Friday, May 29, 2015

Foreshadowing

It's been a while since I've written a post in my voice.  Most of you regular readers probably didn't even know I could do this.  It's been...wow, 10 months since my last post?!  I could say something about how this is Ashleigh's blog, how she's the one with cancer, and that she's the one folks really want to hear from...but the truth is, this is about the frequency that I would naturally post even if this was my blog.  Those of you who know me won't be surprised by that...and it probably gives you a healthy insight into how Ashleigh and I work together.  She's the one who can actually stay on top of keeping a blog current on a weekly basis, and I'm the one...well, I'm sure I contribute something around here...

Never fear though, as the editor-in-chief of most of Ashleigh's posts, my voice tends to find its way in if there's something to contribute (pro-tip: any sentences you find that are double-spaced after the period are actually me typing, because I value tradition unlike you heathens who single-space your type).

I've had this post in mind for a while now, and the events of today are as good an impetus as any to publish it.  Two years ago (almost to the day), Ashleigh was wrapping up her time at MIT, and she was asked by her classmates and friends to speak at a storytelling venue called "The Yarn".  We worked together to build a fitting summary of our years in Boston, and this was the result.  Ashleigh wants me to point out that much of the content was written by me, so humorous things that I wrote as self-deprecating might have come out a tad...regular-deprecating when she said them; especially comments related to my admitted lack of...let's call it "academic rigor"...in undergrad.  Regardless, I think you'll find that many of the themes here - shared with a group of "Sloanies" (MIT MBA students) over two years ago - are eerily applicable today.

As you'll read below, at the time we had several stories of how God had faithfully come through for us in uncertain times.  As of today, we have several more recent stories of how He has answered (or not answered) our prayers in ways that don't completely make sense to us.  But the central themes are unchanged and even underscored by recent experience: that we don't have control over much in life, despite the "illusions of control that we comfort ourselves with, but at the end of the day we don’t have a cognitive category for...cancer taking a mother [from her children]".  That death is an inevitability that should cause us to consider weighty matters of how we view this life and eternity.  And that, in spite of everything, "God is STILL GOOD.  And still in control.  We just don’t always see everything He can."

So without further ado, here's the video of Ashleigh giving her summation thoughts of our time in Boston (and a transcript below).  I hope you appreciate the continued relevancy of her comments as much as we do...


It was the fall of 2007 – my last year in undergrad at Georgia Tech – the night before the Senior career fair.  I had a long list of companies I’d researched, ready to wow them with my resume, knowledge of their business, and my non-regional diction.  You see, I’d started Georgia Tech as a biomedical engineering major, honestly, because it sounded prestigious.  Then BioChemistry happened, and things went really bad.  But around that same time, someone pointed me to a magical area of study called Industrial Engineering, where you could tell OTHER people what to do, improve processes, and make plans, and even use MATH to do it.  Ever since I single-handedly planned my 8th birthday party - I made a list of invitations, a grocery list, and schedule for my mom to take me to Party City and everywhere else I needed to go for favors, decorations, etc - I’ve been what you might call a “planner”.  And to combine my natural penchant for process optimization with engineering, and do that professionally…well, that was the dream.

So I’m about to head to the career fair, with a pretty decent resume that I’d worked hard for.  I had also recently heard of this profession where you didn’t really work for a company that “did” anything, so much as told OTHER companies HOW to do what they do.  A “consultant”, they called it.  So I saw this as the culminating achievement to cap off 18 years of hard work at school, and I went hard after it.  Consulting firms liked me, and I certainly enjoyed getting wined and dined at interviews.  It seemed like I was well on track towards being a jet-setting professional consultant with all the perks.  The only problem was…well, I was in love.You see, my wonderful husband (who I should mention has been a hard-working successful engineer for 7 years now), didn’t share my same passion for “hard work”, or “going to class”, or even “passing grades” in undergrad.  His resume didn’t quite shine like mine.  But I knew I wanted to marry him – we were engaged at the time.  I was understandably frustrated that my employment options that I’d worked hard to keep broad and exciting were functionally limited by the career options and work ethic of someone over whom I had so little control. AKA My job search was limited to wherever he could find a job.

So this tension between what I felt I “deserved” in a potential job and what I was apparently going to be limited to, combined with the self and society imposed expectations to be a happy homemaker wife and not necessarily a career woman, built and built through recruiting season to the night I’m describing.  When, after a particularly long session of hashing out our future plans with Brad, I turned and yelled to the entire sorority house: <yell here> “Listen ladies, it doesn’t matter how good you do in school.  Just look pretty and work on finding a good husband, because that’s all we should aspire to”. <dramatic pause>

So I initially had a few minor issues with finding my identity - balancing professional and personal life.  I’m sure that’s a struggle that many of you can relate to tonight. But there’s a partially obscured, and unexpected, moral to this story – if you’re not careful you’ll miss it behind “follow your dreams and everything will work out”.  The reason why I give you this window into a time in my life when I didn’t know how things were going to turn out – when I honestly didn’t see a WAY they could turn out – is to explain to you what is ultimately the guiding force behind the path I’ve taken in my life.

There were just so many variables even in that one little life transition that I couldn’t control – where Brad could get a job, which companies were hiring, which cities we could live in, whether he would decide I was crazy enough that he didn’t want to marry me anyway…too many variables for me to optimize, too many for me to plan for, and I couldn’t handle it.

Fast forward to this semester, and there are even more variables I can’t account for in the optimization that is my life – both minor variables like when papers are due, but major ones too.  If I had stayed just 15 minutes longer at the Boston Marathon finish line last month, where I was hanging out with my 3-month-old Noah, who knows what would have happened.  I was right there.  Then later that same week I was walking home from Walker Memorial to Eastgate at the exact same time that the gunmen were making their way from Stata to 3rd street after having shot Shawn Collier.  We followed a parallel path not 100 feet from each other – what if they had turned towards Memorial Drive?

Then you have other things outside my control that marked my first year at Sloan – my Aunt died of cancer at 42, leaving behind 4 beautiful daughters – my cousins – between the ages of 8 and 14.  Then you have a situation like Nikita’s passing earlier this year, and she was involved in our Bible study with Sloan Christian Fellowship.  And you’re left asking, what could I have DONE?  What can I DO?  Do I even have any control over ANYTHING in this life?

The perhaps unique perspective I want to share with you tonight, is that the short answer to that question is “no, we don’t have control.  Over much of anything, really”.  We have illusions of control that we comfort ourselves with, but at the end of the day we don’t have a cognitive category for dealing with pressure cookers exploding in the street at a road race, or cancer taking the life of a mother not much older than I am, or a fellow classmate being here one day and just…gone…the next…or even something comparatively simple like forecasting where we’re going to live and what we’re going to do for work next year.  Even if we have signed offer letters with 6-figure salaries, even if we think our families are happy and healthy – there’s not one of us in here whose world couldn’t be shattered by one phone call.

I want everyone here to humor me for a second – find your pulse.  Everyone do it <pause>.  Most of us take completely for granted that our hearts just…beat.  But what I want to impress on you tonight, the best example of how not-in-control we really are, is this simple fact: someday that pulsing you feel won’t do that anymore.   It’s not morbid – denying that fact is intellectually dishonest bordering on willful ignorance.  The Bible says that we are nothing but a vapor – a mist that is here today, gone TODAY.  It also says that a man who lives like he’s never going to die is the height of foolish self-delusion, because if there’s one undeniable fact that we’ve all been faced with this year between Nikita and the bombings and Sean Collier, it’s that we are all going to die, and that none of us have any real control over it.

So where does this leave us?  I mention “The Bible says”, both because I believe what it says and to demonstrate that it has a bearing on our everyday lives, the struggles we face.  I am here as a logical, thinking, fellow-classmate to declare that I believe even though we have almost no control over what happens in our lives, there is a God who IS in absolute control.  And here’s the great news – He’s also absolutely loving, and caring.

I can tell you how things ended up after that blow-up at my sorority house all those years ago – like so many other times in my life I could tell you about, God orchestrated all the details in ways I couldn’t have planned better myself.  Brad got a great engineering job and I got to be the jet-setting consultant.  Then, in another big transition we really struggled through, God brought us to Boston when we thought there was no logistical way we could ever leave our hometown.  I could fill another 10 minutes with the hurdles He overcame there.  THEN, he blessed us with a baby boy three months ago, when our biggest reason for not wanting to come to Boston was that it would delay us being able to start a family.  He continues to work out all the details in amazing ways that would take another whole Yarn to describe to you.

I recognize that my examples of God’s provision leave a gaping hole – that He has seen us through all the big transitions in our lives, that for whatever reason I left the finish line just in time; but what about when the stars don’t align with jobs, or all the folks who didn’t leave the finish line when I did?  What about the handful of dear friends I have who have really struggled to get pregnant, while Noah came along almost just by thinking about him.  I certainly don’t DESERVE any of the good things God’s given us…quite the contrary.  I don’t have the time to give an appropriate treatment of God’s Sovereignty and the nature of evil (and really that’s more my Husband’s deal – talk to him if you’re interested in that debate), but my point is even when my aunt died and left 4 girls behind, and even in tragedies like the marathon and Nikita’s passing, my faith allows me to believe that God is STILL GOOD.  And still in control.  We just don’t always see everything He can.

If you tuned out as soon as I mentioned “The Bible” and “God”, I want you to tune back in for a second, because here’s a few applications of what I’ve been talking about that I think we can all get behind, regardless of worldview.  First, recognize that every interaction you have with fellow Sloanies is an interaction with another warm-blooded, feeling, human being like you.  So often many of our interactions reduce to transactional surface-level pleasantries that incentivize us to pretend everything’s great: “yeah, I’m working for that startup; sure, I can connect you with him on Linkedin; oh, I think I might head to New York after that banking/consulting job”.  Meanwhile maybe there’s another Nikita behind the face in front of you, slowly breaking apart.  The culture we should encourage at Sloan should look at your fellow classmates as more than future networking connections and job leads, but as human beings who all struggle, and that’s ok.

Secondly, I encourage you take some time to think about your mortality.  It’s not a happy subject, but our death is an inevitability that bears some thinking about.  If we’re honest, everything else should take a back seat until we get this one figured out.  In the face of recent tragedies it is intellectually dishonest to ignore…I certainly thought about it again after being at the marathon, and after being close to where Sean was killed.  Whatever you do with your conclusions should help inform how you live your life, down to your day-to-day life here at Sloan.  The worldview to which I ascribe finds hope in the face of the inevitability of death because we follow the teaching of the only man who died and then came back to tell us about it.  So death still scares me sometimes, but a lot less because I trust that God – Jesus – knows what he’s talking about.  If you’d like to talk more about my faith, my husband or I (or any leader in Sloan Christian Fellowship) would love to talk with you at greater length.

We are not in control – God is.

We can’t see what’s going on under the surface, so take time to get to know your classmates on a personal level.

And yes, we’re all going to die, and we don’t know when – so we should let that affect how we think and live today.

These are the things I’ve been reminded of in my time at Sloan, the things that have encouraged my faith and allowed me to help lead Sloan Christian Fellowship through a difficult year.  Sorry they’re not the most light-hearted topics to talk about at the Yarn, but I think all the more important that we think about them BECAUSE of their weightiness.  Thank you.

Thursday, May 28, 2015

Praises + Prayers (5/28/15)

As a follow-up to that last update, here are some ways you can pray for me and my family during this time:

Praises
+ Getting to Houston with all the flooding that has been going on was a breeze.
+ I have doctors all over the US that care about me and want to see me continue to live.
+ I have the most supportive and wonderful husband for this journey. He has and continues to be incredible.
+ My parents have been so supportive to allow us to travel to MDA so often.
+ Cancer is not yet in tumor form in my lungs or liver (but it is in the pleural space in the lungs)

Prayers
+ For a miracle. That one of these trial drugs would be the trick and be the kryptonite to my very aggressive flavor of cancer.
+ For wisdom. That God would supernaturally open doors for me to get into the right trial as soon as possible. That God would guide my friend Angela and me to pick out the best options to start pursuing.
+ For strength. Brad and I are emotionally at zero right now. To learn that you will soon be separated (albeit temporarily) from your best friend and from your kids is absolutely heart-breaking. Pray for our broken hearts.
+ For grace. We always said we didn't know how we would face this day, if and when it came, but we said that God would give us grace for in that day and be faithful in that day. Pray that we would have supernatural peace and joy to face the days ahead. Especially as my pain and discomfort quickly increases and my functionality and independence starts to decrease.
+ For my family.  Please pray for Brad, our parents, siblings, and most of all my children. Pray that God would protect my family from the trauma of losing a loved one. Please pray that their hearts would not become bitter to God and that He would strengthen them through this very difficult trial.
+ For courage. Just like I didn't want to waste my cancer, I do not want to waste my death. Pray that God would give me courage to wisely use my remaining time on this earth, no matter how short.

Love you guys so much.

"Widespread metastatic cancer"

Those were the summary words from my PET scan results today. I can barely believe it. It feels like a horrible nightmare where I just can't seem to wake up. Lord, please let me wake up from this nightmare.

Simply put, I have THE most aggressive, fastest growing breast cancer possible - inflammatory, triple negative, metastatic, with 90%+ of my cells actively replicating. I went from a completely clear bone scan three weeks ago to too many bone lesions to count. The biggest being 4cm on my sacrum (most likely contributing to the back pain that has been keeping me up at night).

My cancer was also found in my lungs - in the pleural space. This is called pleural effusion. If this is how I end up dying it feels like you are drowning and you die by finally not being able to get in a breath - pleasant isn't it? This is the side of breast cancer no one ever tells you about.

The doctor wouldn't give me a timetable on how long it would take me to die if we did nothing, but told me essentially to do the math given what I know about how agressive it is: it would be very, very soon.

And speaking of doing nothing, the second blow was this: there are no promising/standard of care options left for me. So we very well may do more chemos and trials and have none of them work. None of them are even particularly likely to work. In the past I would half-jokingly say that if and when I became metastatic I would die quickly because good tools to fight this stage simply don't exist. When I used to say that, I (1) honestly didn't think this day would come and (2) thought something magical would happen before now - that there would be some option I just didn't know about or some new treatment coming out that would be able to extend my life. When the clinical trials group at the top IBC clinic in the nation says they have nothing for you, you know you are pretty much screwed.

I have a friend coming over tonight to help me evaluate and prioritize the handful of trials we have found that are in stage 1. A stage 1 trial means they are testing a specific protocol to see if it is safe in humans, unsure if it will actually help or not, and may even be potentially dangerous. We are looking at trials all over the country. Please pray that we would have wisdom to pick the right trials to pursue and that there would be drugs out there that would be that "magic bullet" every cancer patient dreams of. And that we could find and get in the right trial very, very quickly. My cancer is spreading before our eyes.

Tonight (May 28th) my church is holding a prayer vigil at First Baptist Allen (on Main/McDermott & 75) from 6:45-7:45pm. We are still in Houston but will try to facetime/skype in. Anyone is welcome to attend.

Thank you for your prayers and support. We will need them greatly in the coming weeks for as long as I have left on this earth. <3

Wednesday, May 27, 2015

Trust

"Do you trust Me?"

A few months ago I was really struggling with my diagnosis, response to treatment, and generally stressing out about what the next go-to plan would be for getting rid of the cancer that is trying to take over my body. This was during a time when going out for a run was still an option for me. I [used to] love running. It is a perfect way to clear your head and help you think more clearly.

At the end of a run one day, I could hear God asking me, "Ashleigh, do you trust me?"

I have trusted God with finding me a mate, blessing me with children, and helping me make career and life decisions. I even trust him when making an online purchase that I'm not sure will arrive at my house the right shade of beige (an exaggeration, but not by much!).

Before the run I had started the post - "Losing HOPE" and when I came back I finished the last paragraph. I can picture right where I was in our loop around the block when my heart finally submitted to His will and I said - "Lord, I trust you. No matter what the outcome. I trust that you will work all things out for my good and your glory- even if that means death."

This surrender of my heart and ultimately my life is a weekly, daily, and sometimes hourly exercise. How many times in the last week since finding out the cancer has spread have I been upset? How many times has a beautiful moment laughing with the boys turned to tears as I realize this could all be over oh-so-soon? It is not an easy task to say- "Not my will, but thine be done."

Do those words sound familiar? They should- they are the same ones Jesus said right before being taken into custody by the Roman officials to begin trials that would ultimately lead to his crucifixion. (Luke 22:42) I don't feel so bad at my grasping for more time and begging God to not let me go through suffering when I remember Jesus did the same thing in the Garden of Gethsemane.

During one of Brad and my "talks" we give to church groups, someone asked if I had connected that when Jesus asked for this "cup to be taken from him" aka not have to go thru crucifixion, God said "no".

I want so badly for a miracle, to be healed, to have the life I always assumed I would have time to live. I pray. You pray. We all pray for...ice cream...er, wait, I mean healing! (and ice cream too) But that doesn't mean God will say yes.

Sometimes we don't get what we want in this life. Sometimes the baby we've prayed for, hoped for, spent a whole lotta money towards fertility treatments for, ultimately doesn't come. Sometimes the timeline you had planned for getting married hasn't happened. Sometimes our loved ones pass too soon, or our child gets a bad medical report, or our house is carried away in a flood. To put it eloquently- sometimes life just sucks.

Can God still be trusted?

Yes.

Why can God be trusted? How can I trust him? I'll leave the writer of Romans to answer that question:

"Can anything separate us from Christ's love? Does it mean he no longer loves us if we have trouble or calamity, or are persecuted, or hungry, or destitute, or in danger, or threatened with death?...No, despite all these things, overwhelming victory is ours through Christ, who loved us. 

And I am convinced that nothing can ever separate us from God's love. Neither death nor life,  neither angels nor demons, neither our fears for today nor our worries about tomorrow- not even the powers of hell can separate us from God's love. No power in the sky above or in the earth below- indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord." (Romans 8:35,37-39)

Ultimately it comes down to my world-view and belief system that says- this life is not all there is. And in the scheme of eternity, God is absolutely working ALL things together for good for those that love Him and are called according to His purpose (Romans 8:28). Even a stage four breast cancer diagnosis.

Thursday, May 21, 2015

I am le tired

If you were around the interwebs in 2004 when I was in college this screen shot might mean something to you, if not, don't worry about it. :-)
Today I received a call that I had pictured in my head many times before. I imagined myself crumpling to the floor in a puddle of tears. Instead, I was loading groceries into the car while talking to the UT Southwestern radiologist about my case as if I was just another third-party patient of his - not like we were actually discussing...me.

My cross axillary lymph node (opposite side, under my armpit) that was biopsied last week came back positive for high grade (quickly replicating/aggressive) invasive ductal carcinoma (breast cancer). Part of me wasn't that surprised. When a 2 cm lymph node pops up quickly and you have a 95% chance of your cancer coming back, you sorta see it coming. Part of me was surprised because last week the radiologist had good arguments on why it looked possibly benign and even offered for me not to get it biopsied and just watch it instead.

We head back to MDAnderson next Tuesday to do scans and then figure out what to do next. Best case scenario is that it is isolated to the lymph nodes, we remove them via surgery, and then radiate the heck out of my left armpit. Essentially rinse and repeat on what we just did on the right side.

Worse case scenario is that it has spread to my other organs as well and we choose between one of the low-probability-of-working chemos still available to me, or I go on trial chemos and people experiment on me. Let's pray that's not the case...at least not yet.

Brad and I have been responding fairly light-heartedly about this latest news. Honestly, I think it is partly because we are pretty dog-gone tired. After almost a year of treatments, we are tired of this persistent battle, and tired of getting bad news on a fairly consistent basis. The treatments, the tests, the bad results, the fear, the processing, the emotions, and at the same time, the continuation of day-to-day life- it has given us quite the beat down. And we are emotionally exhausted.

I know that God is still in control, He still loves me, and has a plan....but honestly today my prayer was, "God- why are you trying to kill me??" haha

Deep breath everyone- here we go again.


Monday, May 18, 2015

Back pain, and bone scans, and lymph nodes, Oh My!

I was really hoping the next post I wrote was going to be about my "new normal" - What life is like now that the initial cancer treatments are over. I thought would talk about how I'm getting back into a new routine - trying to heal, rest, and recover. Unfortunately, this post is instead about all the tests I've been having and physical pain I've been experiencing - yay!

Back Pain

As soon as we got back from Houston I stopped all the nightly helpers and delivered meals. I was ready to jump right back into our "normal" life, and do it all by myself. I feel so guilty needing help for so very long- from the people managing the schedule of all the helpers to all the people that came over so many nights instead of getting to their own to-do lists or getting to relax. Instead, they were bathing and feeding my kids. I wanted everyone to get a break, including my parents.

"Giving everyone else a break" required me to lift and care for my 25 and 35 pound babies with a back that had grown weak while recovering from surgery and living in Houston. This led pretty quickly to some extreme back and hip pain. I was on heavy duty pain meds 24/7 to be able to function. At first I didn't realize (or want to believe) this was the culprit. I went to a chiropractor, yoga, physical therapy, and acupuncture. After two weeks of trying everything, the thing that finally helped was me resting my back for a weekend while friends were in town and could lift the kids for me. (Thank you Caitlin for picking up my kids all weekend!!)

Bone Scan

Since the pain came on so suddenly, was so intense (without pain meds I couldn't even think), and seemed to be worsening, that qualified me for a bone scan to check for metastases in my spine. I was pretty nervous about this one. Every time we have a test it always feels like I'm about to start the beginning of the end.

What I've learned after many (thankfully) negative scans is this: you can't start freaking out about the possibility of cancer spreading until you have definite results. Even then, I have to remember that God is in control, He has a plan, and He is going to walk with me through each step- even if the end of that road is an ugly death from cancer.

Cross Lymph Node

Just as we were letting out a big sigh of relief with the negative bone scan, I felt a large lymph node on my left (non-cancer) side under my armpit. I messaged my local doctor to see if I should a) just ignore it, b) wait until the next time I'm in Houston to bring it up, or c) get an ultrasound in Dallas. I quickly received a message back asking if I could come in that afternoon for a scan.

Every time I ask a doctor about some symptom, I'm always praying in the back of my head, "Please say this is totally normal and clearly explainable by some non-life-threatening alternative reason." Whenever they say, "Let's scan this immediately," it's never as good.

My lymph node was 1.7 cm. That's big for me - the largest I ever had on the right side was 1.2 cm. The radiologist gave a few reasons why it may not be cancer and would recommend just watching it unless I was "one of those people who would be worrying about it and feeling it all the time". It was like he knew me or something.

We did a biopsy right then and I'll find out in a few days if it is cancerous. If it is cancerous I will at that point technically be "incurable". But like I mentioned above, I'm not going to worry about that until I know for sure what the scoop is. And surely it won't be positive since that doesn't fit into my plan of being here four years from now to throw David that killer birthday party.

So here's to attempting to rest and recover while keeping two babies alive, remaining full of peace in the midst of uncertainty, and enjoying every day I'm given! Let's do this!

Thursday, May 7, 2015

Radiation Wrap-up

There are a handful of items I want to make sure I document to remember my time in radiation. For some reason I had trouble writing in Houston but now that we are back I'd like to catch up on my five weeks of radiation.

Simulation/Prep

To get started, I first had to go to a "simulation" appointment. This was where a form was made around my body so that I would be positioned in same place each treatment. They also drew lines all over my body to line the machines up the same each time. My treatment field was very large due to how much skin involvement I had. They radiated from my jaw down to almost my belly button, from my side/back to just past the center of my chest. Because it was inflammatory breast cancer, they use the maximum radiation dosage possible.

Some of the lines drawn on my chest
The Treatments

Radiation itself wasn't painful. It was pretty quick- maybe 15 minutes under the machine each session. I asked tons of questions. My radiation therapy team was super nice answering all my questions about how stuff worked. In general, what happens is either photons (going deeper into my chest wall) or electrons (more surface level, to attack the skin) are shot out of this big machine into my chest. The machine can form shapes to match up with the area that needs to be targeted for the photons. For the electrons, they use these cut outs of a material called BLT (not as yummy as the sandwich) to form the shape on my chest.



The photons and electrons zap (medical term, haha) the cells they interact causing free radicals to be released and mess with the cell's DNA (as long as they are in the S phase of cell replication, high school biology anyone?). The cells then have trouble repairing themselves, can't replicate, and die. The healthy cells (like my skin) are damaged, but are able to repair themselves, and so it grows back. The hope is that the cancer cells will not. [medical friends- feel free to correct me if I didn't describe that accurately.]

go radiation go!
My appointments were at least six hours apart so generally it was 7am-ish and again at 1pm-ish but it could be as early as 5:30am and as late as 5:30pm. Towards the end of the five weeks I was so exhausted it was a miracle if I actually showed up on time. And I couldn't even blame it on the traffic since the Hope House was only three minutes away!

Side Effects

Skin/Wound

Some of the side of effects from radiation were my skin turning pink, red, melting, and eventually falling off- it was not pleasant. My scar opened up about an inch so I have to work really hard to keep it clean and not let it get infected. It continued to get worse a week and half after radiation had ended but finally it seems to be turning around. ThankyouJesus!!!

Can you tell which side got the radiation??


Hair

My hair had been getting fairly long, but a couple of weeks into radiation it started falling out again. One of the oncology nurses said it couldn't be from the chemo I used to be on (where it was supposed to fall out but then didn't...you know, after I had dyed my hair green...). She said it definitely wasn't radiation because losing your hair isn't a side effect of radiation. She said it must be that I was stressed. I told her I normally knew when I was stressed and that I was super duper chill right now (no kids to take care of, we are trucking along on the cancer treatment plan...). She said it was probably sub-conscious stress.

Well, thinking that all my hair was about to fall out, I went to the very fancy MDAnderson salon where they give bald people hair cuts for free- woohoo! It is a whole other experience to have IV bags in the "spa" with you alongside patients getting their hair shaved off.

IV bags in the salon
I showed the hairdresser what had been happening, and she instantly knew it was from radiation. It was only falling out from one spot in the back. It turns out that radiation field on my neck passed through the back of my head (uuuh, so was that going through my brain??) and did a little laser hair removal on the way out. Turns out that hair will not be coming back- thankyouverymuchcancer!

Didn't know I was getting laser hair removal too- what a deal!
Fatigue

Another big symptom of radiaiton is fatigue/exhaustion- even worse than chemo for some. I heard lots of stories about women that just spent the entire time in bed- only getting up for their treatments. About half-way through I started feeling it. I would come home after my morning treatment and sleep until the afternoon one. Who knew you would need to set an alarm for 12:30pm?

Even now - 10 days after ending treatment - I still have to take a nap to get through the day, sometimes two. Thankfully my mom is just a phone call away and she can come over when I can't hold my eyes open any longer.

[Sorry, no picture of me sleeping!] :-)

Free Time

Not having two kids to look after gave me a lot of free time. I really enjoyed my days in Houston (when I wasn't sleeping).

I tried to go for a walk or do yoga every day. There was a nice park close to the hospital that I took advantage of often.

Going for walks in the park with my sun hat on- I'm sooo cool!
Some days I would meet with other cancer friends visiting the clinic or friends that work at MDA. If I had other doctors appointments in-between sometimes it made sense to just stick around. There is a grand piano in the Mays Breast Clinic (the building I was normally in) and sometimes volunteers come and play music. It was always a treat to listen- so relaxing!

live piano music, diet dr pepper, fro-yo, and a good book- could you ask for anything more??

Speaking of friends- we hung out with friends almost every night in Houston. That part was super awesome- not having to worry about getting kids in bed by a certain time or arranging a babysitter. On nights where we didn't have a social engagement, we went out on dates to Rice Village or out for Mexican food. We tried to take advantage of our time sans kids.

Driving Home

We typically drove from Dallas to Houston late Sunday evenings (after kids were in bed, sometimes getting in at 1 or 2 in the morning) and back home Friday afternoons after my last treatment. I'm thankful we live in driving distance. Flying back and forth would have been too much money so we either wouldn't have gone to MDA or just stayed the whole time. I'm glad we were able to come home each weekend.

Driving to and from Houston each week
The best part was coming home to these two! Being away made me cherish spending time with them sooooo much! Because we would only be home for a short time, I was able to focus on just being with them versus worrying about to-do's that needed to be done. I've tried to apply that mindset now that we are back in town. I know my kids don't care if the dishes are done or the toys are picked up, but they sure do love it when I'm playing blocks on the floor with them! 

SO good to see the boys on the weekends!!!