The Not Knowing

I’m back in the unknown again. My CA-125 is rising and Dr. T ordered a stat CT last week. I don’t have results yet. My 5th round of Doxil is on Tuesday.

It’s not surprising at this point. Remember, chronic illness.

And it’s not that it gets easier to hear that things aren’t working. It’s completely frustrating. But wishing for things to be different than what they are is futile.

“There is life how it is, and life how we think it should be. The more we cling to the latter, the more we struggle.”

– Andy Puddicombe

Something I’ve learned in my meditation practice is to stop labeling some emotions as “good” and others as “bad.” That these emotions over here are what we want to feel all the time, while those emotions over there are the ones we should avoid at all costs. There’s no avoidance. It’s not about making the emotions go away. That’s just a story my mind is telling me.

I’m learning to take a step back and be curious about the emotions that arise. I let the emotion come to the surface, and instead of letting it take over me, I inspect it. What does it feel like? What are the sensations in my body?

When my anxiety is in full swing, it feels like my heart is racing. That’s what my mind tells me. I’m able to confirm the truth with my fitbit, and pretty much every time, what my mind is telling me is not true.

So, when I get news like the above, I think about what’s true.

Sure, it’s true that my CA-125 is rising. It’s also true that I feel great and am able to do (most) physical activities. (I’m nursing a back injury, but that’s because I have this little problem with not going too hard, too soon.)

It’s true that the Doxil fucks my week up with nausea and fatigue. It’s also true that I’m still able to work full-time.

What I can’t allow myself to do is dwell on things that aren’t true — the ever-present unknown. I don’t know what the CT results will be. I don’t know if we’ll add another treatment to the Doxil. I don’t know how that treatment will make me feel. I don’t know if I’ll lose my hair again. I don’t know if life will have to pause once more.

I can’t live in the “I don’t know.”

I can live in the truth and practice being present in the moment.

What’s true right now is that my life is good and I’m grateful for the problems I have.

18 thoughts on “The Not Knowing

  1. That quote is spot on. Thank you for being open with your feelings and how you have learning to process them. It is helping me understand to not try to control my emotions but accept them and not let them overtake me. I love you friend.

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  2. Thank you for the post that puts into words exactly where I am at too. It’s one year post-diagnosis and I demanded a followup CT and waiting for the results. We’re both lucky to be doing so well that people use the C word (cured) so I use a wildfire that is never totally extinguished for an analogy. I’m glad you’re recognizing and respecting your emotions as a natural part of being human while looking at them with curiosity but not acting on them. All the best on your CT results!!

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  3. It’s time for some science: our feelings/emotions are just chemicals in our brains. That’s all. And they only persist for about 90 seconds–unless we replenish them by paying so much attention to them that they keep flooding their particular trail in the physical being of the brain that we end up, quite literally, in a rut.
    So the idea is that when we first identify the feeling, we can lessen its impact by not reacting without thoughtful awareness–just to acknowledge “oh this is (emotion name here), this is what it feels like” and then waiting those 90 seconds in mindful non-attachment. It doesn’t make the situation go away; it won’t stop the feeling if the world around continues to be unpleasant. But we can teach ourselves to look at it without attachment, without feeling the need to give our energy to this feeling. It gives us a moment to decide if we even have to respond–and if we do, HOW to respond in a way that acknowledges the very fleeting moment of time it is taking. In other words, is it really worth the consequences of giving it priority over our life?
    Almost 7 years into semi-official total disability, and I am still being blessed with the awareness that this condition, while certainly not a chosen one, is still bringing grace and peace into my life. I have been forced to simplify my life–and that lesson is still not done. The things that are important to me are rather different than the ones I had 8, 9, 10 years ago. I find great happiness and peace in things that I suspect most other people miss–things like a puppy kiss, or a gummy smile from a baby. An especially good meal, even if it’s just a hamburger…the Redwoods that live in Eureka; the kindness of a stranger, the ocean with lots of dogs running on the beach. I know, it all sounds like Hallmark moments, but these are things you cannot buy at any price.
    Most people are too busy with the things our society tells them are important to catch these unexpected gifts.
    Being chronically ill sucks balls. No doubt about it. But it does serve as a very reliable gauge for the reality of your relationships with family and especially with friends. THAT is where your true wealth in life resides: in the interactions with other beings–and not just humans, of course! The end of life comes inevitably to all of us. Sadly far too many people have other ideas about death–mostly something along the line of “I’m saved and going to Heaven” or “I’ll get really, really old, having done all the things I think I’m going to do, and then, in that far, far away place, I’ll die.” I believe, with all my heart, that once the concept and understanding that “I AM GOING TO DIE” (and not necessarily that far in the hazy and distant future) is fully understood and applied to our life, Life itself becomes so much easier and we can live a fuller, happier life with the things that are truly important. We can allow ourselves to live in the moment, to experience the small but significant events and times in a way that great portions of our populations never know. The amount in the bank, the car you drive, the clothes you wear…cease to be distractions and revert to their true role–accessories to living, not an end result in themselves.
    If there is an afterlife in whatever form you might believe, then death is a doorway to that next step. If there is nothing after we die, if we essentially become compost for this particular planet, well then, you should live this one life to its absolute best, to become and to be the very best being you can in the time alloted to you. Either way, there is no reason to fear death–only the drive to be the very best YOU there can be. And you, my dear, from what I can see should have no regrets for that.
    From an old song called ” Nature Boy”: “The greatest thing you’ll ever learn, is just to love and be loved in return.” (Originally sung by Nat King Cole and revived in the movie “Moulin Rouge”)
    Everything else is just window dressing.
    Live in the moment and let tomorrow (or the next moment) take care of itself. Appreciate what you have and are doing now; refuse to waste your time on things that hold no importance to you.
    And know that you loved.

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