Thursday, December 16, 2010

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

Tuesday, December 14, 2010

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 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.


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!!!!!

Friday, December 3, 2010

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’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.

Friday, November 19, 2010

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.

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

Thursday, November 11, 2010

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. 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 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. 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’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!

Wednesday, October 13, 2010

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 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.

Tuesday, September 21, 2010

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).

Wednesday, August 4, 2010

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, August 3, 2010

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.

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

Monday, August 2, 2010

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 hour and a half long 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.

Friday, July 30, 2010

Faith Rewarded

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

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

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

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

"Faith Rewarded

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

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

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

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


Thursday, July 29, 2010

The Brain Scans

July 29, 2010

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

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

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

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

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

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

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

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

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

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

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

Tuesday, July 27, 2010

My Brain

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

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

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

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


Sunday, July 25, 2010

Results, Results, Results

July 25, 2010

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

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

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

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

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

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

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

Again The Scans

July 25, 2010

Again the scans...

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

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

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


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

Prideful Jerk.

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

Don’t touch my sweater Jerk.

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

Inconsiderate Jerk.

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

Clueless Jerk.

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

Bye, bye Jerk.

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