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.