My Husband Reed

There are so many adjectives that can be used to describe my husband.  Gentle, funny, strong, character driven, funny, dedicated, talented, intelligent, focused, quick-witted, funny, Godly.

But what so few people get to see is how unbelievably loyal and caring he is towards me.  I’m sure this could be assumed because we are married and have been for a very long time but I recently heard a statistic that made me sick to my stomach and really opened my eyes. 

Evidently, in marriages where there is a terminal diagnosis (NOT saying mine is!!), the vast majority of the marriages end in divorce.  I can’t site the exacts of the statistic because, sadly, I didn’t think to write down the information.  But it was about 7 in 10 marriages end.  I was in shock.  At the moment the “sick” spouse needs the “well” spouse more than he/she has before, the marriage ends.  Made me think, “whatever happened to “in sickness and in health”?”.  And also really brought to light just how blessed, spoiled, fortunate I am.

This illness has been hard on me..very hard.  But only a fool would believe that it hasn’t been equally as hard on Reed.  Just in a very different way.  He’s not the one with “the disease” but he’s most definitely the one who has picked up the majority of slack at home.  The boys have been amazing too but Reed’s the one that works at least 50 hours a week (plus overseas travel several times a year), makes sure the refrigerator is full, paper products and other toiletries are stocked, dinner is, in one form or the other (often through friends), taken care of and the kitchen cleaned up afterward, gets up early on the weekend to get the boys where they need to go, keeps the yard maintained, the cars full of gas, the laundry going when I can’t, and makes a point to check on me during each day just to make sure I’m OK.

He VERY seldom complains and when he does it’s never about all the extra burden placed on him because of me.  It’s about “other” stuff that may or may not include people who whine too much for the lamest reasons.  He has many, many reasons to gripe about my “sickness” and yet I NEVER hear it.  His brother might but I don’t...ever.  Even now when he is so tired and the weight of all of this is catching up to him, I don’t hear griping and I’ve never felt blamed.  He just keeps on loving me, loving the boys, and making sure we all get through that day.

Somehow, he has managed to continue to do his job (and do it well), be an “I’m there for you father” to the boys, and an unbelievably loyal, compassionate, and loving husband to me.

My journey is not over and I really haven’t a clue when it will be.  We survived the radiation (which was really more like hell on earth) and will now proceed to the next thing.  Chemo pills...5 days on, 28 days off.  I have no hair which makes it even harder for me to understand how Reed can love on me but I figure it’s because he sees me in my very cute wig too.  For nearly two months now, I have been far more tired than I’ve been at any point during this entire ordeal often needing to sleep 16 hours a day.  I’ve had very little mental clarity and lots and lots of nausea.  And still Reed stayed by my side, encouraging me, affirming me, making sure I’ve eaten, and often simply helping me to walk.

Despite what my doctor and nurses have thought about where I should be right now, I am still very much alive.  I know there are many, many reasons for this...Jesus!, hours and hours of friends and family praying, treatments that have “worked”, an insanely strong support group, good eating habits (except that one donut I had a couple of weeks ago), but the biggest human reason is because I’m married to a man that refuses to leave my side.  Who will, and has, dropped whatever he’s working on to come and be with me when I’m in a horribly pathetic state.

He is a man to be emulated for sure.  I am thrilled beyond thrilled that my boys get to be raised by such a gem.  They couldn’t ask for anyone better.

I love you so much Reed.  Thank you for sticking by my side.  For caring for me, trusting me, believing with me, loving me, and for often carrying me through this 12 year long journey.  Especially the last 5 years.  I know you will be my walking partner from now until eternity.  And I am here for you.

Until next time...

P.S. I have a birthday coming up on October 17th...just in case you want to send me a card (insert big smiley face here).

Sometimes you just gotta...

August 4, 2010

Sometimes you just gotta share the things you read even if nobody sees in what you're seeing.  That's ok.  It's kind of like being excited about a new funky outfit that nobody else gives a rip about (or thinks is odd looking).  I'm still going to love it even if you don't.

I read this in "Streams in the Desert" this morning and it was encouraging to me.

Jesus looked up and said, "Father, I thank you that you have heard me." (John 11:41)

The sequence of events in this passage seems strange and unusual.  Lazarus was still in his tomb, yet Jesus' thanksgiving preceded the miracle of raising him from the dead.  It seems that thanks would only have been lifted up once the great miracle had been accomplished and Lazarus had been restored to life.  But Jesus gave thanks for what He was about to receive.  His gratitude sprang forth before the blessing had arrived, in an expression of assurance that it was certainly on its way.  The song of victory was sung before the battle had been fought.  It was the Sower singing the song of harvest - it was thanksgiving before the miracle!

Who ever thinks of announcing a victory song as the army is just heading to the battlefield?  And where do we ever hear a song of gratitude and thanksgiving for an answer that has not yet been received?

Yet in this Scripture passage, there is nothing strange, forced, or unreasonable to the Master's sequence of praise before the miracle.  Praise is actually the most vital preparation to the working of miracles.  Miracles are performed through spiritual power, and our spiritual power is always in proportion to our faith.    John Henry Jowett

I am choosing to praise God and thank Jesus for the miracle of healing that has yet to occur.  If Jesus can bring to life a dead stinky Lazarus, He can CERTAINLY get rid of the cancer in my body.  And I for one believe He can!!

Tuesday's News

August 3, 2010

Tomorrow it begins.  Radiation that is.  On my brain.  Unless God intervenes.  I'm trying to be positive about this but my con list is much longer than the pro list.

Pros...

• 30% chance it will get all the cancer out.
• Might get to keep the creepy mask.
• Get to make new "friends".

Cons...

• Have to cut way back on green tea.
• Have kept all my hair during chemo but apparently will lose it from radiation.
• Have to go in for treatment for 15 days in a row (minus weekends).
• Could have permanent issues with short term memory and concentration.
• 70% chance it won't get rid of all the cancer meaning I'll likely have to have more Gamma Knife in the future.
• Have to wear the creepy mask 15 more times.
• Nausea.
• Fatigue.

When I went in today, I wasn't sure what was going to happen.  Ends up all that was needed was to finish the planning stage that I couldn't finish last week.  It was scary but nothing like last week.  Plus, the three techs I had today were incredibly gentle, sweet and understanding. 

Shortly after the mask was put on, I was asked how I was doing.  I wasn't doing well and somehow (literally only God knows) I was able to say, "Can you take the mask off for just a little bit."  I was stunned that I was able to speak...I honestly still don't know how.  The mask is SO tight it pushes my jaw completely closed.  Anyway, within seconds, the mask was off.  I lost composure for a little bit and began to cry.  It felt good to release that sadness and fear and it gave me the strength I neede to allow the mask to be put back on so the planning could continue.

I'm not looking forward to tomorrow...or the other 14 appointments.  But, I'm not feeling God closing any doors so I will continue to walk forward until told otherwise.

Oh...and just so you know...I will also be having radiation on the original tumor sight in hopes of getting that area under control. 

Masking the Problem

August 2, 2010

I tell you what, if God wasn't making Himself so clear to me right now (and for the last several days) I could easily go insane.  Last Friday I went to the consult for Whole Brain Radiation (WBR) and was fitted for a mask for the radiation treatment.  I can honestly say that the fitting was one of the top three horrifying things to come across my adult life.  I am slightly claustrophobic and I'm pretty sure this fitting threw me over the ledge.


Let me explain...because it wasn't explained to me.   You go into the room with the big radiation machine and lie down on the hard metal bed.  You're adjusted and adjusted and then you're finally exactly where they want you.  Under the cross hairs of the radiation beam.  Then, all of the sudden, they're coming at you with this crazy thing that turns into a mask.  I don't know exactly what the mask is made of but I believe it's some type of teflon.  But what it feels like is super thick plastic wrap.  It's warmed up with water and then stretched, VERY TIGHTLY, over your face and snapped into a frame on both sides of your head.  It hardens as it cools making it impossible to open your eyes (you're told to close your eyes as they stretch it across your face) and impossible to talk.  It's a completely breathable substance but, from the head up, it's impossible to move.  Of course, that's the goal.  But when you're claustrophobic and you can't see and you can't talk, it feels like suffocation.  I wanted to scream but since I couldn't,  I had a panic attack instead.


With most scans, you're given a panic ball to squeeze in case you begin to freak.  For some reason, the same procedure is not followed with radiation.  I find that strange because this is actually far more freaky outy than any scan machine I've been in. 

What happened instead?  Well...let me tell you.  The main tech had a "shadow" that day...a student from a local college.  All very common in the medical world but what I've noticed is that when there is a shadow, the one in charge is often distracted.  So, it wasn't super apparent to them that I wasn't in good shape.


I tried to get across my fears by waving my arms around a bit but the student wasn't getting it.  And the other tech wasn't nearby.  The student asks if I'm ok.  So lame because I can't answer.  She then says, "give me a thumbs up if you're doing ok".  I kept waving my arms then it finally dawned on me "duh, do a thumbs down".  So that's what I did.  But the student didn't do anything except to say it was all ok.  SHE wasn't the one under the mask!!  So clueless.


Dr. Kim (my radiation oncologist) came in to give me some information from Dr. Link and figured out quickly that I wasn't ok.  He stopped the "planning session" and told the techs to get me out of the mask.


I walked out of the room, immediately saw Reed and began to cry.  I was completely shaken and I still had to do the spinal MRI...an hour and a half long ordeal...in another scan tube...just across the parking lot...needles.


I did pretty well...sort of.  I didn't panic but I did experience a bit of anxiety.  This time however, I could pray out loud (something I couldn't do with the mask on) and that put me at ease.  That and the panic ball.


The day was finally over and I was finally able to go home - an hour later than I was supposed to.  I left without knowing the results of my scans and I still don't know.  I have an appointment tomorrow at 1:45 to finalize the planning.  I have no idea if they'll want me to begin radiation or if I'll get the results of my scans.


I'm literally living day to day and am surviving on amazing things that God is telling me.  Many of them coming from friends.  I love it when God speaks to my friends on my behalf.  I also love that God has not allowed me to be alone the last several days.  I'm not being allowed to spiral into any sort of depression or negative thoughts.  It's a good place to be.

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 evidence...at 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.

 

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 but...it’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!!

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.  Two...at 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!