resilience

When I returned home in June from Indianapolis (during my isolation period) I was towing the line between having a sense of urgency to rebuild what was taken taken from me and complete destruction and resignation. I was tapering off of the opioids and multiple naps a day. Everyday faced with a choice of how I was going to choose to respond to my “new normal” was I strong enough to pick everything back up again and rebuild just a year after beating cancer the first time? The month of June, put me about 60 days post transplant, and most people in this position are trying to lay low, eat soup, and just trying to make out to their mail box once a day. So my bar was low, the question was, did I want to keep it there? Or would I have the courage to set my bar higher and watch myself fail?

Despite what my transplant team said about rest, sleeping and regenerating this brand new body, and immune system. I knew I had to take what they said with with a grain of salt…they meant well and were giving me the “protocol” but if you have any chance at living a normal life with cancer or as transplant patient you have to believe that you are the exception. Otherwise you will get lost in all the things that could go wrong for you at any moment.

I had to believe that I was an exception. That I couldn’t just “wait” for my body to heal itself. I felt I had a responsibility to get it back on track well beyond what they were telling me. Maybe it was just a way of keeping my own sanity, there is so much out of your control with an acute illness. But there is so much you can grab by the fucking balls, if you have the stomach for failure and struggle.

Cuddle your dogs, drink soup, watch netflix, chill. That is what they want you to do. Yoga is good too. That is one good thing they will always recommend. That is a very healing way to remain yourself you still exist inside your body. With those expectations I certainly didn’t have anything to prove to anyone.

The worst part about all of this was thatthere was still this ticking time bomb inside my head telling me that what I did’t have was time….but why? Everything was going great….I filed that to the back of mind. It’s normal to feel that way after transplant, right?

promise you. You, who are reading this, in your head, begging me to take it slow. I really did become leaps and bounds more patient with myself during the next few months that passed over the Summer. Truly, it is a beautiful gift I have learned to give myself.

I really was forced to,, so much was taken from me over the course of the transplant. I learned how to listen to myself and become so in tune physically and spiritually. By understanding myself so intimately it allowed me more empathy and understanding in my friendships that Summer. It opened me up in a way I did not expect. I thought grace would make me self-centered. It made me kinder with others.

I had never allowed myself that permission. I fell in love with myself and it lead to greater intimacy in my relationships.

Prior to this discovery, I was secretly afraid that there wasn’t anything left but a shell inside, that cancer had taken everything. I was working on coming out of a deep depression. Somehow I got a grip (it was probably all of your prayers and support-for real) and I learned to listen to myself, the more I did I became excited by the strength that had developing throughout this process. But, I want to acknowledge that some people can’t just “grip” themselves out of depression, it’s a lot deeper than that. For the first I had to understand that sometimes you can’t just “will” your feelings and it takes a lot more than a mindset shift.

During this time I felt a strong responsibility to press into my every element of myself, I didn’t want to lose myself, but some days it looked so attractive I could just let go and disappear and things wouldn’t be hard. They wouldn’t be anything.

Complacency is tempting, it doesn’t take effort.

It is hard to explain exactly what the turning point was for me, I just knew that one day I woke up andI wanted to push myself, because I loved myself and finally saw myself as WORTHY.

I couldn’t stand the thought of wasting a moment with myself or anyone around me. It was too precious, time looked so valuable to me. Like gold I had been given a responsibility with. 

I had no responsibilities except myself, no work, no expectations complete freedom to be whoever I wanted to be. But who was that? Who did I want to be? I got to choose again. I had no clue, I just knew I wanted to go HARD.

I started gentle, yoga everyday, long walks, and consuming multiple books a week. For sheer pleasure or introspection. I have a huge list of what I read this year in case anyone wants any recommendations by the way…that lasted a couple weeks.

 I want to tell you how hard I worked June-September, like a fucking monster. As soon as we got home, Micah set up a full on gym in our garage. And I was in there every single day, it was so hard to start with 5 pound weights and watch myself struggle. I fell in love with showing up for myself, whatever it looked like. By the end of September I PR’d my weights PRIOR TO TRANSPLANT and finally learned how to do pull-ups and conquered my frustrations with jump ropes. In addition to this I started running again (I was told I wouldn’t run a mile until 2022). 

When I first started running I cried at  .25 mile. It was heart breaking,  to watch everything you worked for previously be non existent. I was running a 14 min miles with a heart rate of 172. But I had to meet myself where I was at.  Even if it was painful. No especially because it was painful.

By the end of September I completed a 90 day run streak with the longest run of 10 miles. I was damn fucking proud. The most important thing was that by showing up for myself I was making my mind strong, I felt like I was preparing for something more than physical, but I wasn’t sure what. 

In August I wanted to do the David Goggins 48x48 challenge. Even if I didn’t finish it, I thought, God Damn , it would be an honor just to attempt it. 

So it goes like this: Every 4 hours, you run 4 miles. For 48 hours. I did in the middle of August 7am, 11am, 3pm, 7pm, 11pm, 3am, ect. It gave me so much life to see that something like that didn’t kill me. Cancer and a transplant a second time around was giving me a strong mind, if I was going to allow it to be developed. In addition to this, I thought, hell I want to do an iron man next year so I started swimming in Lake Wawasee everyday. I hated swimming….but it was something that was taken away from me and I thought “I get to swim! I can’t believe I can swim”. I was addicted to seeing myself progress, of course with that comes the biking….and dragging anyone on the Pumpkin Vine trail who would come. I was on a role, I was on track mentally and physically, looking forward to how I was going to change the world with this brand new version of myself. 

So then I felt like, I should go get my Masters in something healthcare related. Why not? After everything I have been through I wanted to contribute to this fucked up world of cancer. So I applied and enrolled in August in the Purdue Masters of Healthcare Administration program. I was on track to develop myself to help others in something that felt God was etching on my heart. It felt so good to have dreams again. 

I was living my best life despite cancer, I was still going down to Indy 1-2 times per week but I learned how to work around the appointments and labs. My recovery was looking like a miracle. 

 But full stop. Everything can fall down in an instant with one bad feeling and a shitty lab result. That’s what happened at the end of September.  I was told my cancer is back, my transplant failed. All the work, all the pain, all those quality months of life I lost. They didn’t do a damn thing.

My transplant was a failure.

Whiplash, how could something that was going so good just end? I was going above and beyond in every aspect, but cancer didn’t seem to care. 

 Cancer was fucking back. More aggressive that before and it’s rare for anyone to achieve a third remission. Everything crumbled, PTSD. It does not get easier to hear those words. We didn’t have a back up plan. This wasn’t supposed to happen. Apparently I was in a hurry to recover, I am so glad I listened to myself. Somehow I must have known this was coming. 

I am not going to bore you with the details of my treatment today, but just know it’s been hard. I’ll eventually get to the updates and doctors, Micah and I are aggressively pursuing every option we can find. The next several weeks are critical for me to look into any new drugs, trials and treatments to see if I can have more time. I have been inpatient multiple times the past two months at IU trying to avoid GVHD, liver failure, a million drugs and immunotherapy. Bouncing between transplant doctors and oncology doctors.

The last appointment I was at, I was told on average, I have maybe a year to live. I have no idea what to expect, but I was never promised time to begin with. No one is. 

I have had to look at death seriously, three times now, that changes you. It can change you for the best, or it can change you for the worst. It can bring freedom, or it can bring chains. It can rob you of everything you love that is staring right at you. Or, it can inspire you to love the fucking hell out of it while you got it. I am done “humble bragging” about how I plan to navigate these next few days, months, or year. I want to share everything that I am unwilling to relent to cancer if you want to be along for the journey. It might not be polite, but it will be real and I am not going to be the last person you know that has to fight cancer.