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,