The Good. The Bad. The Ugly.

Little overdue again but thankful that y’all check on me, check the blog (even if there’s nothing new for 2 weeks!), and send the love.  This week’s update is The Good.  The Bad.  The Ugly.

The Good.

The best news I have to report is a big answer to prayer!  In the last post, I explained that I was praying about participating in a trial for a cancer vaccine against recurrence that has been in development for a long time and the oncology  community is real excited about it.  I am too!  Except for the Houston part.  I was emailing with the research coordinator at MD Anderson last week to ask again how much time I had before I needed to make a decision (I need to have a platelets test done before I finish radiation) and she wrote back to tell me the super awesome and exciting news that UT Southwestern (less than 10 miles from our house instead of 4 hours!) is now up and running as a new research site.  I’m thrilled.  And so thankful!  I didn’t want further disruptions to Lincoln’s world and yet really wanted to participate – for benefit of others and possibly myself (50% chance of receiving drug in blinded study).  And now I can!  There are some tests and scheduling things left to confirm and coordinate but the biggest hurdle of all is no longer an issue.  After having prayed a ton about it over the weekend before last, I marveled at God’s kindness to me to hear this fun news early the next week.

In other fun news, Linc officially loves corny dogs and the State Fair.  Smart kid huh? What’s not to love about this fried goodness?!  It may be years before he knows about the benefits of mustard but, for now, he’s quite happy without the yellow.  I didn’t think to give him a bite of mine (some might call it selfish …) but one of Gigi’s boys, Juan, offered him a bite of his and the rest is corn-dog-greatness-history.  He also liked the Tornado Tators (my personal favorite) and the fried s’more.  Keepin’ it fried and raisin’ him right.

And, for my last note about good things that have made me smile in the last couple of weeks, I first need to give you a little backstory.  2 of my dear college roommates were Mel and Gulley.  Mel and I lived together for 2 years in college. Gulley did an extra stint in on-campus housing our sophomore year but since she wasn’t too happy to be living in the dorm when many of us had moved off-campus, it officially became named “the D” and she pretty much unofficially moved in with us.  These 2 friends have love me and each other and Aggie football in big and real ways.  They were none too pleased with me in college when I would tell them I was gonna skip a game to study because the libraries were so quiet during games.  And I understand if you’re also thinking that’s especially lame when you go to a school like A&M where football games are practically sacred religious events.  Scott is quite unimpressed with this truth about me as well.  And, I admit it’s a little fact I’m not too proud of either.  But, Mel and Gulley will also be quick to admit that their grades weren’t something they were always proud of either and that maybe they should have spent more time in the library (though never on game days) while I should have spent more time at football games!?  Let’s just say they had more fun than I did – and everything I did was more fun with them.  The same is true today.  Even breast cancer is more fun with them.  And definitely Aggie football.  As it turns out, Scott has gone fishing for 2011 and 2012 Aggie season opening games and I’ve been quite happy to take Linc to see the girls and watch the games with them.  And, they came up to take care of me and Linc during my first round of really tough chemo (which, thankfully, turned out not to be as tough as we expected so I had more time with them than I did in bed!).  And, since they’re great Ags who love this Ag but hate the cancer, it was only fitting that Gulley’s mom would buy us all “BTHO Breast Cancer” shirts.  I got a  text with this picture and a couple days later my one-and-only breast cancer shirt arrived.  Y’all are GOOD to me.  And I love you.

The Bad. 

I’m not really “bad” but I’m not great either.  I’m holding up ok but definitely feel the effects of the last 9 months.  As I overheard Scott telling a friend last night, the cumulative effect of treatment, doctor’s appointments, side effects, hot flashes, and sleep issues add up.  I’m not “beat down” but feel a bit “beat up.”  I’ve always had an easy time falling asleep and sleeping soundly through the night  (maybe too good as I’ve mentioned before that I’m one to oversleep for significant events like college exams and flights) but I’m now awake multiple times a night- I’m either hot (and throwing off covers) or cold (because I’ve thrown off all the covers) or having to go to the bathroom.  And these are all new and unwanted issues.  And, it doesn’t help that I have to be at Baylor by a little after 7 every morning.  Thankfully, we are in the home stretch for radiation.  Today, I completed 23 of 33 treatments so I’m just over 2/3 done with radiation treatment.  I would finish the standard treatment protocol this week but both our radiation oncologist at Baylor and MD Anderson recommended adding a “boost” (their technical term, not mine) of 8 more treatments targeted at the tumor site.  So, tomorrow, they’ll reconfigure the machines for this last course of radiation treatment.

The Ugly.   

This is my chest as of this morning prior to treatment.  As the nurse put it, I’m a “crispy critter” (not sure if that was a technical term or not?).  And, yes, it’s painful.  And quite ugly.  I have radiation treatment (essentially x-rays) in 4 different areas: the breast, breastbone (pictured), under my arm, and around my collarbone.  I lay on my back the whole time with the laser above or at an angle (to avoid direct penetration to my heart) and yet the back of my right shoulder is burned.  The x-rays go through my body and burn my shoulder.  Fascinating huh?!  Thankfully, the other areas are red and sensitive but nothing like the burn on my chest.  I’ve learned that the internal mammary lymph nodes aren’t very deep under the skin so the treatment in this area is much more targeted near the surface.  Or, maybe I misunderstood and they’reburning the top layer of my skin off so they can access them directly?  In any event, this will be over soon.  I look forward to sleeping in and ending the daily scorching.  Ive been known to do some really dumb stuff relative to the sun and sunbathing but this is taking it to another level – it’s as if I lay out and get sunburned every day and then I’ve gone back and laid out again the next day.  For 23 days.  Thankfully only 10 more days of burning.

Let the rest and recovery begin and the ugly end.

Thanks to y’all, the good has been sweeter and the bad has been bearable And hopefully the ugly is only temporary.

 

Letter to Lincoln

Dear Lincoln,

I have no idea if you’ll ever read this but I have a few things on my heart about you that I wanted to share in hopes that you will.  By the time you can read, I pray that cancer is in our rear view memory and a distant memory. I pray that I’m still here to help you read it and tell you my story. Our story.  I have every confidence I will be here to do so but the Lord numbers our days and not me. And if cancer has taught me anything, it has taught me that very little of this life is in my control.  If anything. So, hopefully, we are reading this together in a few years and there are a few things from this season that I wanted to share with you.

Today is October 2nd, 2012.  For some time, the date of October 1st has been on my heart.  It marks your 16th month birthday though we didn’t exactly celebrate that or even mention that yesterday.  But, it’s been on my mind because, as of today and going forward, I have been ‘sick’ more of your life than I’ve been ‘well’.  The first 8 months of your life flew by. And, in the same fashion, so did the next 8.  You first crawled the night of my first doctor’s appointment.  February 1st.  You were 8 months old to the day.  I don’t remember being the least bit worried about that first doctor’s appointment or the subsequent one scheduled once we saw the lump on the ultrasound.  Unlike almost every appointment since then, your dad didn’t even go with me.  He had encouraged me to get the lump checked out for months but I was fully convinced it was nursing related.  However, by the following week, our world was turned upside down.  And your little world was disrupted as well.  No more of Mama’s milk and, along with your dad and me, all of our schedules, priorities, and calendars got entirely rearranged.  We have had a ‘new normal’ since February 1st.  I’m a little sad for you.  I’m sad that, along with your dad and I, everybody’s preferences and needs have, at times, had to take a backseat to cancer.  There have been many nights and naps where someone besides us has put you to bed.  Many days where I laid in bed and could hear you cry from your room but had to call for someone else to come get you.  Many days when carrying you or changing your diaper or getting you in or out of the car during brutal summer days completely exhausted me.  And, now, you wake up every weekday morning to a Mama-less home until I get back from radiation.  There are lots of losses for all of us.  And, I’m sad that, as of this week, your little world has been tossled by cancer more than it’s been “normal” (whatever that is!).  It’s kind of odd to me that you don’t know anything else but a bald Mama and lots of babysitters and a revolving door of friends and family.

At the same time, those are some of the greatest gifts of cancer.  You’ve had countless playdates and already a couple sleepovers.  You have more fans and friends that any 16 month old little guy could hope for.  You have big sisters like Hope, Nancy and Claire that have carried you and babied you and adored you for days on end.  You can sleep anywhere and everywhere.  You are a flexible little guy.  Sadly, that isn’t something you learned from me so that’s either great Clouse genes or all the opportunities cancer has given you to learn flexibility and adaptability. I am confident this will serve you well.  You’ve had the incredible privilege of watching the body of Christ take care of our family.  You’ve seen countless meals delivered, countless letters and notes of encouragement, many of Mama’s dear friends who bring groceries or flowers or treats or hugs, and you’ve seen your church family love the fool out of you and your Mama and Daddy.  You have been prayed for by folks who love you dearly and folks you’ve never met.  Your life is bathed in love and prayer.

In many ways, I hope this cancer journey ends soon and smoothly but, in others ways, I pray you continue to get the incredible gifts that cancer has given our family.  I pray that you know and never forget the power of community, compassion, love, prayers, service, and care that has blessed us these last 8 months.  I pray that the relationships that you’ve formed as a result of so many babysitters during these months will continue for years to come.  I hope you never forget your sweet relationships with Aunt B, Po, Aunt Jenn, Gigi, Fafa, Auntie Cheryl, and Louise who have cared for you for many hours on many occasions.  I pray for your special friendships with Juan, Angel, Eric, Felipe, Nancy, Claire, Hope, Travis, Emmy Kate, Charlie, Hudson, Hayes, Hunter, Jackson, Tucker, Lily Ruth, Levi, Greer, Jax, and Lily Grace to still be special friendships in years to come.  These kids have shared their Mamas with you, played with you and delighted in you.  And there are so many others who have spent the day or the night with you just to help Mama get to the doctor or chemotherapy or rest or have the night out with your dad.  Your little friends and Mama’s big friends have loved me so well by loving you.

I thank you, little man, for the bright spot you are in the midst of this season.  You were an unexpected gift.  And the sweetest of all surprises.  God knew we needed you.   He knew there would be a short window in our marriage where children would even be possible before cancer and, in His grace and providence, He showed that He’s the author of life, more powerful than birth control, and gave us the gift of you.  You are a constant reminder of God’s goodness and sovereignty.

I pray that, early in your life and for the rest of your days, you will know how high and how wide and how deep is the love of Christ because it has been so consistently modeled for you by our friends and family over these last 8 months.  I pray that the way you’ve learned to adjust to life’s circumstances will teach you to surrender your will to the Lord’s.  I pray that you will trust Christ’s plans and purposes for your life because you’ve seen His goodness in ours.  I pray that your dad and I will continue to give thanks to God for the great things He has done in a way that creates in you a thirst for a relationship with Him yourself.  I pray that you will have a tender heart and love for people because you’ve been the benefactor of others’ tenderness and love. I pray that the gifts you’ve received this season will far outweigh the burden of a Mama with cancer.

For sure, cancer has been a burden.  On us and on those who have extended their hands to care for us.  But, it’s also been an incredible blessing.  And, I pray that the gifts of this season bless you for years to come.

I love you, little man.  Thanks for all you are.  And I’m excited to see who you will become.  You are a treasured gift to us.  Forever and always.