Life can be a lot to navigate. From childhood through starting to 'adult'-- paying bills, finding a career, maintaining relationships, friendships, taking care of yourself, finding free time, losses, gains, happy stress, bad stress....it's a lot. If we don't have the proper coping skills for juggling life's challenges, both good and bad, they can sometimes leave us wondering 'how do people do this?' After a lifetime of good, moderate and bad coping skills, I finally felt like I had it all figured out. I was healthy, had a good job, and had good friends and relationships; I just needed to work out a few more kinks and thought 'hey, ok, I think I got it!'

In the middle of figuring it out, I got blindsided by my leukemia diagnosis. What I thought was going to be a conversation with my doctor about cutting down my stress from work and increasing my self-care, instead turned into a referral to a hematologist, which led to a bone marrow biopsy, which led to a cancer diagnosis.

​Blood and bone marrow cancer hits a little different than I expected. There is no tumor, nothing to blast away at into smithereens. These cancer cells were EVERYWHERE. Spitting away from my bone marrow into my blood, and as we all know, your blood is in every tissue, organ, and crevice in your entire body. I imagined my bone marrow getting infected with polluted cells, and like an undetected monsoon that had caused the cells to spill over like a storm drain overrun.....filling the rivers and streams of my body with toxic waste. How will it ever be possible to clean up this mess?

I had spent many years seeking for answers on connecting with spirit, managing my emotions, healing myself, and building an extensive toolbox to help others do the same. One important lesson I learned was that the only constant thing in life is change. When you have it figured out, it will change. If things are bad, they will get better. The Universe has a balance, and as we all ebb and flow in this ocean of energy and life, we too must find a rhythm to move with the change. 

One of my favorite quotes is from the founder of Mindfulness-Based Stress Reduction (MBSR), Jon Kabat-Zinn: "You can't control the waves, but you can learn how to surf." This quote is packed with lessons on acceptance, resilience, flow, adaptation, and presence. Just as a surfer cannot control the tides and movement of the ocean, we cannot control life's challenges and unexpected events. We can, however, work to gain skills to be in the present moment; skills to ride the waves of mental, physical, and emotional turmoil with grace. 

I did actually go surfing once. I was in Maui and decided to join the group and took some lessons, although I was surprisingly weary of the ocean. It was never-ending, unpredictable, beautiful and terrifying all at once. Something told me to do it even though I was scared, that I would regret it if I didn't.

​After terribly bruised ribs, falling off more times than I could count, sore legs and feet, and saltwater flooding my nose, finally, I got up. My body started to respond to the movement of the water, my feet tipped back and forth, my abdominal muscles contracted and released systematically to guide my body. I was surfing. In that moment my soul felt free and I was one with everything around me, I could do anything. The moment was short lived when one wrong move caused me to faceplant right into the water. Oh well, what's important is that you get back up.

Today, navigating my current experiences has posed many challenges. The toolbelt I had spent so long creating for collecting life skills to handle these waves seemed to have slipped right off and was sinking to the bottom fast. I was knocked off of my board and drifting in an endless ocean where my feet were flailing, seeking desperately to find the ground. One appointment turned into many, endless lab draws, biopsies, lab results, joining CML groups and Gilda's Club, waiting, telling people, more waiting, second opinions, getting tested for a clinical trial, waiting, researching, and finally starting treatment not knowing how it would go or how I would feel. 

I had lost my surfing mojo, now feeling clumsy and distracted. My mind would be pulled by the currents of the unknown, carrying along with it fear, anxiety, and stress. I knew my mind and my body remembered how to navigate these emotions, but now I was in uncharted waters, and it felt cold, dark, and lonely. I knew I just had to keep getting back up, I couldn't let myself drown. Not here, not today.

It hasn't even been two months since my diagnosis, but I feel I am slowly regaining my footing. I have good support and boundaries at work so I can rest and reduce stress. I have an amazing personal support system from family and friends. My quest for knowledge offers plenty of ups and downs including learning about statistics, possible mutations, success stories, and poorer outcomes. Learning that we with CML used to have no hope, it was terminal and all we could do was our best. Now with advances in modern medicine, we have hope. But we are cancer thrivers, not survivors.....yet. 

We can't blast that tumor away, but with targeted therapy we can suppress and control the spread of these mutated and toxic cells from spilling over and taking control. There is a saying for those living with CML, 'we don't get to ring the bell', with a book of the same name. The emotions caused by knowing that with CML it will be a lifetime thing, that even if we respond to treatment, become undetectable, and after years can eventually try treatment-free remission, there is always a strong chance it will come back even years later because these cells lurk deep in our marrow and our tissues.... are a lot. Success stories help balance that flow and keep me looking for the sunrise on the horizon.

Knowing that even though we now have life-saving drugs that can allow us to move from a 5-year life expectancy to decades or even a normal life span, they may cause a lifetime of nausea, bone pain, fatigue, resistance, mutations, treatment failure, stem cell transplants... it's a lot. You learn to adjust your focus, seeing the shapes and colors of even more success stories, people with minimal side effects, undetectable in six months, no issues. Living regular lives. This helps with the flow.

When the rest of your life story has been suddenly re-written you have choices to make. You can resist, refuse, drift away, give up and let the cold, murky water pull you down into the dark depths of the abyss. Or you can get up on that board, ankle strap secured, take a deep breath, and start surfing. There is more hope on the horizon with advancements in care, treatment, support and outcomes. We are the single drops creating an ocean of change each and every day, but we must stay the course, we must ride out the storm.

Even if you fall off every time, you have to get back up. Don't forget to look at the beauty of the sunset, feel the wind, take time to taste the ocean salt on your lips. Live your life and ride the waves as they come. You won't be able to control everything, but you can become skillful in adapting to the only constant thing, change. I have been carefully recovering my tools and gently putting them back into place with love. More and more I find I can now reach for these tools, being able to anticipate the rough waters, the fear, the unknown, including the new side effects of starting treatment this week.

It's only been 6 days since starting my clinical trial at Karmanos and a couple of days I feel like I have aged 10 years in that short time.  I am starting with the latest and greatest targeted therapy, Scemblix or Asciminib, already out for years and shows great molecular response and the least side effects. My trial is to see if it is beneficial to start with this treatment as opposed to moving to this med only after you have not responded to other targeted therapies. I have my first check-in to see if I am responding to treatment in 9 days.

​As I feel the fatigue slowing rolling in, waves of nausea, and bone pain that feels like shin splints crashing into my bones like boulders everywhere, I reach for my tools. I meditate, I do yoga and Pilates, I walk, run, paint to express my feelings, and I am present in the moment, letting go of what I cannot control. Riding the wave, I am learning to adapt. 

As I sat in meditation this morning I imagined in my mind's eye an inlet on the ocean surrounded by trees. The winds were blowing, the trees were rustling and the water was rough. Through my own breath and intention, the winds died down, the trees settled, and the water became still. My body melted the tension through my breath, and I slowly became the water gently lapping up against the shore. I gave what I no longer needed back to the earth, drawing renewed energy in to fill myself back up. 

I invite you to do what you can to believe in yourself and your ability to face anything life throws at you. Learning to surf takes time, but when you do you can't imagine the view and power you gain from moving with the tides. Do what you can, don't beat yourself up if you fall off, just get your ass back up and try to enjoy the ride.

There are times when you get the feeling about a person, place, or situation. As much as you want to trust, believe and give your heart away your gut pings like an annoying message alert, telling you 'nuh uh'. That wasn't my immediate reaction to my first oncologist office, but as time went on and I wasn't getting answers or communication that feeling in my gut started to turn sour. It wasn't all of their fault, but mostly. It was a complicated relationship. 

Perhaps everyone there was well-intentioned but simply too busy and overworked, which I can certainly relate to and understand. Being asked to be placed on hold the second they answered the phone, rows of people moving in and out, no one really smiling or talking. I saw no inspiration, no happiness, no hope really. People going through the motions, quiet, people just doing their job, getting their labs or treatments and move along. 

I started to feel lost in the shuffle. More like a collection of numbers to analyze, figure out, and move on. For this relationship, for me, I was afraid I needed more. This is at least my experience, others may find exactly what they need there, and I am so happy and supportive of them. More power, peace and healing to them all. 

After my brief initial visit where the oncologist dropped a bomb on me and I literally never saw him again, it was like being on a blind date and he had arranged for the emergency phone call and he was out of there. From then on, it was weird game of phone tag and ghosting. Not to mention the waiting I went through for a call on all of my genetic testing and bone marrow biopsy results as they sat in MyChart forever to confirm my diagnosis (I knew I officially had CML before my doctor did, that's a whole other story, see my very first entry), then the multiple times I had to call to see if I was keeping appointments, if my meds were in or approved yet, or what was going on, that feeling now sat like spoiled fruit in my stomach, fermenting into unsettling resentment. I didn't feel seen. I felt gaslit by a gatekeeper in a white coat, questioning what the hell my reality actually was. 

To their credit they were making efforts on my behalf. It seemed my insurance company had self-righteously rejected the medication my doctor felt best suited for my treatment. Why? Basically, because the meds my doc wanted me on were expensive and the insurance wanted me on the first generation, cheaper option. The suggested meds from my oncologist retailed between $15,000-$25,000/month. Per month. That is potentially $300,000 out of pocket for a year. How in the name of all that is ethical can anyone be expected to afford that?

I quickly learned from the helpful members on my online CML groups and my doctor the Cost-Plus Pharmacy started by Mark Cuban was a philanthropic endeavor started to take out the middlemen that jack up meds to their catastrophic prices. It turns out, you can get those meds I needed (to save my life, by the way) for $500/month close to cost. Cash only, no insurance taken.

My doctor said if my insurance continued to appeal, I could go around them and pay cash to get started on the meds, and if we did win and they decided to cover it, they could be total dicks and say they will but only cover 20%, leaving me on the hook for up to $20,000 a month.  Or I could take the meds the insurance wanted me to, it was my choice. Just make this nightmare stop, already. Can someone just help me. 

I didn't want to make these choices. If I was going to be told I have cancer, I then wanted someone to come and say 'this is what we are going to do, and you are going to be fine. We will get through this.' I was falling farther and farther down the rabbit hole of hell at this point. 

My already enormous stress was now having to handle this getting tossed into the ring, and I couldn't handle any more. My doctor made appeals, sent over research, and tried a peer-to-peer call which the insurance denied and denied again. I was being pushed into insurance-driven treatment vs. doctor driven treatment. For those efforts I thank him immensely, truly. But the stalling of my treatment now going on for over a month was making me crawl out of my skin. And still no one was really talking to me, and I was left to sit. I didn't know what to think. The sour fruit was now putrid as can be and regurgitating up into my esophagus. 

This may not be all of their first rodeo, but it's mine. Everyone seemed to have missed the memo that someone new to all of this may require some insight, empathy, and closer correspondence to feel safe and reassured. I felt cast out to sea on a makeshift life raft, watching the fat cats on their gleaming yacht use their chubby feet to push me farther from shore, champagne in hand. I was going to drown. 

​I decided to take matters into my own hands. I called Karmanos Cancer Institute in Detroit, ranking in the top 2% in the country and an NCI, 5-star status cancer center. From the first phone call my tormented guts began to let go, release, and soften. The coordinator spoke warmly, was patient, even allowed me to place her on hold because I had taken the call at work. She was on the phone with me as long as my first and only prior oncologist visit. She shared her personal experience with breast cancer. She got permission to pull my records and test results and got me in with their CML specialist first thing Monday morning. 

Pulling up to Karmanos the magic continued. The complimentary valet walked up with a smile first thing, opening our doors. I was pleasantly greeted by the concierge and then given a navigator take us to my department. I can see why, it was a huge and lovely place. Everywhere the vibe was up, people talking, first names used with familiarity between staff and patients, joking, laughing, helping.......it was beautiful and I was smitten.

I received a tracker when I checked in. Not so I can leave and be informed when I could come back, but so that they could track how long I was waiting and ensure they communicated with both me and the doctors if it took too long. I already felt like I was in another world, one that was healing, loving and caring. This was it. My heart skipped a beat, and I knew I had found a new partner in this journey.

From the nurses to the PAs and the doctor, everyone was amazing, caring, and took the time to sit and talk. We went over anything and everything I wanted. The doctor sat with us for literally an hour, explaining all options, asking if I wanted to record the conversation, and pulling up articles and information on my cell phone I could read more on at home. While the insurance wanted me on the first-generation drug for CML, and my first oncologist was fighting to get me on the second-generation drug, Karmanos wanted to get me into the clinical trial for the latest third-generation drug. Wait, what?

It had already been out for six years with great results, a different targeted therapy given to CML patients who either relapse or have a failure response with standard treatment. I could join 7 others at Karmanos (all doing well) and less than 100 around the country to get this as newly diagnosed and as a first round of treatment instead of last. The stats were promising, the research looked solid. This team was supportive, helpful, and positive. 

I took all of the paperwork on the trial home, my now new oncologist said I could opt for the trial or continue with standard treatment where he will back the choice for the second-generation drug chosen by my first doctor. I opted for the trial. I went in for my pre-screenings and signed the paperwork. I cancelled my follow up appointment with my original oncologist where I was actually going to see him again after 7 weeks after of our first meeting. I didn't want to. They never called me back.

I received a letter from my insurance; they approved the medication after all. For that I am grateful, and I now have that as a back-up if I don't qualify the trial for whatever reason. Even with this exciting news on the meds, still no call from my original doc. It was like they felt cheated on or betrayed that I reached out for a second opinion and their feelings were hurt. Well, I'm sorry but shame on you. I am not a lover or a friend; I am a newly diagnosed patient who needs reassurance. For you to not give me the courtesy of a call to let me know we won the battle and insurance approved the meds, to see what my second opinion said, and see what direction I wanted to go in, that's on you. I will no longer stand by and wait. It re-affirmed what I already felt. Now they can take me off of their packed roster and move on. I wish them all well.

And if this is how you are going to be, then this is where I need to break up with you. It's over. It's not me, it's you. I've found someone new.

Highest Quality of Care
To receive the NCI designation, a hospital must demonstrate expertise in research, laboratory, clinical and population-based research. Hospitals must also provide early-phase clinical trials and conduct community outreach and educational activities. At any given time, Karmanos is conducting an average of 700 cancer-specific clinical trials and research projects.

Our researchers and clinicians work together to develop groundbreaking therapies. This commitment ensures that patients at Karmanos have access to the most extensive range of cancer treatments in Michigan - providing tomorrow’s standard of care treatments, today.

Learn more about clinical trials at Karmanos Cancer Institute here. 

Time to get a little technical. It's amazing how quickly you can become in expert in something you knew nothing about in so little time. Just like becoming a member of a club I never wanted to belong to, I was now an accidental student spending most of my time researching something I never thought I would know much about. So, if you are in the mood for a mini deep dive, hop into the milky-white pool with me. 

Leukemia is a cancer of the blood and bone marrow where your blood is made. The DNA of a single cell in your bone marrow mutates and can no longer function properly. This single cell then begins to replicate out of control, like a system stuck in overdrive. These replicated cells, or leukemia cells, all carry mutated DNA with the same coding error. Leukemia cells are abnormal and immature. Fully mature, healthy cells become white blood cells (fight infection), red blood cells (carry oxygen to organs/body) and platelets (clotting). 

Stem cells in the marrow turn into either myeloid cells, one of the three mentioned above, or lymphoid cells, specialized white blood cells. The rapid production of these abnormal, leukemia cells, begin to overcrowd your bone marrow, leaving less and less room for stem cells to develop into healthy cells. As the disease progresses, the abnormal cells spill over from the bone marrow into the blood. When your blood is overcrowded with abnormal white blood cells that do not function, it cannot carry the healthy cells that deliver oxygen to your body, fight infections, and clot when needed. 

​I have CML, or chronic myeloid leukemia. This is one of four types of leukemia and affects roughly 10,000 people per year and accounts for only 15% of all leukemias, making it rarer. CML is caused by a genetic mutation involving a translocation between chromosomes 9 and 22, creating the Philadelphia chromosome. This produces the BCR-ABL1 gene, which encodes a protein that drives uncontrolled cell division in my myeloid cells. 

I am fortunate to have a chronic, or slow growing form of leukemia as opposed to an acute, fast-growing form. 

CML progresses in 3 phases:
Chronic phase – slow-growing, often asymptomatic, and most responsive to treatment. I am also fortunate to still be in the chronic phase.
Accelerated phase – disease progresses, blood counts worsen, and symptoms become more noticeable.
Blast phase – aggressive, resembling acute leukemia, harder to treat, and may require intensive therapy

Common symptoms of CML include:
Fatigue
Night sweats
Weight loss
Fever
An enlarged spleen (felt as a mass under the left side of the ribcage)
Pain or a sense of "fullness" in the belly
Loss of appetite, or feeling full after eating even a small amount of food
Bone pain (caused by leukemia cells spreading from the marrow cavity to the surface of the bone or into the joint)

Leukemia can lead to other symptoms from both disease progression or treatment. There are other symptoms and side effects of modern treatments that can happen. These can either be caused by the leukemia cells crowding out other cells in the marrow and blood, or from the treatment itself:
A shortage of red blood cells (anemia) can lead to:
Feeling very tired
Weakness
Shortness of breath
This is because rbc carry oxygen to the body's and organs and tissues

A shortage of normal white blood cells (leukopenia) increases the risk of infections.
(in leukemia yes, we have too many wbc, but they do not function properly, and we are left short of the ones that actually work)

Shortage of blood platelets
A shortage of blood platelets (thrombocytopenia) can lead to:
Bruising easily
Bleeding
Frequent or severe nosebleeds
Bleeding gums

Unfortunately, 25 years ago, this diagnosis was a fatal sentence, with no treatment that would prevent the phases of this disease from becoming blastic and the abnormal wbc cells eventually taking over, losing the battle. But huge medical strides have been made, and this is the 25th anniversary of a revolutionary treatment that changed cancer treatment forever. The TKI, or Tyrosine kinase inhibitors (TKIs) are the first-line therapy, targeting the BCR-ABL1 protein to control cell growth was developed and changed the landscape of treatment.

Scientists had found a way scrub out the bugs in the system and reset the circuit. It brought people's numbers down, stopped cells from reproducing, making them 'undetectable' and in remission. Other forms of treatment for more advanced stages are chemotherapy and stem cell transplants. 

Even more exciting, now on the horizon is a further development I hope to soon be a part of. I am super fortunate to be able to be considered for a clinical trial at Karmanos Cancer Institute for the latest and greatest treatment. Scemblix is a new targeted therapy different from TKIs. While TKIs work to block proteins from developing, consider this the specialized mechanic with the magical precision tools to target my faulty cells and allow that runaway train to slow down to a halt. 

This is a medication that is typically given to patients who either relapse or have a poor molecular response to the TKIs with a new gene mutation. This drug shows significant success with a deep molecular response with the least side effects. In my trial I will be getting it first as a newly diagnosed patient as opposed to a next option after trial and failure. I spent half of my day on the day I wrote this getting close to a dozen vials of blood drawn, and getting my prescreening, including EKGs and echocardiograms, and filling out a ton of paperwork. 

I should be hearing by the end of this week if I am eligible, and if so, I start on Monday. Wish me luck, I hope to embark on a journey that can be a part of research and a new evolution in the treatment of leukemia. What do they say? Courage is being scared and doing it anyway....do I really have a choice? Yes. I choose yes.

One thing I'll say, dang I feel svelte and I have never gotten so many compliments. I've been on a mini high from getting down a size or two and for the first time in a long time feeling good in my own skin. People smiled, gave me compliments....'you look great!'  But alas, this musing is about my well-intentioned, self-loving quest to be healthy and happy and finally feeling fabulous being twisted into a tale curdled by cancer and stress.  Before the first photo below was taken, I had made very intentional life changes. I wanted to be in the best shape of my life by the time I was 50. I could do that in a year and a half, I thought. For the most part, at 49 I had led all endeavors and intentions with a grade of self-sabotage most people didn't see.

Whether I thought I didn't deserve to be happy, healthy, or successful, I'll leave that to my next therapist to help me unpack. I just knew that I was ready to rewrite some code and scrub out the bugs in my system. As I ebbed and flowed through life's chapters and challenges, there was always something I carried with me to some degree, and it was finally time to put it down.

The biggest change I made? I had given up a lifetime of drinking alcohol, which was an unfortunate coping mechanism that followed me my entire adult life like a false ally.  It promised to mend my sunken roots as a child and to make survival easier, however all it gave me was a compilation of embarrassing moments, excess weight gain, high blood pressure, too many hangovers to count, and I'm fairly certain my Hashimoto's. What a shitty friend. 

Eventually my body started to reject it, and the forever loop of anxiety was enough to throw my hands up and declare there must be a better way. Was I physically dependent on it, no. Did I create daily habits and rituals that revolved around it, absolutely. There was a long stretch where a day didn't end with at least a couple glasses of wine, and several days a week the whole bottle; it shut my brain off and took the edge off of whatever I was feeling.

One day, I decided, I'm just done. I hate this tipsy hamster wheel I'm on and I'm sick of feeling like I'm not strong enough to handle whatever life throws at me. I'm sick on not loving ME. Because my body didn't like it, it showed me in many ways, from flushing to heart palpitations, headaches, bloating, and tons of inflammation. I didn't listen. I did what I always did and chalked it up to my lifestyle; I cook, I paint, I work hard, I drink wine and bourbon. That's me. But it didn't work anymore and I was done. I finally chose to love my body, see it, and tend to it in every present and intentional way I could.

​I did well without it, actually I did great, and as I continued on my quest I was feeling like the person I was always meant to be. I got a Pilates machine, started running again, and reclaimed my life. It felt great to experience every feeling and be completely present for every moment. And today I would never choose to have it any other way. I have to say I have never felt so resilient, empowered, and validated in my life. That false ally had finally left for good--quietly dissolving and leaving me standing in the truth of my own strength. I was feeling fit and healthy, despite having been running on fumes for over a year. 

Dropping the alcohol and then cutting mostly carbs and sugar, weight started to come off. It's hard to know now how much was intentional and how much wasn't, because by the time I got to this second vacation in October, I was feeling good. I was down about 25-30 lbs and felt great. I starting not caring if I had pizza and snacks, I didn't work out as much. However, as I allowed myself to ease up and enjoy what I wanted for a while, I kept steadily losing weight. That's where the story begins to curdle...

My busy job often left me hungry and dehydrated most days, and my stress was piling up. I had been working hard with long hours and high stress for a year and a half. My brain began its own story to ease the undercurrent of worry caused by my now more prominent bones in my shoulders, ribs, and hips. I had never been boney in my life, perhaps as a child, but as an adult I had typically owned the more Baroque female form. I wasn't terribly skinny, no, but skinnier than I've been in a long time.

​My body started to feel different, but in more of a concerning way. I had my fun of buying new clothes, but more things started to feel big and baggy, like my entire frame shrunk inward like a balloon slowly deflating; still mine but smaller, more delicate, no longer taking up the space it once claimed. 

You're just burnt out; this is from stress, I'd say staring at the scale. You're dehydrated, drink more water.  By the time I had gotten to my first oncology appointment, I was down close to 50 pounds. Technically I was still 5 lbs away from my ideal weight, but having gotten here the way I did was now starting to feel icky and troublesome.  

​Today in hindsight I now sit and wonder if a new malignant passenger had hitched a ride where my former ally had gotten off, and that's not fair. Or was my stress finally getting the better of me? Cancer creeping in or stress and burn out? That was the question. 

The month leading up to my diagnosis didn't help and kicked my stress into massive overdrive. After my doctor told me his suspicions of leukemia, I could barely keep my hands on the wheel, and I fought for weeks during bloodwork and biopsies to keep from going off the rails.

After my diagnosis it was hard to accept the compliments, everyone asking how ever did I loose all of the weight...and I was angry that my hard work and dedication had been taken away from me. But I took them anyway knowing I worked hard to be healthy and can still claim part of that victory. I still loved my body, and as much as I fought to care and tend to it, now I had cancer. That painted a sick version of myself in my head. I didn't feel sick, but I knew my body was sick and now that's all that I saw.

My clothes no longer fit. I felt like a child in their dad's suit at work, my regular clothes falling off of my shoulders, ass baggy and waist loose. I needed to buy all new pants and discovered I had gone down another whole size. I haven't worked out in over two months, eating mostly healthy but not caring as much, and I was still losing weight. I was now the smallest I've been in over 15 years, smaller than I was when I owned my studio and did yoga every day. I look down at my legs in yoga pants now and feel they belonged to someone else, in bed my knees knock together, and sitting on the floor my sits bones feel boney and uncomfortable. 

But will I ever know? Stress? Leukemia? A lovely combination of both? Weight loss and fatigue are common symptoms of leukemia, but also of stress and burn out. If it is the leukemia cells affecting my digestive tract and absorption of nutrients, or those little fuckers are literally sucking up all of the energy my body is producing and then some and causing metabolic insufficiency.... if it is them, I can't help but feel sad that I failed and now betrayed by my own body. I tried to love you so much... to make amends, to fill the cracks I've created over the years with gold. Perhaps my collapsed Kintsugi failed at reinforcing those cracks to honor my healing and instead had fallen short; my body now suffering a malignant short circuit and was slowly destroying itself. I took too long... I was too late. 

However, I haven't sunken into the pits of despair. I haven't wanted to reach for a glass of wine. We can't go mad seeking answers we'll never get. Plus, I have no time left for insanity, I now have more work to do. I love my body, I love myself, and I will fight to get it back from this new hijacker that wasn't invited to the party. I have made huge strides in making my life everything I want it to be, and I will still get there. Life just has a few more roadblocks and detours planned than I did. I will continue to nourish my body, mind and spirit. I will replenish my roots and have faith I will flourish once again. I will feel all of the feels along this journey, bust through whatever gets thrown at me and keep my eye on the prize, getting my life back.

These cracks will fill not only with gold but with light, and they will be so bright you won't be able to dim my fucking shine ever again. 

So, here I was. I was in this new phase of my life, swimming in the 'in between'. I was newly diagnosed with Chronic Myeloid Leukemia, a slow growing blood and bone marrow cancer, waiting to start treatment, and getting partially ghosted by my medical team. I had taken my med class for my oncologist's recommended treatment and just needed to hear from the pharmacy once my insurance went through. It was taking a long time, and my nerves were getting frazzled more and more each day. Time was moving like bated breath, and it was getting stretched thin, uncomfortable, and needing to release. 

I was in a holding pattern and didn't know where to turn. A friend who had come with me the day of my diagnosis had fought and won her own battles, and some of her first advice was 'join Gilda's as soon as you can.' 

Gilda's Club as in the nonprofit in memory of Gilda Radner. These clubs offer a home-like environments that are supportive spaces where those impacted by cancer can connect, share, get emotional support, programming and workshops, and help to break down barriers to care. 

Really? I thought. Isn't that too soon? That's not really for me, is it?  But I'm not in chemo. You think I should?  I was reluctant, but I needed to turn somewhere and felt like a spinning top, trying to keep upright while everything around me blurred. I needed something to focus on.

Without even having started treatment yet I felt like a phony scheduling my new member orientation and tour online. But I'm not sick, was all I could think. I looked at the schedules and local locations online and started to feel the pressure of time release ever so slightly. Yoga, Reiki, art therapy, and tai chi on the water. Oh yes, I could really benefit from that right now. Blood cancer support group, oh, ok...I suppose that applies to me. 

Cancer-fighting smoothies, living with cancer group, farm to table dinners, fundraisers, so much community and support. Since having to close my yoga studio during Covid I had desperately been missing something so important in my life, community. I missed the deep-rootedness I felt in a circle of strong women. Holding space as I taught connectedness, sitting in a circle sharing stories and magic, falling deep into a meditative, group Shamanic journey. I have been uprooted for too long, and now my roots felt fully exposed and untethered. But I was willing to learn to grow in unfamiliar soil. 

It would be amazing to have a community again, although I had never thought I would be a part of this one, then again, who does? Although now I felt like an imposter in my own story, would I walk into this new world like a character in the wrong costume....would I not fit and wait for someone to tell me I was in the wrong play?

The visit to the Clubhouse was lovely. The old, Victorian house was nestled on a corner down a main road, quietly held in the trees that surrounded it.  Walking in I was comforted by the warm wood, architecture, and smiling faces. I met privately with the social worker, we sat on big, comfy couches, and she gave me the history of Gilda's. It included Gilda Radner' story and how Gene Wilder and her friends starting Gilda's Club in her memory based on her own experience with ovarian cancer. Gilda described cancer as being an elite member of a club she'd rather not be a member of, and to that end, everyone needs a place. So, Gilda's Club offered a haven of support, resilience, and community for those navigating similar challenges.

The tour offered insights and inspiration with large meeting and yoga rooms, a quaint library with resources and poetry, and a beautiful kitchen stocked with snacks, coffee and tea readily available. The old floors creaked with the sweet support it's offered hundreds of others over the years. I felt the thousands of fingertips along the worn, wooden banisters that were there before me. A tiny corner shelf held donations including homemade beanies and cooling pads, bookmarks, and art for anyone to take. But I still wasn't sure if I belonged there. 

A beautiful children's area painted floor to ceiling with a magical mural showed how one could easily be whisked away to another land. And Gilda was everywhere. Huge paintings of her and Gene, her and the cast of SNL, life-size cut outs and Gilda art. Her spirit was alive and well, serving millions of people love, support, and hope each and every day.

It was all beautiful, and it was the warm hug I didn't know I needed. It wasn't a club I wanted to be a member of, but I was glad that I was. 

I left with a list of classes suggested by the social worker, and felt like I had a good start. Later that day, I thumbed through a magazine I'd taken home called The Emotions of Cancer (I still feel weird saying that word, by the way); it had articles and poetry written by individuals with leukemia and blood cancers, reading them I immediately heard some of my own story, even this early in the journey. Ok, yes and yes again, I'm listening. I guess this is for me after all. I am in the play, but I still need to practice my lines, I'm not ready for the stage just yet. As I wrap my head around this new normal, I'm slow to start, but I know I'll ease into it more and more. 

I have already taken a self-care course where I met some other members, they all seemed nice and connected. They all looked like me, everyone had their hair, they were dressed nice, smiling, and no sense of sickness filled the air. We sat in the garden, created some therapeutic art, and I got some good tools and reminders of self-care to support me during this in between.

I decided to sign up for the blood cancer support group. I'm nervous about that first meeting (3 days away as I write), and later next week an Anxiety and Cancer class. The following week I'll start the wellness classes and utilize Gilda's as my haven pitstop either on my way home from work or as a retreat on a needed day off.

​But I'll just be in rehearsal for now.....and I look forward to meeting my new community. I know the connections and support with be monumental, and I can go to the clubhouse to sit in the library with some tea, hang out in the garden and find solace and peace or connection and a village. I'm sure in time I'll be a true player in my own right. 

I look forward to finding strength and courage to meet the challenges I'm already having so early on, navigating treatment, possible side effects, juggling appointments, work, and life, the fears, the unknown, as well as the uplifting and inspirational moments that will make me forget about myself for a while.

This is not the final chapter of my story, but merely a turning point. I don't know how the story will end, or what twists and turns it will take along the way. All I know is that I am going to do my best to build the most amazing plot with all of the supportive characters I need to help me laugh, cry, rest and fight. We are all searching for our place, and for now, I am happy this is part of mine. 

Learns more about Gilda's Club at ​Gilda's Club Detroit | Metro Detroit

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.