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)