Lenten Discipline Like Never Before

Over the last four years or so, I have really dug into my faith.  I have even purposely walked into the wilderness during the season of lent.  I have given up things I enjoy and committed to additional time in prayer and reflection.  I have studied parts of the Bible that talk about the deep, dark wilderness.

This lent, I'm living my own wilderness except I didn't purposely walk into it this time.   The day before lent started I had my first round of taxotere chemotherapy.  Technically, my body wasn't ready to receive the treatment based on my blood work, but without the toxic chemo, my blood has little chance to recover on its own.  My cancer is taking up the space in my bone marrow where good red and white blood cells need to live and crowding them out so they die off before my body receives the things they normally deliver.  My body is currently very low on red blood cells.  Red blood cells deliver oxygen to your body.  This is why I'm not "tired", but instead exhausted.  My body is working in overdrive to do simple tasks.

Wednesday, the first day of lent, I received a blood transfusion of red blood cells to help with my production during this first round of chemotherapy.  The nurses thought I would feel a boost in energy within a couple days.

BUT, I didn't.  Instead I started having an allergic reaction.  The reaction started on my arm, but is now currently making me want to scratch my arm, back and thighs off in order to get a moment of relief. 

When I called the after hours call line, they suggested that I take Benadryl around the clock.  This started a four day Benadryl binge with little results besides effectively making me completely useless and sleep nonstop.  Yesterday I started a steroid which hopefully will finally calm the allergic reaction.  So far, the best treatment for the itching is a paste made of baking soda and water, in case you wondered.

Tonight I'm not drugged on Benadryl, only nondrowsy Claritin, so I thought I'd update...but Camille has decided to make the night a little more interesting.  She just threw up all over her bed.

I WAS going to talk about the wilderness, but as you can see, I'm directly in the middle this Lenten discipline like never before.

Embracing the wilderness and taking Piper outside to smell the fresh air instead of vomit-fest upstairs while that sweet little baby girl in the picture I posted today as #remember showers off the ick.

 

 

 

And honestly, I HOPE and PRAY this wilderness doesn't last the entire 40 days of lent;)

 

 

Oh and they aren't sure what's causing the reaction since I had chemo and blood back to back.  We will discuss the plan of action when I go back to the clinic to have a medport placed next Tuesday.  I have decided to have a port put in this time around for a couple reasons.  I can only be poked in my right arm since I had lymph nodes removed on my left and with the trial I'm on, they test my blood and run tests very often.  The port will save lots of IV sticks and offer them easy access to my craptastic blood.

 

 

All my love and never ending gratitude for everything and always for the prayers.

 

XOXO,

 

Laura

 

Honesty is the Best Policy

Honesty is the best policy.  I've learned this lesson many times in my lifetime, but I'm not sure why my initial reaction was to hide this time.

Maybe to shelter all of my readers?  Maybe to protect myself from additional questions about my prognosis?  Possibly I just needed to process it myself and attempt to get my immediate family and close friends through the news first.

Today I told my bosses that I can't keep up. I can't handle the taxes and probate and I'm not even entirely confident that I can manage the books.  (They took it well and want me to work as little or as much as I want;))

But, I'm exhausted.  Not tired.  I sleep 8-12 hours a night.  I'm exhausted.  It's entirely different that tired.

My blood work explains a lot of why I am so tired.  Out of about 30 things they test for, I'm in the normal range in about 2 categories.  Number wise, I completely qualify for a blood transfusion.  Since I'm not having symptoms other than fatigue, my doctor wants to hold off on the transfusion if at all possible to see what my young body will do with the treatment.  He doesn't want to put foreign blood in my system IN CASE I would react poorly to it.

WHY are my numbers so whacked out? Well, here's some more of the honesty.  I have cancer growing not only in my bone marrow, but the additional testing done on Monday confirmed that I have spots on my liver and lungs as well.

We are not telling the kids that it is growing other places.  We have decided not to tell them because the treatment is the same and the prognosis did not change either.  According to my doctor, either the cancer will quiet with the chemotherapy or it won't.  Either it will shut up and stop screaming at me or I will move on to another treatment to see if that will shut it up. 

I did start the clinical study yesterday.  I take 6 pills in the morning.  I take 6 pills in the evening.  I gag the entire time I'm taking the pills.  That's A LOT of pills.  The side effects are similar to chemo side effects IF I'm getting the clinical drug.  I can't tell if I'm having side effects because I feel like poo anyways.

Mentally and emotionally I am coping well, I think. Although this is not fun/fair/wanted, I do feel so very loved and blessed.  We are trying to live our life as normal as we can during this crazy roller coaster and trying to shelter the monsters from any pain we can. Aaron has been amazing and I have no doubt he will continue to be a rock when I need to lean on him.

I still haven't made it through all of my messages and I'm sorry if I haven't responded.  I try to answer a few at a time when I'm feeling strong enough to read all of you kind thoughts and love, but sometimes I just want to pretend this isn't happening instead.

I am very excited to start the lent Bible study.  At our kick off meeting it was refreshing to see the vulnerability of others as they expressed their prayer requests. I constantly feel so blessed to have such amazing people around me as we pray for each other.

So, there is the update.  I am still scheduled to have my first chemo treatment on the 17th. I am still planning to shut this stupid cancer up and regain some of my energy.  I am still very hopeful for treatment options to be discovered.  I am still hopeful that we can move mountains.

Oh, I'm still VERY hopeful that I can help my babies so they never have to go through this.  My doctor anticipates a study being released soon that will attack the BRCA gene mutation that I have.  He is aware that I want to be a part of any study that can alter this pain in my ass gene and will happily continue to be a lab rat in any experiment that will gain knowledge and power against this gene.  BE READY AND CANCER AWARE.

Be strong and take heart, all you who hope in the LORD. Psalm 31:24

Lots of love,

Specific Prayer Requests

"Um, Laura, you are trending in my newsfeed on facebook."

COMPLETELY AWESOME!!  Just think about how many people are praying for me!! 

Seriously, thank you all for sharing my story, seeking additional prayers on my behalf and talking with the people that I need to be in contact with in order to move this mountain.

We met with the oncologist at the Cleveland Clinic on Friday before my bone marrow biopsy.  He is currently approved for a clinical that HE WROTE-how cool.  The trial involves a pill form of an immune system boost OR a placebo in addition to the recommended second line of treatment: taxotere- Chemotherapy.  Either way, I will be getting the chemotherapy that is most widely used to treat a recurrence of breast cancer. 

I talked with a doctor at MD Anderson Cancer Center to discuss recommendations from them.  He was on board with ALL of the recommendations of my oncologist in Cleveland (and added rest and a positive attitude to the recommended treatment).  The opportunity to conference with this doctor is one of the crazy/beautiful things about life.  When I said yes to a bookkeeping job 10+ years ago, I would have never guessed I would need the connections I've made here as a matter of life or death.  When you have to make treatment decisions for yourself or a loved one, it's emotionally exhausting.  "Am I making the right call?"  "Should we get a second/third/fourth opinion?" "What if my body responds better to the other drug?" Plus, a million, trillion other random thoughts. So, when someone from a world renowned cancer center states his plan would be pretty much identical, it's very reassuring.

The plan:

I will start a clinical trial on Tuesday (2/10) by taking two pills every day. HOPEFULLY, it will be the immune system boost and not the placebo.  I have to go to the clinic to retrieve my pills and answer questions about side effects, energy levels, etc.

I will start taxotere-chemo on 2/17, via IV.

I will have a scan on 2/24.

This will be the cycle every three weeks for 4-6 months or as long as I can tolerate the side effects. They will also squeeze in some Reclast/Zometa once a month to encourage healthy bone growth. Currently, I am planning to work when I'm feeling up to it.  My bosses have been great and want me here as much as I'm able.  I am also planning a few vacations.  The first one is a girls getaway and it works out to be a good week chemo-wise:)

That's the latest scoop on my health.  I think I've been keeping everyone updated on our fourth child from China, Helen.  Her 13th birthday was perfection and all of us are going to miss her when she leaves.

As I prepare my mind and body again for torture, I have a few specific prayer requests:
-That I get the immune system boost and not the placebo.
-That I tolerate the cancer well and more importantly, it blasts the shit out of the cancer and works like round up on weeds (MD Anderson doctors comparison;)).
-That my children see as little of my side effects as possible and as many of my quirky, fun traits instead.
-That my immediate family finds peace with this new hurdle and strength to cope with this diagnosis with grace.

Heidi took pictures, asked a thousand questions, and made mental notes of our appointment on Friday.  I have invited her to share this experience from her point of view and write a guest blog...I THINK she will, but I KNOW it will be late.  She's NEVER on time;)  Here is the update in the meantime.

Mustard Seed

Last week, after I told my radiologist that I was having headaches, I went in for a MRI.  I have a couple wisdom teeth that have decided to attempt to squish themselves into my already overcrowded mouth.  I explained my headaches away as the result of the impacted wisdom teeth.  Dr. Ahuja thought we should be safe and get a MRI to check it out...just to make sure.

On Tuesday he called and said the MRI indicates some abnormal activity in my skull base and spine and would like me to have a bone scan.

NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!

(Ok, I'll be there.)

My co-worker brought me a mustard seed.  With tears in his eyes, he told me to hold on tight to my faith.  Let's move this mountain. 

Matthew 17:19-21 Jesus Heals a Boy with a Demon
…19Then the disciples came to Jesus privately and said, "Why could we not drive it out?" 20And He said to them, "Because of the littleness of your faith; for truly I say to you, if you have faith the size of a mustard seed, you will say to this mountain, 'Move from here to there,' and it will move; and nothing will be impossible to you. 21"But this kind does not go out except by prayer and fasting."

 So, Friday morning I went for the bone scan. 

 In and out of the tube.  In and out of the thoughts running wild in my head.

 Think of Florida, the beach was so perfect and so relaxing when I went last year with the bearded man.  I don't have any new pain.  I don't have any new signs or symptoms other than a mild headache.  This can't be happening!!

 But, I watched the screen as the rad tech snapped his fingers to "Only the Good Die Young".  (NO, I'm NOT shitting you.  This song was playing and he was actually snapping his fingers to the beat.  I pictured him behind me dancing.  I wanted to scream: I'm 33!! Aren't you looking at the imaging!?! I can see the spots, can't you!?! STOP SINGING!!!)

 And the test went ON AND ON AND ON.  When he said he needed more shots of my hips, I said something like: yeah, I saw the hot spots while you were scanning.  He tried to explain that he is just very thorough.  I promptly called him a liar.

I have read the report.  I have multiple hot spots on my bones.  On my 33 year old bones, there are hot spots where cancer is growing.  They are called bone mets.

Fuck cancer.

Last night was the second most difficult day of my life.  I told my beautiful little babies that the cancer is back.  This time they know what it entails and had many more questions.

Will you die?

Does this run in our family?

Who will take care of us if you die?

Will you lose your hair again?

Will you be weak? Can we still hug you and cuddle you?  Will you tell our teachers in case we are sad? Can I tell my friends so that they can comfort me?

So.many.questions.

So.few.answers.

So many tears.  Never enough years.

Right now, we are still on the way up a VERY big hill on this rollercoaster.  I have a petscan tomorrow to see if the (#*$&#)@(*$& cancer cells are growing anywhere else.  I have appointments to come up with a plan of action Thursday and Friday. 

The plan is no longer in hopes of a cure, but the extension of quality life with my loved ones.  I know multiple woman living with metastatic breast cancer for many, many years.  I plan to be one of them and will continue to hope and pray for a cure in the meantime.

I have yelled at God. I have questioned why!!

But, I have decided it will do much more good if I relax and talk to him instead.  Tell him all of the many reasons I need him to cure me. That I need Him to give me more time here.  I have so much I want to do still and say.

Please join me.  Talk to Him.  Tell Him we need more time. Even if your faith is as tiny as that little mustard seed in the picture above. Hold tight to faith.


Hope-Faith-Love

XOXO,

Encourage

Just breathe. LOVE. Survive.  BELIEVE.

Without actually stating aloud a mantra each year, I have embraced one or two mantras the last few years.  "Just breathe" was swirling around in my head as I said goodbye to my dad; as I wished and prayed for his peace. "LOVE" took over in the year or so after he passed as I tried my hardest to concentrate on the love that surrounded me and "my people". I didn't choose "survive", it chose me.  Yet, I certainly did live it in 2013.  I hope I always have "believe" in my thoughts and in my heart, but I tried to focus a lot of energy on it as I paved my path to my "new normal" in 2014.

I've been trying to think of what word/phrase I want to concentrate this year and I think I have it.

 ENCOURAGE

So many times in life I catch myself competing.  Against my peers at the office and in the legal industry.  Against my husband for a war I really shouldn't WANT to win: who does more in the household to make it run effectively. Against other moms that are more creative and crafty than I am.  Against other woman that are more in shape and in style than I am (obviously, this is not a hard task if you take a glance at my facebook page and see my AWESOME gaucho pants).  Against other marriages to see how my own marriage matches up.  Against other friends for attention and time that seems to be so hard to find these days between the schedules we keep. Against my very own mind to feel accomplished/enough/satisfied.

I often read the encouraging words on Pinterest and pin them to a Pinterest board as a reminder to myself.  I write little encouraging notes to myself in my planner and in my faith journal.   I speak encouraging words often to my monsters, spouse, family and friends.

Yet, I often find myself fighting the urge to rise up and attack when push comes to shove.  In all honesty, I would have to admit that one of my coping mechanisms is deflection.  It's pretty easy for me to sway an argument in my favor when I use deflection and/or talk down to the person I am communicating with.  Aaron has called me out on this behavior multiple times and I try really hard not to speak to him in a demeaning and venomous tone anymore.  Still, it is very easy for me to revert to deflection and use a demeaning tone when I am feeling defensive or insecure.

In an attempt to have more authentic and real relationships with my loved ones, I am going to concentrate on "ENCOURAGE" this year with the notion that it will be contagious.

Before I react, I am going to think of ways to find the good, concentrate on building others up and encourage them.  Rather than defense, I want to play offense using encouragement.

I've started testing this word: encourage.  Most of the time, encouraging behavior comes natural to me.  However, when I'm insecure and unsure, it's difficult for me to do.  When my feelers are hurting, it is hard to step away and find something positive to focus on.  I have a hard time keeping my BIG MOUTH shut long enough to listen.  I realize that I'm going to slip up and make mistakes, but I'm going to forgive myself and encourage myself to try harder and do better.  I'm still going to be in competition, but competition only with myself.

So, I'm not really making any resolutions this year.  Usually, I vow to eat clean, workout or schedule weekends of nothing, but I'm going to be gentle on myself this year.  Instead of giving up food I love or clearing my schedule, I'm going to focus my energy on encouraging myself and others.

Enjoy

Nice

Communication

Of

Understanding,

Reassurance,

Appreciation, (and)

Genuine

Encouragement.

Encourage positive change.  

Encourage hard work and dedication.  

Encourage learning and creativity. 

Encourage love and forgiveness. 

XOXO,

PS: I haven't check in health wise in quite a while.  Positive check up with plastic surgeon last week.  My insurance has approved the final step in foob creation and I selected a date to have (HOPEFULLY) my last foob surgery in a few months. I am clear to workout, but it's so much easier to sit on the couch;) I have a follow-up with my radiation oncologist this week and then I should be free of appointments for a few months! Overall though, my health looks good.  I have a few side effects from the maintenance drugs that are annoying, but manageable.

Nina has ENCOURAGED me to blow dry and use a straightener on my hair, but like I said, I'm not really that great at listening!! She probably wishes I would inquire about her amazing foundation (or eyeliner, mascara, blush, nail polish remover or hair product too):))  I'm just trying to encourage this year though!! Sheesh!

Light>Negative Feelers

What feeds your feelings of resentment/anger/jealousy/frustration/shame/fear/doubt/sadness/insecurities/etc?

How do you combat those negative feelers?

Why do you let the negative thoughts rest in your mind at all?  How can you take the fuel away from the fire when it seems to be an uncontrolled mess; spreading fast like wildfire?

Once upon a time, not all that long ago, I would drink the negative feelers away.   If I was having a bad day, I would have multiple drinks and forget about whatever negative feelings were creeping in. *I still enjoy having drinks with my hubby and friends, but I don’t reach for a beer whenever I’m feeling down.*

Or, sometimes I would pretend the feelings that were building up inside of me weren’t really there at all.  Like if I pretended not to be hurt/sad/mad, that I wouldn’t feel the feelings at all. Fake it until you make it, right?  This contributed to the wall that I built to protect myself.  I wouldn’t let many people inside the wall around my heart. Some would probably suggest that I have never/will never let anyone completely in.  I’m a work in progress, you know;)

So last night, I was struggling with these thoughts on how to cope.  What is the best way to cope when you are fighting demons in your head?  What coping strategies can I pass on to the monsters?  I mean you can't really tell kids to go get a beer when they are upset, that's not "appropriate", right?!?

So, what coping skills do you use? Do you attempt to eliminate the things that feed the negative feelers? Concentrate on the positives instead?

I was even going to start a facebook thread…until I opened my Jesus Calling book!

December 29: "Trust Me with every fiber of your being! What I can accomplish in and through you is proportional to how much you depend on Me... I care as much about your tiny trust-steps through daily life as about your dramatic leaps of faith... Consistently trusting in me is vital..."

It continues to talk about putting your faith in Him. Well, DUH!! Why didn’t I think of that sooner!?!

HELLO!?!?  COPING SKILL #1 and ONLY!  It’s been directly in front of, behind, beside me, and inside of me all along.

So, I took my Jesus Calling book and read the wise devotional.  I opened another devotional from one of my forever friends next. I sat in the quiet. **I used to HATE quiet.  I’m guessing it’s because I didn’t really like myself.  When it was quiet in my heart and head, it was easy for my mind to fill with thoughts of guilt, sadness, not being worthy.**  Last night, I sat in the quiet and prayed for light. Light to cast out the darkness in my heart. Light to take away the bad feelers and open my heart to all of the goodness.  Light that I know He provides for me whenever I ask.  In both the tiny trust-steps through daily life and in the dramatic leaps of faith, He is there.  ALWAYS.

I can teach that coping method to the monsters! I invite you to try it!  He’s actually a pretty cool dude, if you get to know Him.  He loves it when I am quiet and still.  It’s usually when we have the best conversations.  Where we have our most meaningful conversations.  Where I am filled with ways that I can change the world.  One tiny idea at a time, one small heart at a time, through and for Him, I choose light.

CHOOSE LIGHT.

XOXO,







(Thumper;))

OHTOBEAMAN Post 19457

Women: In your adult life, have you EVER taken your temperature? I mean, what's the point?  You know you're sick, you know you still have to do A, B and C, right?  Do you remember

Men: Do you take your temperature to validate your sickness to your spouse?

Purely posting as a study.  NOT because the world stops when men are sick and continues at 1,000 mph when women are sick!! NOT because the BM is sick.  Purely as a study!!! :P

PS to men: Your spouse doesn't care what number the thermometer reads. Take some medicine and take out the garbage.

At least he's cute!!