Sometimes the words are hard to find and other times they are too numerous to count. There just isn't always the time to output them regardless of the quantity. As I was reminded, they need to find their way to paper. It's actually inevitable. Without their release there is no understandable perspective to keep us from moving in circles. I met another "J.C." character recently in a book by Andrew Smith I finished a couple weeks ago called "Winger". Joey Constantino. A persecuted individual on a daily basis by some who can also say no wrong when asking for and listening to the very best of those close to him. The book has a few different reasons for Joey's existence and my interpretation does not necessarily do all of them justice, but I am incredibly struck by the moments in the story that change everything. One minute Ryan Dean (main character) is asking Joey for advice, goofing off with him as they trail on to rugby practice, and letting him know how much he appreciates being able to talk to him. The next minute, Joey has gone missing, is brutally attacked, and I think you can guess the end result. Ryan Dean is left in shock and disbelief. And now his venture to and from the rugby pitch is forever changed. It is the razor thin line between what we know (and HAVE known) to be the comfortable truth and where we are heading when things change at an unexpected crossroads....and do so in the blink of an eye. Coming to terms with what that means takes me so very long to sort through. And thus the words do not always come together in a way that makes sense until occasionally I can find a way with this here blog. Why can't the walk down to the field just BE....a walk down to the field?
O.T. is our cancer world lingo for "Off Treatment". Funny, I kinda like that we have a little language of our own. Its great to hear the newest members to our club ask about it and then see 10-15 people respond with all the various acronyms. You gotta walk the walk! Here is a good example --> "My 5yo ck was dx 4 months ago. We are in DI after a tough IM1. The doxo's side effects were worse than the Pred (I HATE STEROIDS) but with checked with our onc, ped, and np who all said they will lessen over time. Her ANC is still being effected by lingering HD MTX though Hemo and WBC remain stable." Got all that??? ck = cancer kid; dx = diagnosed; DI = Delayed intensification (4th stage of Leukemia treatment); IM1 = 1st Interim Maintenance (3rd Stage of treatment); Doxo = Doxorubicin (the drug that makes hair fall out within 24 hours); Pred = Prednisone; I HATE STEROIDS = I HATE STEROIDS; onc = oncologist; ped = pediatrician; np = nurse practitioner; ANC = Absolute Neutrophil count; HD MTX = High Dose Methotrexate (Main drug of IM1); Hemo = hemoglobin; WBC = White blood cell count. Now that the blood cancer parent dictionary has thoroughly been explored, we can move forward together. Ha.
This past weekend we did our third annual trek up to Camp Okizu, our beloved refuge in the Sierra Foothills outside of Oroville. The OT world really takes you away and in a lot of cases makes you forget the day to day grind of dealing with chemo and its horrid side effects. It also, as I have spoken here before, teases you into thinking a bit about the life before cancer when none of this was a worry at all. This particular venture up the mountain was a bit different than the previous two because of the different mindset we have spent our recent days in with no chemo to tie us down. You arrive to see Okizu with the magic that has always been there where smiles abound and commonalities are found instantly. You also get a harsh reminder by just looking around the dining hall on the first night of what gave us reason to come together in the first place. But for a weekend, we can find a way to set aside the weight of the world (that most would only see if you were able to peer behind closed doors) and just sit, laugh, share, and be amongst the vibrant energy of our kids who have been through more in their few years than most of us have in the 20-40 some years we've been at this adult life thing. We met a family just three years into being new parents who are a year into a fight with their only child's bone cancer. We shared a cabin with an incredible family (and now new friends!) whose son was diagnosed with the same thing as Ellie (A.L.L.) just last fall. And we were able to see multiple friends we have met from our two prior visits whose children are all improving and/or well into another year of healthy remission. We hear their stories and get taken back to June 26th, 2011 all over again....but in doing so, we find so much hope in the eyes of onlookers in our circle who know exactly what this feels like. It is support, solidarity, humility, and the comforting thought, despite not being able to solve anything, that everyone "gets it". For one weekend a year, this exclusive club feels like Home for our kids.
We went to Okizu over Memorial Day weekend. On Thursday prior to the weekend, Ellie came to dinner with an unhappy look. Her displeasure turned into angst and some sort of extreme tiredness. Very bizarre. She never misses a meal and now she refused to eat. We would see bits of rage until finally getting her into bed that supposedly were from being overly tired. But not eating in this manner is something begins to awaken my senses every time. Friday morning she poked at her food but seemed a little better. We decided to head onward to Okizu. She ate half her lunch but again looked very tired. Upon arrival at Okizu, we now felt a slight fever. (Shit. Now? Really?) Fever, Fatigue, and lack of appetite AND some sort of mention of neck pain. What? I could chalk it up to nothing significant....for now. Saturday was much improved. She was eating, playing with her two favorite twin counselors (who honestly could not be bigger blessings in our lives for T&E - they are the highlight of their trip to camp every year). Ellie took her much anticipated spin down the huge Adult zip line as did Timmy and both got in the lake for a swim. It was a grand day. No fever, just fun. On Sunday evening after dinner, things began to change again. Ellie picked at her dinner and then went into a bizarre pseudo-catatonic state for the evening camp gathering under the stars. Even the usual tricks to get her to laugh would not work. She was exhausted and we hoped a solid 12 hours of sleep would solve the problem. At 2am, we were awoken with her crying in pain. We now had a 103 fever present. A second fever following more fatigue and loss of appetite and supposed neck pain. There are about 7-8 symptoms of Leukemia and these are four of them, especially with the coming and going now twice in a four day period.
2am in the middle of the forest with a 103 fever. She is 7 months off treatment and showing symptoms that do not make sense with the cold and flu bugs we have seen with her outside of cancer in the last three years. The floor dropped out beneath me and there we were walking the fine line.....or maybe it was just me. Hard to tell because this got me going internally like nothing else has since she took her last pill in October. The doc likes to say there is a hint of PTSD to every parent's OT world. That may be true though to me, compartmentalizing it so we offer ourselves a plausible "explanation" to our feelings seems too easy. Maybe its PTSD, maybe not. Who the **** cares?! I have a 103 fever on my hands, its 2am, I'm on a tightrope, and there is nothing I can do but sit here, think, and watch time pass by like a tractor on the highway with one of those red triangle signs hanging off the back while he blocks traffic for miles. (Perhaps some leftover PTSD from driving Hwy 70 - sorry) Its paralyzing in moments like this. And without any warning, I fell off the Hope train. In my eyes, as far as I knew in that moment, she was in fact relapsing. Dammit. What the hell just happened? We were just swimming in the lake! Why can't a fever be just a fever?
There is no one who will ever have as high of expectations for me....than me. It is tough on some days, and thank GOD they are few and far between, to digest what may be happening and still hold onto the proper perspective. It also doesn't help to go through these emotions at 2am. What is it about kids that they must always get sick on a Sunday....and at night when everything is closed....and on a holiday weekend when the damn doc takes the subsequent Monday off????!!!! Maddening, I tell you. Ha. I'll likely find myself celebrating profusely the first illness that shows itself at 10:30am on a Tuesday. "Right, then....let's just scurry down to the doc and get on with it....this will be the easiest thing I've handled since 3rd grade long division." You may not have laughed at that last sentiment, but Joey Constantino would have done his sincere best to humor me. He'll do that because it is the initial steps in trying to work through things.
I laid in bed for the next three and a half hours staring at the ceiling of our cabin. My thoughts ranged from the sure cancellation of our family summer vacation to going back to eating before 5pm daily. I think I fell asleep for the final hour plus before the sun was too bright to ignore. And when I awoke, Ellie was up and her fever was still there. But she was smiling. Some sanity had returned.
Long story short, we drove home with the tylenol flowing to Ellie every few hours. I even packed the car in such a different state of mind than normal, I left one of Polly's bags at camp. (Idiot) Once home, we were able to get the go ahead ot Urgent care. Now, not sure if you realize the difference between Urgent care and the E.R., but for our cancer world, the distinction is important. The ER has protocols, crazy busy doctors who are usually unfamiliar with oncology patients, and overall lack of calm. They have cold rooms, machines that go "PING" way too often, and cost way too much money when all you need is a simple CBC blood test. Our ability to go to Urgent care instead on a Monday was a godsend. Not the Monday part but the fact that when you are off treatment, you have the CHOICE as to where you would like to go. Urgent Care = simple exam room, one doctor, one nurse, no pinging madness, and quality wifi so Ellie can watch the Ipad to keep her occupied while we wait. And we did wait, patiently, for five hours for our blood test. Her white blood cells, hemoglobin, and platelet count all came back normal. No relapse, this was just a virus with a nasty fever......vacation back on, deep breath, disaster averted.
We are safe for another day. Ellie is healthy for another week. That will be everything and the onlything I will ever need to hear. It took her until just today to fully get back to her normal self, but the worry has left. All is ok except that I will be making the 6 hr round trip trek this weekend to fetch the missing bag as a result....but hey, maybe I can use the time to think of what Joey was trying to say to me at 2am last Sunday night despite my deaf ears paying no attention. We try to be super human all the time as cancer parents. I'll tell you its just not possible. If I am to fall the wrong way off the tightrope one of these days, I'm not sure what I...we....will do. But that day is not today. We've got a lot of friendly eyes to look at around the circle who have walked the same path and without saying anything, I can always regain that feeling we are not alone. That's something.
Polly and I watched Ellie and Timmy graduate from preschool today. A simple ceremony in front of the family of preschool parents we have grown to love. For some reason, when Ellie first got sick nearly three years ago this next month, one of the things that came shooting to my head was the desire to see her take in her first day of Kindergarten. So that dream is now just three short months away. We would not be nor could we have imagined being in a better place for school the last two years in prep for that Kinder dream than the comforts of RPNS. We owe Kathy and Margie so much for taking us in when times were chemo centered and immune systems were non existent. They are both wonderful teachers and even better human beings. They represent our twins' first educational experiences. A rock solid foundation supporting the huge things to come, if you will. Including that first day of Kindergarten. We love you guys because you love our kids like they are your own, like any good teacher selflessly does. :) Thankyou.
Also endless thanks to a handful of people who continue to help us in enormous ways whether you realize it or not. Jim & Marti for being a simple text away (Aloha!!!!) and Danny & Brandy for showing us time and time again what it means to embrace family around every turn. To Carly and Corey for new connections and Kitty & Scooby who have only physically seen Ellie and Timmy for about 10-12 days total in their lifetime but embrace T&E like they have known them since birth. To our respective parents for all the obvious reasons....especially my dad who can distract my worrying mind with Clash of Clans strategy for hours. Ahhhhhhhhhhhhhhhhhh......you know when near disasters come and go, I get all thankful and stuff.
What a week. Laughed, thought, cried. Coach Valvano would be proud! We have some pics I will post soon from camp and the graduation. My prayers tonight are for this virus to be gone for good, for our new/old friends Ethan, Olivia, Christopher, Lauren, Sadie at Okizu, my former student CJ and of course my man Justin in Carolina who are all so full of life, its infectious when you see so many of them together. It is our calling to be there for them. Joey would be. And if Joey is no longer with us, then despite my shortcomings I will still pledge again to do my best to stand by as he would. The OT life is really just about keep on just keepin' on.
Friday, May 30, 2014
Monday, April 7, 2014
Wish - Day 1017
So it is my birthday. 38 years young though my mom would tell you it was much less than that. As most of my esteemed circle of friends are experiencing, there are few thinks better than watching your kids turn the next age in the single digit decade where pure, unmistakable joy can be found in a bounce house or a swing delivering a birthday cake. Right there with you, Mom. I'm sure I will be lamenting the same thing 10-15 years from now with T&E ad nauseum. Maybe I already am. I don't think birthday wishes grow old, so there's always that.
What have I done? Not enough. Where have I been? Several places, yet vaguely not much of anywhere. What's next? I wish I knew. I want for that answer to sound more positive than it seems to read but it is not a hopeless statement meant to invoke a "whoa was me" feeling. No, there is more to today because the search for what's next is ever present and the drive to get to that next milestone is alive and well. There is a bit of a paradoxical nature to the search though. Wishes invoke hope and ambition with processes laid down to start trodding toward what I think is where we want to go...but along the way new wishes pop up and or the original wish metamorphosizes to something that better represents the current reality we are wading through. The point, at least for me, is not to get everything I ask for but understand how to keep progressing. How many people only throw one penny into the water fountain and then call it a career for coin-hucking. Not I. And certainly not Timmy or Ellie as evidenced by our lack of loose change in the car for the parking meter every SINGLE time. "No, wait DADDY...I just have to DO something one more time *kerplunk* HA! Hey Ellie, do you have another coin????" We have fed the fountain of youth a small fortune in this family, rest assured.
I keep myself pretty wrapped up in work. Teaching is non-stop. Lesson plans, lab preps, exploring new textbooks, the ever present requirement of professional growth and the evidence one must conjure up to prove we are in fact 'growing', and meetings upon meetings with students in and out of the classroom to figure out how best they can walk out for the final time in June with a level of understanding (i.e. a grade) we are both comfortable with. It's a 10 hour treadmill run to grind out one day and a dance party with water breaks the next. All this going on even into my beloved off season. My 16th high school soccer season of 4+ months concluded exactly a month ago. For the first time in my career, I coached a team on the final day of the season...and we walked away with a championship to our name. For all that I had wished the day would be some years ago when I began as a naive 22 year old, I was able to walk off the field with a tremendous sense of accomplishment. We did it. WE freakin' DID IT! Every single kid on that team...a team that had become closer than any group of boys I had the pleasure to do daily work with on the beautiful game....every kid deserved the recognition of walking out number 1 that day. And I can look back, likely years from now, realize the impact of several lessons learned through the course of a season that just had that feel of something special, and know that even if nothing in my tenure comes close to this again, I will always have 2014. Truth. But....
The weeks since have proven something I think I already knew. The wishes in the fountain still haven't been answered yet despite the pinnacle reached and it is probably best to get back to the grind or dance party...however you want to look at it. It was a momentous thing to accomplish but I haven't felt any less of the of the burden in the background. The grind is the familiar method of pushing forward, so celebrate for the day and off we go.
I've been relishing weekend time since. More so now than in a long while. I think that has a lot to do with Ellie being off treatment in the spring for the first time in almost three years. Saturdays and Sundays have no more shackles on them, even if they were the kind you could slip your hands out of the last few months of chemo. I go home on Fridays thinking about what is possible and what things could be sought after for the next 48-60 hours, you know with a little Pharrell Williams slapping in the car (please excuse my undeniable drop to student vernacular from time to time....if you can't understand 'em, might as well join 'em, right?!). It's a good feeling. The kids have so many activities now from riding horses to going to countless birthday parties to riding scooters to making chocolate chip pancakes (!!!). They will never miss a beat and rightfully so. All this and I still feel as though the peace I wish for is not as present as it should be.
The cancer world is the cancer world. There is no comparison. None. I catch these phrases every now and again in the hallways or in my search for what's going on in the world when I can sit down and tune in. There are a ton of misuses for the word "cancer". I even caught myself this year in the lockeroom describing how an unwanted trait brought in from the outside world to a team coming together could prove to be a "cancer". What? WHAT the hell am I talking about? The analogy is gross, inappropriate, and cannot be used. It is difficult to hear it put into play from outsiders trying to make an understandable point, but I'm very sorry....there is no way to use it outside of the world that created it. Cancer is something that you can do everything right with, everything and anything. You can go to the far depths of your power to enlist every weapon you have to combat it...and you still have zero control on whether it comes back or even takes someone from you. That's the difference between a stupid analogy and the real deal. Control. By the way, while I am on the subject of poorly worded phrases, I'll throw out there the ridiculous line of "A watched pot never boils" as well. Baloney, it doesn't. Go retake high school chemistry and then go to your room to think about what you've just said. I know that's unrelated completely to this paragraph, but if we're going to have these things in the english language, let's have some forethought. Nothing is "like" cancer except cancer. I wish I wasn't so acutely aware of that and I probably shouldn't let outside comments bug me...but they do.
I wonder if we are in the interim right now and that thought is scary if I let get to that point. That could be applied to a number of things I guess if you were to sit around waiting for the next tragedy to unfold. It doesn't consume me but it enters my mind from time to time. Am I making the most of the time right now so that I don't look back in a few years wishing I had done more? It is a tough question because the treadmill grind doesn't much care. Bills need to be paid, school events need to be had, the long off dream of being able to purchase a home in the Bay Area has to be pursued (despite inches at a time) and we have to find time to rest and recuperate or else I will be mailing the electric bill to the library....and that just won't work. The interim represents a unique look at where we are at without the immediate pain of direct cancer contact. We are trying to move on and we are succeeding for now. I say "for now" because "for now" is all that really matters to me, especially on a day that has always been a fun one for most of not all of 38 years (I would have to admit I do not recall the joyous times of birthdays 0-5 very much but apparently they were thrilling).
Lately I've been wishing to find those quiet moments where things stand still. The special place where everything makes sense for a few moments. It doesn't have to be me by myself, but it has to present itself as something of a deep breath, perhaps a little sigh of relief, but more of a lung filled swallow of air that exhales completely without worry. I think about being up in the Sierras on a backpacking trip when we first came upon the Cotton Wood Lakes area, I have vivid memories of sitting next to Polly on our honeymoon on the shores of Kauai in white lawn chairs and not moving for almost two full days or our trek across country to Carolina where en route we descended out of Yellowstone park and saw EXACTLY why they call Wyoming Big Sky country. Sometimes I'm on my grandfather's boat sitting on the bow as we embark beyond the jedi ton escape to Catalina....the salt water filled air an incredible taste of what home will always be for me...and the incredible feeling of a Saturday dive being under the ocean's surface looking at life in complete silence. The day I came home from high school in March of my senior year, no one else home yet, and on the corner of dining room table was an envelope with my Bruin acceptance letter which I relished in complete silence before picking up the phone to call my dad. Or the overnight in Banner Elk in the Appalachian Mountains (yes, that's a town...please know your geography with this blog) when Polly and I were engaged, enjoyed our time to the fullest and then had to sit next to a man at brunch the next day who was dressed in yellow head to toe to cheer on his beloved Tenneesee Chatanooga football team that day (yellow socks and shoes, brutha?!) but found out what the weekend meant for us and wished us well. And of course the nights were Polly and I sat feeding the twins at 1:30am half awake, trying to laugh at Jimmy Fallon's jokes on Late-Late-Late night when the only worries were burping, diaper changes, and trying to function on 4 hours of sleep. These times were a lot of beginnings for the most part. I'd like to wish for more of those.
I am reading a book recommended to me by my Aunt (Thankyou!) written by John Green called "The Fault in Our Stars". I have not finished it yet, so please do not tell me how it ends. Actually I think I already know the ending will not be pleasant but the perspective of a terminally ill 17 year old girl is helping push this spring time lull to a better place for me....even if it just means I have a better Tuesday following this birthday monday when its back to the treadmill. She speaks in real terms and calls it how it is when faced with slowly succombing to cancer. The author shares that the only thing worse than having cancer is being a parent with sick child. Interesting, I don't know if I fully believe that but it was quite something to see someone else say it. Oh how I've wished this was my battle and not Ellie's. Anyways, the main character, Miss Hazel Grace, embarks on a trip through a Make-A-Wish esque organization to seek answers on what happened to several characters in her favorite book. Hand in hand she goes with a fellow cancer warrior who she undoubtedly falls in love with. It is a heroic tragedy from the start and her line of "The World just isn't a wish granting factory" rings very true for me today. Maybe getting what we really want is not the goal. Recognition of moments that make time stand still regardless of the overlying factors could be the heart of the wish. A wish that can never truly be granted but will at least let you keep wishing....and hoping. Cancer has to be one of the only things that makes me hate saying that and love saying that at the same time. Hazel says to a non-cancer friend of hers at one point who keeps commenting on how strong she is, "I'll give you all my strength, if I can have your permanent remission". Brutally honest truth when looking at how those two worlds intersect sometimes and though astonished she would lay that on her friend in broad daylight....cannot blame her in the least.
I had dinner with just Ellie a couple weeks ago. Timmy had a follow up appointment with his eye surgeon (he is doing awesome, by the way, on that front....better than we could have ever hoped for) in the city which Polly took him to. I picked up Ellie from school and decided we needed a Daddy-daughter dinner at a nearby restaurant. So, we got a two person booth facing eachother and she got right to coloring the placemat, her strokes now completely within the lines carefully laid out so that each color can be seen in its proper segment on the page. Her attention to detail was not so mesmerizing that she would look up and pose a few questions my way. "Daddy, what will you have for dinner?" I had thought about telling her that I wanted seared Ahi with garlic mashed potatoes and seasoned greens that oozed with a sauce underneath the fish....but I settled for "I'm gonna have Pasta". "ME TOO!" she said with as much energy as she has when she wakes up gleefully at 6am and starts prodding timmy to wake up or else she threatens to start singing. And we continued our banter back and forth about how her day at school was, with her head tossing side to side and her now near neck length pig tails never ceasing movement. She was looking forward to getting to go swimming again now that her leg was almost healed and she wasn't sure if Timmy could go with her because his eyes were still red, but she would ask Mommy. "Daddy, I want Milk" I like when she asks for things that I can give to her. From start to finish, I think we were in the restaurant for all of about 24 and half minutes. But I can tell you time stood still.
Even if my ultimate wish for her (or for Polly, Timmy, and I) has not been granted yet, I am committed to doing the dance party/treadmill to get to Tuesday so that I can see again if it might be. If its not, I'll get back to seeking the moments in the interim. The Hazel Graces have a deadline....right now (and I mean RIGHT NOW)....we, us, Ellie do not. I have to remember that. So, #38 is another beginning for the four of us, right?! One with limitless potential. I wish with everything I have and all that T&E will become for that to be true.
What have I done? Not enough. Where have I been? Several places, yet vaguely not much of anywhere. What's next? I wish I knew. I want for that answer to sound more positive than it seems to read but it is not a hopeless statement meant to invoke a "whoa was me" feeling. No, there is more to today because the search for what's next is ever present and the drive to get to that next milestone is alive and well. There is a bit of a paradoxical nature to the search though. Wishes invoke hope and ambition with processes laid down to start trodding toward what I think is where we want to go...but along the way new wishes pop up and or the original wish metamorphosizes to something that better represents the current reality we are wading through. The point, at least for me, is not to get everything I ask for but understand how to keep progressing. How many people only throw one penny into the water fountain and then call it a career for coin-hucking. Not I. And certainly not Timmy or Ellie as evidenced by our lack of loose change in the car for the parking meter every SINGLE time. "No, wait DADDY...I just have to DO something one more time *kerplunk* HA! Hey Ellie, do you have another coin????" We have fed the fountain of youth a small fortune in this family, rest assured.
I keep myself pretty wrapped up in work. Teaching is non-stop. Lesson plans, lab preps, exploring new textbooks, the ever present requirement of professional growth and the evidence one must conjure up to prove we are in fact 'growing', and meetings upon meetings with students in and out of the classroom to figure out how best they can walk out for the final time in June with a level of understanding (i.e. a grade) we are both comfortable with. It's a 10 hour treadmill run to grind out one day and a dance party with water breaks the next. All this going on even into my beloved off season. My 16th high school soccer season of 4+ months concluded exactly a month ago. For the first time in my career, I coached a team on the final day of the season...and we walked away with a championship to our name. For all that I had wished the day would be some years ago when I began as a naive 22 year old, I was able to walk off the field with a tremendous sense of accomplishment. We did it. WE freakin' DID IT! Every single kid on that team...a team that had become closer than any group of boys I had the pleasure to do daily work with on the beautiful game....every kid deserved the recognition of walking out number 1 that day. And I can look back, likely years from now, realize the impact of several lessons learned through the course of a season that just had that feel of something special, and know that even if nothing in my tenure comes close to this again, I will always have 2014. Truth. But....
The weeks since have proven something I think I already knew. The wishes in the fountain still haven't been answered yet despite the pinnacle reached and it is probably best to get back to the grind or dance party...however you want to look at it. It was a momentous thing to accomplish but I haven't felt any less of the of the burden in the background. The grind is the familiar method of pushing forward, so celebrate for the day and off we go.
I've been relishing weekend time since. More so now than in a long while. I think that has a lot to do with Ellie being off treatment in the spring for the first time in almost three years. Saturdays and Sundays have no more shackles on them, even if they were the kind you could slip your hands out of the last few months of chemo. I go home on Fridays thinking about what is possible and what things could be sought after for the next 48-60 hours, you know with a little Pharrell Williams slapping in the car (please excuse my undeniable drop to student vernacular from time to time....if you can't understand 'em, might as well join 'em, right?!). It's a good feeling. The kids have so many activities now from riding horses to going to countless birthday parties to riding scooters to making chocolate chip pancakes (!!!). They will never miss a beat and rightfully so. All this and I still feel as though the peace I wish for is not as present as it should be.
The cancer world is the cancer world. There is no comparison. None. I catch these phrases every now and again in the hallways or in my search for what's going on in the world when I can sit down and tune in. There are a ton of misuses for the word "cancer". I even caught myself this year in the lockeroom describing how an unwanted trait brought in from the outside world to a team coming together could prove to be a "cancer". What? WHAT the hell am I talking about? The analogy is gross, inappropriate, and cannot be used. It is difficult to hear it put into play from outsiders trying to make an understandable point, but I'm very sorry....there is no way to use it outside of the world that created it. Cancer is something that you can do everything right with, everything and anything. You can go to the far depths of your power to enlist every weapon you have to combat it...and you still have zero control on whether it comes back or even takes someone from you. That's the difference between a stupid analogy and the real deal. Control. By the way, while I am on the subject of poorly worded phrases, I'll throw out there the ridiculous line of "A watched pot never boils" as well. Baloney, it doesn't. Go retake high school chemistry and then go to your room to think about what you've just said. I know that's unrelated completely to this paragraph, but if we're going to have these things in the english language, let's have some forethought. Nothing is "like" cancer except cancer. I wish I wasn't so acutely aware of that and I probably shouldn't let outside comments bug me...but they do.
I wonder if we are in the interim right now and that thought is scary if I let get to that point. That could be applied to a number of things I guess if you were to sit around waiting for the next tragedy to unfold. It doesn't consume me but it enters my mind from time to time. Am I making the most of the time right now so that I don't look back in a few years wishing I had done more? It is a tough question because the treadmill grind doesn't much care. Bills need to be paid, school events need to be had, the long off dream of being able to purchase a home in the Bay Area has to be pursued (despite inches at a time) and we have to find time to rest and recuperate or else I will be mailing the electric bill to the library....and that just won't work. The interim represents a unique look at where we are at without the immediate pain of direct cancer contact. We are trying to move on and we are succeeding for now. I say "for now" because "for now" is all that really matters to me, especially on a day that has always been a fun one for most of not all of 38 years (I would have to admit I do not recall the joyous times of birthdays 0-5 very much but apparently they were thrilling).
Lately I've been wishing to find those quiet moments where things stand still. The special place where everything makes sense for a few moments. It doesn't have to be me by myself, but it has to present itself as something of a deep breath, perhaps a little sigh of relief, but more of a lung filled swallow of air that exhales completely without worry. I think about being up in the Sierras on a backpacking trip when we first came upon the Cotton Wood Lakes area, I have vivid memories of sitting next to Polly on our honeymoon on the shores of Kauai in white lawn chairs and not moving for almost two full days or our trek across country to Carolina where en route we descended out of Yellowstone park and saw EXACTLY why they call Wyoming Big Sky country. Sometimes I'm on my grandfather's boat sitting on the bow as we embark beyond the jedi ton escape to Catalina....the salt water filled air an incredible taste of what home will always be for me...and the incredible feeling of a Saturday dive being under the ocean's surface looking at life in complete silence. The day I came home from high school in March of my senior year, no one else home yet, and on the corner of dining room table was an envelope with my Bruin acceptance letter which I relished in complete silence before picking up the phone to call my dad. Or the overnight in Banner Elk in the Appalachian Mountains (yes, that's a town...please know your geography with this blog) when Polly and I were engaged, enjoyed our time to the fullest and then had to sit next to a man at brunch the next day who was dressed in yellow head to toe to cheer on his beloved Tenneesee Chatanooga football team that day (yellow socks and shoes, brutha?!) but found out what the weekend meant for us and wished us well. And of course the nights were Polly and I sat feeding the twins at 1:30am half awake, trying to laugh at Jimmy Fallon's jokes on Late-Late-Late night when the only worries were burping, diaper changes, and trying to function on 4 hours of sleep. These times were a lot of beginnings for the most part. I'd like to wish for more of those.
I am reading a book recommended to me by my Aunt (Thankyou!) written by John Green called "The Fault in Our Stars". I have not finished it yet, so please do not tell me how it ends. Actually I think I already know the ending will not be pleasant but the perspective of a terminally ill 17 year old girl is helping push this spring time lull to a better place for me....even if it just means I have a better Tuesday following this birthday monday when its back to the treadmill. She speaks in real terms and calls it how it is when faced with slowly succombing to cancer. The author shares that the only thing worse than having cancer is being a parent with sick child. Interesting, I don't know if I fully believe that but it was quite something to see someone else say it. Oh how I've wished this was my battle and not Ellie's. Anyways, the main character, Miss Hazel Grace, embarks on a trip through a Make-A-Wish esque organization to seek answers on what happened to several characters in her favorite book. Hand in hand she goes with a fellow cancer warrior who she undoubtedly falls in love with. It is a heroic tragedy from the start and her line of "The World just isn't a wish granting factory" rings very true for me today. Maybe getting what we really want is not the goal. Recognition of moments that make time stand still regardless of the overlying factors could be the heart of the wish. A wish that can never truly be granted but will at least let you keep wishing....and hoping. Cancer has to be one of the only things that makes me hate saying that and love saying that at the same time. Hazel says to a non-cancer friend of hers at one point who keeps commenting on how strong she is, "I'll give you all my strength, if I can have your permanent remission". Brutally honest truth when looking at how those two worlds intersect sometimes and though astonished she would lay that on her friend in broad daylight....cannot blame her in the least.
I had dinner with just Ellie a couple weeks ago. Timmy had a follow up appointment with his eye surgeon (he is doing awesome, by the way, on that front....better than we could have ever hoped for) in the city which Polly took him to. I picked up Ellie from school and decided we needed a Daddy-daughter dinner at a nearby restaurant. So, we got a two person booth facing eachother and she got right to coloring the placemat, her strokes now completely within the lines carefully laid out so that each color can be seen in its proper segment on the page. Her attention to detail was not so mesmerizing that she would look up and pose a few questions my way. "Daddy, what will you have for dinner?" I had thought about telling her that I wanted seared Ahi with garlic mashed potatoes and seasoned greens that oozed with a sauce underneath the fish....but I settled for "I'm gonna have Pasta". "ME TOO!" she said with as much energy as she has when she wakes up gleefully at 6am and starts prodding timmy to wake up or else she threatens to start singing. And we continued our banter back and forth about how her day at school was, with her head tossing side to side and her now near neck length pig tails never ceasing movement. She was looking forward to getting to go swimming again now that her leg was almost healed and she wasn't sure if Timmy could go with her because his eyes were still red, but she would ask Mommy. "Daddy, I want Milk" I like when she asks for things that I can give to her. From start to finish, I think we were in the restaurant for all of about 24 and half minutes. But I can tell you time stood still.
Even if my ultimate wish for her (or for Polly, Timmy, and I) has not been granted yet, I am committed to doing the dance party/treadmill to get to Tuesday so that I can see again if it might be. If its not, I'll get back to seeking the moments in the interim. The Hazel Graces have a deadline....right now (and I mean RIGHT NOW)....we, us, Ellie do not. I have to remember that. So, #38 is another beginning for the four of us, right?! One with limitless potential. I wish with everything I have and all that T&E will become for that to be true.
Thursday, March 20, 2014
Blessed - Day 998
It is Polly here, we haven't posted lately because we have been busy and things have been going well. For those of you we don't see on a regular basis and are wondering what we've been up to, I thought I would write a quick update.
We are 4 1/2 months from the end of Ellie's last chemotherapy and her counts are looking GREAT! We spent a long day on Monday at the hospital doing several different checkups and the results came back that her ANC is in the 5000 range, which is fantastic. She had been sick for labs in February and everything had dipped down so we were happy and relieved with these labs. She also completed her ECHO on Monday and everything is looking good with her heart too. Due to her age at diagnosis and the amount of one chemotherapy drug she had to take because she was diagnosed high risk, they have decided to do her ECHO'S every two years instead of five, but things are looking good.
As some of you know, back at the end of January she fractured the top of her foot. She is quite embarrassed when people ask her how it happened...She and Timmy thought it would be a good idea to hold hands and see how many of our stairs they could jump down together, what a surprise that didn't end well. She had a second check up with the podiatrist this past Monday, and they said that while it is healing, she still needs to stay in her "Wee Walker" (walking boot like Daddy had last year) for another 3 weeks.
We've also been busy with Timmy these past few weeks. Last Friday he had his leg muscle harvested and his slings which were placed in his eyes at 6 months of age, replaced with slings made of his leg muscle...science is pretty amazing!! He is doing very well. It took about 24 hours, and then we had our happy little boy back.
Finally the last week of February and first week of March, Jeff and his soccer team kept us busy as they proceeded through the playoffs to win the schools first CCS title for soccer. Timmy and Ellie were ecstatic that Daddy won a trophy and that they got to go on the field with him.
As we move towards the Spring, we are looking forward to some downtime with Jeff, as he now has his afternoons free, our trip to Camp Okizu for Memorial Day Weekend, and Ellie's Make A Wish trip to Disneyworld in July. We are so incredibly blessed to have Ellie and Timmy doing so well right now. We try to enjoy every day to the fullest. We ask that you keep Justin Solomon, a fellow cancer warrior and friend who is awaiting a kidney transplant in your prayers.
Polly
We are 4 1/2 months from the end of Ellie's last chemotherapy and her counts are looking GREAT! We spent a long day on Monday at the hospital doing several different checkups and the results came back that her ANC is in the 5000 range, which is fantastic. She had been sick for labs in February and everything had dipped down so we were happy and relieved with these labs. She also completed her ECHO on Monday and everything is looking good with her heart too. Due to her age at diagnosis and the amount of one chemotherapy drug she had to take because she was diagnosed high risk, they have decided to do her ECHO'S every two years instead of five, but things are looking good.
As some of you know, back at the end of January she fractured the top of her foot. She is quite embarrassed when people ask her how it happened...She and Timmy thought it would be a good idea to hold hands and see how many of our stairs they could jump down together, what a surprise that didn't end well. She had a second check up with the podiatrist this past Monday, and they said that while it is healing, she still needs to stay in her "Wee Walker" (walking boot like Daddy had last year) for another 3 weeks.
We've also been busy with Timmy these past few weeks. Last Friday he had his leg muscle harvested and his slings which were placed in his eyes at 6 months of age, replaced with slings made of his leg muscle...science is pretty amazing!! He is doing very well. It took about 24 hours, and then we had our happy little boy back.
Finally the last week of February and first week of March, Jeff and his soccer team kept us busy as they proceeded through the playoffs to win the schools first CCS title for soccer. Timmy and Ellie were ecstatic that Daddy won a trophy and that they got to go on the field with him.
As we move towards the Spring, we are looking forward to some downtime with Jeff, as he now has his afternoons free, our trip to Camp Okizu for Memorial Day Weekend, and Ellie's Make A Wish trip to Disneyworld in July. We are so incredibly blessed to have Ellie and Timmy doing so well right now. We try to enjoy every day to the fullest. We ask that you keep Justin Solomon, a fellow cancer warrior and friend who is awaiting a kidney transplant in your prayers.
Polly
Sunday, January 26, 2014
Stay - Day 945
You would probably find this a bit strange, but I cannot write in this thing on any given night. Even if I tried, the words just don't flow until there's been enough stuff pent up for a while that a little relief becomes inevitably in the works. Even tonight, I should be grading papers or piecing together some film for the soccer team to study ahead of our next game later this week. But, tonight felt like Blog night. And when it feels like Blog night, there isn't much of a choice but to settle in and let it flow. My head is often like this constant virtual concert series many hours of the day. It can be both obtrusive and peacefully thought provoking but one thing I've learned not to ignore is an increase in volume usually means it is time to release a bit. So, this, as always, is an attempt to make sense of it all.
Off treatment life is obviously much easier to deal with. We do normal things now everyday, not just some days, and keep a schedule busier than before the stork rolled in with a couple of kids at the doorstep a few years back. It's refreshing, it's invigorating, it's terrifying and it's amazingly wonderful. Today I woke up to the sound of both kids gleefully playing together in their room (until the clock turns the magical color of Green signifying they can officially vacate their beds), sat with both in church while they squirmed through the Homily, hung out with both on the monkey bars, cooked them up a homemade dinner, and then got unsolicited offers for kisses before bed. Not a bad Sunday. Maybe a perfect day. And as they are now both sleeping soundly for the night with time slowly slipping away from the weekend, I am wondering if we can keep this pattern going. Whatever is happening here, I'd like it to stay a while.
This new found freedom is a tug of war between wanting to leave the last few years behind as far as possible and understanding you will have this "worry" to live with for many years to come. In those first few weeks after diagnosis when the hospital days were long, thick, and draining....the hope was that she would just live. It was a bit of a naive thought looking back now but let's face it, the first words we all think of when cancer enters the building is...."is she going to die?". You distance yourself a significant amount from the acuteness of that train of thought because there is a process with thousands of steps to take before having to ever be faced with that sort of ultimatum (if ever at all). I remember writing in a post during that initial time period about wanting to see her walk into her first day of Kindergarten as a dream we were aspiring to make a reality. Now today, two and a half years later, I find myself touring potential kindergartens for her to attend seven short months from now. We are discussing merits of resources both kids may have with each school as they progress through their early years, we are exploring innovative learning styles to expose them to, and we are talking about where they will be able to grow further in a community that embraces where they have come from....and who they are soon to become. We are NOT talking about survival anymore. We are not trying to just get through the night so that we can seek more advice from the doc in the morning. We are living right NOW with an opportunity to leave our world of the last few years behind.
But I am not so sure how far I want to go with this. How horrible is that to say? Right now is good. Right now is HEAVEN. I want to stay here. I want to STAY here. Why do we have to keep transitioning in time if right now works. She is healthy, we are able to make fantastic short terms plans, we can do anything we want TODAY, and we are just doing what anyone else wants to do. We're living. Let's stay here.
Don't get me wrong, I am not trying to deny progress forward. What I am saying is that the future in my eyes sometimes represents a bit of an unknown that could remove all of these good things, occasions for celebrations, and opportunities for sitting back in your chair to stare at the sunset and letting your eyes marvel at the simplicity of what good times really entail. We are more than just peering over what seemed like an insurmountable wall a few years back. We are standing tall and basking in the sun from the other side. I just don't know if it is something to embrace fully and completely....or is it teasing us like the dollar bill on a fish wire in the plaza connected to someone who can control the situation with a simple "Yank".
Last week, Ellie had her two month of off-treatment check up and blood test. Everything came back great. Her white blood cell count is climbing and her ANC value (immune system rating) was over halfway back to normal levels. Oh my goodness, she has an near fully capable immune system again! It was a quick appointment, and I'd be lying if I didn't think of the worst for a few seconds, but the day felt routine. We were free for another month. Now back to our regular lives, yes?!? No, of course not....it is never that easy.
Later than night I got an email from a friend in Los Angeles who I connected with a few weeks into our induction therapy after diagnosis in July of 2011. We were introduced to each other because his daughter had been diagnosed with the exact same form of A.L.L as Ellie just 6 months prior. He and I began to exchange emails over the next several months. With the treatment protocols being near identical, I had someone to ask questions to about various phases of treatment from a dad's perspective. As we were entering a new phase of chemo, he was typically finishing it. Everything was always on the up and up. The hopeful voice is always the welcome voice when it comes to the day to day in our world. I've said this before....you find a very strong connection with those who are walking beside you in this battle. Anyways, his daughter had finished treatment early last spring (2013) and I had not heard from him in a while. Ironic he would email me the same day as Ellie's monthly blood test, but so be it. His daughter was classified from the beginning as Standard Risk. Ellie was deemed High Risk. The two usually differ by white blood cell count on diagnosis. The survival percentages favor the standard risk slightly more but really the only difference is the type and amounts of chemo you get. His email on this day was to tell me that after only one year, almost to the day, his daughter had relapsed. He was now settling into his new home in Memphis at St Jude in attempt to get the best relapse therapy possible. I near dropped my phone from which I was reading the email from. How could this be???? How could this happen???? Why Why Why???? DAMMIT!!!!!!!
The next day I was at school teaching and trying to concentrate....but amongst the daily grind of lesson plans, lab prep, purchase order signatures, and soccer practice....my head was abuzz. In some cases the music was deafening. I could not stop thinking about this poor little girl. This was someone else's Ellie who had been through the identical set of procedures we had and experienced a full year of treatment before being thrust back into survival mode. I cannot tell you why a particular song bounces between my brain cells because it just happens....even if it isn't a perfect fit for what the song was originally intended for. On this day it was Rihanna's "Stay". I don't think the original intent of the song was meant for what I was applying it to, but the tone of the singer emits an emotion that has a raw sound to it. There is a vibrato in her voice that evokes pain yet demands we find a way to salvage today. Why was this in my head? I have not a clue. I listen to the radio about 10 minutes to work and 10 more on the way home. Things heard can get filed away unknowingly for use at a later time. Two months from now, it'll be a different song, I'm sure, but I do know that if it helps me sort through the chaos of this emotional cancer world roller coaster that just goes on and on for years...then it serves a good purpose.
We are teased with what a normal life feels like. Where the sky may be the limit again after so much grief. We do this dance off treatment in a careful manner but still with the knowledge that there really is zero control we possess over the situation. The rug may be ripped out from under us at any place and at any moment. It can be a thousand pound weight somedays. And here I was fortunate enough to be at work after a clear 2-month Ellie blood test, but with one of teammates now forced to turn back the clock and begin again the three year gauntlet of chemotherapy with an added step of a bone marrow transplant (which carries a 3 month hospital stay with it). I am amazed at how strong and hopeful he was in his email and how fragile I became for a day. It can all change so fast. So very fast. Forgive me for wanting to stay in the moment a little while longer as I try to get comfortable with this proverbial weight belt of sorts. I wanted to share a post from a fellow Mom of a child with A.L.L. who summed up a night we all who have walked this cancer path with our kids have had on this journey. It is certainly less intense now being off treatment, but the emotional toll is still ever present.
Though staying in one place for quite sometime is comforting, its also impossible. I know this. Call us a couple of parents that want to keep our kids at the age of five forever (minus the whining for silly things when we are in stores or the going "limp" when we need them to stand up and put their clothes on....I could really do without that. Seriously.). This rationalization of how to proceed cautiously toward the future while respecting the "struggle" with where tomorrow may take us is something there is no preparation for. As an educator, I respect more than anything a colleague or mentor that knows and preaches daily that he or she will always have more to learn that what they can possibly teach to others. The 21st century can throw all the technology and innovative verbiage it wants at the learning process, but these are just minor tools. I am convinced progress only occurs when we can open our minds to walking out from where we stay stagnant and embrace the good news that frees our thoughts from burdensome worry. I am simply at the mercy of what is supposed to happen next....to which, of course, I will never have a clue.
I am not there. I hope to be someday. Until then, the thought of relapse and all that it brings with it is ever present on many a occasion. Polly and I have great friends and family around us all the time...so we are never far from support. That is a pure god send, let me tell you. I watch Ellie swinging on the monkey bars and smiling bigger every time she decides to go one bar further. She has an intensely eager curiosity to life that is undoubtedly linked to her instinctual ability to fight as she has for the last 945 days. I sometimes will painfully flashback to Day 4 when we were inpatient for the very first time (and I did upon hearing of my friend's daughter's relapse) when two nurses carefully took Ellie from our arms and pinned her to a chair. While each held an arm and a leg, a third stood over her to reassure her everything would be OK. Two additional nurses (bless them for the job they had to do) then came in with a needle each the size of my finger and to jab into her thighs a dose of PEG-Aspariginaise....one of the early chemos she received to rid her of the 96% cancer cells in her blood. It is what it is with this wretched disease.
Those flash backs are few and far between these days as we carry on to this new normal, but I am actively looking for a way to be more at peace in the off treatment life. Even if the "now" only lasts a day's worth of hours, I want to mentally stay here with firm resolve in that brief time span...and enjoy every last second. The coaching world I know so well demands I stay one step ahead of the opposition, I anticipate a player's state of being before he enters the pitch, I recognize limitations, and I fully embrace those things the team does exceptionally well. If the chips are in the right place, the result should take care of itself. So perhaps this brief day of freaking out I had, with news of a friend's relapse, was not so much about wanting to stay put and ignore what the future may bring.....but rather it was a reminder to the Stay the course.
Yesterday, my team put a ball in the net with 3 minutes to play in a game that looked to be fit for a frustrating draw. It was a little unexpected magic that won the game. (Soccer is pretty awesome that way) There is absolutely nothing I can do from the sideline to directly change things. I'm just there to cheerlead, hope for a positive outcome, and have a little Faith that these worries that seem so profound in a given moment cannot overshadow all of the work we have done to get to this point. Despite the lack of ultimate control, we are in a new normal now. We've arrived. We'e here NOW so lets not get caught up in what may be or what could be. The magical moments will show themselves when the time is right. In terms of moving forward, We will never.....ever....give up. With God's help, with all the incredible people I see everyday, with my family, and with Ellie's hand in mine, we're here to stay.
Thanks for letting me rant a bit on a Sunday. This is one of our favorite pictures of Ellie at her Gratitude Party, marking the end of treatment last November (2013).
Please pray tonight are for our friends in Memphis at St Jude. Thankyou.
Off treatment life is obviously much easier to deal with. We do normal things now everyday, not just some days, and keep a schedule busier than before the stork rolled in with a couple of kids at the doorstep a few years back. It's refreshing, it's invigorating, it's terrifying and it's amazingly wonderful. Today I woke up to the sound of both kids gleefully playing together in their room (until the clock turns the magical color of Green signifying they can officially vacate their beds), sat with both in church while they squirmed through the Homily, hung out with both on the monkey bars, cooked them up a homemade dinner, and then got unsolicited offers for kisses before bed. Not a bad Sunday. Maybe a perfect day. And as they are now both sleeping soundly for the night with time slowly slipping away from the weekend, I am wondering if we can keep this pattern going. Whatever is happening here, I'd like it to stay a while.
This new found freedom is a tug of war between wanting to leave the last few years behind as far as possible and understanding you will have this "worry" to live with for many years to come. In those first few weeks after diagnosis when the hospital days were long, thick, and draining....the hope was that she would just live. It was a bit of a naive thought looking back now but let's face it, the first words we all think of when cancer enters the building is...."is she going to die?". You distance yourself a significant amount from the acuteness of that train of thought because there is a process with thousands of steps to take before having to ever be faced with that sort of ultimatum (if ever at all). I remember writing in a post during that initial time period about wanting to see her walk into her first day of Kindergarten as a dream we were aspiring to make a reality. Now today, two and a half years later, I find myself touring potential kindergartens for her to attend seven short months from now. We are discussing merits of resources both kids may have with each school as they progress through their early years, we are exploring innovative learning styles to expose them to, and we are talking about where they will be able to grow further in a community that embraces where they have come from....and who they are soon to become. We are NOT talking about survival anymore. We are not trying to just get through the night so that we can seek more advice from the doc in the morning. We are living right NOW with an opportunity to leave our world of the last few years behind.
But I am not so sure how far I want to go with this. How horrible is that to say? Right now is good. Right now is HEAVEN. I want to stay here. I want to STAY here. Why do we have to keep transitioning in time if right now works. She is healthy, we are able to make fantastic short terms plans, we can do anything we want TODAY, and we are just doing what anyone else wants to do. We're living. Let's stay here.
Don't get me wrong, I am not trying to deny progress forward. What I am saying is that the future in my eyes sometimes represents a bit of an unknown that could remove all of these good things, occasions for celebrations, and opportunities for sitting back in your chair to stare at the sunset and letting your eyes marvel at the simplicity of what good times really entail. We are more than just peering over what seemed like an insurmountable wall a few years back. We are standing tall and basking in the sun from the other side. I just don't know if it is something to embrace fully and completely....or is it teasing us like the dollar bill on a fish wire in the plaza connected to someone who can control the situation with a simple "Yank".
Last week, Ellie had her two month of off-treatment check up and blood test. Everything came back great. Her white blood cell count is climbing and her ANC value (immune system rating) was over halfway back to normal levels. Oh my goodness, she has an near fully capable immune system again! It was a quick appointment, and I'd be lying if I didn't think of the worst for a few seconds, but the day felt routine. We were free for another month. Now back to our regular lives, yes?!? No, of course not....it is never that easy.
Later than night I got an email from a friend in Los Angeles who I connected with a few weeks into our induction therapy after diagnosis in July of 2011. We were introduced to each other because his daughter had been diagnosed with the exact same form of A.L.L as Ellie just 6 months prior. He and I began to exchange emails over the next several months. With the treatment protocols being near identical, I had someone to ask questions to about various phases of treatment from a dad's perspective. As we were entering a new phase of chemo, he was typically finishing it. Everything was always on the up and up. The hopeful voice is always the welcome voice when it comes to the day to day in our world. I've said this before....you find a very strong connection with those who are walking beside you in this battle. Anyways, his daughter had finished treatment early last spring (2013) and I had not heard from him in a while. Ironic he would email me the same day as Ellie's monthly blood test, but so be it. His daughter was classified from the beginning as Standard Risk. Ellie was deemed High Risk. The two usually differ by white blood cell count on diagnosis. The survival percentages favor the standard risk slightly more but really the only difference is the type and amounts of chemo you get. His email on this day was to tell me that after only one year, almost to the day, his daughter had relapsed. He was now settling into his new home in Memphis at St Jude in attempt to get the best relapse therapy possible. I near dropped my phone from which I was reading the email from. How could this be???? How could this happen???? Why Why Why???? DAMMIT!!!!!!!
The next day I was at school teaching and trying to concentrate....but amongst the daily grind of lesson plans, lab prep, purchase order signatures, and soccer practice....my head was abuzz. In some cases the music was deafening. I could not stop thinking about this poor little girl. This was someone else's Ellie who had been through the identical set of procedures we had and experienced a full year of treatment before being thrust back into survival mode. I cannot tell you why a particular song bounces between my brain cells because it just happens....even if it isn't a perfect fit for what the song was originally intended for. On this day it was Rihanna's "Stay". I don't think the original intent of the song was meant for what I was applying it to, but the tone of the singer emits an emotion that has a raw sound to it. There is a vibrato in her voice that evokes pain yet demands we find a way to salvage today. Why was this in my head? I have not a clue. I listen to the radio about 10 minutes to work and 10 more on the way home. Things heard can get filed away unknowingly for use at a later time. Two months from now, it'll be a different song, I'm sure, but I do know that if it helps me sort through the chaos of this emotional cancer world roller coaster that just goes on and on for years...then it serves a good purpose.
We are teased with what a normal life feels like. Where the sky may be the limit again after so much grief. We do this dance off treatment in a careful manner but still with the knowledge that there really is zero control we possess over the situation. The rug may be ripped out from under us at any place and at any moment. It can be a thousand pound weight somedays. And here I was fortunate enough to be at work after a clear 2-month Ellie blood test, but with one of teammates now forced to turn back the clock and begin again the three year gauntlet of chemotherapy with an added step of a bone marrow transplant (which carries a 3 month hospital stay with it). I am amazed at how strong and hopeful he was in his email and how fragile I became for a day. It can all change so fast. So very fast. Forgive me for wanting to stay in the moment a little while longer as I try to get comfortable with this proverbial weight belt of sorts. I wanted to share a post from a fellow Mom of a child with A.L.L. who summed up a night we all who have walked this cancer path with our kids have had on this journey. It is certainly less intense now being off treatment, but the emotional toll is still ever present.
It is one of those nights
where you can't hold back the tears
for no good reason.
So, we do what we do best
hide and cry for a quick minute or two,
wipe the tears away,
go to your kids bedrooms to read "Tickle Monster"
with a smile and a laugh,
kiss them good night,
then walk with away with the same tears
you had turned off for those few moments with your kids
You all know what I mean...
Though staying in one place for quite sometime is comforting, its also impossible. I know this. Call us a couple of parents that want to keep our kids at the age of five forever (minus the whining for silly things when we are in stores or the going "limp" when we need them to stand up and put their clothes on....I could really do without that. Seriously.). This rationalization of how to proceed cautiously toward the future while respecting the "struggle" with where tomorrow may take us is something there is no preparation for. As an educator, I respect more than anything a colleague or mentor that knows and preaches daily that he or she will always have more to learn that what they can possibly teach to others. The 21st century can throw all the technology and innovative verbiage it wants at the learning process, but these are just minor tools. I am convinced progress only occurs when we can open our minds to walking out from where we stay stagnant and embrace the good news that frees our thoughts from burdensome worry. I am simply at the mercy of what is supposed to happen next....to which, of course, I will never have a clue.
I am not there. I hope to be someday. Until then, the thought of relapse and all that it brings with it is ever present on many a occasion. Polly and I have great friends and family around us all the time...so we are never far from support. That is a pure god send, let me tell you. I watch Ellie swinging on the monkey bars and smiling bigger every time she decides to go one bar further. She has an intensely eager curiosity to life that is undoubtedly linked to her instinctual ability to fight as she has for the last 945 days. I sometimes will painfully flashback to Day 4 when we were inpatient for the very first time (and I did upon hearing of my friend's daughter's relapse) when two nurses carefully took Ellie from our arms and pinned her to a chair. While each held an arm and a leg, a third stood over her to reassure her everything would be OK. Two additional nurses (bless them for the job they had to do) then came in with a needle each the size of my finger and to jab into her thighs a dose of PEG-Aspariginaise....one of the early chemos she received to rid her of the 96% cancer cells in her blood. It is what it is with this wretched disease.
Those flash backs are few and far between these days as we carry on to this new normal, but I am actively looking for a way to be more at peace in the off treatment life. Even if the "now" only lasts a day's worth of hours, I want to mentally stay here with firm resolve in that brief time span...and enjoy every last second. The coaching world I know so well demands I stay one step ahead of the opposition, I anticipate a player's state of being before he enters the pitch, I recognize limitations, and I fully embrace those things the team does exceptionally well. If the chips are in the right place, the result should take care of itself. So perhaps this brief day of freaking out I had, with news of a friend's relapse, was not so much about wanting to stay put and ignore what the future may bring.....but rather it was a reminder to the Stay the course.
Yesterday, my team put a ball in the net with 3 minutes to play in a game that looked to be fit for a frustrating draw. It was a little unexpected magic that won the game. (Soccer is pretty awesome that way) There is absolutely nothing I can do from the sideline to directly change things. I'm just there to cheerlead, hope for a positive outcome, and have a little Faith that these worries that seem so profound in a given moment cannot overshadow all of the work we have done to get to this point. Despite the lack of ultimate control, we are in a new normal now. We've arrived. We'e here NOW so lets not get caught up in what may be or what could be. The magical moments will show themselves when the time is right. In terms of moving forward, We will never.....ever....give up. With God's help, with all the incredible people I see everyday, with my family, and with Ellie's hand in mine, we're here to stay.
Thanks for letting me rant a bit on a Sunday. This is one of our favorite pictures of Ellie at her Gratitude Party, marking the end of treatment last November (2013).
Please pray tonight are for our friends in Memphis at St Jude. Thankyou.
Wednesday, December 18, 2013
Jimmy V - Day 905
If I haven't entitled one of my posts "Jimmy V" before, I'm not sure what has taken this long to do so. I refer to his words all the time and have somehow connected with his message years after he passed in a way that was not remotely fathomable when I stood in front of the TV in 1993 watching the ESPY awards. He had a captivating presence, even before that night, that was unmistakable. The guy could flat out coach. His words, his actions, his meticulous preparation, and his poise under pressure. It was motivation to move beyond just simple inspiration. Much has been written about his improbable run at the NCAA title in 1983 (Click HERE for one my old favorite articles) and you have to know the story to really grasp the foreshadowing for his life a short ten years later. NC State wasn't even supposed to be in the playoffs that year. It took an improbable run through the ACC tourney a week earlier just to qualify. Next up he comes 6pts behind to win in the final 30 seconds in his first round game by a single point, followed by knocking off a couple teams he had lost to handily in the regular season, and capped off with the unimaginable victory by slaying Goliath (Houston's "Phi Slamma Jamma"). He didn't quit and he didn't allow his players to quit. So infectious was his mood that those who witnessed it up close and personal (I have to admit, I was 7 at the time and not quite the sports follower, so this is research from my adult life) were given a belief that for a few weeks anything was possible. Jimmy V's never-say-die approach brought with it a relentless work ethic, a lion-type heart, and the ability to dream. Fast forward 10 years and he is standing at a podium, barely able to walk, and giving a speech to hundreds in the room (which would turn into millions in the years shortly thereafter) with Adenocarcinoma tumors (bone cancer) throughout his body still fighting with a presence as if his strength is near immortal.
Coach Valvano's establishment of the Jimmy V Foundation for Cancer research has now become one of the most recognized charities in the country in this particular sector of causes to support. And so, every year as it promised it would do from the day his speech was given in 1993, ESPN televises a college basketball doubleheader honoring the foundation's work and ensuring Jimmy's words live on. Always at the break, between games every year, they replay his speech...and Polly and I together haven't missed it now for four years, including tonight's replay, two and half years into Ellie's battle. Maybe you'd find it a bit of a humorous scene...the two of us frantically moving around the house (as we do most nights) with dinner dishes to do, laundry moving from place to place (does that ever end?), kids being bathed and readied for bed...and about 6:30 or so on this night (close to the same time every year) the speech comes on. We stop what we're doing, listen, and wipe a few tears away. The 'realness' of what this is never goes way. Ever. Maybe its about parental control, maybe its fatigue or post traumatic stress....I don't know. But you are sucked back into the core of what this feels like. And then you feel a kinship with the message of Hope, a small but but mighty token to keep as we snap back to the never ending nightly search of where Timmy left his glasses or Ellie her stuffed bunny she has to have in order to go to sleep.
This past week was Ellie's first post chemo checkup blood draw. With her port now being gone for a little over two weeks, she will get blood drawn the way the rest of us do through an arm poke. She handles this quite well so long as the nurse administering the poke knows what he/she is doing. Pediatric veins can be tricky, I know, but there are a select group of people we trust in that corner of LPCH and we try to stick to them.
I remember going out the door that morning to head to work thinking as sort of an after thought that this was Ellie's checkup day. Then in the car the unsettling thoughts kinda begin...."this is how its going to be". The wait for results is not as anxious as it likely will be for me in a few months. The closer we keep to a normal routine, the better. Since October 25th and of course her awesome Gratitude Party where so many people came to celebrate with us, life has been just....well...normal. Normal as in part of me is being distanced significantly from the harsh months of 2011 and early 2012. No one would even know by looking at her now that she had been sick. Not a clue. It's like I catch myself asking sometimes, "What the heck just happened the last couple years?" You want to be completely done. I mean done-done so we can forever move on. This sort of normalcy we are experiencing right now kinda teases you a bit with that. And then the checkup days will come. And we'll momentarily move to the edge of our seats. My perspiration rate will pick up and that small uncomfortable stomach knot will form while we are waiting, hoping, praying for hemoglobin numbers to be between 11-12 and a white blood cell count that is quietly and slowly rising from a its long standing suppressed state to somewhere in the 5-10K range without going over. For the Love of God....do NOT go over.
Her blood counts were good for checkup #1, which I think is quality peace of mind for another month. Somewhat anyhow. We are still navigating the transition back to normal medical decisions. She picked up yet another small cold over the weekend and as a good example, I sit here right now listening to her cough on the baby monitor while she tries to sleep in a slightly agitated state wondering myself what may be coming. Fever spike? Further congestion? Fluid in her lungs? How quickly do we act? I will tell myself to calm down....its probably just going to be a quick cold. It's a fear of having to jump back to "ready-alert" mode. Coming out of that after two and a half years was a really nice feeling. There was closure to at least part of this journey, so it is really hard right now to think about going back. There are a lot of little things that just don't make it possible to forget. So, every blood test will be a fork in the road for us for quite sometime.
One of the moms on our A.L.L. facebook group from the midwest posted a message over the weekend celebrating her son's complete two year remission. Good, right? Of course it is. These celebrations could be better than several birthdays and Christmases combined. Then I read a little further to uncover more of the story. Her son was diagnosed at 3, relapsed in his spine at 5, relapsed a second time in his marrow at 8, and had a bone marrow transplant at 9. The two year anniversary was for the latest remission since transplant. Incredible for his remission and as I read it....my thoughts immediately went to how incredible it is that her family has been at this in "ready-alert" mode for close to 9 years. Every child is different, this cannot be left out here, but being 6.5 years possibly behind them is...a little overwhelming. That's a really long time. All of these things that this family has had to put on hold or never do with their ambitious world for the better part of 9 years. It just isn't right. Many MANY prayers for this to be the little dude's complete remission that never ends. He very obviously follows Coach Valvano's Never-Say-Die attitude, whether he knows it or not.
Normalcy seems to always lead me to thinking bigger picture. Where are we going, what do want to accomplish, what's next and how do we prepare? It is a step away from the cancer world's day to day living style. I'm not sure how I feel about stepping out of the day to day world even if it seems to you that everything appears normal and on the up and up. The simplicity of living for today was possibly more fulfilling in the last two years than the several upon several years before it. How to keep such a mindset while still moving forward with larger plans and not feeling blindsided or seriously hampered by any potential return to an active cancer fighting world? That's the balance to be found.
I try and will always fall back on what I know. I know hard work. I know fighting until the clock hits zero. And if there was some divine reason that pushed me to watch a little TV the first week of March in 1993 to witness Jimmy V plant a seed that is his greatest legacy as a mentor and a coach, I am forever grateful. You gather so much information sometimes which you have no idea at the time when it will come in handy. This is where the mystery of Faith works its magic. Today, Polly and I laughed, thought, and cried. We made it beyond Tuesday. Now that's a day. "That's a HELLUVA Day". :) What if the improbable of someday walking this path completely "done-done" with the cancer struggle is possible? Or maybe it doesn't ever need to be "done-done" because we can find enough peace in moving day by day that bigger picture items will take care of themselves on their own. Wouldn't that be ideal?
I don't have any more answers than the next guy and I certainly fall victim to my own insecurities about things I cannot control in Ellie's world. But I do know even if I have to nervously sweat out a blood test month after month and try to explain to an outsider what it feels like, we will handle it somehow. Despite my blog ramblings, we can put it together to get into "ready-alert" at anytime, anywhere, without loss of purpose, resolve, or determination. Beyond work, sports, relationships, and all of the mindless drama in between, I learned long ago before I knew its full relevance...Don't give up, Don't Ever Give up. Thank you, Coach V. We're gonna make you proud.
"We are starting the Jimmy V Foundation for Cancer Research. And its motto is 'Don’t give up, don’t ever give up.' That’s what I’m going to try to do every minute that I have left. I will thank God for the day and the moment I have. If you see me, smile and give me a hug. That’s important to me too. But try if you can to support, whether it’s AIDS or the cancer foundation, so that someone else might survive, might prosper and might actually be cured of this dreaded disease...I know, I gotta go, I gotta go, and I got one last thing and I said it before, and I want to say it again. Cancer can take away all my physical abilities. It cannot touch my mind, it cannot touch my heart and it cannot touch my soul. And those three things are going to carry on forever."
Jim Valvano 1946-1993
(Full Speech Link - Click Here)
P.S. For my Varsity boys I am privileged to coach right now in my 16th high school soccer season, "Day by Day, We can't be beat". Thanks fellas...I needed that this week.
Subscribe to:
Posts (Atom)