decisions
Being in remission has been a whirlwind of emotion. I beat something that was certainly supposed to kill me the third time around. But here I am 3 months later, still kickin’ it and every day is literally nothing short of miraculous for me right now.
But let’s actually talk about the word remission. For me, remission for me means there is no evidence of my cancer in my body, but it’s likely hiding, waiting to make a grand ol’ surprise entrance again! That is why I am currently still on treatment. I am being closely watched by my physicians. I am seeing oncologists and transplants doctors multiple times a week, plus whatever specialists they sprinkle in. It’s a full time job being both a cancer survivor and transplant patient, at least right now.
It’s easy to be disillusioned by the word “remission” as a cancer patient. In the cancer world that means you’re safe, right? Not exactly, this is where everything gets complicated for patients with ALL. Every time it comes back, it comes back faster, and despite a “remission” it is almost impossible to truly get rid of it when you have had it multiple times. That is why patients get a bone marrow transplant, the hope is by putting someone else’s immune system in your body it will destroy your cancer. For most, that is the only chance at any long term survival from this disease. What makes this scary is for me is that didn’t work, and I have yet to find anyone living that has beat cancer a 4th time.
The last month has been about appreciating and celebrating each day that I am in remission. I see everything so differently, it’s like I have this divine opportunity to love and experience others that cross my path, if I can stay present enough to receive them. I don’t want to miss a second of that. I am in a constant state of gratitude with each moment that I get to experience. Everyday day that I wake up feels truly unique and special. That perspective this third time around has been such a gift and so easy to attain because everything feels so transitory when death is so close. But what is strange is that these opportunities and people have always been there. Did I not see these moments as divine before? Did I just not slow down enough to notice that the miraculous was happening in front me? Everything feels special when you think you have six months to live. The non-essentials fall away and what is important is crystal clear, nothing is more important than you slowly soaking it in. Gratitude has never come easier. It’s truly a gift to remain in such a present state. Maybe what makes these moments beautiful is that I am acutely aware that they could end for me at anytime. But then again, they could for anyone.
There is also another reality, I do have to plan for my cancer to come back. I understand that this remission will probably be short lived. I am fighting denial every day and trying to pursue hope at the same time. But I can’t let what hasn’t happened yet, overshadow the moments I get experience today. Or allow it to steal my ability to hope or interact with the present moment. It is a tender balance every morning that I get up, and my feet hit the floor. I have to a deep breath and check in with my present self. It is a conscious effort to decide what lens I am going to view today in, what perspective I will choose to live out of. Fear or hope?
I am living in this present moment while trying to face the impending reality of death and dying.
Even though my long term survival statistics hover around 10%, there is still hope. But, I have decisions to make. Big FUCKING DECISIONS. That is why Micah and I have been traveling back and forth from Texas to Seattle. I was told someone in my position, on average has six months to live, but there are a few options that could extend this. Every Doctor has a different opinion on how I should pursue these options and treatments. Because it was so unlikely that I would get this far, there are only very risky treatment options left, with poor outcomes and high mortality rates. There is no research or case studies suggesting a path that would guarantee a positive outcome. I have the option to go straight to a second transplant, but to do two transplants in the same year is almost unheard of, because my body needs at least a year to recover from the first transplant. The chemotherapy that I went through for transplant is so intense it destroyed my reproductive system completely. I no longer have a period and am anxiously awaiting to go into early menopause. I will never have children. And there are side effects that have started to trickle in from the first transplant that weren’t evident before. I just got out out near liver failure last month, I have stomach problems and chronic diarrhea, skin rashes and dry eyes, that flair up from my immune system attacking itself, I haven’t slept through the night since March, and the medication I am on has caused my endocrine system to spiral, there is a rapid atrophy in my muscles, rapid weight gain. Not to mention bruising and bleeding that occurs just from doing daily yoga practice. To go through a transplant all over again without any guarantees and take on more risk and more side effects at a single digit chance of survival, just looks like a shitty last resort. But many transplant doctors say it’s the only chance I have at any chance of a long term survival. On the other hand, a second transplant could result in death itself, or leave me worse off, and my cancer could still come back. If I get a second transplant, there is still another decision about what kind of transplant I get. Do I participate in a mismatched donor? Do I use another sibling? We tried that and it didn’t work before, but there is less risk with a sibling donor. If I take on more risk, I might have a better chance, but there is no evidence to support that theory, just a hunch. Or I could try something really novel and find a clinical trial where no one really knows what they’re doing! There are so many factors to consider, so many decisions to make, and no guarantees no matter where you land.
I have had to dig deep for courage and ask the hard questions like:
What are my chances of long term survival? What are my chances of dying from this procedure? What are the risks? Do you know of anyone that has survived this? What are the worse possible outcomes? How long does it take for sometime to die? What are the long side effects?
Most of the time the answers were so hard to hear, my brain wouldn’t accept them, and I would have to ask the doctors to repeat what they said multiple times. I know why some people in my position just don’t want to know. It’s hard to hear, even harder to live with. I want to face my fears, I don’t want cancer to steal my ability to courageously show up for myself and those around me. Some days denial is very tempting but, I know I can live with the reality of my situation and not allow it to steal my ability to experience and live life. There is so much that cancer can’t take from me if I have the courage to face the reality of my situation and learn to how to live with it, for whatever amount of time I have. I don’t want to live in denial, I want to have the courage to face hard things. And make hard decisions without looking back.
There are other oncologists that suggest that I wait and see what happens, maybe I will be one of the lucky ones and the cancer won’t come back. The problem with waiting for my cancer to come back and then get another transplant, is that there is no guarantee I can get into a fourth remission. Which would blow my chance at a transplant if I couldn’t. But, a second transplant is so high risk that if it doesn’t work, I could die sooner and lose the quality of life I do have now.
Do I go to transplant and risk it all for a small chance of long term survival ? Or should I YOLO the shit out of the next few months and just wait?
Good God, I feel like I’m playing chess, with my life. I don’t have to make a decision today about a second transplant, but it is something I have to decide by next month. The thing is, I can make a decision, but the outcomes are a total crapshoot, nobody really knows jack shit, and in terms of my health, there is nothing in my control that I can do to keep my cancer away. Honestly, I might as well flip a coin. Here is what is hard, I made a good decision last April in 2021, when I got my first transplant. For six months I believed I received MERCY and HEALING and then, it was taken back from me. Did God do that? Did it happen by chance? Was there something I missed? Was I arrogant to think that I actually deserved to beat cancer while all of these other people didn’t get to? It didn’t matter the reason why, everything came crashing down and I was looking at deaths door once again. My good decision had a shitty outcome, with no explanation.
But, I refused to look back and think “what if”. You can not change the past, but you can remain flexible and shift your perspective. Instead of asking “why” or “what if?” I asked myself what I could control in the current moment, moving forward. I can’t afford to waste any energy looking back, I made the best decision I could with what I knew at the time. We have to give ourselves grace when something doesn’t go as planned after we make a decision. If we look back at the past it should be because we want to grow from it, not beat ourselves up about it. I could still be asking myself why my cancer came back despite a perfectly matched donor, and a flawless transplant. But there is no fucking point if I want to move forward and get the most out of what I have now.
Making decisions is something I have never been good at I was an over thinker and I used to second guess myself constantly. Growing up in the church I over spiritualized every decision I had to make. I wanted to so desperately to be in “god’s will” and would do anything to hear his voice and know that the decisions I was making was part of his divine plan. The pressure I put on myself as a young child and into my adult years was overwhelming and debilitating. I felt like I couldn’t make a decision on my own, that everything had to be showered in prayer, and then maybe God would give me a sign or show me what to do. But that was completely crippling, because, most of the time I never received a sign and I never heard a voice. I watched God talk to everyone around me, but not me. I didn’t trust myself or my intuition, and God didn’t want to talk to me, it was paralyzing.
What made things worse was when I felt like God was silent, I thought I was being punished. Which lead me to believe I wasn’t trying hard enough and didn’t deserve answers to the decisions I had to make as a young adult. But cancer was my catalyst to stop over spiritualizing every decision I had to make. I dropped the overthinking and realize God wasn’t hiding the “answers”. It finally became clear to me that God gave me a brain, that is meant to be connected to my heart and soul and I can make good decisions if I choose to remain mindful and present. It’s that simple. Maybe I didn’t get the answers I wanted as a young adult because I needed to be able to find the strength inside myself to be prepared to make the hard decisions that I am making now. I have gotten better at making decisions, and I am not paralyzed by them anymore, this might be because I have been backed into a corner of life or death. My cancer journey has been nothing but life altering decisions with no guarantees.
Most of the time if I make a decision that doesn’t suit me I can change course and turn around. It might cost me, in terms of resources or pride but most decisions can be altered if I have the humility to do so. I have learned to make decisions and remain openhanded, as a result I have experienced more peace in my life because I have come to terms with understanding what I can control and what I can’t. It is true what they say “There is freedom in letting go”. I have learned the past few months that most things are not as permanent or detrimental as I think they are. However, there are some things I can not take back, in those situations I have the power of perspective, I can shift the way I view the situation and my expectations. My situation may not be able to to change, but I can always change.
I don’t know what the right decision I need to make is, but maybe it’s not about making the right decision, but instead it’s learning how to respond and live with the outcome.
