"The beautiful soul you are right now, has fought invisible battles and conquered wars with tender scars and a full heart. The beautiful soul you are right now, has struggled in the seas of misery yet resurfaced to conquer the waves. The beautiful soul you are right now, has had to die and hold funerals for past versions of self in order to be reborn. The beautiful soul you are right now, has walked through fires of pain and suffering, to rise from the ashes. The beautiful soul you are right now, has turned wounds into wisdom, anguish into achievement and trauma into triumph. The beautiful soul you are right now thought they could not make it, yet here you are right now." -Phi Dang @thephidang
Scans will always be a big deal to me. I'm not sure if you ever get to a point where it is easy, despite having had it done more times than you can count. A routine scan last December found that small spot on my spine that even after wishing and willing it NOT to be the big "C" once again, it turned out to be so. I don't know how the cancer came back. I don't know how I didn't know it had come back. I was blindsided. I had believed with my whole heart that I wouldn't be one of the humans who had to deal with recurrence, yet here I am. Sadly, it made me not really able to trust my body or myself to know when there is something wrong. I prided myself on living life as a survivor, not one constantly seeking active treatment. I'm grateful that we caught it when we did. I'm grateful that treatment has been working once again. Even with that said, I read a tweet the other day that hit the nail on the head. It read: "A friend of mine had the still NED (No evidence of Disease), see you in two months conversation with her oncologist this morning. She burst into tears. Why am I still crying about this, she says. Because you live your life in two month increments, my friend. And that must be exhausting."
For me it's every three months, but it's a cycle that leading up to last Friday, I wasn't sure I could sustain. The emotional and even physical toll it takes on you is grueling. I try to be as positive as I can, but fear and doubt have a way of creeping in and realizing that it will be this way on repeat for quite some time is just what the tweet said, exhausting.
I took myself to my scans and results this go around because I felt like I needed to figure out how to manage this ongoing cycle that is suddenly my life on my own. I'm tired of being this burden to everyone around me. This was the first time I had scans on one day and the results the day after. I was worried how the wait would add even more stress to the situation, but I didn't really have a choice in how the appointments played out. I've been feeling pretty sure of the fact that no one is going to magically save me here, so it is up to me to save myself. I obviously put a lot of pressure on myself, but that's not really anything new. In my mind, saving me meant I needed to navigate these waters alone as scary and exhausting as it may be. In the past I've compared my cancer diagnosis and treatment to feeling like I'm on this crazy path alone. Having metastatic disease has felt more like I'm on an island. It's definitely not very pretty and inviting but every once in awhile the sun shines and the palm trees sway. I'm all alone here, with the exception of the cancer monsters that are insistent on making their presence known. It's getting harder and harder to see all of you still on the mainland, which is why I need to work harder at keeping a safe way to get back to you. I know the longevity of fighting an illness is both tragic and inconvenient. I guess I know I'm more than capable of fighting this disease and these monsters alone because strength and resilience run in my blood. What I'm realizing though, is that this is no longer a sprint, it's a bloody marathon. It's ok for me to invite you in and ask for help to find some peace even though the monsters won't go away. It's ok to need and maybe rely on support from others to keep going when I feel like I want to quit.
I made it through the two days and I came out with one less monster to deal with. My bone scan and CT scan of my chest and abdomen show NED. It is most certainly a gift from God and a HUGE sigh of relief. I had an amazing long talk with my oncologist who tells me like it is and also helps me in ways I can't even find the words to describe. I'm so grateful for Dr. Jones and his entire team. They support me not just as their patient, but as a human, a friend. From the nurses wearing my advocacy pins that I gave them on their lanyards, to Dr. Jones giving me the permission that I obviously need to feel hopeful and confident in where I am and where I'm going....these amazing people help me to see beauty where one might only see grief. Gratitude just isn't a big enough of a word for having them in my life.
Moving forward in this next round of living in three month increments, I'm doing what I do best. Setting some goals and reaching high. Here's what I'm carrying with me into this next three month cycle:
1) Try to keep this "I am here, living life NOW" mentality and not be consumed by the What ifs...what if this is my last summer, what if I never take that trip to Paris...what if I don't see the kids graduate high school. It's a continuous battle to release these thoughts as soon as they enter my mind. Exhausting. But as my therapist has pointed out to me, these are just that...thoughts. I don't have to give them more life than just letting them come into my mind and release them just as fast.
2) I need to let people in. Asking for help, as hard as it is for me, might be what helps me save myself. I wish I could change the human experience so that it doesn't feel like the most inconvenient thing to ask for help or just ask for a listening ear. In a fast moving, slightly selfish, egocentric world, it often feels like those of us existing with a long term illness are a major inconvenience. I might be stuck on this shitty island, but I can allow those willing, to come and help keep the monsters at bay from time to time. I won't let you take up residency here....I'm way too empathetic for that! haha! But I'm not going win any wars on my own. Lesson learned.
3) I just need to be kinder to myself overall. I had almost a year of living my life on the sidelines with surgery and treatment taking over. Just because I'm not physically where I once was or where I hope to be, doesn't mean I won't get there. Patience, consistency and GRACE. I have a love/hate relationship with that word, but it is something that I need to allow for myself. Maybe if I embrace these traits I can knock off one more monster here on cancer island...that would be pretty epic.
4) As hard as it is to go through the physical, mental and emotional torment of these scans, it is a gift. No doubt it buys me time and allows my team to jump in and take a chance at tackling anything and everything. I'm changing the dialogue from that of dread,,,I have to have scans to that of gratitude....I get to have scans to hopefully keep me here as long as humanly possible. Thanks for the perspective, Cathy.
Man, I'm happy. and relieved and blessed to have this moment in time. I know I'm a mixed bag of emotions, but that's just the human in me. Thank you for being along for the ride. My wings, Your wings, Our wings...Keep on Killin' It-M
Lease on Life-Andy Grammer
For Mom-I carry you with me through every storm with eyes to see every rainbow...always. Beautiful souls.