You're not burnt out....you have cancer

Well shit... A year had gone by and I had been working my butt off to make money, pad my savings, save for retirement and whatever else we do because we are supposed to. I was fighting to keep a job that I love, knowing if I just stayed the course it would be better and everything I wanted it to be. So, I stayed and I worked hard, not because I had to but because I cared. I cared more about others than I did for myself, and the effect was real. 

​My job had been a lot for a long time--rewarding but a struggle, long hours, high stress, chaotic and fast-paced days that barely gave time for a break let alone food or water. I was as burnt out. I was feeling like a pile of ashes where a fire used to be, and I was tired. I was looking up ways to take a short-term leave due to stress and burn out because I just needed a break. I planned on talking to my doctor about on my annual visit in January, but instead the conversation was directed at my bloodwork. 

It was wonky, specifically my white blood cells were significantly elevated. I had just finished a round on anti-biotics for a sinus infection, so doc said to come back in 6 weeks to make sure my numbers were trending down. You guessed it, they were trending up. I mentioned the fatigue and unintentional weight loss I blamed on stress, and that led to a referral to a hematologist. The following week I found myself going to my first visit to the Cancer Center.

It began with getting 9 vials of blood drawn for extensive testing, I felt as though I was sitting on an island under a darkened sky, watching a storm gather on the horizon. I was unable to know whether it would peacefully pass, or if that storm would strike and uproot my entire life. I sat in a busy waiting room that had an air of coldness and indifference. It was a lack of empathy a clinical setting brings when it's deficient of the components required to make someone feel human and seen for what they were going through. In other words, there weren't too many 'warm and fuzzies'. 

This didn't get much better when I met my oncologist for the first time. He walked in with this look on his face. No smile, all business. He didn't want to look me in the eye, but he attempted pleasantries the best someone without good bedside manner could, I suppose. He sighed and said. "Based on your blood results today, I am pretty sure you have what is called CML, or Chronic Myeloid Leukemia." He continued to speak, offering reassurances as my eyes welled and stomach bottomed out, I heard him jump into stats, talking about life expectancies and prognoses. When I told him I thought I had just been burnt out, being fatigued and unintentionally losing 15-20 lbs the past few months he then said, "well, I think this must have been cooking for about six months then." Cooking, what a vulgar term. Shut your mouth sir. 

'I'm sorry, but who the fuck are you?' was all I could think at the time. Who the fuck is this guy who just walked in here and avoided my eyes like they would turn him to stone and just radically changed my life story. 'You don't get to tell me I could live years to decades, I'm sorry sir.'  He gave me a quick physical exam, warmed up a bit more, and told me not to worry, that I will most likely live a very full and long life and I needed to just take one day at a time for now. Ok great. That first encounter lasted roughly 10-15 minutes tops, and 7 weeks would go by without seeing him again, nor would I ever see him again, in fact. But more on that another time.

So, the plan was to do more tests to confirm his diagnosis. He seemed obliged to dangle a big juicy carrot dripping with hope, stating there was a slight chance it could be from stress. Fantastic! I could just quit my job, rest, and move on. Let's go! Three days later I got a call. Based on more results from my bloodwork coming in, I needed to move forward with the bone marrow biopsy while we waited for the genetic testing results. Two days later I was getting prepped in the hospital.

The biopsy was better than I expected. I opted to get knocked out, because who wants to be any level of awake as someone pounds a large, hallow needed into the back of your hip bone to extract bone marrow and bone fragments from your body? Not this girl. I left the hospital feeling like Alice, only my rabbit hole had led me to an entirely different and frightening place. All I wanted was for someone to shake me awake and I'd find myself laying on the riverbank, realizing it was all just a dream. 

As the days went by, more and more results kept uploading to MyChart online. I could see results, graphs, numbers, and measures, and I had no idea what most of them meant. Biopsy results were in. I could tell the results would not be leaning in stresses favor, and no word from anyone for a week. Then the genetic testing came back, the header reading HEMOTOLOGY MALIGNANCY in bold print. I was positive for the Philadelphia chromosome, which is the hallmark, telltale sign for CML. Two of my genes has translocated, split in half and swapped places with one another, creating this funky gene that is now producing a protein that is making my bone marrow spit out white blood cells like a system trapped in catastrophic overdrive. 

And yet, no one was calling me, and I sat on this information....just waiting. And waiting, and waiting. I finally called and demanded some insight from someone, and my doc called me back shortly after. He spoke of TKIs, the targeted drug therapy I would be starting, what the course of treatment may look like, and gave me hope that I could reach 'undetectable' in six months to a year. I was in an early, chronic stage of the disease process. CML has three phases: chronic (more manageable), accelerated (harder to manage) and blast phase (bad new bears & hard to manage). My next steps were to come in for my med class and get set up with my specialty pharmacy, who would deliver my meds directly to my house. 

My new normal turned into increased ADHD; scrolling between tasks, in traffic, in bed--researching, ordering books, looking up nutrition, support groups, joining Facebook groups named 'CML Hope' and 'Living with CML'. I was consuming information like ants swarming over spilled sugar. 'Sugar, that feeds cancer cells, I need to watch my sugar'. 'Can I go to Hawaii in August?' 'Could I keep running and doing Pilates?' Analogies, comparisons, labels, unknown scenarios, fear of treatment side effects, telling my family and friends, what my future would look like. The yoga and meditation teacher in me wept and fought to keep me in balance. 

Would treatment work? Would I be sick all of the time? Would I get worse and move to a more accelerated phase that's harder to manage? Would I suffer more mutations and my condition changes? Would I be ok? Sleep was hard to come by, and I was desperately trying to reignite that spark from the pile of ashes that would give me energy and focus to get through each day. I still had to work. My Goddess, I needed my insurance now more than ever. I was now thanking my luck stars I had a good job with good benefits, an HSA, and oh yeah.....I might need FMLA.....and a therapist......

​So, I meditated, forced myself into quiet spaces and yoga poses, lit candles, did magic, and pulled oracle cards to receive messages on how to move forward. I was trying to quiet my mind and gain back a sense of control, desperately trying to be the eye of the storm spiraling around me. I can keep it together, I can keep it positive, and I can manage this stress the healthy way. Then you find those moments where you are distracted, in the flow with work, into a tv show or movie, or waking up in the morning and you had forgotten for just a while....then you remember. Well shit. Alice is still down the hole.

Frozen in anticipation and sick with uncertainty, I was in the space between who I used to be, who I was, and who I was about to become, was everything about to change forever, or would this too pass and I find myself on the other side years from now in treatment-free remission? The last oracle card I pulled read 'Enjoy the In-Between'........well I'm going to do my best. Here's to embracing the moment you're in.

​Cheers, with a capital C.