Surgery Update

To those of you who’ve been praying and thinking of Jen, I wanted to give a quick update. She is in recovery with near perfect vital signs. We are grateful for Dr Smith and her team who did a bang up job. I would send a picture of Jen resting in her bed, but she might hit me later. They’ll be transferring her to a room shortly where she’ll stay for the night. Thanks for all of your prayers and support. You guys have all loved my wife well.

Thanks,
Scott

Hello Hospital. Bye Bye Baby.

I’ve been asked if I’m ‘ready’ for tomorrow and I don’t know how one properly prepares for a hysterectomy but I have shaved my legs, drank some nasty stuff to empty my innards (TMI?), washed everything in sight (unexpected ‘nesting’ compelled me to do a little compulsive house cleaning), packed a bag for me and for Linc and am hoping that qualifies me as ‘ready’ … because ready or not we check in at Baylor at 9am.

I am definitely ready to have another big part of my treatment plan (one that’s been looming) taken care of. I’m also ready to lay in bed for a few days when its expected to be over 100 degrees in Dallas for the next several days! I may be tempting y’all to jealousy – hysterectomy recovery (laid up in bed with no responsibilities) may be easier than what yall will be doing in 100+ degree weather. As Ive said before and it could be true again: don’t hate me because I have cancer.

In the morning, my baby will leave to be with his Nana and Papa (and happy as can be!) for several days. Scott, my mom and friends will be with me before and after surgery. And even IN surgery I will be with a friend. The doctor who will go in through my belly button and disassemble me is a friend – as well as a great physician. And while I know these people and others will take incredible care of me and Lincoln, it is even sweeter to know that all of the details. decisions and doctors are under the sovereign control of a good and gracious God who has given me the faith to rest in Him. As well as some good rest under anesthesia and pain medication!

Scott and I talked about it today and neither of us have any anxiety about the surgery itself. As he mentioned, if I was having a hysterectomy without the last 18 months of treatment, chemo, surgery, and radiation, maybe it would seem like a bigger deal to us?! But I think we’ve become a bit desensitized to what would otherwise be stressful?! I guess I don’t know why but we are thankful that, whatever the reason, that the Lord has graciously protected both of us from fear and anxiety.

My sadness remains over the inability to have other biological children and I imagine that waking up tomorrow without my baby-making-organs will be hard. But that reality has been hard for over a year now and I expect it will be hard for many years to come. So far, tomorrow hasn’t necessarily felt like it will be significantly harder than many moments I’ve had these last months. But we will see. During a pre-op standard procedure sonogram last week I had this irrational but very hopeful thought that the sonogram technician would find a baby in my belly. Not so much. But my heart sank as if that was actually possible and the reality that it wasn’t made me sad. With medically-induced menopause for the past 18 months you’d think my brain could overpower my desires! Instead it was another reminder that I don’t know what will be hard or when those feelings will surface and sometimes my feelings overpower my brain. Friends have been sweet to affirm my decision and my head knows its best but sometimes my heart doesn’t get the memo.

As it is (and finalized tomorrow), if the Lord is gonna give us another child its gonna come from someone else’s belly. The challenge with that is that Scott is perfectly happy with just the one that already unexpectedly came from my belly. As such, only one of us is burdened for more children and every time I bring it up it just causes Scott to delight and marvel all the more in Lincoln so the conversation rarely gets much further than his overwhelming gratitude for the one we have. It’s pretty sweet. And Im thankful too. And I don’t know how the story ends but the One who wrote it has a way of surprising us and showing off or settling our hearts into His will. I rest therein.

Surgery is at 11 tomorrow and I’d love your prayers for continued peace for us, for Lincoln to enjoy being spoiled by his Nana and Papa (my second mom and her sweet husband), for my doctor Kamilia (as if surgery wouldn’t be stressful enough I think there’s extra emotion for her because she also cares for me as a friend), the anesthesiologist (Shannon) and the very experienced nurse (Tina) that Kamilia specifically scheduled around because of her skill and experience with the robot that they will use. I should be done and waking up around 2. I’ll spend the night tomorrow night then, Lord willing, be home on Thursday. Scott or I will send a post surgery update tomorrow. We thank you in advance for your prayers, love, and thoughts.

It is well with my soul.

With pink, prayers and love,
Jen

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.

My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life
Thou wilt whisper Thy peace to my soul.

But, Lord, ’tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul!

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

You know you know Baylor a little too well when …

…You know which parking meters are out of order and therefore free. And even better when they’re in the shade.

Dear City of Dallas: If you will fix the meter on Worth Street just east of Washington, I will happily pay you for your shaded parking spot near the doctors offices I visit often.  In the meantime, after the thousands of dollars we’ve spent a Baylor, saving a dollar or two in change is a bit trivial but very satisfying.

Had a mammogram today and back on Thursday to review the film with my surgeon and also for sonogram and pre op activities prior to next week’s hysterectomy on the 28th.  Real thankful for your sweet messages, prayers, concern and offers for help after my last post.  Will keep you posted.  Hear the recovery can be rough and was told “not to pick up more than a gallon of milk for 6 weeks” … how exactly does that work with a toddler?  I’ll get back to you on that one.

Real thankful that my heart continues to be at rest with this decision.  I got a twinge of pain in my heart today when I saw a pregnant lady at the park with another boy about Lincoln’s age.  But, at the same time, as many friends are pregnant with their second children I’ve been able to rejoice with them without thoughts of myself.  That’s been a gracious gift for one who is tempted to selfishness and envy.

Thanks for your prayers and love,

Jen

Life Goes On…

As most of you know and many will remember, my dad died when I was 20 – just 2 weeks shy of my 21st bday and just a week shy of his 49th. One of my strongest memories from that hard season was a day shortly after he died and I pulled up at a stop light, looked at the person in car next to me and got angry at them.  Yes, I was angry at a perfect stranger. I was angry because they were acting as if nothing had happened and I wanted to roll down the window and scream ‘how can you go about your normal business and act like nothing happened?! Don’t you know my dad just died?!??’ Well, of course, they didn’t.  And, naturally, they were continuing their business as if nothing had happened.  Thankfully, I didn’t roll down my window but I think that’s only because my little brother, Josh, was in the car. But I remember so well the sobering reality that my world seemed to be crashing to a hal while others’ lives went on. And, since then, I often reflected about the reality of life going on while others around me may be hurting. My dad’s death taught me many lessons about how to love the hurting and grieving.  And that lesson was on my short list: life goes on. As well as, I also remind myself: keep grieving with folks well past the funeral because your life goes on but their grief lingers. [Sidenote: For those of you who were there during that season of my life, I have 2 thoughts: 1. Thanks for STILL being here! And 2. How crazy and almost creepy and hard-to-fathom is it that my husband is actually older than my dad was when he died? To his credit, Scott doesn't look his age! But where oh where does the time go and how are we aging so fast and is my husband really gonna be 50 next month? Anyways...]

So, what does this have to do with pink, prayers or love?! Well I asked the Lord the other night if there was anything to update our faithful friends who have cared and prayed for us. And the phrase ‘life goes on’ came to my mind and heart. I can’t with full conviction say it was from the Lord because my brain just bounces around like a pinball machine (with all the bells and whistles) at night when I can’t sleep.  Thank you, menopause, for all the ways you teach me how much I took a good nights sleep for granted. Anyways, whether truly a response to my asking the Lord or just an idea for a blog post, I’m not sure. But, for those who have asked for updates, that summarizes our reality today: life goes on.

I feel more and more like we are back in a routine as a family without the help with Lincoln or meals or chores. It’s nice to feel ‘normal’ and back to a simpler life – even if I occasionally miss clean laundry or hot meals appearing on our porch. I have even gotten back into other things I’ve missed – I had the privilege of teaching at a retreat for our South Dallas friends and even found myself daydreaming and praying about teaching another Bible study again. Between marriage and then Lincoln and then cancer, those thoughts and desires have been on the back burner for a long time but it seems like the Lord is again lighting those flames of service and opportunities. Again, its a reminder that life goes on.

At the same time, as our family comes out of the ‘valley of the shadow of death’ surrounded by sickness and suffering on a regular basis and our life goes on, it’s hard to watch other friends struggle. Since my diagnosis, we’ve been with friends as they’ve buried mothers that were diagnosed and died within months, watched friends lose babies both in their wombs and in their arms, seen other young friends diagnosed with breast cancer, saddened by the news of friends’ parents with aggressive spreading cancer diagnoses [word of the day: did you know that plural of diagnosis is diagnoses? Now you won't have to look it up like I did!], seen friends suffer through unemployment, grieved with friends who unexpectedly lost their mom to a brain aneurism, and hurt for a friend who was a victim of the Lake Highlands rapist.  So, while our life goes on, we are sad for friends who might pull up by us at a stop light and scream, “how can you act like nothing has happened?!?”

For me, the hardest reality of life going on are the bulging bellies around me.  With the news that we’d be hard pressed to have any more biological children, I knew that it would be hard to watch others, especially women who were pregnant when I was, prepare for a little brother or sister.  As Linc approaches 2 (June 1), I knew I’d see more bulging bellies and while I’m genuinely happy for them it also reminds me of our loss.  While they go to the doctor for checkups, I go to get shots to make sure a baby doesn’t happen.  Sure, sure, sure.  I know, I know, I know that Lincoln is an amazing unexpected perfectly-timed gift and we ARE so very thankful.  But I’m still sad.  I firmly believe that joy and sadness can co-exist.  And, yes, I know we could possibly adopt.  But even with that hope, I still have sadness.  Sadness for us but also for Lincoln.  When I see siblings playing together (or even fighting and learning valuable life lessons through relationships), I’m sad for our little guy who may not have the gift of siblings.  I pray toward that end and ask for the Lord to grow our family but also try to accept the reality that life goes on.  [By the way, Scott is quite happy with an only child.  I would like more.  And, while I'm expressing my desires for all of y'all to read and possibly pray, I am quite partial to darker skin - of any age.]  I’m at an interesting place – I readily identify with mothers over the joy of motherhood but also grieve with my single friends or women facing infertility as we live with unfulfilled desires.  Life goes on.  Thankfully, God goes with us.  Actually, He goes before us – just like He did in giving us Lincoln.  And He will make the rough places smooth.  Some days, this is a rough place.  But He is more than able to guide us on this unfamiliar path and smooth our path.  This was the verse the Lord put on my heart for my first post in February of last year.  He has been faithful to keep His promises in Isaiah 42:16:

I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth.
These are the things I will do; I will not forsake them.

And I love the first couple of verses of the next chapter (Isaiah 43:1-3):

Do not fear, for I have redeemed you; I have summoned you by name; you are mine.When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Savior.

These are sweet truths and great reminders.  Life goes on.  But He goes with us.  And with you.  I pray that reality is near and sweet to you today.

Thanks for your continued inquiries about our family.  God has indeed  smoothed the rough paths.  And, thanks for praying with us as we trust that He will continue to guide us on unfamiliar paths.

One Year. And Counting.

This is a pretty big weekend and I’m in a pretty happy place …

This weekend marks the one year anniversary of our hot pink year. We’ve transitioned to pale pink for 2013 but “it’s still pretty pink on up in here” as my friends in South Dallas might say. I still sometimes don’t recognize myself in the mirror (the short brownish pixie has replaced the buzz and the grey pixie that replaced bald) and still laugh when others don’t recognize me (sweet note, Lori Pinto, and I certainly knew that the girl you hadn’t seen in years that looked quite different was a shocker whispering your name down the aisle in Bible study!) I still see a calendar full of more doctor’s appointments which is shocking for the girl who had never stayed in a hospital until Lincoln was born or had any health issues bigger than a broken finger. And I still feel like this has been one of the sweetest seasons of my life.

On this day last year, I very innocently and naively went to the doctor about the marble in my right breast. He thought it was a cyst and we scheduled another appointment. I came home without much worry and, later that night, Lincoln crawled for the first time. And that was far more noteworthy on that February 1st night than anything about my doctor’s appointment. By the next Tuesday, we sat in a surgeon’s office and, based on it’s shape, size, and the fact that I was nursing, he also surmised it was a cyst but would aspirate (hopefully) to confirm. When he left the office, Scott and I laughed feeling like we’d made “much ado about nothing” with both of us going to the appointment and Scott said, “sometimes you feel so stupid for coming to the doctor for something insignificant that you almost wish you had cancer to make it worth the trip …” We laughed and reminisced about a time that he’d gone to the hand specialist thinking something major was wrong with his hand and was met with a lot of compassion but the simplest diagnosis ever. Scott was embarrassed to come home and tell me. And it was so nothing that I can’t even remember what it was! But, we made up for any wasted trips to the doctor by the end of the appointment when the doctor turned very serious and also asked me how long I’d had the lump in my armpit. I responded with, “oh, that? yeah, I think it’s been there awhile … think they’re related?” Cancer 101: if you have a palpable lump in your breast and a lump big enough to feel in your armpit, you have an aggressive and invasive cancer. We knew something got serious and were asked to meet him at his office, between surgeries, on Thursday. Looking back, everything about that should have been a red flag but we were naive and aren’t prone to panic (at least not about cancer – maybe about a bad hair cut or something stupid I said or being late to church or the house being a mess … but not cancer!). We waited forever in his office that Thursday and my mom and Cynthia took turns with our little 8-month-old who was overdue for his nap in the waiting room. And then, so kindly and graciously and lovingly and tenderly as one could ever hope to hear, Dr. Kuhn called us back and told us that he regretted to tell us that I had cancer in both my right breast and lymph nodes and that he surmised I would begin chemotherapy immediately to try to shrink the tumor and control any spread and then have surgery followed by radiation. He predicted it perfectly. I responded with a deep and profound question … “will I lose my hair?” That summed up the extent of my knowledge of cancer. He let us go to the waiting room to tell Cynthia (whose mom had breast cancer so she’d been panicked and worried much moreso than we were) and hold Lincoln and call my mom who had gone back to work for a meeting. Her first words were, “it can’t be … I just knew it wasn’t cancer … it can’t be …” My first words were out of ignorance and her first words were rooted in a deep hope for another outcome. And then we all cried. Because Scott and I weren’t particularly worried, not very many people even knew we’d been to the doctor so I sent a text to friends who knew and were waiting updates. As I reflect on that text, I am laughing because I remember typing “boob” and thinking “why does everybody have to be so clinical?! Breast schmest. I’m gonna keep using boob” And from that day forward, everything changed. I’ve even matured enough to say “breast” more often than I say “boob.”

As I was sitting down to draft this, I got texts from Gigi and Jenn (unbeknownst to them what I was doing) as they had also remembered the date and were reflecting upon the year anniversary. This time last year, Jenn had driven to be with Gigi at Hyer Elementary and they sat in her office (with Molly on speaker phone) to cry and pray as they processed the news. How about that for precious friends?! And they haven’t missed a beat since then. And many many other friends and family have joined them in their prayers, tears, love, and acts of service.

At the end of this year, I find myself in awe of God’s grace, in awe of the body of friends and family and Christ at work in our lives and marveling at the incredible gifts of love and service and the random acts of kindness that have entertained and amazed us for a year.

I also stand in awe of the power of prayer because, though it was a hard year, it was infinitely easier than I expected – I didn’t say that it was easy. But it was easier than expected. We endured chemotherapy, surgery, and radiation along with the chaos of a world turned upside down and motherhood much better than I could have expected – with the help of friends and the incredible power of prayer. Oh, and not to mention that we hadn’t even had our second wedding anniversary so we aren’t exactly ‘experts’ on this whole marriage thing and loving each other sacrificially and dying to self and getting over a combined 85 years of singleness! But people prayed and God answered. I can’t tell you how many days, especially in the summer when the heat picked up and we were on the backside of 22 weeks of chemotherapy that I would think “people must be praying because there’s no other explanation for the fact that, though I need a lot of help, I am not completely horizontal or miserable.” I was tired, weary, often overwhelmed, and sometimes sick or grumpy … but never miserable. God graciously sustained us. And y’all were faithful to pray toward that end.

Not only is my heart in a happy place but my body is headed to one too. As we completed radiation, I received a card in the mail with a sweet note of encouragement and a gift card to Wildcatter Ranch for a weekend away with Scott. I was speechless. The Quicks are definitely good friends but not our closest friends and this was so thoughtful and generous that I couldn’t even wrap my head around it. And the timing was such a sweet gift from the Lord. Other friends had very generously given us a trip to Puerto Rico (a fun place neither of us had been and were excited because we love ourselves some beach!) using their miles and their corporate apartment and we’d scheduled, way back in the early fall, to take the trip on our year anniversary weekend. So fun! However, a couple months ago, the trip fell through because of logistics totally out of their control. We then marveled at the Lord’s timing for someone else to give us the gift of a weekend away the exact same week the other trip fell through. The Quicks have a baby girl that was born just 7 days after Lincoln so not only did they give us a weekend away but they also asked if they could keep Lincoln to play with Campbell! So, today, Lincoln is shacking up with an adorable 20 month old and I’m shacking up at a ranch with my boo. I can’t wait. As I said in my opening, I’m in a happy place. And it’s about to be happier as soon as we get on the road.

Speaking of roads, it’s been a long one since February 1st of 2012. And we’ve needed lots of pit stops and roadside assistance along the way. We are so thankful for the family and friends who have made a really bump road quite tolerable – and, oftentimes, even enjoyable. That reminds me of one of the very first verses I included in an email or blog … and it’s as true today as it was then …

I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them.

He has led this blind and clueless girl down a path of cancer that I had not known. He has guided us down unfamiliar paths. He has turned our darkness into light and made the rough places smooth. He has done this. He has not forsaken us.

To God be the Glory. Great things He has done.

 

Learnin’ and Growin’

So, as I posted in my last entry, I have been drafting a “things I’ve learned about how to love others” in my head for months.  I even started a draft.  I didn’t realize until today that I started it in August! It’s a bit overdue.  I think the truth is that I keep learning and keep growing and it’s just hard to put it all down.  But, I am so thankful for it and hate not to share it because I’ve received more calls about how to love friends with cancer than I have anything else.  So, it’s my chance to go public and let you learn from what we’ve learned.  God “comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.”  We have received His comfort and your comfort.  And I pray this post helps you with wisdom in how to comfort others in the same way.  This will be long so I recommend reading in installments. Here we go with the entry I started in August [Part 1] :

First things first.  Y’all. Are. Amazing.  I share my heart and y’all share yours and love us, encourage us, and support us in unbelievable ways.  During a real sweet dinner with girlfriends last night, I had the idea that sometimes it’s weird being the ‘sick’ one in a group when, so very often, I feel like the special one in the group … very loved, encouraged, supported, and cheered for.  Who doesn’t want or need that?!  Truly, this amount of love and support, that I think may only be known to this extent in hard circumstances, is enviable.  If you haven’t experienced it, trust me, you should be jealous!  As I wrote before,  don’t hate me because I have cancer.  But, I’ll tell you that the incredible amount of love our family has experienced is something that words fail to describe.  So, rather than ramble on like normal, I’ll just stop there.  And tell you how blessed and thankful we are.  And, while there are many things we don’t like about our season, there are countless “gifts of cancer” that I never fathomed. Nor could fully explain.  But I thank you for them.

And, in the spirit of sharing how many ways y’all have loved and served us, Scott and I also regularly dialogue about what we’re learning about how to serve folks who are in our shoes.  Scott said the other day, “at the end of this, I wonder if you should write a blog about lessons learned … [pause] … nah, you’d probably offend or hurt too many people.”  The truth is, as well as we’ve been loved in shown what to do, there are some things we’ve learned about what not to do.  None of which have made us angry or cry or discouraged but more in the spirit of how some things just help more than others.  Hence the title, we are learnin’ and growin’.  This is a Scottism – and one of Cynthia and my favorites since we first met Scott.  As we all acknowledge what a mess we are and how much we need Jesus, Scott will just shake his head and say, “just learnin’ and growin'”  And, in that learnin’ and growin’, I realize we all need a lot of grace because we don’t know how to be the perfect cancer-love-recipents and nor do most folks know how to be the perfect cancer-love-givers.  Here are a couple of our observations:

1.  A lot of people just aren’t comfortable talking about pain or suffering.  They avoid me or the topic.  And, the truth is, sometimes it’s far more awkward not to speak about the obvious (the bald head is rather telling) than to talk around it.  Our favorite example is the innkeeper I told y’all about in CO.  Admittedly, David has a hard life and may have intended to be respectful by not asking but, after over 2 days and 2 meals together, he never said anything.  I’m not sure if we’d have noticed or not but, on our last day, as Scott was paying our bill and I was loading Linc, another man kindly stopped Scott and very graciously said, “I saw your wife.  Is she in treatment?” and, after Scott answering, he very kindly offered his prayers and thoughts.  A short convo.  Not super deep.  But kind.  I think that quick encounter, which blessed Scott, made him realize that our new friend, David, had never asked – about the cancer or even anything about us.  So, as he walked out the door and got into the car, he started mumbling as if engaged in a conversation apart from me and said, “yeah, I’m a remodeler and love what I do.  And, yes, she’s in treatment for breast cancer but doing quite well … thanks for asking …” I died laughing.  He was having an imaginary conversation highlighting the conversation we hadn’t had over the last 2 days.  Similarly, I was on a walk with Allison and someone we know from church (but not well) pulled up beside us in his car.  We exchanged friendly hellos and then he ran his hand above his head in a back and forth motion (referring to my bald head) and said, “what’s going on?” with an intense interest and concern.  I couldn’t even answer the question without first thanking him for asking, caring, and making his desire to know clear.  This is a sharp contrast to a very hard question that people like us hear often but unsure how to answer: how are you?  We don’t know if people are asking about cancer or life or what.  And, in my head, I am trying to guess what the question behind the question is.  So, with my friend Ryan, I just loved loved loved (and couldn’t wait to get home and tell Scott) that he shot straight, didn’t use an uber-serious-I’m-afraid-you-may-start-crying-if-I-ask voice and just cut to the chase.  Endearingly cute.  Other favorites: statements instead of questions.  Today, Elizabeth just yelled, “I love you.”  Others, “Praying for you.”  And it’s just a great way to exchange a lot of love (which we know is the heart and intention of the “how are you?”) without a mind-twister question for us on any given day.

2.  I’ve learned something about myself through this because I’ve done it myself countless times. I’m a hijacker. Using Scott’s words from the first week of the diagnosis, he said, “somehow, some people can make your cancer about them.”  He has a way with words. We’ve now termed that “the hijack.”  And I do it too!  I’ve realized that when someone tells me something that I know something about by experience (mine or family or friend) then sometimes I hijack their story to tell them my story.  Sure, oftentimes, I’m trying to connect and build a bridge.  Or help them with a doctor or advice or whatever.  But, the truth is, I’m making it more about me than them.  And, as one of my best friends growing up, Todd, taught me: “unsolicited advice is rarely welcome.”  But, in love, a lot of folks offer advice that we weren’t asking for or just proceeded to tell us all about their brother, cousin, aunt, whomever with cancer.  I do it too.  But am trying to quit:) Classic example: our oncologist is encourages us to be active and exercise and references that she’s run marathons.  She didn’t ask if I’d run a marathon.  But, everything in me wanted to give her a marathon count, my PR, and even cities where I’d run them.  And, certainly, even if I’d been able to keep my mouth shut about myself, I really wanted to be able to casually mention that Scott has run the Boston marathon (translation for non-marathoners: he’s fast and good and not just your average marathon runner like me because average runners like me can’t run Boston but super fast folks like him can qualify to do so).  Or, if someone mentions foster care, I sure want to tell them about Gigi’s 4 boys I love so much I can’t stand it.  And, again, of course that’s normal in conversation and building bridges but maybe not if they’re in the middle of their story and not asking me my story and maybe I should just listen and ask questions about them (with the added benefit that my experience in any of this could give me the opportunity to ask more meaningful questions) instead of, as Scott said, “making it about me.”  But, the truth is, as common as cancer is, and especially breast cancer, everybody has a story.  And, it’s not that we don’t care about others’ story but, right now, we’re overwhelmed with our story. And, going forward, if someone tells me about their cancer, I hope I can hug and listen and not hijack or offer unsolicited advice. I’m guilty of all of the above.

In the attached link that was shared by the Holmes family (their young son had leukemia),  I found that someone else put into words what we’ve felt or experienced but not had time to stop, consider, or put your finger (or words) on: “My Semicolon Life: What to say to a cancer patient” at http://usat.ly/OOJo6T.  It’s that good. Not everything he says resonates with me but love what my friend Kristi said yesterday – she helped me articulate that it is  much easier for someone to tell me what they’re going to do than ask me and make me think:) And love what Cynthia and Scott have said too … “grace for everyone!” Grace from all parties because noone is gonna know how to give or receive perfectly. I’ve screwed up on both ends. During this season I’ve apologized to friends that I didn’t love/serve well when they were in a hard season and I’ve also apologized for not receiving well.  So, I write as one who needed to learn everything I’m writing and not to heap any shame or regret for what you have or haven’t done for us or anyone else.  We are all learnin’ and growin’ ….

+~+~+~+

[Part 2] That concludes the August draft and I’m back to January …

In addition to what I’ve learned about not being scared of the awkward or not hijacking people’s stories or the need to put all of this in the context of grace and growing, I’ve also learned some specific “tips and tools” about how to be cared for.  I’ve learned from the best – y’all.  And I mean that.  I can’t imagine having been surrounded by a more supportive community of friends (past and present) and family.  So, in addition to those observations, here are a few more things y’all have taught me…

3.  There’s no such thing as random.  Before, I might have thought if I knew of someone vaguely or from the past and they were sick or hurting I might have thought it was “random” if I reached out in any way.  Not anymore.  My old FBA saints, my old coworkers, old Bible study friends, neighbors I didn’t know before, and anybody and everybody that reached out with encouragement or a kindness blessed us.  And I pray that I will continue to offer prayers, encouragement and kindness as y’all have for us.

4.  I’ll read their blog.  I get it now.  I totally get what the Holmes’ told us. I couldn’t believe it when Rebecca said she had to even tell her mom to “read the blog” some days when she wanted an update on their son but, now, I get it.  As she said it so perfectly, you are desperate for the prayers and truly want folks to know what’s going on … but you can’t possibly respond to everyone.  And, I’ll add to that, that not only would that be time-consuming but it would be terribly boring to talk about cancer all the time!  So, if they have a blog and I want to know how they’re doing, I’ll read it.  And, I’ll actually post a response.  It was a real blessing to know people read and cared.  Yeah yeah yeah, I know, it’s awkward to post publicly.  I never did it before either.  But, the point of this post isn’t to offend or change you but just to tell you what I’ve learned.  And I’ve learned that it’s a blessing – and in the same way it’s a “one stop shop” for information going out it was also nice to have one place for incoming communication too.  I know who you non-bloggers are because every time I posted you emailed or texted:)  And, I totally get that.  And I’m not saying I didn’t love your emails or texts … and I’m not judgin’, just sayin’ … there’s a reason the central place for information is helpful:)

5.  I’ll go easy on the questions.  Related to 2., this was totally something I never thought of but for those of us who love our friends and have a hard time not expressing our thanks to friends who email or text or answer questions, one way to bless others is just to get questions answered on their blog or CaringBridge site and, in reaching out, be careful not to overwhelm with questions.  Maybe this is another beauty of the blog?  The blog comments don’t warrant a response so when I read those they it didn’t tempt me to respond like texts and emails do:)  This reminds me that before I had a baby I didn’t understand the beauty of the meal drop – and I still don’t totally love it because I like to see my friends – but I now understand that the giver is trying to give without any expectation in return (not even a visit) so that the recipient can rest and just enjoy it.  I can’t tell you how many times I’ve thought that I wanted to start my own DNR acronym for texting or emails (like LOL or TTYL) … I wanted to institute DNR.  Any guesses?!  Unfortunately, the medical community beat me to it with “Do Not Resuscitate” (and maybe that wouldn’t be so funny with a cancer diagnosis) but I want a “Do Not Respond” designation when I am trying to send a hug or encouragement via text or email and want them to wholly receive without replying.  I recognize that part of this is my problem that I want to respond when I receive your sweetness. But I share this because I presume there are others out there that want to “hug us back” (via phone or text or email) and I want to set them free.  So, if you can’t stand a blog post and must respond with a text or email instead, then just remember that they are in information/communication overload so simple statements of love and encouragement are easier than questions.

6.  I’ll do what I am gifted or able to doI have marveled at the body of Christ at work.  And the way God made each of us with different gifts, skills, talents, and ways to love and serve.  Wow.  We are all gifted and wired differently.  In Ephesians and Romans, Paul exhorts people to use their gifts to the glory of God and to bless others: “to some He gave leadership, teaching, exhortation, prophesy, evangelism, preaching … And though that’s totally my paraphrase of those verses I can’t tell you how often I’ve reflected on them but mine goes something like this, “to some He gave cooking, babysitting, laundry, grocery store trips, organizing or writing notes of encouragement, errands, administration of meals or babysitting, Starbucks, JD cookies deliveries, little sessies on the front porch … to some He gave generosity (cash to cover deductible, movie tickets, grocery gift certificates, dining out gift cards, flowers, airline miles, and other generous gifts for all 3 of us) … to some He gave creative talents to make tshirts or necklaces or fun gifts for Lincoln … to some He gave a lawn company to mow our yard every week … to some He gave the ministry of encouragement via text or email or notes … to some He gave a zillion other creative ideas in how to love and serve us …” And y’all did all to the glory of God.  And you blessed us.  I am inspired by your creativity and encouraged to love others as you’ve loved us.  Thank you.

7. I’ll be specific and initiate.  This one was super interesting and eye opening.  Before the last year, I would have thought a text of “what can I do to help?” was been beyond my selfish comprehension.  And it is!  And I totally believed every one of you that said it.  But, at the same time, it was too big of a question for me on most days.  I’ve learned that “I’m at the grocery store, what do you need?” or “I have Tuesday free, can I keep Lincoln for a couple of hours?” or “I am running errands, anything I can pick up for you?” or I have extra dinner and am dropping it off …” or “can I do your laundry on Wednesday?” or “can I bring you lunch tomorrow?” or just an unannounced sessy of food or encouragement on the doorstep was so incredibly appreciated.  Going back to previous points about overload, the big questions of “how can I help you?” (similar to “how are you doing?”) often left me staring at my text or email because I knew I needed help but prioritizing and trying to fathom the sender’s availability or interest was enough to power me down even though I was thrilled for the offer and needed help.  But the more specific (day, time, offer) the question the better – that way my weary mind and body could just say “yes” or “no” or “milk and toilet paper.”  This also applies to the ever-well-meaning “let me know how I can help…” comment.  The truth is even in the most desperate place of needing help, it’s hard to remember much less ask.  Call it pride or laziness. I’ve got both.  But to this whole bullet, that’s putting the burden on the one in need to remember that we offered and availing themselves to big fat rejection if they trust us, take us up on it, and we say no.  So, in the future, I’ll endeavor to make it easy on them.  Instead of expecting them to remember and ask, I’ll make a specific offer that they can easily say yes or no.

8.  I’ll send love and prayers.  As noted above, comments on the blog or “electronic hugs” via text or email were super sweet.  As were handwritten notes.  And prayers.  I learned that love can definitely be sent.  Our mailbox often was a source of love and encouragement and it was fun to see that the handwritten note was alive and well.  I also learned that few words can be powerful.  My friend Alyson wrote me regularly and had post-it notes of encouragement that said “stick it to cancer” (get it?!) and another friend sent a note one day that all it said was “Jesus Loves You.”  Amen.  And, thanks, Bev.  Or, just anyone who told us they were praying for us – what a gift!  As evident by this ridiculously long post, I like to write.  And if you’ve ever received a handwritten note or email or text from me, you know that brevity isn’t my strength – but I’ve learned that more isn’t always better.  A “little” love can go a long way.

And, in closing, there are 2 other things I’ve learned …

9.  I’ve learned that receiving is hard.  It’s not always easy to ask – because we may get rejected.  And its’ not easy to be in need – because we’re not used to it.  We live in a culture that is self-sufficient and independent so Scott and I got a much-needed crash course in “getting over ourselves” because we needed help.  So, you don’t have much of a choice but to receive … with the full knowledge that you will never be able to repay all the kindness shown. It’s both maddening and glorious all at the same time.

10.  And, lastly and sweetly, I’ve been reminded of the incredible power of gifts and grace.  As noted, we will never be able to repay all the kindness shown us.  Y’all have lavished us with gifts and with your grace and generosity and kindness.  As I titled an entry early on, the words are still true today: we’ve received “blessings one upon another.”  You’ve modeled what GRACE is all about.  Gifts.  Gifts that will never be repaid.  As with the grace Jesus has shown us and his gift of His death on the cross, we simply respond with THANK YOU.  We are changed by His grace.  And also by yours.  Thanks for the crash course in giving and generosity.  You were wonderful tutors.

Pale Pink

Well, if 2012 was the “year of pink” then 2013 is looking like it will be pale pink instead of hot pink.  I feel like I’m in the ‘cool down’ period of a run or workout where the reality of the last year is close at hand – and yet I’m very glad it’s over.  I feel caught between this weird new world of “normal” (whatever that is) but yet my calendar is a reminder of our “tapering” with its ongoing doctor’s appointments but nowhere near as intense or often.  My hair (getting longer and still quite curly and grey – though both texture and color is expected to change, I don’t see either happening yet) is a pretty constant reminder of my new world – with my new ‘do.’  And I laughed that I busted my brother at Christmas Eve service who looked right past me and didn’t recognize me.  He owned it:)  And it made me laugh.  And he’s not the only one.  I told friends and Scott yesterday that it’s nice to have a distinctive voice because people that haven’t seen me much (or at all) over the last year are often reminded they know me by my voice – because the girl with short greyish hair doesn’t look much like they girl they knew with longish blonde hair.  I have decided that it’s just easier to greet people with, “hi, Suzy, it’s Jen Clouse …” than to watch them struggle and stumble.  At least this way I give them the dignity of not having their face display the shock and confusion on the inside.  It’s honestly amusing.  Not annoying.  At least not yet:)

One reason that my appointments are fewer and farther between is the sad news (and frustrating) that I didn’t qualify for the study at UT Southwestern.  Especially since it seems like as much of a technicality as anything – though what do I know?! I only feel like a breast cancer expert – I’m not one.  But, the reason I qualified was because of the Her2 (one of a couple of cancer markers that determine treatment) level in my tumor.  This is not the primary marker that drove my tumor (estrogen and progesterone are) but there was a “low expression” in the tissue sample from surgery.  And, the new vaccine that is in trial was looking for patients with a low-moderate expression of Her2.  That’s me.  However, that determination must be made by my core biopsy sample (prior to treatment) and there are 2 problems with that 1. my Her2 was present in my surgically removed tissue but not in the tiny biopsy sample and 2. after they tested it once, they were out of tissue so it couldn’t even be re-tested.  The frustrating part is that it seems to me that by the essence of the test (to prevent recurrence) I qualify and because I (nor the research coordinator I talked to who is very well versed in breast cancer) don’t think that my Her2 expression just happened to appear over 6 months between the first sample (February) and the last (August).  My suspicion (as is the nurse’s) is that it was always there but the core biopsy tissue is so tiny that it didn’t register and, unfortunately, my first biopsy pathology report didn’t even provide a number for that marker to give us a clue.  I’m totally ok with not being in the trial and trusting the Lord with all of that (more than anything, I was excited to help others and I got another full round of scans that aren’t typical for ongoing treatment but would have been nice for peace of mind) but it’s probably just frustrating that it seems like it’s more of a protocol technicality (since protocol states which sample to use) than the reality (that I have a moderate expression of Her2).  And, while the research assistant was addressing this with the drug company, it will unlikely be resolved in the short window that is required for patients like me to enter the study (in between months 1 and 2 after radiation).  So, for you non-medical people that may have been way too much detail but since I shared with you the fun news about the opportunity for the trial and then the answered prayer request for a trial opportunity in Dallas, I wanted to share ‘the rest of the story’ as well.  The upside of all of this is that my world got simpler.

And, that gives me more time with Lincoln which has been really fun – especially over the holidays.  The intensity of treatment ended with the end of radiation in mid-November but, of course, the rest of life picked up its hurried pace with Thanksgiving and Christmas so I feel like it’s just now that I’m starting to enjoy our new normal – our pale pink world instead of our hot pink world:)  And, in my pale pink world, I feel rather discombobulated sometimes.  My age and my lifestage were already out of synch – most people with 19 month olds aren’t almost 41.  And, most 41 year olds, aren’t going to “music together” classes like we did this morning.  Most of them are playing tennis or doing whatever it is that mom with kids in school do – but they’re not usually changing diapers and sitting on the floor singing baby songs.  And, then again, thanks to my chemo and shot-induced menopause, I feel like I relate to menopausal women in their 50s with hot flashes, sleep issues, and hormone issues.  So, somewhere between most first-time moms who are in their late 20s and most 50 year old menopausal women with kids in college or older, there’s me.  Me and my 19 month old in my pale pink world.

Speaking of hot pink, that reminds me of my favorite Christmas gift.  Scott and I do a want, a need, and a surprise for each other and for Lincoln (though that means absolutely nothing to him at this point).  As you might imagine, I’m planning mine for weeks in advance and Scott historically gets all 3 within a couple of days of Christmas.  But, though it makes me a bit envious with his ease and nervous about his timing, I admit it has served him well and I’ve always been real pleased with his choices.  This year, as I went to open my “surprise” gift, the small box was a designer I like so I was prepared for my surprised but also intrigued.  Especially since I was sure when he’d come home with a small Nordstroms bag that he had (wisely) purchased me another pair of Kendra Scott earrings.  But, instead, I opened to find a gold necklace with a very hot pink square jewel set like a traditional “drop” would be.  My unspoken thought, “hmmm.”  His first words, “I knew it – I should’ve gotten you the Kendra Scott earrings.”  But, then he kind of sheepishly said, “I just thought this was more original.  And, would commemorate the ending of the year of pink.”  And, within about 30 seconds, it went from my most random gift to my favorite one!

As I reflect on 2012 I sometimes find myself still in shock – did I really have breast cancer?  It just seems a bit like a blur.  And, then, as I sang “Away in a Manger” with my friends in South Dallas one day, I find myself crying.  As I reflected on the sweet baby Jesus and then my own little baby, I found myself sad about the expected loss of opportunity for more children.  And, that still kind of boggles my mind because, as we’ve said over and over, we are so thankful for Linc and God’s timing prior to my diagnosis. And, then, as I think of 2012, I find myself marveling at the love and care and kindness we received – from our closest family to friends I haven’t seen in years.  Even this Christmas, it happened again.  It was late on the 26th and there was an unexpected knock at the door – I answered in pajamas to find a classmate, Jeff, (everybody knows everybody in a class of 56 but we didn’t know each other as well as we knew others) on our doorstep with a full basket of goodies and gifts that I just finally finished unpacking and putting away yesterday.  We’ve expereinced generosity and kindness from so many friends – from elementary school and childhood friends to high school and college friends/roommates to my Arthur Andersen coworkers and my Protiviti friends and all my old HighLight girls and friends and then there are our Watermark friends and my running buddies and even new gym friends and new neighbors.  And, of course, my family! It’s been the year of pink and the year of much prayer and love.  The blog was named well before we knew how blessed we’d be by pink prayers and pink love.

Lastly, as I’ve said, cancer has taken much from us but given us infinitely more.  One of the great things it has given me is a new and much improved perspective on how to love and serve folks in a hard season.  Wow.  Y’all have taught me tons.  One of the things Scott said the first week of my diagnosis was “we are gonna have to learn how to receive folks’ love and generosity [we expected it would be hard to constantly receive and be a 'taker' instead of a 'giver'!] and I guess that will teach us how to love better too.”  He was oh-so-right!  I’ve started an entry about all we’ve learned about how to love and serve others in hard seasons which I hope to share sooner rather than later.  [That's for you, Kim Anderson!] It’s been in draft form for a couple months but I think it’s still daunting to try to put into words all we’ve learned and experienced in the last (almost) year.  But, I’m hopeful, that my experience will bless anyone who follows in my footsteps with a cancer diagnosis but also anyone else who can learn from my friends how to love and serve folks in meaningful and intentional ways that will bless their socks off.  Y’all have been great tutors.

With pale pink love,

Jen

 

Better. Older. Survivor?

Hi friends. I’m up late with another good dose of insomnia that is either because of all the changes in my body, the nap I got today, or the sweet tea I drank after dinner with the girls at Jeanie’s. But, in any event, I’ve had it on my mind to post an update so why not get started on that at 12:30am?!

I’ve been asked the same 3 questions a lot lately. So, I thought I’d answer those for all of you because I appreciate your concern and, truthfully, though I have not a single doubt that they’re asked in love, I can just get tired of answering the same questions. Sometimes it just gets real boring to be talking about cancer. Again. Or, even typing about it – hence the long delay in updates. But, you’re sweet to care and the blessing of the blog is that I can continue to have the blessing of your concern and prayers without the dry mouth of saying the same things over and over again. So, here goes …

  1. How are you feeling?
  2. What’s next in your treatment?
  3. What’s your prognosis?
  1. How am I feeling? Most days, apart from really short hair, numbness in my right armpit from the lymph node removal (that makes it really hard to tell if spray deodorant was sprayed in the right place) and questions like “how are you feeling?”, cancer would be way down on the list of things on my mind. My burns have healed very well and my big toenails are even about halfway grown back in. That’s all good news. However, with the medically-induced-menopause, I could do without the sleep issues, hot flashes, extra few pounds, and bladder issues. I may or may not have wet the bed this week. Yes, you read that correctly. And, considering Scott didn’t think I should tell him I’m sure y’all are wondering why I’m telling you – or anybody and everybody that reads this. But when it’s 12:42am and you can’t sleep and decide to get up to update the blog, you never know what little secrets may escape from my fingers. Needless to say, the medicine for sleep worked a little too well that night. Thankfully, I woke up right away – in shock. Since then, I’ve backed off to only one of those little pills that put me into a semi-comatose state. That was a low. Oh, yeah, and I had a colonoscopy a couple of weeks ago too. Doesn’t it sound more like I’m 6o than 40?! I feel like my body has aged a couple decades in the last 10 months. Cancer continues to surprise me with side effects. Who knew cancer could cause bed-wetting? So, apparently, not only do I need medicine for my hot flashes and sleep but I also need Depends?! Nice. And, yes, it’s ok to laugh. I definitely do. Somedays, it’s laugh or cry. I prefer the former.
  2. What’s next? I’ve already started the monthly shots to cut off my ovaries and those will continue for 5 years (unless we decide to have them surgically removed). I may or may not resume the oral chemo depending on the criteria of the clinical trial at UT Southwestern (more on that in previous entries). So far, I qualify but there are additional tests being run on my original biopsied tissue. And, depending on whether or not I resume the oral chemotherapy in upcoming weeks (for up to 4-6 more months), we will determine when I start hormone therapy. For my type of cancer, this is a big part of my treatment plan. Though, unlike the much harder things behind us, it is the easiest to administer – no needles, knives or burns, just pills.
  3. What’s my prognosis? Interestingly, lots of friends have asked me about my prognosis and/or whether or not I’m “in remission” but I’d never heard anyone on our medical team use either word. So, at my appointment last week, I asked Dr. Osborne how to answer y’all’s question. She enthusiastically responded with “tell them you’re a Survivor!” And her excitement for me was real cute but it warrants me addressing this topic that I’ve heretofore not exactly known how to explain or unpack. I’ll give it a go. Bear with me. And if this doesn’t make any sense just ignore my ramblings…

From day 1 of this journey I’ve become keenly aware of everything pink and was quickly introduced to the language of “survivor.” I have been introduced to others who are “survivors” and I was once given a button that said “4 month survivor.” Here’s my issue with that – and, it’s just that, my issue – but I just don’t really understand the title. It just seems far too heroic for what I, personally, have done to be ‘crowned’ with the title of “survivor.” What else would any of you have done? I went to doctors appointments, I trusted smarter people than me, I prayed, I sought counsel, and I passively participated in the treatment plan. I trusted my life to a sovereign God and went about my business – both at the hospital and in life. The real active participants in this “battle” against cancer are the doctors, researchers, and medical community. And, the true sustainer of my life is God. So, what am I missing? I just don’t feel like a hero or like I need a button or banner or tshirt or applause because I got cancer then trusted doctors and trusted the Lord and “survived.” If God wore tshirts, I think He could wear one that says “I’m a Sustainer.” Likewise, I feel like a bunch of you who have supported us with meals, laundry service, notes, lawn service, thoughtful gifts, financial help, babysitting, etc. could also get an “I’m a Sustainer” tshirt for your efforts to strengthen, sustain us and uphold us by service and prayer. Maybe the best analogy I can come up with relates to my faith. I’m a Christian. But though I’m incredibly thankful for that fact it would be foolish to be proud because it has nothing to do with anything I have done. God revealed Himself to me through His creation and through His Word and through a mother who was committed to teaching me, praying for me, and attending a Bible teaching church. But I had nothing to do with selecting my mother or being born into a country with religious freedom or even where we went to church. And, God sent his son to be born (Merry Christmas to all!) and to live a sinless life and to die for me. But, I really had nothing to do with that. And then I accepted that gift of salvation by faith. I didn’t earn it or pay for it or deserve it. So, again, nothing for me to be proud of. Thankful indeed – but not proud. So, it is with me on the backside of this cancer journey and labeled by some as a “survivor.” I’m thankful. Thankful indeed that I’ve “survived.” But not proud as if I’ve personally accomplished something – because in the same way I had little to do with my salvation I had little to do with the fact that “I’m a survivor.”

I think the other issue, at least for me, is that it seems like a label – and, whether good or bad, I really don’t want to be identified or defined by anything I’ve done, said, accomplished, failed, or even “survived.” In many areas of life, I’ve been tempted to be defined by achievements or accomplishments but that hasn’t served me well. Nor has it served me well to be defined by stupid things I’ve done or said or even things I’ve failed at. So, it just doesn’t seem fitting to learn those lessons (about labels and my identity) the hard way and go find something else to label myself with. Thankfully, cancer doesn’t define me. Without a doubt, it has influenced me and changed me and taught me, but it doesn’t define me. So, needless to say, I’m just not sure I have embraced the “survivor” language. Besides, isn’t it rather obvious if I’m talking to someone and mention that I’ve had breast cancer that I “survived” without me explicitly telling them that I’m a “breast cancer survivor”? Hmm…

I’ve had those ramblings of thoughts in my head for a few months but hadn’t yet taken the time to put them into words. And, now that I have, I’m not even sure if these words will make sense. But, thanks for reading and trying to understand. I have a few more things that have been bouncing around in my head over the last few months that I’ll likely share in upcoming posts as well – what I’ve learned about how to love and serve others (from y’all!) and what I’ve learned about being a cancer patient that I’d happily share with anyone headed down this same path.

And, last but not least, I thought I’d include a recent picture of our family – including more hair for me and less for Lincadinc. Lincoln got his haircut last week and, overnight, he seemed to go from a baby to a boy. I have mixed emotions about that. But what I don’t have mixed emotions about how stinkin’ great it is that God gave us a little boy exactly 8 months before we’d begin this wild ride. And how thankful we are for folks to journey with us – from beginning to the “better” end.

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Day 33! Yippee!

No more early mornings. No more big bad burns. No more radiation!

My heart is full. Lots of sweet support from friends this morning, encouragement from doctor and his staff, and even a tearful prayer and celebration of Gods faithfulness with another new patient in the radiation waiting room. And now I head home to a husband who has been a great baby-daddy for dirty diapers and breakfast for 33 mornings and the little guy who makes every day sweeter.

Bye bye Baylor! You’ve been good to me but I will not miss our daily time together.

Thanks for the prayers and encouragement and support during the last intense portion of my treatment. We certainly aren’t done but we have so much behind us. And God has shown that He is bigger than cancer. The big C is Christ – not cancer. He’s been good. So have y’all. With tears I sit in the parking garage that has become all too familiar and proclaim that HE HAS SUSTAINED ME! And Y’ALL HAVE BLESSED ME!

With love and THANKSGIVING!