I’m reading “Heart Advice for Difficult Times,” by Pema Chodron. Well, I’m trying to read it. I sometimes find this type of book to be a bit preachy, which makes the rebellious teen inside of me refuse to admit that I need help or to see the good that it could potentially bring.
Except now I’m seeing some good – er, at least the start of some.
Throughout this past year, I’ve been told to hold on to the hope. Be strong. Never give up. Strive for stability and look for the light at the end of the tunnel (not as an exit but as an end to treatment). However, as of late I’ve kind of lost the hope. I’ve come to terms that there is no stability. Throughout life there will always be an inevitable cycle – things will get good, then bad, then good, and so on. It’s ever changing; any stability we create is only temporary.
I know this sounds depressing – that’s because it is. But just stay with me, I promise it gets better.
Sometimes it can be exhausting to have hope or an expectation for something better – always wishing for a better outcome to something you aren’t sure is even possible. Once you release that hope and come to terms with what is, it lets you be free to experience the day to day and live in the moment – though the initial letdown of losing hope is hard, really hard.
Anyway, back to the book. Ye Tang Che first came up in Pema’s chapter “Hopelessness and Death” – super uplifting, I know. Its direct translation in Tibetan means “totally tired out.” As Pema explains:
“We might say “totally fed up.” It describes an experience of complete hopelessness, of completely giving up hope.”
This is where I’m at. I’ve given up hope, I’m totally tired out from chemotherapy. Just last week I was contemplating if I should stop after this round and not go on to continue the three more rounds I have left. I’m exhausted, I’m tired of the side effects, I’m frustrated with chemo brain, I’m terrified of the damage it’s doing to my organs – to what my quality of life will be when I stop. And I find myself regularly wondering if I’ll be in the group that relapses after a year free of chemo*.
*Of the four people I know who have been on my treatment plan, two of them have relapsed. Not great odds. Why stay on a treatment plan that is putting me through the ringer if there is a 50% chance of me relapsing?
I’ve given up hope with this treatment plan, with not relapsing. I no longer use the term “if I relapse” and instead just say “when.”
“This is an important point. This is the beginning of the beginning. Without giving up hope – that there’s somewhere better to be, that there’s someone better to be – we will never relax with where we are or who we are.”
I can’t say whether I agree with this part yet. Maybe I haven’t gone through the dark depths of this to relax enough and be content with where and who I am. Maybe I need some happy pill to get me there – though I’m pretty sure that would defeat Pema’s advice on avoiding “babysitters”/ crutches of life. I do understand what she is saying, though: if we stop continually hoping for something better, we’ll be happier. Which is true – if we stay in the rat race and are never satisfied with what we have, how can we be happy? I’m just not sure how to apply giving up hope positively to my situation.
I remember one night a few days after my second bone marrow biopsy. I was so nervous the results would come back positive for leukemia and I’d be stuck in the hospital for another two to three weeks. All of my nurses kept reassuring me I’d be fine, that I had been doing great since day one. I held on to their hope and started focusing on leaving in a few days rather than restarting treatment. Then a fellow on staff came in, without knowing the results of my test, to tell me a statistic that 75% (or some high amount) of people who receive this induction treatment still have traces of Leukemia afterwards and need to stick around for two to three more weeks of treatment. I was crushed. I let my hope drain from me that night and just cried. I had viewed April 30th as my last day in the hospital; that was my light at the end of the tunnel. I wasn’t prepared to stay there any longer. Losing hope that night didn’t make me relax. I was scared, sad, nervous, and pained, but not relaxed.
Looking back I see she wasn’t trying to steal my hope. She was trying to comfort me with hard facts. If I stopped expecting or hoping for the best outcomes then I would stop stressing about them. And what if I had needed another two to three weeks? I would’ve been devastated. Instead, if I had prepared for either outcome, I would’ve been able to handle a negative one better.
I don’t know if I’m at a point to say not having hope is the secret to a happy life (Pema doesn’t say that, FYI – I’m taking some creative liberties here). I do know that I’m Ye Tang Che with my medical life right now and am feeling lost at how to regain some hope to get me through the rest of this marathon.