Getting Weird

I started a post that outlived it's relevance before I got it finished after our Thanksgiving hospital stay. I reread it the other day and wondered if I should post it, because it will be lost if I don't and the emotions are still a part of this process. Wouldn't want to lose those, right? Right? 

Then, this morning, I had a bit of an epiphany that made me process a little of what I said in it. More on that later. Here it is. 

I had a weird feeling this time in the hospital. Something I've never felt before. Something almost embarrassing. 

I enjoyed it.

That's it. She's officially nuts. Run, before any of the crazy lands on you.

The thought of coming home felt like entering isolation. Sure, 4 am vitals, frequent IV bag changes, frequent monitoring of the fevers were a pain, but they were performed by living, breathing adult humans who were responsible and adulty. Sure, hospital food is not exactly fodder for a discerning palate, but did I have to scrounge in the fridge to come up with a menu, and then go to the work of preparing it, then clean up the mess afterward? And even though I don't really know our doctors and nurses, every few hours I had actual contact, with words and everything, with real, word-using people who possessed fully developed social skills and did not have to resort to communicating by crying and pointing. 

Maybe it was the way it snowed every night, so the lights of the city reflected off the clouds hanging low outside the big window in our room, on the back side of the hospital overlooking the grounds, not the street, parking lot, and cluttered roofs of the front side. It felt cozy, protected and safe. Unlike our new house, which sometimes feels unfamiliar, lonely and a little creepy when B is not home. We were not on isolation, so we could go play in the halls, which were practically deserted, given the low patient room occupancy and the fact that it was over the four day Thanksgiving weekend. 

Now that we are home, though, I am really enjoying it here. There is space. Quiet, aside from the babies, and textiles to absorb their racket. All of Daniel's toys. Netflix on the TV. Floors I feel ok about a baby and a compromised toddler crawling and playing on. Not to mention the glorious, glorious sleep we all got last night. It's good to be here. I don't know why I was being so weird about it. It doesn't feel creepy, just lonely. And I'm running the furnace at 67 degrees without guilt. Being warm makes such a  difference. 

I've been processing the fact that we are almost done with the first phases of Daniel's treatment and are about to enter maintenance. Like leaving the hospital and going home, it's a good thing. And like being discharged, I have to go and be all weird about it. For eight months, and one more to go yet, we have lived and breathed Daniel's treatment. We want to be normal, but what ever will we do with ourselves then? Just...be normal? Without living in Cancerworld? But...this is where we live. It's become familiar. I feel a little panicky about it ending, for some reason. Like maybe even my identity has gotten a little wrapped up in this whole process, and I'm going to have to unravel it now. Like the fact that we have become oncology parents has become a cancer in itself, and has invaded and metastacized to the rest of our identity, and now we have to start to excise it. And now will have no unique experience or perspective to offer, because we will become just as normal as we ever were. 

I am sure, positive, in fact, that ending this most intense treatment will be exactly like coming home was. As soon as we walk through the door into our new, boring, normal life, we will recognize that it feels and smells and sounds...nice. Like we can go to bed and sleep for hours. Like these eight months were a weird dream. Like we can't wait to put them behind us and conveniently forget that every day, more kids are diagnosed, more journeys begin, more lives are shattered. 

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I think I have finally laid a finger on this troubling feeling I have had ever since that first full day of our new normal, April 23, the day I googled ALL and read, 90% survival rate. There has been a huge procession of emotions through this crazy head of mine, but one has stuck with me and it has created more awkward conversations than I want to admit. Almost always, when people ask about Daniel's diagnosis, I preface it with "just". Just ALL. Just pre-B. High Risk, because we didn't quite hit minimal residual disease at the end of induction, but not Very High Risk, still a great prognosis. I can't bring myself to speak of his journey without bringing up others whose journeys are harder, longer, or have less of a chance of success. I suppose the rest of you have seen this for a long time already, having the advantage of stepping back, scratching your heads, and asking yourselves "why is she even blogging about this if it's no big deal? Why does she insist on reminding us at every turn how much worse it could be?" I can't believe it has taken me this long to recognize a textbook response to trauma. I've spent most of my 32 years navel-gazing, trying to force past the walls my brain throws up to fool me, trying to see what is actually happening in the murky corners of that brain, trying to become as self-aware as it will let me. I read somewhere, once, that people who experience frequent lucid dreaming (where the sleeping dreamer knows they are experiencing a dream and can control the direction the dream takes) are less likely to be fooled by the waking directions their brain takes, to see through the mind's subterfuge and identify the root causes of emotions instead of merely reacting to the effects. I do experience lucid dreams, something that, when it happens, is a trippy, amazing adventure, to experience reality shift and become completely pliable, while also being aware that it is not normal, this is merely a temporary stop in a psychadelic dreamland. Which tells me I should be more adept than a good percentage of the population at not letting my brain hide things from me. And guess what. Still happens. 

But all that aside, the light bulb did not flicker on for me until this morning during breakfast as I shoving a steady trickle of sliced bananas into Alex's mouth and letting the thoughts come through at will. I almost heard the squeal of the brakes in my head. Survivor's guilt. It really might be as simple as that, I think. And it didn't come on gradually, it came on immediately, as soon as Daniel's leukemia was typed as ALL. Before that moment, it had been a horrible question of the type, dreading that it might be AML, that maybe it was some rare, random or even chronic type, but as soon as they told us it was the "good" kind, I got all weird about it. And I have been weird about it ever since. I didn't think it was survivor's guilt, because he hasn't survived it yet. But I don't truly think, aside from the obligatory ifs, that he won't. I started this journey pretty confident that no matter what might happen in the interim, he would not die from this. 

I have read and heard other moms talk about their children's ALL diagnoses being completely terrifying and devastating, of them being overwhelmed by the fear that they might be in the unlucky percentage. I have spent some time there as well. Or maybe not. Maybe I was experimenting with the fear. Or dipping my toes into the freak-out pool. When people compliment my strength, I feel a little squirmy inside, because I don't feel strong. The mothers who are facing terrible odds, they are strong. I am just lucky. Our diagnosis is "diet cancer". Which is also why the freakout happened a few months ago when I realized how quickly and silently a fatal infection, not-from-cancer, can occur. I had not been aware of just how easily that could happen before, hence the immediate crush of what I now see as the guilt complex that we don't have it very bad. 

Of course, it has come and gone. It left during the weeks of steroid hell, when I watched Daniel become a tiny would-be axe murderer with uncontrollable munchies. (Now I'm imagining Jack Nicholson's deranged hacking through the door in his famous "Here's Johnny!" scene, except in miniature, and into the refrigerator.) It left when he was in so much pain, face planting when he tried to crawl, and spewing vomit and diarrhea every time he rolled over. It left every time things got intense. But during the placid times, it came back in full force. It has tempted me to exaggerate our experience, simply to assuage some of the guilt over it not being worse, then, in self-recrimination at having been tempted to do so, I have swung the other way and minimized it. Which I also feel guilty about, because in doing so, I fear I have taken it away from Daniel. I haven't let him be a heroic toddler with a beastly (albeit not the worst beast) cancer diagnosis, I have just expected him to be a dismissive tiny adult. And he has obliged. In a way, perhaps it has served him well, because we have turned every needle poke into a game and he has barely acknowledged the pain. Maybe this is because I haven't let it affect me, being so overwhelmed by how much worse it could be, and he takes his cues from me, or maybe it is because he is the most resilient little boy ever. I don't know why he doesn't cry or fight his port accesses, his blood draws, his ara-C and Erwinia shots. I don't know why, as the screams of other little fighters ricochet around the shiny oncology clinic halls, he tries to grab his $17,000 syringes and help the nurses push their burning contents into his legs, whimpering a bit at the pain, but also, so eager to help. I thought it was just because he is two, and two years olds love to play at being "big", but the more I see other kids react completely differently, I wonder what makes him the weird calm one. The few extended breastfeeding studies that exist make the link between exceptionally calm, confident toddlers and the ready availability of the unique comfort that is boobs, and maybe this is the answer in his case...But I will never have a randomized control group in my little N of 1 trial, and the confounding factors are many and varied. 

As we near the end of his high-dose treatment, I feel a little bit of panic and anxiety mounting. At first I thought it was the loss of microcontrol over his treatment, and that certainly does play in to it. But mostly, I suddenly realize, it is because it feels like we are walking away. We are leaving the brain tumors, the incurable disorders, the hopelessness, the sadness, the kids who are unbelievably brave in spite of terrible odds. We know it is still there, that it will always be there inside those walls, that every day, a new diagnosis walks through those doors, another life shatters. And yet, we are to simply leave and live our lives. We are required to move on, in spite of the fact that we cannot unsee the things we have seen, we can't unhear the stories we have heard, we can't unknow the kids who won't or didn't leave the hospital. 

I read somewhere that a staggering number of patients and families who come through a childhood cancer experience live with symptoms of PTSD. I suppose I can see how that would happen. To live every day with death, to see every symptom as a sign, to be required to overreact to every little thing, lest it become fatal, this is practically the definition of war. I believe we will walk away from this without experiencing panic attacks with every reminder of our experience, but I now see that we won't walk away unaffected. Not only will I always wonder who Daniel would have been, what his potential was, without the massive loads of toxins dumped into his developing body and mind, I will not be able to give these worries the weight they deserve because I will always feel a little guilty that he survived it, practically breezed through it, that we still get to live a normal life, when so many other lives were cut short, changed forever, that some are not walking away. They are limping. Crawling. They will never completely recover. And some parents, parents like me, the only difference being the outcome of our baby's treatments, are leaving the shattered pieces of their hearts inside the walls of that hospital and going home to nothing. To know these people, to be invested in them, to hope with them, cry with them, to realize that you need, truly need them to survive this, and to know that if the worst should happen to them, your wholeness will cast even sharper shadows over their loss, revealing it even more starkly, this is also a unique torture that comes with survivorship. 

As far as news, we have gotten our fourth Erwinia shot (2/3 of the way through this $209,000 round, but who's counting?) Our nurse was awesome and even took the time to bring a whole other set of materials (includng a band aid and heat pack for sore muscles) for Curious George, so Daniel could give him his Erwinia. The gloves were a little big, but George was a brave little monkey. George is still wearing his hospital bracelet and bright orange band aid. We have been lucky this Erwinia round to not be on precautions and isolated in a room the entire time, so we roam the halls and make new friends while we wait the requisite hour after each shot to monitor for reactions. Our newest little friend is Cooper, who comes in every Friday for an infusion of an enzyme that keeps his body functioning. Daniel may have used his sad eyes, watching him and his sister playing with their Christmas presents through the glass infusion room door, to get himself invited in for matchbox cars and cookies. His mom keeps a Caring Bridge site for him, if you want to meet him too. http://www.caringbridge.org/visit/coopertippett/journal/view/id/567b5e9b4db921e17bcdc66c

I discovered his page also contained a Youtube video with Daniel (well, the back of his head, anyway) in it from our band with Brad Corrigan et.al. day last week, I'm reposting it here. http://youtu.be/NkO-Nz7PvvE I couldn't place why Cooper looked so familiar until his mom said they had jammed together last week.