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!!!!!

Eli's Honesty

“I can’t wait until you’re healed because then you’ll be a regular mom again.” Nothing stabs or encourages like the honesty of a child.  Eli said this to me a couple of days ago and my immediate reaction was a knife to the gut.  Before I allowed tears to drip down my face, I calmly (sort of) asked him what he meant.  He said, “Well, you know, now you have to sleep a lot and when you’re healed you won’t.  Then you’ll be able to do stuff like regular moms do.”

Oh how I hated hearing this.  Eli meant no harm and I am THRILLED that he truly believes this cancer will be gone some day.  I really should focus on this but, as I’ve said many times, I love being a mom.  I’ve never had any regrets about choosing to stay home and raise my brood.  It makes me sad that for 2 1/2 of Eli’s 8 years, I have been on chemo.  I doubt he even remembers what it was like to have a “regular” mom. 

To be honest, I don’t exactly remember what my days were like pre-chemo.   What I do remember is super high productivity even late into the night.  I was high-productivity obsessed and it wasn’t healthy.  But it made me feel good.  Feel successful.  Everything was spit shined and organized before I turned in for the night.  And there was almost never dirty laundry because I was washing it almost daily.  At one time, a long, long time ago, I actually ironed all our shirts.  Plus, I was cooking regularly, taking part in a Bible study, and homeschooled with field trips.  I expected a lot of myself and was discouraged if I didn’t meet my own expectations. 

Contrast that to today...it’s literally a 180.  I look at that list now and think “how in the heck did I do it all?”  No wonder Eli doesn’t see me as a “regular mom”.  But I also know he compares current day me to what he sees other moms doing with their kids.  Baking, cooking dinner, going on fun adventures...interacting more.  Not sleeping away a day, or doing school from mama’s bed, and he almost never sees me at the stove.

I have dealt with massive guilt about not “being there” for my boys in the way I think I should.  That’s why the comment stung so much but I can’t change what’s happened and I have no desire to be the intense person I once was. I’ve seen growth in other areas of the boys’ lives that wouldn’t have happened had we not all gone through this journey together.  I’m hoping once all this cancer is gone, I can be about a 90 (instead of 180).  That to me will be success and my new “regular mom” norm.

Again the ER?

I am very privileged to have a house full of boys.  With that privilege comes a lot of ER visits.  I was told years ago, during a visit, that boys are in the ER 5 times more often than girls.  I have nothing to compare this to since I have no girls.  I do know that we’ve experienced 10 broken bones, 5 surgeries, poison swallowing (Peter), flesh eating bacteria (Ben), and a forehead colliding with a tree (Cam).  Eli - whose initials are ER and who is constantly running into stuff - is our only child to not grace the halls of an ER.  Two of our boys ended up at CHOC (Children’s Hospital of Orange County) a total of 3 times.

All this background information brings me to my current story.  This past Friday, Peter started having stomach issues.  Because the flu has been going around, all I could think was “please no, I can’t stomach smelling his vomit.”  Yes I am that petty and that punny (big cheesy smile). 

We watched him all day Saturday doing our best to rule out the flu, gas, rotten food, anything involving the stomach.  The pain kept getting worse to the point where Pete couldn’t walk.  Because we ruled out everything we could think of, we knew we had to take him to the ER.  Especially since a long, long, long time ago Reed had to have his appendix removed and was having deja vu.  So, we helped Pete to the car, called Cam and asked if he could come home, and headed to Hoag.

After several hours, a blood draw and an ultrasound, we were transferred to CHOC and were told that Pete would be having surgery to remove his appendix that night.  The transfer was Pete’s favorite part of the experience.  He was taken by ambulance.  The very young (cute) male EMT was super excited that he was transferring a child, especially one that enjoyed conversation.  Pete had been given some pains meds so he was feeling pretty good at that point!!

We got settled into CHOC and waited...and waited, and waited.  Because it was the weekend, the surgical staff was limited and decided it was best to operate on Pete the next morning with a rested surgeon rather than late Saturday night with a tired surgeon.  Good decision.  Reed and I figured it was safe for him  (Reed) to go home and get some sleep...or at least try.  I stayed at the hospital with Pete and was promised I’d have plenty of time to give Reed a heads up if we were taken to surgery early in the morning.

After a quality night’s sleep in the most amazing bed ever (not really), and Reed arriving before I fully woke up, we again waited.  Peter was restless most of the night and in pain but wasn’t showing many of the signs the doctors look for when diagnosing appendicitis.  Despite the findings on the ultrasound, Peter was not nauseous, he was hungry, had bad pain but not severe, and didn’t have a fever.  All this caused the surgeon to pause and order a CT scan to rule out a virus that mimics appendicitis. 

The scan came back positive - for appendicitis. 

Peter finally had surgery around 5:30 in the evening.  It was a really long Sunday and I was thankful that, right before surgery, my mom made it to town to help.  I was thrilled that she and the boys (minus Abe) were able to be at the hospital during the surgery.  Something about them being there felt so right.  It helped to put me at ease. 

After Peter was back in his room from surgery, I went home to shower and change then left my mom to keep things “normal”.  I returned to the hospital and Reed and I switched duties.  Sunday night Pete slept like a rock and so did I. That night the chair-bed honestly was incredibly comfortable.  That’s what fatigue does.

Monday was a new day.  Peter was doing well enough to be discharged by late afternoon.  We were heading home!

What I’ve known during this long cancer journey is that no matter how pitiful things get for me, I will always be a mom.  If I had not had this, I honestly don’t know that I would have faired so well.  I’m certain that God would have given me other things to feel life through but I am incredibly thankful that he gave me a bunch of boys instead.  Boys that in so many ways keep me alive.  Either by making me laugh until I cry or making me so frustrated I want to cry. 

Is it hard combining cancer with motherhood?  I would be a foolish liar if I didn’t say yes.  But it’s taught me so much about what really matters when raising your children.  I’ve learned that it really is okay to not be involved in every little activity - whether theirs or ours.  Boundaries are good and actually healthy for overall family life.  Cereal can be used for three meals a day, especially if milk is used.  Dinner together doesn’t have to be home cooked or even at home.  It’s not excessive if I spend money to have my house cleaned but the boys still need to have chores and structure.  No matter how tired I am, disciplinary follow-through is crucial.  It’s okay if my boys see me tired and unproductive.  Pajamas are clothes and it’s okay if Eli lives in them for days and days (not in the same ones).  I can’t do everything for my kids so it’s okay if they take on responsibilities earlier than I originally thought they would.  It’s okay to spoil when given the opportunity.  It’s okay to do school from my bed.

It’s also okay for them to see me hurting and crying out to God for relief.  It’s okay for them to see me frustrated and sick of this journey.  Hopefully, they also see that I’m trusting God’s promise to heal me and hopefully that balances it all out.


P.S.
Tonight I started round 3 of the chemo pills and I did it right!!  Four more days to go...this time.

Pills, Pills, Pills

Pills, pills, pills.  Pills to kill the cancer.  Pills to deal with the nausea caused from the cancer killer pills.  Pills and then more pills to deal with the constipation and other side effects of the anti-nausea pills.  Pills to deal with the low iron levels brought on by the cancer killer pills.  Pills to deal with the actual cancer pain and the headache of having to take all these pills.

Funny thing (as in ironic...cause it just isn’t worthy of a ha, ha, ha or a hee, hee, hee) before this fiasco began, I didn’t take pills.  Not for headaches.  Not for allergies.  Nothing.  Supplements were another story but I’ve just never been a pill popper.  I now consider myself pro status because I’ve had so much practice.

Anyway, last month I told you that I was cautiously optimistic.  This month I still have cautious optimism but have added hope back into the mix.  This despite being in the ER the night of October 24. For reals.

The back story.  On Friday morning, October 22, I started feeling an intense pain in the center of my chest.  Even though the pain was intense, I wasn’t having “heart attack” symptoms so I was pretty confident it wasn’t actual heart trouble.  Also, I was able to get the pain to subside by taking a pain pill.  So, later that evening, as scheduled I started my second round of chemo pills. 

Saturday was much like Friday.  Chest pain alleviated by pain pills.  But then Sunday came and no matter what I did, I could not get the pain to subside. It was actually feeling worse.  By late Sunday evening I was in so much pain that I couldn’t stop crying.  Unless we’re talking about needles, I have a pretty high pain tolerance.  But when the pills aren’t taking the edge off and it hurts every time my heart beats, it’s probably best to get it checked out. 

So, because I was upstairs lying in bed and Reed was downstairs, I texted him and said “I think I need to go to the ER”.  So lame.  Why was I surprised when I heard him RUNNING up the stairs?  Did I really think he was going to casually walk up the stairs and say “what’s up?”   Seriously lame.

After letting Ben know what was going on, we left for the ER.  I’ve heard for a long time that possible heart problems are taken very seriously at the ER.  but I was in awe of how fast I was wheeled to a bed, assisted in getting into a gown, and hooked up to leads and a heart monitor.  After several hours of heart testing, blood work, and a CT scan we found out that my heart is in great condition.  Also, I did not have a collapsed lung or any obvious chest fracture.  What I did find humor in though was the look on the CT tech’s face when she realized, by looking at the scan, that I had cancer.  I think she thought someone was going to have to give me some bad news.  Oops.  I assured her that I knew it was there and thank you very much for caring. 

Anyway, the ER doctor said the pain was likely from a muscle pull (or some kind of pull) from all the vomiting, coughing etc. that I’ve been experiencing for weeks.  All I knew is that every time my heart beat, I was in severe pain.

Our date night in the ER ended around 3:00.  We went home, talked for a while with Cam, Ben, and Chelsea and then headed to bed.  Cam and his girlfriend had come to the house to hang with Ben for the night.  I was really, really thankful they were there.  Peter and Eli didn’t know anything until late Monday and Abe was at school praying for me with friends.  I was so doped up with pain killers and anti-nausea meds that I actually slept pretty well that night.  Not long but well. 

Monday was a brutal day on many levels but it was the day the pain began going away in my chest.  It took a few more days for it to be completely gone but at least I knew that my heart was okay.  That in itself was heavenly.

About a week later, on November 1, I had my monthly doctor exam to check “my numbers” and other vitals.  I didn’t know that the ER was going to send my lab work to my doctor so imagine my surprise when my nurse Donna walked in and said “Why were you in the ER?”  What??  I wasn’t planning on sharing that information!  It didn’t seem necessary since all was well but what I didn’t realize was that all the blood work that was done showed that my numbers were better than they were just a couple of weeks prior on October 4.  This was REALLY encouraging.  From October 4 to October 24, 20 short days, my numbers had dropped significantly.  This gave me A LOT of hope for what my November 1 numbers would reveal.  Especially since the swollen lymph node in my neck was OBVIOUSLY smaller than the previous visit.  So...my ER visit ended up being positive on many accounts.

What’s adds to the “encouraging” news is that my November 1 blood draw results show that my numbers have come down even more and the lymph node in my neck is, at this point, nearly normal size.  My liver function is showing normal, my tumor markers are down, and some other number that shows improvement in my bones is down. 

Even more amazing is...for the first two treatment cycles (Sept. and Oct.) I took the pills incorrectly :/.  How does this happen?  I don’t know but I’m thinking that a combination of serious, serious fatigue, a brain trying to heal from weeks of whole brain radiation, and the chemo pills themselves might play into it.  I obviously didn’t understand the instructions I was given by my nurse or the pharmacist because when I received the pills in the mail all I saw was two bottles...one I thought was for September and one for October.  I didn’t realize that both bottles were for September - that I was supposed to take 2 pills from the 5 mg bottle and 2 pills from the 100 mg bottle equalling 4 pills or 210 mg.  Uh oh.  So...one month I was taking 10 mg and the next I was taking 200 mg and I honestly don’t know which was which but I have an idea that October was the 200 mg month because the fatigue and nausea were significantly worse.  But, I can only guess.

This month I will do it right.  I will take all 4 pills all at once.  I just have to remember to take 2 from each bottle and not 4 out of one bottle.  Hope I can handle that.  I will be starting these pills the Friday before Thanksgiving so I’m expecting to be incredibly tired come Thanksgiving Day.  Thankfully, my mom will be here taking charge while I’m sleeping!!!  YIPPEE!!!

So this is where I am mentally today.  This month marks 12 years for me since this journey began and 4 years since I experienced an incredibly significant and scary but beautiful spiritual experience.  One of these days I really want to share the story but I’m not ready...it’s not time.  For a long, long time now I’ve not really felt God’s presence.  I know that He’s carrying me through all of this and I know without a doubt that I am still alive and fighting because of the strength He’s given me.  I’m not strong.  He is.  I am pig headed though. 

I do not like not feeling God’s presence but I’ve learned that sometimes that’s necessary in order to truly hit bottom and fully put my trust in Him.  Every time I hit bottom, I think it can’t possibly get any worse.  And then it does.  I am loved and cared for more than I should be and I know that this is my friends and family being the arms and legs of Jesus.  I have been given verbal riches and special moments with people that are irreplaceable and would have never happened had I not be “blessed” to experience this journey.  I know this is God.  All of it.  Sometimes it’s just unrecognizable. 

I know without hesitation that my husband and my boys keep me going.  God has given them each a special role and it’s been awesome watching that blossom.  Reed is confidence and strength, Cam is protector, Abe is prayer warrior, Ben is joy-filled, Pete is gentleness, and Eli is persistence.  Whether they realize it or not, they’ve encircled me allowing me to feel safe and giving me the desire to continue the fight.

Tonight it’s easy because, other than serious writer’s block for days and days, I’m feeling pretty good.  In regards to my health, it’s been a good month.  It’s EASY to be hopeful when all is going apparently well.  It’s EASY to be hopeful when you aren’t feeling the darkness of the disease or the loneliness that can’t be shaken.  It’s EASY to feel hopeful when you’re not feeling nauseous and brain clogged.  Unfortunately however, this is not the majority of my days. These days are few.

But somehow, whether of my own choosing or not, I manage to get up each day.  It might not be until 10:00 and I might not be out of my pj’s until 12:30 or never and I might end up back in bed but I AM still surviving.  And, for today, I’m once again hopeful!

Mostly Good News

I so seldom receive good news in regards to my health, that when I do, it’s such a pleasant surprise that I feel like telling the world.  But since I can’t do that, I do the next best thing...I blog.  Unfortunately, I started this blog right after I heard the news but "things" happened and I'm just now getting it out.

On Monday, October 4th, I went in to Dr. Link’s office to donate blood - i.e. a follow up visit to make sure I was handling the “new” chemo pills ok.  On Tuesday, October 5th I learned some surprising things.  I learned that the tumor marker blood tests used on virtually every cancer patient on the planet do not work for me.  Apparently, there are a “few” people who, because they are so special, have blood that doesn’t respond to the typical tumor marker blood draw.  High fives all around for people like me!  I don't know why I'm just now finding this out but probably because it doesn't really matter.  During this entire journey, I’ve not responded to many things “normally”.  I’m fearfully and wonderfully made, right?  I also learned that even though my liver is a little bigger than it should be, my lungs sound VERY clear and the progression in my bones is minimal.  I do have new lymph node issues but the breast area is significantly better. 

I was thrilled with the “clear lungs” news, thought the “tumor marker” news was hilarious, not shocked but pleased by the “breast area” news, a wee bit bothered by the “liver” and "lymph node" news, and not at all surprised by the "bone" news.

What made all the ups and downs worth it though was that my nurse Donna (whom I absolutely adore) made the comment that, “yes, the chemos were working but mostly it was all the praying.”  She cannot make human sense of why my lungs sound clear or how it is that I’m still walking (literally) around fighting this disease.  She mentioned that it must be all the praying and the way I take care of myself by surrounding myself with good things...i.e. friends, church, diet etc. 

She’s getting it!! 

On Wednesday, October 6th, I went in for a brain MRI to see if all that hellish radiation did anything other than make me nauseous, give me ringing ears, weeks of being unable to think clearly,  and a bald head.  It did.  I officially have a clean brain...clean from cancer.

Now, while I understand that this is exceptionally fantastic news, I find that I can’t do any better than cautiously optimistic.  I am relieved, encouraged, happy but I’m pretty sure being elated isn’t going to happen.  In the back of my clean mind I can’t help but think this could be temporary.  I will choose to be cautiously optimistic and hope that my next MRI will be clean too.

On another note, I am constantly hungry.  This is a real pain for me because I’m not a big fan of eating.  As much as this annoys me, I KNOW that it’s a really good thing.  My body is using so much energy in the healing process that I’m burning off all that I’m eating. It literally feels like my body is rebuilding itself.  If I keep food in my system, my energy level stays up.  If I don’t, I crash and burn.  Since I don't like to crash and burn, I've decided to keep "easy-to-eat" food around.

So, that’s the latest in my life.  That and my birthday is in a few days!  The 17th in case you’re wondering.  Oh yeah...one more thing.  Currently I am on a break from a chemo pill.  On October 22nd I will begin the pill again and take it for 5 days.  I will then have another 28 day break and then start over again.

That's it for now...I think.

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!!