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,