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.
