the Temodar does not seem to be affecting my immune system enough to be a problem.  Yeah!  I also only take the Temodar five days a week, so I'll have this weekend to relax radiation and Temodar free.  Double yeah!  

I do believe I am now going to go and celebrate my soon-to-be weekend off by drinking some hot chocolate with a "few" extra marshmallows.  

Insert Staples Slogan Here

One radiation treatment down, six more weeks to go!  Today I had my first radiation treatment, and to quote Staples, "that was easy".  They actually were very caring today at the radiology section of the hospital, they met me today with a counselor, which was very thoughtful.  However, the counselor seemed very confused when I told her I was happy to start treatment and ready to get going.  I have a feeling that is not something she is used to.

The treatment itself today was actually pretty boring.  They led me to the radiation room, and started to explain how everything worked.  Those people must really be used to getting some special folk back there, I had to reassure them a couple times that I was okay since I wasn't having a nervous breakdown like I think most of their radiation customers do.  Here is a picture of the radiation room that I was in:

Next they strapped me in with the help of the face mask that was made last week.  Since the radiation is being done on my face, and I am wearing a face mask, no tattoos were needed!  I was thinking that more of my head could possibly get shaved so tattoo markers could be put on, but they just made similar marks on my mask.  Booyah!  Now maybe my mohawks can get a chance to grow out to a non-mohawk point in their lives.

It only took about six or seven minutes to get me all set up, then they headed out and locked the thickest door I've ever seen to begin the actual radiation.  They did radiation at five points on my head, with nine releases of radiation.  I guess some points get extra-special treatment.  They will be doing the radiation at these points for my full six weeks of treatment.  My eyes were closed the whole time since my face mask fits so tight, but this was still a load better than putting up with an MRI.  It took them about twenty minutes to do the radiation (I got to rock out to Beetles music while they did this), then they came in to release me.  The mask left lovely scale marks on my face that were almost as good as the ones it left when the mask was created.  I managed to get a picture of the thick radiation door on my way out:

I left feeling . . . normal.  Wasn't tired, wasn't sick to my stomach, wasn't dizzy; just . . . normal.  I am very much hoping that this feeling continues through my whole treatment.  I asked Dr. Stille about it, and he said "It is different for every patient".  It was a well given indecisive answer.  

I have two more radiation treatments this week, followed by the weekend off.  Yeah!  My official start of chemotherapy is January 3rd with Dr. Wagner (excuse me, his identical twin) next week.  Let my radiation and chemo treatment commence!  (Pomp and Circumstance would be good music here)

I Really Should Visit Vegas Sometime

Today is called a I'm feelin' lucky day.  It is the day before Christmas Eve, and I am feeling more blessed then I thought could be possible.  So far this holiday season I have . . .

-  survived brain surgery to remove a major (and still debatable) cancerous tumor, with no problems to speak of physically afterwards except for one special eyebrow
-  was moved out of the ICU after three days, so I could have Thanksgiving food in the regular part of the hospital
-  got out of the hospital a week early
-  only had one complication thanks to an allergic reaction from an anti-seizure drug (I have now been off all anti-seizure drugs for a couple days, and am still seizure free!)
-  discovered that my insurance is better than I thought, and with all the paperwork we have received from them, things appear as if they could be manageable (still haven't received an actual bill from the hospital, for either the surgery, post-op stay, or my two ER visits, so we're keeping our fingers and toes crossed)
-  been given absolutely incredible donations from our church, Marion, friends, and family to help with the upcoming bills
-  a phenomenal husband who has discovered his own support system of friends to help him manage everything happening
-  incredible friends and family who have been doing everything they can to make this the easiest they can for me, and certainly a memorable experience (in a good way).
-  made it to my first church service post-surgery today, and now have the goal of making it to one of the Christmas Eve services after enjoying it so much
-  still managed to bake everything I normally do at the holidays (fudge, divinity, ginger snaps etc. - the house smells good!)

I'm more of a knife and a bowl type of decorator, but Rock goes all out

Thank you everyone for your incredible support of both my husband and I during this holiday season.  I'm beginning my radiation the day after Christmas, and my chemotherapy the week after that.  I figure that the radiation and chemo have got to be easy after everything else that has happened so far this year.  I'll make sure to let you know how my first radiation treatment goes, and in the meantime I'll continue to hope for blonde or neon-green hair.

The Oncology Doctor Duel Continued . . .

Today in Grey's Oncology (imagine slow, but dramatic piano music) . . .

The first event is that Dr. Stilles has won the duel at twenty paces with his Flintlock.  My first radiation treatment will be at 1:00pm the day after Christmas.  YEAH!  (I really am happy, I'm actually not being sarcastic; I want to get this over with already!)  Luckily, Dr. Wagner had a hidden identical twin brother who was having an affair with Dr. Stilles' mistress, so he heard about the original Dr. Wagner's death.

The identical Dr. Wagner has reluctantly agreed to begin my chemotherapy the week after I start my radiation.  We hope he earns his doctorate in that time.  Only one of the original wives of Dr. Wagner know the truth about his identical twin, but she will keep her silence as long as his current brain tumor patient doesn't have to play phone tag again with the secretaries of both the doctors.

Next time, on Grey's Oncology (slow, dramatic piano music again) . . .
-  the secretary recovers her AMNESIA and remembers she doesn't love Dr. Stilles
-  surprise appearance by Dr. O
-  the original Dr. Wagner lives?
-  what does this ominous message mean for the characters of Grey's Oncology?

Today in "Grey's Oncology" . . .

Today has been the day of the soap opera "Grey's Oncology".  First thing I did today was call up Dr. Stille's radiology office because they had not gotten back to me with a definite date as to when I would be starting my radiation next week.  AMNESIA!  After some confusion, it was established that they had not contacted me because they wanted to started my radiation Wednesday, but my main oncology doctor (Dr. Wagner) wanted to see me first.  Dr. Wagner's office people had forgotten that I was due to start next week.  AMNESIA!  Dr. Wagner is not working at his office Wednesday and Friday next week, which is when he must be seeing his second and third wives (who don't know of each other's existence, of course).

So, currently in Grey's Oncology:
-  radiation starts on Wednesday (if Dr. Stilles wins the duel at twenty paces with Dr. Wagner).
-  chemotherapy starts before radiation (if Dr. Wagner can successfully continue his charade with his three known wives, after surviving the duel with Stilles).

I don't know about you guys, but this is turning out to be one amusing soap opera.  Maybe if it is delayed a day I can actually see Les Misables in the movie theater.  Then I can say I know more French than "charade".

I played with foam today

Today it was a trip off to the radiologist (Dr. Stilles) again.  The mission was to make a CT scan map of the inside of my head, and make a mold of my face.  The mold is so that whenever I come in for treatment, my body will be in the exact same position when they aim away with their radiation waves.

Half the people I talked to kept telling me how terrible this part was, how long it took, how painful the mold was, and how it was by the far the worst experience.  Well, I'd hate to tell you, but this was actually quite pleasant; a mini-trip to the spa.  They set me all up in the CT, sent me through, then met me on the other side with a hot foam grid that would be stretched over my skin.  I'd hate to tell people they were wrong, but if you told me it would hurt, you were wrong.  The water wasn't any warmer than what I would take a shower with.  Then, as my face mold cooled and dried they conducted the CT (which MAYBE took fifteen minutes, not the hour I was told it would).    There are waaaay too many negative people in the world, this was by far the easiest step I've had in my brain tumor removal saga.  The only weird thing was my face afterwards; I had a great impression for a couple hours of the foam mold on it:

My husband and I went straight to the grocery store afterwards, and I wonder how many people were curious as to the plastic surgery I had done on my face.  The skin on my face is sadly back to looking normal now, so no more foam face fun for a bit.  It does look like the next time I'll use my face mold with be a day or two after Christmas; that is when my chemo/radiation is due to start! (As long as I don't have an extreme allergic reaction to some other medication, knock on wood)

Snow inside is the way to go

Today was my official last visit at the Family Urgent Care.  I was given my last cocktail of steroids, Benadryl,  and anti-nausea, and had my "permanent" IV piece that made a home in my arm removed.  Now I won't have to take showers with Saran Wrap anymore!

Not all of my allergic reaction has left.  It is completely gone in my every where in my upper body except in my hands.  My legs and feet however are still happily hive filled, but no new hives are forming and they no longer itch.  My Allied body has finally taken the initiative and is combating the Axis!

One interesting thing I have discovered about this allergic reactions that that when the hives leave, it is absolutely wonderful for about a day . . . they it gets fun again.  Any skin on my body that had hives, and has now lost hives is peeling off.  Great.  Just great.  I thought I got over this when the swelling went down post-surgery.  I've started taking two showers a day so I can scrub at my peeling skin, otherwise it is like an indoor snowstorm where ever I walk inside.  Kids might think that cool, but I do not.  So far my face is the worst, I could probably pass for a burn victim with the amount of indoor snow it is showing.  I would post a picture, but I just took another shower and conducted another session of scrubbing.

On a happy note, I went shopping yesterday . . . with a girl!  (Thanks Ashley!)  We made a trip to the mall where we did a missionary hunt for items that would work as head scarves.  I know for sure that between the radiation aimed at my head and the chemo that hair loss is in my future, and I am refusing to wear wigs.  If we went deer hunting we would have just come back with one that had the most impressive rack in history!  We were able to find seven different scarves, one patterned with a neutral black, another patterned with a neutral white (but with sequins:).  It was a complete success!  One our drive home we stopped at Panda Express.  We then came home, we both curled up on the sofa with our food (I had my prayer shawl as well), and watch Despicable Me.  It was a perfect girls day.

To continue to saga, I was finally able to meet with Dr. Stille (my radiologist).  I passed his physical, which did surprise me since I was covered in hives for the most part still.  However, he was very clear that he will not do any radiation therapy on me at all until my allergic reaction is completely resolved.  He also still has to have his artists make a mold of half of my face so that there is always never a doubt where to set my head during treatment.  Now that sounds cool.  I'm headed back to Dr. Stille's office on Tuesday for that mold to be made.  I hope the stuff they use to make the mold isn't cold, it is winter up here after all, so warmth would be nice.

Murphy helped

I am now off to add some of my own festive and non-traditional snow to the Christmas decorating in the house!

RIP allergy, you will not be missed

It's official!  My allergy is being defeated!  With my two daily visits to Family Urgent Care about a third of my hives have ran for the hills!  My neck, most of my chest, the bottom of both my arms, and the bottom of both my feet are now clear and free.  The Doctor thinks that we successfully got my body started on taking this allergy on, so we'll do one more poking me session, and then I'm done!  It will probably take three or four days to get rid of the rest of the hives.

If you haven't guess it yet, as a result of this allergic reaction tmy start of chemo/radiation had to be delayed; for some crazy reason they don't want to treat people encased in hives and itching like they are covered in Itchy Scratchy Land. (you'll get it if you watch the Simpsons).  I unfortunately had to cancel my two and a half hour meeting yesterday with Dr. Stille as a result of this, he however wants to reschedule it before I even fully get rid of all of allergic aftermath.  This will be a true test of what shape I'm in.  Maybe I should come dressed as Angelina Jolie.  Or not.  I am one of the many women in the world who wishes for her body, but will never receive it.  Tomorrow at 9:00am will be the big rescheduling , and it sounds like we'll around the middle of next week.  A week delay for a week long allergy, seems reasonable.

On another happy note today, I found out that Marion School is doing a benefit dinner to help raise money for my hospital treatment.  WOW!  Marion is a small school in a small town, and I've only taught there for five years!  The people there in the school and the community really are incredible.  The bill from the hospital is one of the few things that we have yet to receive, and is the one that we are the most nervous about, so this act of kindness is incredible.  Marion is a K-8 rural school, with material that needs some updating and improving.  So if you do not live in the area, please donate not to the dinner, but to the school and the students to show thanks, I would really appreciate it.

Marion School
205 Gopher Ln
Marion, MT 59925
406-854-2333

Ending on that happy note, I am now off to decorate the tree (with the cat's assistance of course).

If you shoot me, you're guaranteed a bullseye

When I do allergies to medication, I DO them.  We were supposed to meeting with Dr. O yesterday morning to discuss possible solutions to my allergy, but instead I woke up with a pretty impressive fever.  As a result, Dr. O sent us to the ER instead.  They brought the fever down and loaded me up on enough Benadryl that I fell into a state that would make a zombie proud. However, it did nothing to lower my itchy symptoms.  Dr. O thinks for sure that it is phenotonin (I think that is what it is called) because 80% of new users have an adverse reactions, just not quite as big as I am managing.

So now I get to go and see a doctor at "Family Urgent Care" (next to the hospital) every day for about a week.  I get to have an IV full of steroids, anti-nausea, and Benadryl.  I have now become a human pin cushion.

Two of the spots are rebellious

On a happier note, the swelling on the left side of my face is gone.  It does however make it next to impossible to wear my glasses since they have been morphed into so many different shapes.  However, I still cannot move my left eyebrow, so it looks like that is the one piece of permanent damage that received from my brain surgery, a messed up eyebrow.  I can live with that.  And now it will be pretty easy to make a student laugh when ever I want to.  I could be the next big actor if I wanted to now.  Here is just a small sample of my work:

happy face

crazy face

Yup, acting could be in my future.  Well, I'm off to take my next round of medication, I hope that none of you lose function of your eyebrow so I have no competition to show my excellence.

Keppra here I come!

Well today was a trip to the hospital for testing.  My allergy has continued to get worse, not better.  I now have hives around my eyes and all over my hands.  Today a mortified nurse when she saw my hives took blood samples for liver, kidney, and anemia.  The hives still itch, but many of them are now starting to hurt since they have swollen so much (they are very unique looking bruises).

Since I am having such an extreme reaction, I have an appointment with Dr. O tomorrow morning at 9:00am.  I just want to scream at him that it is the Keppra I am allergic to, which is why I'm still reacting.  Doctors are wonderfully book smart, but certainly lack in real-life smartness.

ER doctor, nice. ER specialists, need some help.

I'm back from the ER!  They dosed me up with every anti-allergy medicine under the sun, and nothing worked.  The poor doctor wanted so bad to take me off of my Keppra (one of my two anti-seizure meds), but discovered that the specialists he had to talk to are extremely stubborn.  Dr. Zlogar gets big kudos for his efforts with me last night, but I really wish that he could have been able to do more.  Here is how my skin with its allergic reaction looked in the ER:

My skin has chosen to continue to react to my Keppra prescription, so now my arms, legs, and my head (even under my hair!)  are completely covered with itchy hives.  For now Dr. Zlogar prescribed the EpiPen, Hydroxyzone HCl, and Ativan for me.  The EpiPen was prescribed just in case this allergic reaction starts affecting my throat, the Hydroxyzone HCl is like doped up benadryl (THANK YOU!!) and the Ativan is to help me sleep.  Ativan really does work, I slept for ten hours last night with my itchiness spreading.

I am now off to take an oatmeal bath and cover myself in aloe vera.  I won't exactly be the most attractive woman today, but I'll be the best at itching in the room.

...and you were there, and you were there...

Hello again! It's Rock filling in for Shannon. Yes she's back in the hospital again, this time the ER for some nasty side effects of her medications (we think its one of the anti-seizure meds). She has some wonderful hives like the ones she gets from sulfa, so they're giving her the 'good' steroids, benadryl, and pure adrenaline. She still is itchy but she wants to run a few laps.
     So tonight will be a fun night, I got to drive fast in the snow. She was not in the vehicle at the time, though her shrill cries of terror would have made due as a siren. Sadly a lack of a working e-brake (despite her illusions that it does something) and her nice snow tires made it far less exciting.
We just have to make it through Sunday before we can meet her favorite middle-european doctor and discuss alternative meds.
So prayers for good meds, good doctors and non-itchy sheets.

P.S. She's updated her status to "Twitchy and Itchy"

Please work Benadryl, I swear that I love you

Well, we knew going into this that I was allergic to sulfa medications, so the doctors have made sure that they have not prescribed any that met that criteria.  Apparently I'm allergic to something else as well.  Last night when I went to bed I noticed little bumps forming on my arms that itched.  This morning, I am completely covered in itchy bumps from head to toe; literally.

We contacted Dr. Wagner via phone, and he suspects that one of the two anti-seizure medications that I am taking are to blame (that I of course cannot go off of).  It is also suspected that the reason this is not happening until now is because the steroid I have been on to reduce swelling has been in the process of gradually being removed.  Two days ago I was "lucky" enough to begin taking just one steroid pill a day.  Right after surgery I was taking four a day.  It is thought that the steroid pill was helping to suppress my allergic reaction.

Now I am itchy.  Very, very ITCHY.  The best think I have discovered that helps is not anti-itch cream but aloe vera (like what you put on a sun burn).  Right now I love aloe vera more than chocolate.

The doc right now has me continuing to take the anti-seizure medication (it is a bit important), and back to taking four steroid pills a day.  I am also taking some good old store brand Benadryl every four hours.  If my allergic reaction has not improved by tomorrow, I get to call the doc back and "take the next steps".  We'll hopefully not have to see what that means.

Well, I am now off to take a cold shower and apply the next layer of aloe vera.  I will work hard on my non-itch skills in the meantime.

And we have a name!

This one is for you rebel James!

After much waiting we have some information from the specialists of the specialists!  There is still no news on  if they consider it cancerous like my current doctors do, but we do have a name as to the type of tumor.  It is:

anaplastic astrocytoma!  
(think Jeopardy music)

Here is some information on what astrocytoma is:"Anaplastic astrocytoma is a primary grade III (malignant) brain tumor. Anaplastic astrocytoma comprises about 4 percent of all primary brain tumors diagnosed in the United States. An anaplastic astrocytoma can start out as a grade III tumor or be a reoccurrence of a lower-grade, previously treated grade II astrocytoma."  (mybiopsy.org)

However, my tumor still holds its James Dean status.  Normally anaplastic astrocytomas are quick growing, but my tumor has been in existence for an estimated five to ten years.  The fact that mine is so slow growing is what brings some doubt to the cancerous diagnosis.  Otherwise though, my tumor meets the anaplastic astrocytoma status pretty well.  I of course have to get one of the more rare types of brain tumors, and I have also learned that it tends to happen more in men than women.  Go me!  That's what I get for getting a mystery men's tumor in my brain; now the odd will always happen to me first.  

A personable doctor? They do exist!

Today I was able to do yesterday's goal and see my oncologist, Dr. Wagner.  I am now pretty sure it is his secretary that messed up my appointment date and time; she has only been a secretary for about two weeks, so she had to be shown how to do everything that involved a new patient.  However, Dr. Wagner gets major kudos for his waiting room.  There is a big table in the middle of it . . . with a puzzle!  The twenty minutes we waited flew by as my husband and I committed ourselves to a personal battle against that puzzle.  (A battle which we lost since between the two of us we only found spaces for five pieces.)

Dr. Wagner himself is an immigrant from Hungary, so he has a strong accent that makes him sound like a scientist from a horror movie.  Just think of a cancerous Frankenstein.  However, he is very friendly and personable.  He was able to answer all of my questions without batting an eye, and repeatedly asked if I had any concerns with my treatment or with the cancer in general.  He also let my husband and I know that he looked at my MRIs with Dr. O and was in shock at that size of my tumor and how much was able to be removed.  He wasn't able to spot any leftover tumor in the MRIs or the CTs.  YEAH!  But, we are still going with the planned treatment "because it is not visible does not mean that it is not there" (imagine that said with a Hungarian accent, I had to restrain a giggle).  Here is the plan:

I do believe that most doctors would fail an English class.  Anyway, I will doing my radiation and chemo at the same time beginning in about a week and a half.  For chemo I'll be taking 48-50mg Monday through Friday, which is pretty low (yes!).  My initial treatment with the chemo and radiation will last six to seven weeks.  After that, for six months I'll continue my chemo; four weeks off, and then one week on 280-380mg.  I asked if I would be able to return to work after my six to seven weeks of treatment, and Dr. Wagner said that they would take some blood samples to see then.  Apparently I get to give blood samples every two weeks.  Anyone have any men in their lives they want to see on the floor?  If they come with me to Dr. Wagner's it can be arranged.

I passed Dr. Wagner's physical with flying colors.  He was really surprised that I did so well since the surgery was just two and a half weeks ago.  He has no doubt I'll pass that two and a half hour physical at Dr. Stille's next week.

Open wide . . .

Unfortunately there is still no word on my tumor sample that was sent off to the specialists of the specialists.  My James Dean continues to be its rebellious self, and I continue to be hungry.  Dinner, here I come!

my tumor could have done better

Today is a story of extreme annoyance.  Originally today I was going to meet Dr. Wagner, my oncologist, at 1:45pm for the first time.  (Oncologists are doctors that specialize in treating cancer).  Well, my husband and I show up at 1:30, only for the secretary to look at us confused when I give her my information.  I found out that my appointment was not scheduled until tomorrow.  At 2:00pm.  At this point I'm embarrassed, thinking that I wrote the date down wrong on the calender or read the email wrong that included this information.  I'm beginning to wish that the brain operation had destroyed some part of my body so it might be a little easier to hide at this point.  Well, I get home and check the email sent to me by the secretary at Dr. O's:

What I had written on the calender was correct!  My memory had not been affect by my surgery!  This means that the secretary at Dr. O's either gave me the wrong time and date, or that the secretary at Dr. Wagner's changed the time and date without notifying me.  I don't know which scenario happened, but be warned secretaries of doctors, I deal with mostly unorganized teenagers as my job.  If you can't find a way to get organized, I will assigned you a locker and a planner and begin grading your organization methods.

Since I am home much earlier than I expected today, I'm going to make today day one of "Thank You Letter  Day".  No one seems to write thank you cards any more, and that is just impolite in my opinion.  I still have thank you cards from our wedding, so finding cards will not be a problem.  However, I have found that we only have one stamp . . . and the stamp is from Christmas . . . of last year.  Oops.  I do believe that a trip to the post office is in my near future.  Oh driving, I do love you.  (I really do)

The world might be ending; I like teaching teenagers

I met my goal today!  Today I went back to Marion to let the students know what was going on with me, and I managed to do it without crying!  A couple times students teared up, but once I let them know that I wanted my hair to grow back blond or neon green they giggled and were okay.  The sixth graders seemed to be in shock, the seventh graders just seemed worried, and the eighth graders wanted to know when I would be teaching science again.  The best questions I was asked:  "How does hospital food taste?"  That was sadly very easy to answer.  I am also happy to say that all the boys thought my staples were cool.  Teenage boys are apparently tougher than adult men.  It was also wonderful to be able to see other staff members.  Here lately the only adult interaction I've had has been with the NCIS marathon on television.  However, I will happily put up with the adults in Castle tonight.  (Sorry, but no pictures today.  I'm not a huge fan of putting kids pictures up online.)

In the mail today we also received our very first bill associated with my James Dean.  The bill is for my very first visit that ominous Friday with Dr. O.  The bill ended up not being the death of us, which was a very pleasant surprise.  My insurance paid  $90.42, so we only need to pay $22.60.  I can do that!  The insurance classified my visit as "neoplasm unspecified", which has got to be the most broad based explanation that exists, but I'll take it.  I'll take any payment under $100.  Now to wait for the hospital bill.  I'm betting that it will be at least $700,000 without insurance included.  Any guesses?  I promise you bragging rights if you get it correct. :)

I also got the biggest envelope I've ever received in the mail today.  My oncologist (Dr. Wagner) that I'll be meeting on Wednesday sent me the biggest set of medical history papers that I've ever seen.  Twelve pages!  Double sided!  Two of the pages are just questions for women, while the men only have one extra question.  Sometimes I wish I was male.

Well, it is off to today's NCIS marathon I go.  I'll make sure to let you know how my appointment with Dr. Wagner goes after I have it on Wednesday.  Hopefully he is more personable then his twelve page report.  

Losing hair, but gaining a mohawk

Today was my first day to head out to a public even since surgery.  A friend of ours from church who lives nearby got Rock and I tickets to the Christmas brunch at church (thanks Eleanor!).  It was a wonderful event, until I had a coughing fit and had to escape out of the room through the singers.  I am completely ready for my irritated throat to be done.  I know, I know, I needed that tube to breathe during surgery, but boy is it a pain to deal with afterwards.

After brunch Rock and I headed off to the highlight of my day . . . a haircut!  I've always been wearing a hat when I head out of the house because my scabby scar is so visible right now.  I got an awesome hair lady who first thing she did was let me know that she could not cut it all the way because there is a law against cutting hair where ever there is an open wound, and my scabs counted as "open".  Apparently blood can be a bad thing in an otherwise "clean" hair facility.  But she was kind enough to go as much as she could.  I ended up losing a grand total of 5 1/2 inches of hair, which is WONDERFUL!  She layered the hair so it bounced out and let me know that I had some great mohawks of hair as well where the hair was just growing back in.  No, I will not dye any of my mohawks.

On another note, my face might just suit a mohawk right now.  The swelling on the left side is just now beginning to go down, so it is revealing some epic skin.  I have three green/yellow bruises, and my skin is peeling off.  My skin was stretched so tight that some of the upper layers died, so now that the swelling is decreasing it is starting flake off.  Gross.  However, it is a good time killer.  When I get bored I can just go to the bathroom and do some peeling on my forehead.  It makes my husband squirm. :)

Oh!  We also have a tentative date as to when I will start radiation/chemo.  It is the 13th of December.  I will get a huge physical that day which will make the final decision.  They don't want to start killing off any new cells in my body until all the injury done during surgery is completely healed.  Don't worry, I'm sure I'll have some good commentary on that 2 1/2 hour doctor's appointment when it's over.

I also came to the realization today that I am incredibly lucky.  I was originally supposed to be released from the hospital this next Monday, instead I got out almost a week early.  I'm pretty sure I would have killed someone if I was still in the hospital at this point.  So thanks again everyone for all of your prayers and help, the Big Guy's support has been truly needed the last few weeks.

Now I'm off to watch my husband play Halo.  Ugh.

 

Dr. Remmington, cute, but taken

Today was my first visit with a doctor other than Dr. O post surgery.  Dr. Remmington is his name! (imagine that said to some music).  Dr. Remmington is an eye doctor that I was sent to in order to see how the vision is now in my left eye.  Vision in my left eye was what cued the MRI that discovered the tumor in the first place.

I am happy to say that my left eye vision is back to normal!  Before surgery Dr. Remmington declared my left eye blind.  Both Dr. O and Dr. Remmington thought that there would be permanent damage to my eye since the optic nerve going to it was in such bad shape, but we discovered today that all the swelling is completely gone.  After radiation and chemo Remmington wants to see me again so he can give me glasses with a new prescription my left eyeball has improved so much.  Booyah!

The big news . . . to get to this appointment I drove the car.  I never thought that using up gas money would feel so wonderful.  I also was adventurous and put on my first "normal" clothes since surgery.  Sweatpants and sweatshirts are comfy, but after awhile jeans are needed to feel normal again.  My husband also really needs to work on his picture taking abilities.  Murphy (the cat) takes up more the picture than I do:

Off to dinner I go!  Tomorrow will be one of my last days without something else doctorish going on, so I am going to enjoy tonight and tomorrow.  Thanks for the chicken and wild rice Jessi; it is delicious!

The good, the bad, and the ugly

My staples are out!  After being told there were just twenty of them, I didn't think this would be a big deal, but apparently people involved in medicine need some help counting.  I actually had 43 staples, so it took about thirty minutes to get them all out.  Pulling out staples surprisingly does not hurt very much at all, but thanks to the fact that the staples were on my head makes it a very messy process.  I now have some of the most impressive scabs I've ever seen in my hair.  I also discovered that Dr. O is an avid fly fishermen, since him and Rock had an engaging conversation about how the instruments he used to remove the staples and stitches looked a lot like equipment used fishing.  Ewww.

I'm free!

The best news of all of this is that I can now take a shower normally!  I am supposed to let the staple wounds in my forehead "breathe" for 24 hours, then I can scrub them shampoo as much as I want.  I am considering walking down the aisle in a store with the staple wound visible just to see how many men I can get to collapse. (They did let me keep the staples :)

On another note, my tumor sample sent off to the specialist still has not been returned.  Apparently the specialists sent it off to specialists of the specialists.  It has now hit the point where it could take up to a month since my James Dean tumor is so obnoxious in its indecision.  So, the tumor board decided to go ahead and meet.  

This is where news is not all good.  They have made the decision to classify my tumor as cancerous.  Ugh.  As a result, I am going to be having radiation and chemo treatment.  Double ugh.  That means I am now graduating from Dr. O onto Dr. Wagner, Dr. Remmington, and Dr. Stille (pronounced "style", not "still/steel".  Pronouncing it "steel" would be cooler after Remmington though).  I have my first appointment tomorrow with Dr. Remmington.  All I know so far about treatment is that they plan on being really aggressive with radiation (5 days a week!!) and will be less aggressive with chemotherapy.  It will be mostly outpatient with low dosage.  

Well, sorry it couldn't be all fun and humorous news.  Just know that should the chemo be strong enough that I lose my hair, I want it to grow back either blonde or neon green.

Brainy pictures!

After much bugging of the MRI/CT people, (and a $15 fee), we were able to get copies of the reports and pictures generated by my multiple visits to those obnoxious machines.  I'm pretty sure that by the end of all this I will have had a pretty extensive love affair with the MRI machine.  First of all, tumor size.  According to the first report my tumor was "10 x 6.3 x 5.4 cm area of edema  predominantly involving the left temporal lobe." That is HUGE!!!!  I thought that the doctor was a bit negative by saying how it was a miracle that I had never had a seizure, now I agree with him. When I do tumors I don't do them half way.  Here is a picture of my pre-surgery MRI.  The tumor is on the right:

It is pretty gross to look at, but also sooooo cool.  Is it bad that my first thought when I finally saw these images today was that they would be an excellent teaching resource in my science classroom?

I was also able to get the MRI images of my head post-surgery.  I never thought I would be so happy to see a hole in my brain.  The white area is where they had my drainage apparatus installed.  Some of the MRI images showed my staples, but I didn't think the men out there could handle it :).

On another note, the meeting with the "tumor board" that was supposed to happen tomorrow was delayed until Wednesday.  They have yet to receive the needed report from the specialist committee that they had to send my tumor samples off to.  Since my tumor had decided to be so obnoxious with all of its indecision, I am now going to call it the "rebel-tumor".  It will put up with being mostly removed, but not fully removed; cancerous, but not cancerous; loving blood, but hating quick growth.  Stupid tumor.  

I don't know the Wizard of Oz very well . . .

Time to make my first entry now that I am officially home and out of the hospital.  I never thought I would appreciate home so much!  I mean, don't get me wrong, I always loved coming home to our house, but now I come home to showers, real food, and incredible friends and family.

One big adventure that I was looking forward to was washing my hair for the first time.  I was told by Dr. O that I could do it as long as I kept the staples as dry as I could.  That is what Moms are for.  So, much like a child, I was ushered over to a water filled kitchen sink to have my hair scrubbed.  Through this washing we did discover that all twenty staples are perfectly straight, except for three at the end of the staple line.  Maybe they were done by my very exuberant anesthesiologist.

Mom brushing out my hair after the washing

 On that note, I am also going to quit my teaching career.  Now that I've gotten a good look at the staples on my head, I realize that those staples look remarkably like that staples I use to hold together work in my classroom.  I am going to begin reselling those staples in my classroom to doctors in order to make a couple million bucks.  Maybe I'll even offer to staple them in a straight line for small fee.  

We also discovered through inspection of my staples by a nurse before I left the hospital that some men are just . . . wimps.  My friend Jessi (who is pregnant none the less) leaned over to take pictures and document what it looked like; her husband left the room because he was feeling queasy.  Our friend Nick left the room only to lose consciousness next to the nurses' station.  Apparently us ladies are tougher when it comes to blood and guts.

There's no place like home

We're home! Now the recovery can begin! Thanks to everyone for their support we'll be updating as her recovery progresses.
She'll take care of her OWN blog now. Rock, signing off!
-R

...close your eyes and click your heels

We are so close to home! The doctor and nurses said that tomorrow, if blood work is good we can take Shannon home. Just going to have to wait for the doctors final approval, which may take awhile.

Finally got some photos of the cut they made (thanks Jessi!). Sorta makes her look like a baseball with all those staples. She has alot of hair left which means dry shampoos and hair nets are in our near future. Probably be a few weeks till she can take a normal shower.

What a world, what a world!

Well its not good news but its not bad news. Our doctor told us its a type 3 tumor. But its a funny type 3. It has developed arteries but its very slow growing. It is large but the cell density is very sparse. We are going to have radiation but chemo is in question. We are waiting on reference for confirmation, but there with be meetings with the tumor board. Doesn't sound pleasant.

Good news Shannon gets to go home tomorrow, as long as she behaves tonight. She's enjoying friends visiting, such as her friend Jessi from Anaconda.

-R

Just click those ruby slippers....

Well, this is the first blog entry written by me, Shannon (transcribed by Rock), since the surgery. The first exciting news; I show no problems!  Yeah! All of my limbs, senses, and memories work as they should. My 6-8 weeks of recovery has been cut down to 3-5 weeks. I am also very happy to report that after 3 1/2 days I am out of the ICU. While i do get why i was in the ICU (it was brain surgery after all), i will not miss the ICU in the least: It was certainly "memorable".

Good memories
-sweetest nurses I've ever met
-visit by my extra quirky anesthesiologist
-friends sneaking in "unsterilised" gifts

Bad memories
-woken up every hour, on the hour, for tests of some sort
-a ton of IV's (literally)
-inflatable socks that exist solely to prevent blood clotting
-lack of a bathroom
-the "crazies" waking up in a room nearly
- laying, or sitting (sometimes),  for hours with an ice pack. I love being able to see out of both eyes.
- people panicking because something became disconnected
- food ( at least edible food)

....to be continued (my fingers are cramping).

Now i know i have a heart, cause its breaking!

I have worn a hole in my shoe, didn't know it was made of metal! Shannon is in a normal room now and they predict that she'll leave by this weekend. She loves her Thanksgiving meal and ate it all. She already did three laps around the nurses station. She's looking forward to the lab results and taking a shower.
She's all for visitors,  let me know so i can give you her room number. If you cannot make it but want to see her i might be able to Skype her or something.
We've really loved all the support and prayers we've received and our hearts are filled and overflowing for her surgery, recovery and future treatments.
-R

Put 'em up, put 'em up! Which one of you first? I'll fight you both together if you want. I'll fight you with one paw tied behind my back....

Today its all about getting to the next room. Shannon has slept for a whole two hours! And she is less blocked up thanks to some special medication. She's going for a walk later.
They readjusted her headband and gave her a sixties poof of hair out the back. We can see more of the surgery staples, looks like an upside down V starting from her left ear and ending around the peak of her head.
She has branched out this morning and has ordered cream of wheat AND applesauce. The in-laws are over for a few days, all it took was a brain tumor and surgery to bring the family together for Thanksgiving.

I'd unravel any riddle For any individ'le In trouble or in pain

Shannon is doing better and better (and looking better). She very much enjoyed a few visitors though it was a short visit. She has many cards and flowers from students and staff in marion school. Still having an internal traffic jam that has no signs of clearing. She still has "fun" remembering the drain coming out. Still won't let me get pictures of the scans for our medical friends. Apparently there is some program needed to interpret them, obviously they haven't heard of JPEGs. I will see about ninja-ing them from someone who doesn't want to be here Thanksgiving.

-R

If i only had a brain...

Shannon's drain was removed a half hour ago. She described it as the worst pain she's been in. Apparently there was a six inch tube, it was removed by the surgeon, whom while a very talented brain surgeon doesn't believe in local anesthetics. Even the nurse was frankly surprised.
Afterwards he did a single stitch, which was pulled tight and he snapped a new headwrap on her (as seen in the photo). And of course they let people in just after to see her.
She has ordered chicken strips for lunch. Sydney had lunch in the deli next to a crazy lady who kept laughing and talking to herself. I thought she was a nurse and was concerned.

-R

Lions and tigers and bears! Oh my!

Shannon's swelling is going down and they should be removing the drain today! Hopefully we can convince a nurse to snap some pictures of her head when they remove the bandages. Delivered an awesome care package from a friend, she was very excited about ninja socks and fuzzy slippers.
-R 

Back to the yellow brick road?

Shannon had some swelling in her left eye last night so they are keeping her in the ICU another day. She looks like she was in a prize fight. She is eating and has ordered food herself (more cream of wheat). She hasn't needed pain meds for awhile now. Afraid its another delay for visitors.

-R

Give me those ruby slippers!

Shannon already is eating (two bites of malt-o-meal, and two sips of OJ). Her bowls we're disgruntled and expressed them selves. She was having some irritating IV's so they removed the ones on her right hand and gave her a purple power picc line (no i didn't make that one up). From what they described they put an IV all the way up a vein and ran a tube into her chest so they medicine goes past her sensitive veins. Plus they can draw blood.
Pictures of her eating, right before the picc line, and of her hair. Still haven't figured out why they give you the hair in a baggie. Its not all they cut off, maybe they want to prove that your not bald, or not that bald. What would they do if you had no hair? Empty bag?

-R