The idea that I can evaluate the steps I take, assess a direction, formulate a plan, and 100% affirm I will ultimately find the ending we hope for in adverse times is not guaranteed with cancer. How can it be that something sought after is not achieved when everything your focus your energy on is in the right place? (Case in point - the "roll" I get on sometimes during a wee halftime speech where motivation eclipses the rim of the lockeroom, spills forward to the second half, and then storms the field for the second half still yielding nothing in the way of goals.) This is why I like movies so much. Predictable many times over like the way we drew it up on the chalkboard, rarely reality, yet reassuringly thought provoking for what's possible. Instead of a Hickory High State title in Hoosiers, it's the idea that Jimmy Chitwood ("J.C." if you remember from a post a long while back) misses that final shot and we (the audience) are now glaring across the floor stunned as Central High celebrate. This is the unexpected sucker punch no one saw coming. Especially me, when things do not work out the way we drew it up at halftime no matter HOW HARD we work, no matter HOW HARD we want it. So what the hell do we do then?
Polly and I met with Father Joe very briefly last summer about 3 weeks into this thing. A few tears and a few words shared but nothing earth shattering was figured out. Looking back it wasn't really about finding clarity on that day. It was too early for that. But he did speak to us about a centering prayer though he did not explain much about. This was something for us to figure out. And rightly so. There was no guide on where to go from that point, there was no official notion that once found the center would provide a healthy child, and there was not a hint of what direction to start off in. So, the search for the "center" came to life in many forms, folks, and forethought thereafter....and it will continue to be roughly tuned on some days and finely tuned on others in an attempt to find a perfect pitch likely not possible even through the day I cannot humanly hear it anymore. While doing so, in the right frame of mind (one I need to remember more often), it makes TODAY an opportunity for good things to happen. I feel like I am moving in the right direction toward figuring this centering process out, but on some days (like today) it's just a tough go.
Eat - and Eat we have. It is hard to describe but Food has just tasted better in the last 6 months. The company and atmosphere make it enticing and fun and when you think about it, we all get together around food a whole lot. Ellie's blood counts have forced us to stay in much of the time and so exploring more culinary creations has become a lot of fun. Savory sauces, quality meats, finding gems at Farmers markets, and my favorite search for the perfect sandwich lead the way. I now know the layouts by memory of 5 different grocery stores around here, each with a slightly different purpose for what I'm looking for on a given week. The numerous people who have brought us food over the months and continue to think of us has been so deeply moving. One of our guardian angels, Theresa, still reaches out every so often with an enormous basket of goodies and I feel it is food for the soul. We are so ever thankful.
I have my in-laws to thank for teaching me the ways about truffle oil, french wine, and the enormous importance of Sunday night dinner. The Food Network is used to look toward for inspiration and assurance that yes, there can really never be too much garlic involved. Ah, and my hero to draw experience and motivation from when figuring out a menu? Easy. The best cook I will ever know - my mom. Keep it healthy and simple and the flavor will take care of itself. I am also married to perhaps one of the greatest producer of creative baked goods I will ever know where cupcake is currently being redefined ahead of T&E's 3rd birthday bash in June. When we do get to go out on that rare birthday occasion or date night approved by Ellie's good moods, we always choose a new (to us) San Francisco restaurant because let's face it, there is just too much good food out there to eat all at one place. There are also methods of eating that bring great joy like Timmy's unparalleled technique to eat asparagus from the bottom up and leaving these shreds of green skin behind...almost like the uncasing of a sausage I guess. Its bizarre and gross but its hysterical. We also have the moment in the morning where I have finished off my Cheerios and as is custom Ellie runs to the fridge to pull out a single serving of yogurt for "YOOOOGEEEE Time". A few months ago I still got about 7/8ths of the serving into my own belly. Now that she is tall enough to retrieve her own spoon from the utensil drawer and invite Timmy to do the same (they conspire like that often, I'm afraid), I am lucky to get half. But she is so darn happy with herself in the process. Good food being savored among friends and family where taste buds can find new depths of joy allow for truth to come out proving what's important - the people right in front of you at that very moment. You want to find some quality time in your day with the people you love, its about a solid recipe, perhaps a bottle of wine, and leaving enough day set aside for the event to unfold like you are having a 10 course meal of epic proportions. I keep up my workout regimen so the good food can keep coming, but more importantly a savory bite in the right place with the right people can be a recharging and priceless experience. "Yogeee" time will never get old.
Pray - The power of prayer was a hard sell on me. I'm not sure I completely understood it until I was an adult. Everything before it was good practice but the concept of what it meant took time. Enter moments in life where control is no where to be found over situations and naturally I want someone or something to turn to. This is where it is nice to never be alone. When my dear friend and coaching colleague Wes, at age 34, passed suddenly 8 short years ago I had my first moments where there was no where else to turn but to God. There are many situations, cancer being one of them, where it is not possible to fully believe someone if they tell you "it is going to be all right". No. In fact, I am convinced anyone who feels they can offer you that line has never been through this terribly long and absolutely draining path. We pray for it to be all right but mostly, I want to make sure my thoughts are vocalized to someone who is always listening. I know I know...the answers will come but waiting and waiting provides for some unfair times, especially when we talk about a 2 year little girl. You beat yourself up, find a numbing technique through work or night time events, but really the best medicine I have found is to embrace a relationship with prayer while standing with others in this same childhood cancer boat where perhaps one more voice added to many before me will bring clarity and truth.
Coach Valvano, while dying from incurable bone cancer, talked about laughing, thinking, and moving yourself to tears on a daily basis. Man, was he right on! Through prayer, my thoughts get a little bit more organized and find the right outlet for tired complaints or relieving tears. They sometimes turn into a doable checklist for the day or a list of priorities where the small stuff is left off the bottom of that very list on purpose. It allows me to ask, no plea really, for Polly to continually have the strength she needs if there is nothing else that can be fulfilled for us at that point. When we plan birthdays, trips out of the house, dinners, even a simple walk with the stroller there things that have to be taken care of so that Ellie stays germ free and her skin is taken care of outside. It is a seemingly exhaustive and unfair mandated set of tasks the situation dictates we do. We go from blood data point to blood data point feeling like each time there is a bit of roulette being played we want no part of. I think praying alone can keep our fatigue in a place where we are never completely overwhelmed despite the elements around us...but, to be fair, it is very tough sometimes. So, in that aspect....my search for the center has made progress and I am very grateful for some proactive step I can control. After all, there is no alternative here other than to just keep going.
Maintenance has been a bit of a mixed bag thus far. Her blood counts a week ago were low again and in the neutropenic levels. They told us to expect it to be this way for a couple weeks, but it is still hard to hear that we have to hold the chemo until they come up. Our clock moves forward nonetheless with the missed chemo not being made up, so if she recovers quickly it won't be as big of a deal. But, if she doesn't she is open to getting sick very quickly with cold bugs which could delay her even longer. We are so READY for more routine labs. Tomorrow she goes in for another blood check. If she is back above the ANC limit, she'll go back on 100% chemo. If not, we will wait another week and then go on a lowered dose. Chemotherapy in the maintenance phase cannot be given when the immune system is so weak, so it is a balancing act that has to be figured out with the meds. Ellie's spirits have been pretty good. It's not much different than I described it before where we celebrate like crazy our fun days and laughter that abounds with her, but we both go to bed each night with just that ever so slightly nagging feeling that tomorrow we could wake up to something dramatically different. There is no way for me to completely describe what that feeling is like. We need some prayers for some good blood work tomorrow. It will provide a much needed lift, I think.
Yesterday, one of our fellow cancer warriors, Mia, lost her battle with leukemia after a three year fight. She was 5 years old and has a twin brother named Noah. There are no words to describe what this family has gone through (nor should ever have had to in the first place) and I hope you can join me in praying for healing for them. They sum up courage and bravery in every definition of the word and deserve all the support we can send. It is absolutely heartbreaking to hear about. I will never understand why these things happen to us. We do not take for granted ONE SECOND that Ellie is doing well right now and just pray (PLEASE!) that she stays moving in the right direction.
Love - My wife embodies everything that Love is. She keeps me humble, she inspires me, and she makes this road easier to deal with if there is even a possibility to that. Both Timmy and Ellie both just learned to say "I Love You". Have to admit, Polly gets it a lot more than I do. But I can deal with that :) They both demand a hug and kiss before I leave for school every morning and are ready to present a hug to just about anyone they recognize that walks through our front door. Ellie puts a smile on her own face that i rarely think of as cute....more like "pure". I did not know the dimensional depths Love could provide until I met my kids. It re-prioritizes your world. As I've seen Ellie now have more friends inside the LPCH walls than she knows outside of it, there is a remarkable love that she gives off which is infectious to everyone around her. I use that as inspiration to try to handle things better while teaching and find energy in a tired step when needed. Understanding that no matter what happens, that love will always be there is a very difficult thing to wrap my head around though I want to more than anything. I will not accept anything less than a healthy daughter is and will be the prevailing cry so long as Hope is alive and well. I love that we have made it this far. I love that she'll wake up tomorrow morning and start asking for my phone to look at pictures of her and Timmy laughing to herself while I am still trying to sleep and the wee hour of 5:15am. Even more so, I love that even if the day is filled with temper tantrums, demands for food, and bitter negotiations over going outside when its dinner time....we get to have another day to do all those things.
I'm looking down my bench and love when I can hear Jimmy Chitwood say with such clarity that its like bells going off with a Testimonial and RESOUNDING Rhythm. "I'll make it" he says. If we're going to find our center in all of this (and I think an eat-pray-love diet works wonders toward understanding how to go about it), there will come an inevitable time where we will have to trust in Faith and let him just shoot the ball like he says. He got us here, he'll take us home.
Please pray for Mia's parents tonight. Thank you, everyone.
Serenity Prayer
God grant me the the serenity
to accept the things I cannot change;
the courage to change the things I can;
and the wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
