March 11, 2016 - She certainly knows how to play the game

I was explaining to her about Oliver’s (my cat) 37 lives. His diabetes, the lymphoma, the urinary calcifications, the eye ulcers, and then discussing how no matter what he gets, he keeps bouncing back. She turned and looked me in the eye and said casually with a chuckle in the undertone “he sounds exactly like you”.  

I guess there are worse things to be compared to than your cat whom you adore. There are subtle differences in that I don’t have hair between my toes, nor do I often (for no reason at all as proven by his recent ophthalmology appointment) walk around the house with one eye closed. I do however, like Oliver, remain to be the enigma that I thought I was (now confirmed by Lung Guru yesterday) and like him keep trying to find a way to bounce back, preferably in addition with some evidence of grace and dignity. Some days I would settle for either or as both seems to be asking for too much. Lung Guru agreed that she too is baffled that my asthma testing results were negative, and now she doesn’t know what to think. We landed on my tracking my symptoms more carefully, if they worsen let her know, exercise as much as possible to stress the lung, and repeat the lung tests in six months to see if there is any change.  I told her I think a trip to Aruba would fix it all. She told me to try it, and if it worked, she would write me a prescription for quarterly visits. My kind of guru! I’m delighted, even though baffled, in that this is not the diagnosis I feared up front. I don’t know what is what per se, but I know what it is not. And sometimes that is the only “win” you need to keep plunging forward.

And speaking of winning, I’ve been thinking lately about diagnoses (fibrosis, or breast cancer, or lymphoma, or anything else. Pick your dilemma). I live in malignancy’s game day in and day out in my job so it’s kind of always there in my mindset. I see kiddos fight for their life on a daily basis. And trust me,  you never get immune to its impact. I’ve recently formulated that finding yourself in the middle of a potentially fatal diagnosis is similar to finding yourself in a game of chess. There is a board in front of you. The diagnosis is on one side. Myself (the patient) is on the other. A clock is ticking away in between us awaiting the next move. Each of you are out to win. Each of you have 100+ directions you can go. You can talk to your coaches behind you (the physician on one side, the cancer cells on the other) but you can’t talk to your opponent. You know someone is sitting across the board from you but you have no idea what they are planning nor what step they will take next. You spend every waking minute of the game trying to outsmart the other while doing everything you can to protect your queen (for you, that is your life; for the diagnosis, it’s the starter cell). 

The diagnosis starts the play. He inserts his pawn one step forward and hits the clock. I see the game is now in play, and I strategically shift my pawn forward to start my traverse across the board. I’m confident early in the game that not only can I win, but I will win. Confidence comes early, but you have no idea how many plays that will last. On we go, play after play…the rook, bishop, king, pawn. You never know what piece will move next and your only goal is to stay in play. It becomes mad in its pace as you stare at the board in anticipation of his next move and with that move your confidence waivers. One move of success and you build it back up. One move of distress and anxiety heightens as pieces slowly get lifted from the board. As your opponent (cancer cells) starts collecting pieces (my hair, my immune system, my energy), I desperately try to retaliate in a logical yet triumphant pace (chemotherapy, radiation, immune modulators); my confidence being determined by each winning or losing play and by how many pieces are still left on the board. The game can be drawn out as each player takes its time advancing across the board, or it can be a game of rapid pace with pieces flying off the board with each passing second.  And here’s the double edge sword of diagnosis: with two pieces left on the board you may still win the game; with six pieces still left on the board you may lose it all. You simply don’t know the outcome until you find yourself there.

With both chess and a potentially fatal diagnosis, you never know when you will be invited to a new game. You know not your opponent until he arrives. And once there you spend the rest of the game oblivious to the opponent’s plan of attack. You only know the game clock is ticking and only one queen (diagnosis or patient) will prevail in the end. And until the very last move, you don’t know whose that will be. Here’s the other kicker. There is no amount of affluence, or brilliance, or luck that will keep you from being invited to the game.  And once at the board, none of those attributes will guarantee you a triumph or a loss. Malignancy particularly knows no social boundaries. You have a millionaire sitting next to a homeless man in the waiting room. Malignancy couldn’t care less the color or the gender of its new home.  The infusion room is one place on earth where racism doesn’t exist, and unapologetically no one is off limits to its invitation to the game. It’s the only equal opportunity employer where anyone can fall prey to the chess board. Most of the time there is absolutely no rhyme or reason (from our point of view anyway) as to who survives and who doesn’t.
After watching person after person receive an invite to the game, and after having played a game or two myself, I’m becoming more aware that I should care more about how I play the game (than whether I win or lose in the end) because that is the one thing in my control. Sure I want to do everything I can to try and win, but if you really get down to it, I’m not so sure it’s the end result I should really be focused on. Let’s face it, if we win, it will be celebrated for a few weeks or months and then that story will slip in with all the rest of the stories of our lives. There will come a point where people forget we once kicked cancer in the butt. Life moves forward and new struggles and triumphs fill in the seconds of the clock. If we lose, people will mourn us for some set amount of time, and then we simply become someone they used to know and love. However, HOW we play the diagnosis game can be a life changer not only for us as individuals but for those going through life beside us.  For I think in HOW we play the game we actually have the ability to “win” them all, despite the final outcome. I often see the mantra “People won’t remember what words you said, but will always remember how you made them feel.” I think this is something similar. People won’t remember if we won or lost, but most likely they will remember how we played the game.  Think about it.  Look at the people in your life facing dilemma. Isn’t it in the people approaching dilemma with positivity and grace that leave you feeling full? Don’t you leave their presence thinking how much richer your life is for knowing them? Don’t you hunger to be around people who face life with this spirit? When have you ever craved negativity and spite?

So this is where I am these after having experiences these crazy few months (that thankfully appear to have a positive outcome). Am I going to be graceful, uplifting, kind and Christ-like in my play? Or am I going to be fearful, negative, and “bitchy” in these diagnosis games/life situations I sit down to. It’s not an all or none, but rather a trend of how we will view the event, how we navigate it, and then in return how we will be remembered. The outcome will be what it will be, but we have choice in how we will play.  No doubt we will have our moments where fear or anger or despair bubble to the surface, but I fully believe we can as an overarching trend embrace the fullness and richness of life that can come in diagnosis. When your days are numbered or most certainly unknown, embracing the blessings in each individual day is where the win lies. This is where we can choose our outcome. Not the life or the death, but the richness that can be found in route to both.

During her last appointment with me for her diagnosis, I asked her how she was feeling. She said “Spring is coming! How could I not be good?” Now THAT is how you play the game. Oliver, you are a great comparison, but oh, for me to one day reach this, this would be so much more. 



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March 4, 2016 - Horrible in burlap

It’s March! Well, of course it is, Sally. But March is very special, because it means I made it through February and making it through February means I made it through my next pulmonary appointment. Two, in fact. I did so good at the first one, it won me a second one. And still I know….very little. Or maybe I know a lot but have no idea what it means.

We threw on the ole “climbing shoes” and took to the stairs! Well, we did this after donning on a spiffy super thick and super wide velvety red head band (I know you are jealous), an electrode glued to my forehead under the head band all of which was connect by two cables to a monitor which Lung Guru carried while walking beside me. We were a hoot to say the least. Down the halls we went, up the halls we went, down the stairs, up the stairs, down the halls, up the halls, down the stairs, up the stairs, over and over while recording my oxygen saturations. I was a sweaty mess with hair puffed up on the top of my head when all was said and done. Either my head was too big for the headband, or my hair too silky (let’s go with that one) because about 3 or 4 times the velvety thick  headband about shot off the top of my head, each time taking my hair higher and higher. At one point during our walk (in the hallways where I work!), one little girl of about six years at best walked by and looked at me as if she had seen a lady with 3 heads.  Then she smiled and giggled when I finally gave her a goofy look. I couldn’t resist. I knew I looked like a hot mess, and I knew she was trying to figure out why I had cables coming out of my head. After the little girl, I only ran into 4 coworkers, who don’t even work in that building, while sporting this fabulous straight off of a Richard Simmons video look. Now how does that always happen to me?! I packed up my embarrassment and threw it into my stride hurrying as quickly as I could to get back to the clinic office.

We don’t know if I passed or failed. We decided that I passed in that my oxygen didn’t drop as low as last time (89%), but failed in that I still dropped to 94%. Quite honestly, we have no idea what to make of it. 94 is better than 89. And now it’s just a number without a cause. My CT just doesn’t look significant enough to give me these symptoms. And 94% isn’t really all that worrisome given that it wasn’t 89%. There is fibrosis, but it is not impressive fibrosis. My heart works perfect.  Also not a reason to give me these problems. So we decided to chalk it up to maybe asthma…until appointment number two, where I had a 60 minute asthma challenge….and passed with flying colors. What???? I could not have been more surprised. I would have bet the bank that not only did I have asthma, but I had worsening asthma compared to a year ago. Good thing I didn’t bet the bank. Good thing because I would look horrible in burlap.

So this is where we will most likely land ….my chest has been radiated far too much. My chest has been operated on far too much. My chest wall has simply decided to be less expandable than it once has been. Less expandable = less lung volume = what we are seeing on the pulmonary function tests = periodic lung symptoms = I am simply just not going to worry about it anymore. All I really needed to know was do I have fibrosis? Yes. Is it the progressive kind? No.  Do I have asthma as I have always been told. Doesn’t appear so. (Though I still have asthma symptoms in exercise, cold weather, and a respiratory illness). Are my lungs just tired? Yes. Does it matter? Who knows? I simply think I am going to be done with this lung workup and if my symptoms progress, start back over then.  I say all of this having not yet spoken to Lung Guru after my asthma test (the respiratory therapist gave me the news), nor do I have the official read on that test, but I feel sure this is where she will land too. She said we would chat this week once she had a chance to look at the most recent test. I’m thinking Lung Guru has to think I am off my rocker. Maybe the little girl in the hallways pegged me right all along. I’m a lady with three heads. I’m an enigma. But I’m still lovable right?

It’s a good appointment. It’s puzzling. But it’s good. You are up to date.




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