Worst Case Scenario
I am not one for surprises when it comes to life events. I'm also not an optimist, or a pessimist for that matter; I think of myself as a pragmatist. Whenever something new (for better or worse) is coming my way, I always try to look at the event from every angle. I always plan for the Worst Case Scenario. Then I examine how I would handle it, remind myself of my priorities, then get on with it. It's my thought that as long as I'm ready for the absolute worst that could happen, I can only be pleasantly surprised if it turns out any better. This method had served me well for many years and helped me to keep a level head in all types of crises and drama.
The first time this methodology hit a speed bump (understatement?) was with my less-than-ideal childbirth experience. I thought I'd prepared myself for every scenario; I really hadn't. I was BITTER that my research hadn't prepared me for the experience. I've (mostly) gotten past that, but now there's a whole new issue: my progeny.
“Making the decision to have a child - it is momentous. It is to decide forever to have your heart go walking around outside your body." -Elizabeth Stone
I remember reading this quote before becoming a parent and thinking what a sweet sentiment it was, to love something so much that it's like your heart. After having a child, I realize my woeful misinterpretation. This is not a sweet thought; it is an expression of the complete and total vulnerability a parent has every day. The first few weeks with Daphne were all about learning how to live with the constant fear of SIDS looming over my shoulder. Worst Case Scenario was no longer an option: I was making myself crazy, triggering my PTSD. My new philosophy: roll with it, maybe spin a little optimism in there, think about the better days on the horizon. When bad things happened, we'd take them as they come and deal with them as needed, but trying to wrap your heads around all the ways your kid can be harmed is no way to live. I still used Worst Case Scenario for most other aspects of my life, but with the kid that just wasn't an option.
What happens when you're confronted with the Worst Case Scenario that you'd never let yourself consider? The longest and worst week of my life. I'm getting ahead of myself, let's rewind:
Earlier this year my furbaby, Charlotte, was diagnosed with lymphoma. When I wanted to panic, I stopped myself and went into Worst Case Scenario mode. I researched what it should mean, how much time we were supposed to have with her, how the treatments worked. Yes, it was a death sentence, but all signs pointed to a year. A whole year to say goodbye? We'd make the best of it.
My research failed me again. Just when I'd gotten over the bitterness of my childbirth, Charlotte refused to bow to the numbers and lost her battle with cancer after just three short months. I wouldn't, COULDN'T let this crush me: I had my incredible daughter in my arms to distract me. So I chose to see the aspects of Charlotte's spirit that appeared to be alive and thriving in my daughter and soldier on.
Last Saturday we found a lump on Daphne's neck.
I spoke to some fellow moms and they assured me that cysts were super common, their own kids had them. I kept myself optimistic and planned to take D to the doctor first thing Monday morning.
At the pediatrician they smiled and poked and prodded. They asked if D had been ill recently, could it be an infected lymph node? Nope, no signs of illness, no fevers. Did a CBC, came back totally normal, no signs that her immune system was in overdrive. It's probably a cyst, but better get an immediate consult with a pediatric surgeon (for Tuesday) and take her (today) to the hospital for a chest x-ray and ultrasound. The nurse practitioner, Heather (our friends go to her for all their check-ups), was all smiles, told us this surgeon had 30 years experience and was the man she'd take her kids to in the same situation, theN promised she'd call personally by the end of the day once a radiologist had reviewed the x-rays, CBC, and ultrasound.
The hospital was when I started to get a little bit nervous. We were waiting in the radiology unit: all the other kids there had SERIOUS infirmities. Despite a few long hours of waiting, we got everything done with minimal drama from the kid. D made me laugh (and astonished the Xray tech) by repeatedly kicking off the sand bags they used to try and keep her legs still for the image. That afternoon Heather called. The radiologist had been pretty sure it was an infected lymph node (the mass had a blood supply and was semi-solid) until he found out there were no other symptoms of illness. Heather assured me Dr. Miller (the surgeon) would give us a better idea, he might even take one look at her and just know what it was from his experience. The lack of answers made me nervous; this was supposed to be 5 minutes in the pediatrician's office where they would assure me this was a harmless cyst and not to freak out. So much for that.
Tuesday at the surgeon's office I was totally cool and collected. Dr. Miller poked and prodded, asked us the same questions as everybody else, nodded some, then sat down next to us and started talking. I heard the word "concerning" and my heart popped out of my chest and fell to the floor.
I honestly don't remember most of what he said after that. He talked about the location, the hardness, then some new words sent shockwaves through what was left of my chest cavity: Biopsy. Immediately.
At some point he asked if I had any questions. "So... it's not a cyst?" No, definitely not. Then I asked what was probably a stupid question, "Well.... What do you think it is?" At the time, his response made me want to keel over, on reflection I really respect how he answered the question. "Well...," he flinched a little and seemed reluctant to answer or make eye contact, "benign... I would hope benign." Not inspiring a lot of good feelings, but I respect he didn't want to be a smiley gladhands. His response forced my brain to acknowledge that there was a Worst Case Scenario that would need to be considered.
Somehow I kept it together as we waited in the scheduler's office. Daphne would go into surgery first thing Friday morning. They would go in and do an immediate frozen biopsy to determine if the mass should be removed right away, then send off a section for a full pathology report. By the time I had D packed up in the car to go to day care i was definitely losing it. I managed to call in sick to the rest of the day at work, drop her at day care, and just make it through the front door before pretty much collapsing. An elephant had taken up residence on my chest, and I oscillated between trying not to vomit and wondering if anything would ever feel good again.
It was as if the moment those words were spoken, my brain instantly went back to Charlotte. Charlotte's parting "gift" of her spirit would also be her cancer. Suddenly I was dually mourning both my dog and my child. I just kept thinking THIS DOESN'T HAPPEN. Childhood cancer is on TV, in movies for dramatic effect. It's Jerry's kids. It's not my daughter. There's no history of it in either of our families. We don't live next to power lines, or drink tap water, or smoke cigarettes. I did everything right! I fed my kid organic food, I breastfed exclusively. THIS. DOES. NOT. HAPPEN.
I don't know how we made it to Friday. I couldn't go to the Worst Case Scenario, because that scenario was unacceptable. My brain couldn't handle even considering the idea. So that elephant just kept bearing down on my chest while I did everything I could to think about anything except the lump that seemed to be growing larger every day.
I will say that the whole surgical experience was handled very well by Arnold Palmer hospital. We had maybe a 20 minute wait after check-in, but once we were taken to pre-op everything went like clockwork. Our pre-op nurse, Ashley, was super friendly, playing peek-a-boo with Daphne and bringing her a beanie baby. All the doctors and nurses that would be in the O.R. came in to introduce themselves and explain what their role would be during the procedure. At 8:30, the scheduled time for the operation, Daphne's team was ready to wheel her out of the pre-op room. Ashley asked us (though I'm sure she didn't mean it how my doomsday brain took it) if we wanted to give her "last kisses." We were shown to the waiting room and that elephant started to crush me.
Ian and I dragged ourselves over to Winnie Palmer's cafeteria since we hadn't eaten anything. I somehow choked down some orange juice and a turkey sandwich. Going to Winnie was a horrible idea; being back there just triggered all the worst possible feelings about my birth experience. I settled back in the surgical waiting room and tried not to have a panic attack. I played spider solitaire on my phone, I tried to read my kindle, I watched local news on the TV. All I could think was that the doctor was going to come out of those double doors and possibly crush my ability to ever feel happy again. The little I had allowed myself to consider the Worst Case Scenario had shown me that would be my future. Ian and I had leaned on each other hard to get through the week. We had come to a very important conclusion:
All the planning, all the good intentions, all the worrying.... none of it would matter if she wasn't there.
Making sure Daphne had a well-rounded diet and wasn't a picky eater? Getting Daphne proper pre-K education? Instilling good manners? Avoiding teen pregnancy? Not butting heads with a teenage daughter who hates me? All these things I was "worried" about meant absolutely nothing. I couldn't even think about the future. A coworker handed me an invitation to his boy's first birthday party, and I wondered if we'd be too busy going to chemo to attend. Would we have to cancel our planned October trip to St. Louis and try to get our money back to go toward medical bills? Would one of us have to quit our jobs to look after Daphne's health? This was the new future I was potentially facing. All I knew was that, if it turned out Daphne was ok, I would never EVER forget the way that week felt. There were many nights I held my daughter and husband in my arms and said how "lucky" I was, but I didn't appreciate it ENOUGH, clearly. Even if my daughter made me insane every day for the rest of her life, provided it was a long life, I wouldn't mind. Thursday night talking with Ian, through steady tears, I told him that if Daphne was okay, as much as it hurt, that this week was a GIFT, something I could carry with me every day to make anything that came after manageable, because I would know what it would feel like to think I was going to lose her. I reminded him that, no matter what happened, we would get through it together.
Those doors swung open and my poor abused heart took another beating: Dr. Miller was approaching with a second doctor, a female. Oh God... he had to bring a woman doctor for backup? Is he anticipating needing a second to console us? To clean up the vomit? To administer smelling salts? He wasn't smiling. I clutched Ian's hand and reminded myself how to breathe. Dr. Miller sat, took a breath, and began, "Okie Dokie..." Wait a minute... okie dokie? That seems like a pretty casual way to start a conversation when you're about to tell a parent their tiny baby girl has cancer. Oh, crap, he's still talking, "-the second I cut into it I saw pus," and he smiled, the first time I remember Dr. Miller smiling through this whole ordeal. "That's good, definitely infection, so I stopped, cancelled the frozen section. Sewed her back up. We sent off the pathology just to be sure, but it's an infected lymph node."
That was the sound of my blood flow returning to normal after that elephant got up off my chest. Ian clutched my hand and I think we both choked a little and started grinning like idiots. If there's been a human on this planet to get more pleasure out of the words "infection" and "pus," I'd love to meet him. Or... actually probably not.
Dr. Miller went on to tell us that the position of the tumor had been what made him want to address this with such urgency, since it's right in the area they look for Hodgkins (I still shuddered when he said it). "So... a tumor would not have pus? Just so I'm clear?" "Nope. We'll do the pathology just to make absolutely sure, but I'm convinced that was just a lymph node. Set up some drainage for it, going to give you some medications....." he kept talking. Finally, I had an intelligent question to ask, "Wait... how did this even happen? As we established, she hasn't been sick... what makes a lymph node get infected to this point anyway?" Dr. Miller scratched at the back of his neck and shook his head a little, "I mean... could be a lot of things. She been teething?" Are. You. Effing. Kidding. Me. "Teething?? Teething could cause this??" "It's a bit extreme, but yeah it's a possibility. We can't really know for sure."
Extreme? My daughter? I guess I should have known that my certified drama queen could take teething to a whole new level.
We go in for our follow up on Tuesday. I'll say that there's still a small part of me that won't feel completely OK until we get the pathology back, but based on all my other interactions with Dr. Miller I really don't think he would have tried to convince us everything was going to be ok if it was still a real possibility that it wasn't (after all, he let us suffer all damn week). Now you see why last week's peanut was so truncated: after Tuesday I just didn't have it in me to be spunky. I don't even know how I wrote that entry; I just kept combing over those portraits, looking at that hint of a lump on my daughter's neck.
In closing to the parents out there: remember what really matters, hug your kid, appreciate every minute you have them in your arms. To those that are considering parenthood in the future: consider making an elephant proof cage to protect your heart as it goes walking around outside your body.