Kendrie -- 181 Days OT
Blaine -- Two and a half weeks out from radiation; finally not looking like a burn victim, but still not growing any hair on that side of his head or face. He said the good news is that it’s cut way down on his shaving time in the mornings.
First of all, thanks to all of you who wrote in the guestbook (have I mentioned lately how much I appreciate you guys for not only visiting our site, but leaving us messages? I’ll admit it, I’m an attention-junkie, and for a post to elicit that many responses ….. I LOVE that!) telling me that the “drowned rat” look was actually working for me, because due to whatever storm front moved through here, I did it again last night. Only the second night it was even **more** special because in addition to the rain, we had gale-force winds blowing … causing more than one parent’s (but thankfully not mine) umbrella to flip inside out in the stands. I’m telling you, it’s a miracle someone wasn’t blinded. (Yes, I made sure I had an umbrella in the van before leaving home this time.)
But, since it was the final game of the season, I’m not going to complain about the weather, although I do have to admit that while the first time was funny and exhilarating, the second time it was just wet. And after driving myself, Brayden, and Kellen home, soaking, dripping wet (the kids tried to dry off before sitting down, but all I could offer them were some Sonic napkins in the glove-box and a maxi-pad that I found in my purse) and then parking the van in the garage all night, where it was at least 90 degrees with 3000 percent humidity, the entire van reeks of mold and mildew. It’s like driving around in a soured milk carton. Ah, detailing it last month was certainly money well spent.
Anyway, I’m way off on a tangent now. Back to tonight’s topic: me, being insane.
Check out the number above, regarding Kendrie’s time off-treatment. One hundred eighty one days. That’s basically, six months. Six MONTHS, people, (technically, six months tomorrow) since we “formally” ended her chemo journey. Six months of eating ice cream before bed; (maybe that’s the *real* reason I still look pregnant?) six months of not planning our vacations around clinic visits; six months of living a relatively normal life. Six months of knowing we can give her Tylenol if she runs a fever without having to call her oncologist; six months of letting her catch frogs and tadpoles; six months of thankfulness for her continued good health.
And believe me, we KNOW that those are all good things, and we are grateful for each and every one. Especially the last one.
So why is it, when I took her to her follow-up visit at the clinic in Atlanta last Friday, I found myself feeling wistful? Dare I say, feeling nostalgic about the “good ole’ days”?
(It’s because I am insane.)
Please don’t get me wrong, I have no wish for her to EVER be sick again, or to return to the times of illness, stress, chemo side effects, worry and fear. NO, all too happy to be done with that part of it, thank you very much.
But the COMFORT of it all, I didn’t realize I had missed it, until we visited it again.
(Because I am insane.)
The comfort of walking into the Aflac Cancer Center at Scottish Rite and knowing we “belonged”. All those other bald little kids watching Toy Story in the waiting room while they waited to be called back for their appointments? Been there, and after awhile, felt comfortable doing that. Being greeted by name by Glitter Princess Kati at the check in desk, and running into two families that we had met at Camp Sunshine; good grief, do I actually miss the SOCIAL aspects of Kendrie’s cancer-life? Well, yes, I do.
I miss the friends we made while we were on treatment, and that we were able to see and visit when our paths crossed at the clinic. Catie, Keegan, Brandon, Madie, Jake, Brady, Mary Grace, Chandler, Gwen, CampJack, Jacob M, Joshua, and others; so many wonderful Atlanta families, and I miss them all.
Flashes of Hope had set up a portrait session in the clinic the day we were there and offered to take photos of Kendrie and me. I was excited for the chance (you should visit their website and see the quality work they do!) but a little flustered that I didn’t know about it ahead of time. I definitely would have dressed Kendrie in something nicer than her “Baseball is Life” t-shirt and cargo shorts. And maybe, if I’d gotten really ambitious, brushed her hair before leaving the house?? Dare I dream so large? They had a make up and hair artist there to primp everyone before each session. Perhaps not aware that Kendrie’s photo is in the dictionary under the word “tomboy” she asked if Kendrie would like a little lip gloss, or maybe a clip or bow in her hair? Kendrie just looked at her, I kid you not, with a total “What is this madness of which you speak?” horrified expression on her face. It was actually very, very funny.
Anyway, back to the fact I wasn’t aware they would be there ---- then I thought, how would I have known? We haven’t been to the clinic since April …. Do I expect them to call me every time they have something special like that planned?
(Yes, I do. Because I am insane. And high-maintenance.)
When we pulled into the parking garage at the hospital that morning, I noticed a new parking-pass type system set up, a sort of credit card for people who park there often. I felt a little indignant, like, when did they install this? How come no-one told me? How dare they make changes while I am away???
I’m like the pathetic girl who graduates from high school, only to return for a visit at a later time and feel surprised that life has gone on in my absence.
(That or I’m just insane.)
And it’s only going to get worse … Kendrie’s doctor has extended her follow-up visits from every two months to every three months. So we won’t even go back until September. She’ll continue to get monthly blood counts at our local lab, but still, after going to the Atlanta clinic two or three times a week at the beginning, and never less than monthly, no matter when, it often felt like our home away from home --- three months between visits will seem like a lifetime.
(To an insane person.)
And logically, in my head, I know that’s a good thing. It’s a GREAT thing! She’ll miss less days of school, and I won’t have to make the drive to Atlanta as often. Every day moves us farther and farther away from that dark period, and closer and closer to a time when Kendrie won’t have to go back at all. At this visit, her oncologist told us we could discontinue not only the two allergy pills she’s been taking every night for the last eighteen months, but also the nasty-tasting Bactrim antibiotic she’s been on this whole time. Did you hear that? NO MORE MEDS!!! AT ALL!!! We even let her take off the medic-alert bracelet she’s worn for over two years. (But naturally I saved it because again, you know me with the nostalgia!) Those are all great milestones!!! So why did it feel so bittersweet to pack away that bracelet?
Most of it, I’m more than happy, nay, THRILLED for her to be able to let go; steroids, port accesses, shots, chemo, steroids, nausea, fatigue, hair loss, steroids, worry over counts, lifestyle restrictions, steroids, did I mention steroids? And for the most part, ever since the bulk of her treatment ended in December, we’ve gone on and not looked back. I’ve never missed the “safety net” of chemo like I hear about other parents doing when their child ends treatment. I’ve never panicked that she’s going to relapse because we’re not pumping her full of toxins to keep the cancer at bay. Until Friday at the clinic, I had never really looked back.
Well, I’ve been staring at this screen for twenty minutes, trying to figure out some way to wrap up this journal entry and make it into something comprehensible. I appear to be failing miserably. I’m not even sure what it was I was trying to say here ….. and whatever it was, I’m saying it poorly.
(Probably because I’m insane.)
But I can't help but wonder, if you polled other cancer parents whose kids are off treatment to see how they feel, if perhaps I’d also be perfectly normal. In an insane world, which pediatric cancer certainly is. Maybe that’s why a small part of me, misses a small part of it.
PS. Wish me luck tomorrow. The kids and I are flying to Oklahoma City to visit the grandparents, aunt, uncle and cousins for a vacation. Me, flying with all three kids by myself …. Getting up at 5am in order to catch our flight, the carry-on bags full of stuffed animals and puzzle books and Chips Ahoy, and my purse full of socks for all of us for getting through the Atlanta airport; wrangling the suitcases by myself through the airport because God forbid any of my children offer to help me. We bought tickets at the last minute and none of our seats are together …. Hello, Delta? Please be flexible tomorrow and re-assign us. You just KNOW there’s a journal entry here someplace, and we haven’t even started yet. I think the aspiration of the entire trip is further proof that I’m insane.