Friday, July 30, 2010

Faith Rewarded

 I woke up this morning far too early because of a rogue alarm clock in our house that picks random days to go off.  Normally, I can fall back to sleep but that wasn't the case this morning.  I layed in my bed thinking of what all was going on today and fear began slowly creeping in.  I finally decided to get up and conquer the fear by journaling or reading my Bible or reading my devotions.  I didn't know for sure what I was going to do.  I just knew I needed to do something or I was going to spiral out of control.

I went downstairs, picked up my favorite devotional book, read today's devotion and sighed.  It was a "useless" writing.  So, because I was so near tears, I decided to journal.  With heavy tears, this is what I wrote...

"I’m scared this morning.  I am scared of the cancer in my brain eating holes like it is in my chest.  I’m scared of the cancer in my lungs making it harder for me to breathe and also making holes.  I am scared of whole brain radiation and the belief that I heard you tell me I won’t lose my hair.  How do these two go together?  I am scared of cancer.  I am scared I’ve heard you wrong all these years even though You keep confirming to me.  I haven’t seen any all.  I am scared that I won’t hear You tell me what to do next.  I am scared to face each day...fear of the unknown. I feel like I don’t even know how to get through this day.  I’m beginning to spiral.  Please don’t let that happen."

I stopped journaling and picked up me second favorite devotional book to read.  This is what I read...

"Faith Rewarded

Think much of My servants of old.  How Abraham believed the promise (when as yet he had no child) that in his seed all the nations of the earth should be blessed.

How Moses led the Children of Israel through the desert sure that, at last, they would gain the Promise Land.

Down through the ages there have always been those who obeyed, not seeing but believing, and their faith was rewarded.  So shall it be even with you. (emphasis all mine)"  (God Calling, A.J. Russell)

I didn't know whether to laugh or cry but reading these words, knowing it was a personal message from God,  immediately stopped me from spiraling!!  And now I can continue on with my day.


Thursday, July 29, 2010

The Brain Scans

July 29, 2010

I am totally spaced out right now but desperately want to get this out so I will plow ahead hoping I don’t have too many typos or grammatical errors.

As you know, yesterday I went in for a brain MRI.  I don’t know how many people were praying for me but it HAD to have been many because I was totally at peace.  No nerves, no anxiety, completely calm and not even afraid of the needle.  It was sunny outside (which sadly, has been an enormous rarity this summer) and I was feeling super positive and strong and honestly pretty confident that all was ok.

Part of the reason I was ok was because I read this before I went in for my appointment...

“You wonder sometimes why you are permitted to make mistakes in your choice when you sought so truly to do My Will in the matter.  To that I say, it was no mistake...all your lessons cannot be learned without difficulty, and this was needed to teach you a lesson.  Not to him who walks on, with no obstacles in his way, but to him that overcometh is the promise given.”  (God Calling, A.J. Russell)

I still get chills as I read it.  If I’ve made the wrong decisions along the way, it’s been purely accidental.  I’ve work so diligently on listening to God’s direction and I’ve always had Reed’s agreement.  I needed to hear this yesterday.  It was literally EXACTLY what I needed to hear.

Anyway, I don’t have the same tech issues at this facility as I do the other one so I wasn’t even concerned about that.  As a matter of fact, the techs at this place should be giving classes for “how to properly treat a patient” because they are amazing.  Gentle, understanding, polite.  What a concept. 

But no matter how great a tech is, they simply cannot change the outcome of a scan.  And mine were bad....really bad.  (Wow, this is much harder to retell than I thought it would be.)  I have 10 or so new lesions in my brain.  One is on my brain stem.  I will be going back in tomorrow for an MRI on my spine to see if there is any cancer in my spine or spinal fluid.  At this point, the “Tumor Board” does not believe there is any cancer in my fluids but if there is, than it’s also in the fluid surrounding my brain...not good. 

Dr. Duma (my neurosurgeon) and the Tumor Board are recommending Whole Brain Radiation.  Barf.  I have been begging God to speak to me in a loud undeniable tornado-like way so that I don’t make the wrong decision.  To those who may think, “Just do what the doctor says, it’s only radiation.” please don’t go there until you’ve walked in my shoes.  Many of these decisions are much harder to make than they appear on the surface.  This is one of those.  This one is super hard for me for reasons I’m not willing to make public right now.  Maybe later.

However, I am going in tomorrow for a consultation with the radiation oncologist so we’ll see.  What I know is that it would be at least 15 days (in a row minus weekends) of radiation to my brain.  And I know that I have to have a special mask made.  Nausea, hair loss, fatigue are all involved too.  Anybody remember Chernobyl?  I know this isn’t the same’s still a lot to take in.

So, that’s my day tomorrow.  Whole brain radiation consult at 12:15 and spinal MRI at 2:00.  Thankfully we have a fun evening planned or I might just choose to sit in a ball curled up on my couch and pout.  Not a good place for me to be right now.

Oh, and yesterday ended on a positive note of a movie, filet mignon and cake...chocolate and carrot!!

Tuesday, July 27, 2010

My Brain

Tomorrow, at 11:00, I go in for a brain MRI.  Mmm hmm, more scans.  Totally different facility though.  Here, they know what they're doing and they're nice.  No Jerks.  But I dread going because I really don't enjoy getting the results...unless they're good.  I meet with my neurosurgeon about 30 minutes after my scans are finished so I get the results before I leave my appointment. 

I am a bit nervous for a couple of reasons.  One...I've been having funky pain in my head so my mind has conjured up all sorts of false realities. this point after my first Gamma Knife treatment, new spots were found so I was scheduled for the second Gamma Knife treatment.  I was devastated.  I ended up at the beach with Reed, staring into the water, unable to speak.  I don't want a repeat of that day.  The pain in my head could simply be side effects from the last treatment.

I'm sending this out tonight to ask for prayer for a restful, stress free sleep and for my scans to show a beautiful gray mass with NO cancer spots.

On another note, I have not heard anything yet about the pharmaceutical study.  Oh, and I have a dentist appointment tomorrow!


Sunday, July 25, 2010

Results, Results, Results

July 25, 2010

On Tuesday, Reed and I went in for the results of the scans.  Basically, some things are slightly better some things are worse.  Dr. Link is mostly concerned with 2 new spots in my liver.  Some spots in my bones are worse too.  I never really found out what areas are better because our conversation quickly turned to the next treatment Dr. Link wants me to try.  The only problem is, he doesn’t have access to the drug.

Currently, there is a pharmaceutical study being done on a new non-chemo cancer treatment called a PARP Inhibitor.  What this drug does is literally change the DNA strand of the cancer cell inhibiting it from repairing itself.  All cells, whether good or bad, repair and replicate themselves.  Cancer cells are cells that have been damaged somehow.  They replicate themselves and cause harm.  Because the PARP drug inhibits the repair process, the cancer cells cannot replicate causing them to eventually die out.

I don’t know how long this study has been going on but the positive results are amazing.  It is believed that because the success rate has been so great (80%), the FDA will likely fast track it.  We’ll see.

Anyway, because I was in my 30’s when I was first diagnosed and because the cancer I have is less common, more aggressive and doesn’t respond to chemo as well as other breast cancers (I have Triple Negative cancer), I am a prime candidate.  However, because I’ve had more than three chemo regimens (I’ve had at least 4 regimens - each using 2-3 different chemos) that disqualifies me for the study.  It appears, however, that I am being given special consideration so I am again in the waiting stage.  Waiting for that phone call that will tell me what my next move is.

Half the patients in the study receive only the PARP drug.  The other half receive the drug and a chemo.  I’m really, really hoping I can be on the side that gets only the PARP drug!!  Please God.  But I’ll do whatever is best.

Right now, I feel really fortunate because I am totally at peace (thank you Jesus) and I have a medical team that will open every back door they need to get me into the study.  I am enjoying my “time off” and will just wait for that call.  The hospital has already called for my medical records so I’m thinking that is a good thing.  God is again telling me to wait on Him and continues to confirm the promise for healing. 

So, for now, I take my pain meds and enjoy the life I’ve been given.  A life that includes crazy boys, a husband who loves me, protective friends, and amazing parents and siblings (and their families!).  And for who knows how long, NO CHEMO SIDE EFFECTS!!!  Woot, woot!!!

Again The Scans

July 25, 2010

Again the scans...

As I’ve made abundantly clear in the past, I HATE scans....especially the PET/CT kind.  So, I was pretty impressed with myself a week ago Sunday night when I was totally at peace about the scans I had scheduled for early Monday (July 19) morning.  I even decided that I was such a big girl that I didn’t need anyone to go with me.  In hindsight...not so brilliant as I thought.  Oh well.

Here’s the lo-down.  As ALWAYS, I went to see “my girls” first to have a line started.  I refuse to have the scan techs put a line in me.  If you don’t know why, Angela’s Scans (January 2009) will fill in the blanks.  Since, I was at total peace Sunday evening, I was surprised to find out that my veins didn’t agree with me.  Apparently I was anxious because my veins were flat.  Yet somehow, my girl Tu...after some gentle digging...managed to make it work, as always.

So, I head next door to the imaging area, drink my yucky contrast drink, wait the mandatory 45 minutes for the drink to make it’s way through my system, then get called back to my little room.  Now, when I go in for scans, I make sure that I don’t wear anything with metal in it, on it, around it, under it, through it...because I DON’T want to change clothes.  I always FREEZE during the scans.  The rooms are kept at an Arctic temperature so even if it’s warm outside, I layer.  I was explaining to the male tech that “NO I don’t have any metal on any part of my clothing.”  He says, “well, I assume you have a bra on.”  And before I could explain that what I had on didn’t have any wire in it, he decided to check for himself.  UGGHHHH!!!  He didn’t even bother to ask.  Just decided for himself that it was OK to find out if I had any wire underneath my shirt. 


Then I tell him that I already have my line started and his ego gets all out of sorts.  He begins explaining to me that I can always trust him to start my line.  I try to explain - but he’s not listening - that I get anxious around needles and my veins collapse making it a challenge to get the line started.  He looks at my arm and starts counting all the good veins I have and then gloatingly states “I could do it.  You don’t need to go next door (to my girls).”  The dude’s pride is so injured that he doesn’t even take into consideration that I’m doing this FOR ME!!!  I don’t want to pass out again.  Please, my girl was challenged getting a vein that morning.  Can’t even imagine what it would have been like having Mr. Tech poking around in my arm. 

Prideful Jerk.

Now begins the 45 minutes wait so that the radioactive gunk can do it’s magic with the contrast gunk.  The wait is over and Mr. Tech comes in to take me to the scan room.  He  hands me another cup of contrast gunk to drink and, instead of waiting for me to finish my drink, indicates with a “gentle” push, that I need to get on the scan bed.  So, I’m sitting there trying to drink the gunk and Mr. Tech decides that my sweater needs to come off.  THERE IS NO METAL ON MY VERY LIGHT WEIGHT SWEATER.  Just much needed long sleeves.  Picture this...I’m sitting on the scan bed trying to finish a drink that tastes horrid and Mr. Tech wants my sweater off RIGHT AWAY.  He decides to remove it himself literally yanking it off my shoulders and arms WHILE I’m trying not to spill the gunk.  I have one free hand.  Smacking this dude across the face is something worth pursuing.  Oh...and my sweater is a long one so not only is he yanking it off my shoulders and off my arms but I’m sitting on it so I’m trying to lift up before it gets torn all without spilling my drink.  And with one useable arm.  Good thing I’m coordinated. 

Don’t touch my sweater Jerk.

The sweater comes off, I finish the drink so now it’s time to lie down and begin the scans.  I have blanket (remember, I’m in Arctic temps) on me but it only goes from just above my mid-section to my feet.  I place my arms above my head because they have to be.  Mr. Tech decides to “help” me be more comfortable so he folds a pillow in half, smashes it onto my forehead, partially covers my eyes, and places my arms on top of the pillow.  Not only was this NOT more comfortable but all I could think about was “Oh great, now I’m going to have smashed bangs.” 

Inconsiderate Jerk.

Mr. Tech begins the scans.  After a couple of minutes, he comes over to me, looks at the goosebumps all over my arms and asks, “Are you cold?”  Seriously dude, are you kidding me?  You yank off my sweater, I’m in a bitter cold room and you have the gall to ask if I’m cold?!  Duh!!!!  He says that he’ll get something that I’ll like and brings back a warmed blanket.  I was thrilled.  That is until he placed it across both my arms, across the pillow, and over my face making it impossible to see.  Thankfully, I could still breathe.  With a little chuckle in his voice, Mr. Tech says, “I hope you’re not claustrophobic.”  I didn’t answer because, I am, but I don’t want him touching me again.  And, I needed the blanket. 

Clueless Jerk.

Scans are finally over...but I don’t realize it.  Mr. Tech slaps me on my knees to let me know.  Then proceeds to yank the blankets off of me and pulls the pillow out from underneath my knees causing my legs to crash on the bed.  I’ve been laying down with my arms above my head for 30 minutes.  My hip is doing MUCH better than it was however, it quickly gets stiff and I most often have to move slowly for the first first steps.  Mr. Tech was expecting me to hop off that bed and skip on out of the room.  I moved quickly, for me, but only because I was eager to get away from him.

Bye, bye Jerk.

On Tuesday, I received the results of my scans.  I’ll write about that soon.