Discouragement

Today I began round 4 of my 7 day on 7 day off chemo pill cycle.  Every cycle, on or off,  the side effects get worse.  I was under the belief that the chemo was causing me to be very emotional but found out today, from my nurse, that it just may be that my hormones are totally messed up.  Because I need more to deal with.

The chemo does cause serious fatigued.  So, I'm always (I really do mean always) tired, cry far more than makes sense and over lame things, become overly defensive, slack on the things I know I need to get done, beat myself up for all the things I'm not able to do anymore and all the failures I feel have happened.  Isn't this great?!

I know that my blog is often hard to read and I've heard several times that husbands are reading if for their wives and passing along the information.  I'm sorry about this, but I can't help but continue the honesty.  It's either continue the honesty in the written form or try to tell my story, face-to face, over and over again.  At this point, I don't feel like doing either.  I want to hide in my bedroom, door shut, TV on so I can "escape" to another reality.  Yet I know this would be one of the worst things I could do.  However, in many ways, I've become a recluse in my own house because of the fatigue and a damaged leg that makes it a challenge to walk much.  I've never missed exercise more than I do now.

Today, I needed to get a shot for my bones.  Amongst the many issues, chemo causes bone damage.  I wanted to find out some other stuff from recent labs. I didn't like what I was told.  My tumor markers are up, liver functionality is worse, and lymphnodes are still large and hard (which I actually mentioned to them).  I told my sweet nurse that I was ready to throw in the towel.  SHE is the one that was the massive encourager and flat out told me I couldn't lose my faith now because that's what's gotten me through.  She also said I needed to get back to praying.  I'd pretty much stopped.  I can honestly say that I never expected this conversation which made it that much more beautiful, special, meaningful ... amazing. God has blessed me with a nurse I adore and with whom I can have complete honesty.  In many ways, I'm quite spoiled.

Before I start sounding even more martyrish, I want to explain that not all has been horrible.  I've experienced some of the most amazing prayer experiences but I do not feel comfortable talking about right now. I will say that in all the times I've had hands on prayer, I never experienced anything like I did 4 specific times, recently. I will say that just last Friday night, I was being prayed for by a man I'd never met. He had no idea what was wrong other than my hip wasn't working right.  He began praying for me and one of his many comments that he heard from God was, "you will not die."  He never once heard that I was dealing with cancer but he "just happened" to repeat the same exact thing to me that God's been saying to me for years.  Coincidence?  Yeah right.

Even with this, I am currently living a life filled with hours and hours of discouragement.  I talk a lot about being fatigued and how every bit of my mind and body are tired. Due to the reality that I've spent so much time over the last 3 years being chemo sick, cancer and chemo tired, going to a bazillion doctor and scan appointments, I've had serious doubts about my mothering and teaching abilities over the last couple of years. It's been painful in a whole new way.  I should simply be elated that I'm still here for my family but when you spend so much time seperated from the ones you love the most, trying to take care of yourself, you begin feeling the pains of "not being there". It's hard to remember that being alive is a good thing - no matter how often it's said to you.

I think that's all the bad/sad news for now ... well, all I'm willing to share anyway.

Thanks, once again, for the THOUSANDS of prayers and the multitude of other ways you've helped. Far, far too many to list.  It's been more than I could have ever imagined.  I don't feel worthy.

 

Brain MRI and Other Stuff

April 5, 2011

When I last left off, I mentioned that I had a brain MRI on March 31.  I wasn’t in the mood to blog about it because the news wasn’t good so Reed let a few people know.  That “few” has now turned into “many” ... at least locally ... so I thought it was time to blog and fill in some blanks. 

March 31 ... Brain MRI and results ... There is more cancer in my brain.  To be specific, the lower half of my brain has about 4 spots.  One looks pretty big.  I did however pass every neurological test they gave me.  Swimmingly I might add!  Dr. Duma quoted some statistics regarding breast cancer that has metastasized to the brain.  It wasn’t encouraging but I had an incredibly odd peace.  He also recommended I undergo another Gamma Knife procedure.

April 2 ... AMAZING prayer time (for healing) at our house.  I’m still processing the night so I’m not ready to share much yet.  But will tell you that some healing did occur in my “bad” leg/hip.  It wasn’t 100% healing but there is a definite obvious difference.  Especially to Reed and I.

April 4 ... Met with Dr. Link to review the Charis lab results and find out what my next step is.  I will begin a new chemo pill sometime next week.

April 6 ... 11:30 Thoracic MRI to see if there is any cancer in my spine
                  1:30 Gamma Knife pre-op

April 8 ... Sometime during the day, I will undergo my third Gamma Knife procedure.

That’s all the medical information I have for now. 

On the personal side, I am feeling really good.  I have no pain in my head, am walking better, and falling asleep with ease.  Staying asleep is another story but I’m pretty sure it’s because I drink far to much liquid shortly before going to bed. 

I’ve had lots of practical help that has freed me to stay caught up in areas that are very important to me. So, considering all the bad, we are certainly experiencing a lot of good.

God is being glorified and I'm not afraid.  It's all good.

Sigh

March 25, 2011

As I write this update angry butterflies are fighting each other in my stomach.  I hate that I have to share this news but it is what it is.  My news isn’t uplifting like it has been.  More than that though it’s embarrassing because I have been so vulnerable and today, I am forcing myself to continue in that vain.

March 10 ... Follow-up CT/PET scans to see if the Temodar was still doing it’s magic.

March 15 ... Began physical therapy (again) on my hip.  Found out that, yes, for sure my left leg is now 2 cm shorter than my right.  A heel lift was ordered.

March 16 ... Went to see Dr. Link for the scan results.  The cancer is back in my liver and some other key spots.  Also, a small lump on the outside of my left armpit had grown.  Dr. Link wanted it removed immediately for more testing from Charis (a special lab in AZ).  I finished with Dr. Link at 10:30.  At 11:30, I was lying on the surgeon’s table.

Deep sadness, betrayal, wishing I could hate God, anger, shock, fear, frustration ... these are just a few of my emotions.  Tears were waiting in my eyes to be unleashed but instead I retreated.

Came home to find a letter from my “new” insurance company and found out that the last dosage of  Temodar that had been approved had now been declined.  After it was sent to me and I took the dosage.  Really?  Because I need to deal with this?  New fight.

March 20 - 29 ... Reed is traveling around the world.  My parents came in and have been amazing.

March 24 ... God spoke ... “God is not a man, so he does not lie.  He is not human, so he does not change his mind.  Has he ever spoken and failed to act?  Has he ever promised and not carried it through?” Numbers 23:19  This caused my tears to be released ... and comforted my soul.

March 25 ... Had my stitches in my armpit removed but not yet any complete biopsy results.

March 31 ... Brain MRI

His Story

Recently I've received some gentle harassment because I haven't updated my blog.  Nothing new had happened so I figured it wasn't necessary. I was wrong.

The last several months have been virtually identical.  For 5 days in a row I take my Temodar (chemo) pills.  About three weeks after I've taken my last pills, I go in for my monthly checkup - an exam, blood work, good conversation, and continued good results.   Each month I freak about the little pains I have believing each one is a new cancer cell getting ready to engulf my entire body.  Sinus issues become cancer eating holes in my brain. Pain in my hip area becomes a hip replacement. I talk myself off the ledge or reach out in desperation for prayer, remember God's promises, live as if I'm not fighting cancer, then start the cycle all over again. 

I don't get as fatigued as I once did and am slowly becoming the productive person I once was.  I have a LONG way to go and I don't even care, which in new.  I don't want to be the anal person I once was.  I'm enjoying the freedom of not feeling the need to have my house perfect prior to going to bed.  Of not needing to reset every picture frame that's been messed with. Of not worrying about all the baby roaches I see in my kitchen.  Okay, that one still really grosses me out.

On the other hand, I've recently found myself far more jumpy. Sharp or unexpected noises that never previously bothered me now cause me to jump and my heart to race.  Very random nonsense things cause serious anxiety.  I don't know where this is coming from but I do know I despise it! I'll wake up with anxiety in the pit of my stomach and often not be able to figure out why it's there.  Or I find that it's simply that day's "to do" list stressing me out in a ridiculous way.

But then God will give me a day like today and I quickly realize that my story is being used in a way that is terribly humbling and the enemy will do whatever he can to cause me strife.

Habakkuk 2:2-3 (The Message)

 ^2-3And then God answered: "Write this.
   Write what you see.
Write it out in big block letters
   so that it can be read on the run.
This vision-message is a witness
   pointing to what's coming.
It aches for the coming—it can hardly wait!
   And it doesn't lie.
If it seems slow in coming, wait.
   It's on its way. It will come right on time.

If you're someone who has followed my story for a while, you will likely recognize this verse as one I've posted before.  This verse and Mark 5:34 are the two most common verses God uses when confirming what He's already told me multiple times.  Mark 5:34 is an easy verse to understand - "Daughter, you took a risk of faith and now you're healed and whole.  Live well, live blessed, be healed of your plague". But the Habakkuk verse, not so much.   

I trusted God and I trusted the people he used to bring this scripture to me but it bothered me that I couldn't understand what I was being told.  

I understood the "vision-message" part - that was His original promise to me.  I understood the "It aches for the coming - it can hardly wait".  In so many ways I was aching and was so desperate for His healing to occur.  I LOVE the "And it doesn't lie" part and totally agreed that "it was slow in coming".  I was always encouraged by the "It's on its way. It will come right on time."  But I never really understood the "write it out in big block letters so it can be read on the run" part.  At first I took it to mean that I need to send out an email and let people know what's going on.  But, I was already doing that so...?  I thought I'd transition to a blog format.  

After that, I read the scripture to mean that I needed to be more literal so I created what I think is a beautiful piece of art boldly proclaiming this truth.  It hangs in the entryway of our house right next to the one I made with Mark 5:34 on it.  I felt I needed the daily in-my-face reminder hung in a spot that is impossible to avoid.

I journal, I blog, I make art, and I want to write a book.  I need to find the first few years of email updates to write a book though.  Anyway, this brings me to Thursday...my monthly appointment.

My follow-up visits are simple but often emotional because of the reality that I always receive results of some sort.   I really only like for Reed to be with me because of the intimate nature of the visit.  But he wasn't able to go this time because he was out of town...freezing in Kansas City.

I was sitting in my exam room waiting on my nurse Donna.  Typically she does most of the exam and then Dr. Link will come in to check on me.  This time however, Dr. Link came to do the exam.  This actually threw me off and made me nervous.  Dr. Link assured me that all was still well and continued with his exam.  Afterward he wanted me to go with him to his office.  This is abnomal too because usually when we've gone to his office it's to discuss bad results or plan out the next treatment plan.  So I was joyous when, as he was bringing up something on his computer, he looked at me with an enormous grin and said "you're going to be the most famous breast cancer patient in California!"  WHAT????

Apparently, I shouldn't be alive.  And because of all the various and unusual treatments I've had the joy to experience, and because I'm getting better and better,  my doctor is currently writing an article about me to be submitted for publication to a medical journal.  I don't know which one but I know when it's published, I'll be asking for a copy!!  In case your curious, my identity will not be revealed.

There's more to the story though and this is what I'm most excited about.  

I've often talked about my nurses because in so many ways, they have been the medical glue that's kept me from falling apart.  I've had some of the most amazing conversations with my nurse Donna because she is truly interested in the parts of my life that have nothing to do with cancer.  On Thursday Donna asked a favor of me - one that I would never say no to.  She asked permission to write an article, separate from Dr. Link's, specifically about the spiritual side of my journey!!

I am THRILLED and honestly couldn't believe what I was hearing.  For me, this is my Habakkuk scripture coming to life.  For me, this is what my long, long journey has been all about.  God has made it clear from day 1 that my story would be used for His glory.  I AM SO EXCITED ABOUT THIS!  What a crazy way to tell the world who He is.  To tell His story.

To: Angela Robinson

This morning, when I got out of bed, I noticed that a white envelope had been slipped under my bedroom door.  On the front was written To: Angela Robinson.  Inside were three pieces of copy paper with a handwritten poem from Ben to me.  This is what he wrote...

God & His Daughter

I set my head on the pillow every night.

Full with promises and fear.

"What if I heard wrong, it wasn't right,

And it was only what I wanted to hear?"

So from these thoughts I try to abstain,

By thinking of the promises instead

But then comes in my chest a searing pain, 

And again the thoughts fill my head.

WILL I EVER SLEEP!?  WILL I GET SOME REST!? 

On this question I continue to ponder,

While verbally saying; "Devil you pest,

 GO TO HELL you are welcome here no longer.

Thirty or so minutes and asleep I have fallen,

Although not too sound.

Come the next morning and the pain is callin'.

So I wake up, and to the floor my feet pound,

"Why am I not healed?  Will I ever be free?"

These questions I throw GOD'S way.

Once again all of this doubt follows me,

cause this is the way I feel everyday."

"But this is GOD my daughter,

You will be totally healed up.

No need to look any farther,

For soon you will have a filled cup.

It will not only be in this life,

But in the next it will be as well.

I will take away from here your strife,

And give a story of me for you to tell.

I love you my daughter!

Live like you are blessed."

GOD I'm down the road a bit farther

And I'm healed!  With no more pain in my chest!

"After He called them by name, He set them on a solid basis with Himself.  And then, after getting them established, he stayed with them to the end, gloriously completing what He had begun."

Romans 8:29 Msg.

"Dear Angela, if He could do this then it means He will do this with you finishing gloriously what He started.

He's called you by name already.  He is building the foundation with you making you stronger then when you started.  Walking along side you while you are learning the things in your life that only the lucky few are able to obtain.  The day is coming when you graduate, and not any celebration, but you will be gloriously completing what he had begun.  The day is coming soon.  Your cross is soon to be lifted.  And you will be alive and whole."

God spoke to Ben in a very profound way during the wee hours of this morning blessing and encouraging me in an incredibly intimate way.  The timing made the poem/scripture/personal message even sweeter.  

I attended a funeral today for a relative I care deeply about and whose daughter (my cousin) is more like a sister/bff to me.  Bonnie died from metastasized breast cancer.  God used Ben to remind me that my story and Bonnie's have some similarities but in the end, our stories are as different as our DNA.  Because of the words the LORD gave to Ben, I felt the freedom to feel and express my emotions honestly - to be what they needed to be for me and to honor Bonnie.

Love you Tami.

Merry Christmas to Me #2

Today I had my brain MRI follow up with my nuerosurgeon, Dr. Duma.  He gave me a clean bill of health!!!!!!!!!! Then said I don't need to come back for 4 months but changed his mind just to play it safe.  So, I go back in 3.  

Aaaahhhh...it's been a good week.  MERRY CHRISTMAS TO ME!!!

No Monday Blues this Week

Mondays are not my favorite day of the week.  Typically I think that Monday mornings are pure evil better left for over achieving morning people.  This week, not so much.

Last week I went in for a PET/CT scan and a brain MRI.  This morning I received the results of the PET/CT scan with a smile, a Merry Christmas, and LOTS of hugs and kisses. No, I am NOT cancer free but the results were nothing short of amazing. Nothing short of miraculous.

As I type this up, I find myself getting pretty emotional - and I’ve had two days to process the news.  It’s as if I’m afraid to allow the greatness to really sink in.  Too many years of bad news, I guess. But what the scan results revealed was “marked” improvement in EVERY area...bones, liver, lung, breast, everywhere.  My wound is even completely closed now.  The first time in over 2 years.

Dr. Link is so thrilled with the results that he is planning on writing an article all about me and having it published in some medical journal!! 

All of this healing comes, in part, from a chemo pill that is not FDA approved for breast cancer.  But really it’s mostly from lots, and lots, and lots of consistent prayer. This is becoming very apparent and not just to me and Reed - but to those who’ve watched and medically understand what I’ve been going through far better than I do. 

During my appointment, I was overjoyed to be part of a beautiful conversation.  It’s a private story but I will tell you there were a good amount of happy tears and clapping because of the realization of how truly powerful prayer is and that it is “at least 50% responsible” for the healing I’m experiencing.  Of course I said I agreed but thought the percentage was a lot higher!! 

I desperately needed some good news during the month of November...THIS November.  Even though this news didn’t come in the “right” month, it is the results of the healing that occurred in November.  It was exactly what I needed to hear in order to feel alive again and to see that God IS keeping His promise.

I have been incredibly numb for a good while now.  Unable to feel emotions of any kind.  Other than a little bit of anger, a smidgen of compassion, and a decent amount of sadness when two out of three of my favorite nurses baled on me (kidding - good reasons behind both). Ok, ok, so I’ve had a few emotions but truly I’ve lived in Numbville for a long time and it really isn’t fun. 

God created us with feelings for a VERY good reason.  It’s hard to think rationally if you cannot feel. I developed an “I don’t care attitude” about virtually everything but was able to “fake it” well enough to appear as if I did care.  Mostly because I hoped one day I would not be numb and at that point, I would care. I didn’t want regrets. Or maybe I believed that I could fake it until it became real.  Who knows?

Today, I’m not numb but I also know that I am incredibly vulnerable and could slide back there at any point. 

In Mark 5:34 Jesus says...”Daughter, you took a risk of faith and now you’re healed and whole.  Live well, live blessed, be healed of your plague.”  As many of you know, God has spoken these words to my heart over and over and over again as His promise to me that, someday, I will be rid of this cancer for good.  I will admit that there have been times when I got to a point of serious doubt. Had I heard God incorrectly ALL those times?  No.

This scripture has been my life line for 5 1/2 years.  The woman in the verse had her ailment for 12 years before God healed her.  November marked the 12 year “anniversary” of my original diagnosis.  The woman spent all her money and used up all her medical options.  We’ve spent lots of money and are virtually at the end of options...in the same 12-year time frame.  Coincidence?  I don’t think so.

Four years ago November, God again spoke to me in an unusually loud and gut wrenching way telling me twice that I was on the right road and that I had only 4 more miles to go.  I couldn’t figure out what He meant but I knew that I had heard Him loud and clear.  Did He mean 4 minutes? 4 hours? 4 days? 4 months? 4 years?  WHAT???!!!  I was hoping for 4 seconds dreading the thought of dealing with this for 4 more years.  After months went by and then the 1 year anniversary of my “experience” came and went, dread took over and I realized He was likely saying 4 years.

About a year-plus-ish ago maybe two years (some things are a blur), several ladies from church spent an evening with me to pray for my emotional and physical health.  During their prayers, a mention was made of the woman in the Bible and the fact that she was ill for 12 years.  A “ding, ding, ding” went off in my head and I realized that my 12 year “anniversary” and the “you only have 4 more miles to go” time frame landed on the same November.

To those who haven’t walked in my tiny shoes, this easily sounds like religious mumbo jumbo and strange mysticism.  Because I’m living it, I know it’s neither of these.  It’s all very real. 

I was anxious the entire month of November wondering if what I hoped was going to happen, would actually take place.  To be honest, I believed/hoped God would bring healing in a more spectacular way.  I begged and begged until I just couldn’t beg anymore.  But God is choosing to heal me in His way and I just have to be ok with that.

Am I out of the woods yet?  For sure no.  Could the chemo stop working? Um...of course.  Do I think it’s going to keep working?  I really do. So for now, I continue with my current regimen.  This means I begin the chemo pills this Friday and take them for 5 consecutive days.  And, we continue the prayer regimen, which never ends.


P.S.

God is continuously telling me this too...

You will not die, but live to declare the works of the LORD. Psalm 118:17-18 (KJV)

P.S. #2

I have hair growing on my head!!!!!