Thursday, January 12, 2017

Zen and the Art of Lung Cancer Maintenance

(originally posted on Facebook on August 20, 2016)

Do I have your attention?

Good. I need it for a bit. I have something important to say.

The collage you see here is me. Of course you know that - you all already know what I look like.

But that little green dot. That little green dot, for the purposes of this conversation, we will call Lumpy.

Lumpy has been hanging out with me for awhile now, though we just now met him. During a CT scan for an unrelated incident (or related. honestly, my health has been a quagmire of chaos since Reid’s birth, so who knows anymore?), Lumpy was discovered hanging out in my right lung. Two weeks in, we have a diagnosis. 

Lumpy is something known as a ‘carcinoid lung tumor’, which is fancy-talk for “weird lung cancer that no one really knows why it happens”. So, to clarify, Lumpy is a cancerous tumor that currently lives in my right lung. He is a fancy and rare kind of lung cancer, but he is cancer nonetheless. 

So. There’s that. As you can imagine, this has not been my best week. Below I have put together information as best I can.

Q: What is a “carcinoid lung tumor”?
A: A carcinoid lung tumor is a fancy way of saying there is a tumor in my lung that is cancerous. Of all the different types of lung cancer, this is the slowest growing, least likely to spread, and most likely to be cured. Carcinoid lung tumors don’t show any correlation to genetic predispositions, smoking history, or environmental factors, like most lung cancers do. They are total flukes. No one really knows why they happen, other than that white women tend to get them more frequently than other demographics.

Q: Aren’t you like 35 years old? WTF happened here?
A: Why yes, thank you for noticing my youthful glow!

I don’t know WTF happened here. No one does. Carcinoid lung tumors just happen sometimes for no reason that anyone can discern. Approximately 2% of people under 40 will be diagnosed with lung cancer. Of those, about 5% will have this type of cancer. Basically, I’m pretty pissed that I haven’t been playing the lotto all this time.

Q: Are you going to recover?
A: Probably. Long term survival for this type of lung cancer is very high, especially in the early stages. I don’t yet know what stage this is in, but a biopsy of the closest lymph node came back negative for malignancy, which is a good sign.

Q: What will happen next?
A: A few more tests. A PET scan will determine if there is any additional cancer in my body (hopefully not). A breathing test will determine if my lungs are healthy enough for surgery (if my crossfit lungs are not, then gods help us all).

If both tests come back favorably, I’ll have surgery to remove the tumor and the surrounding part of my lung. Recovery looks long and sucky, but do-able.

If my tests do not come back favorably, I will see an oncologist to discuss further options.

Q: What can I do?
*Be patient with me. Understand that my first instinct is to retreat and go inwards when I’m stressed. If I don’t want to see you or hang out, that’s about me, not you. I won’t be attending much in the coming months. My apologies ahead of time.

*Help me with my little people. They need to get to school, they need picked up from school or for someone to be here when the bus comes. They need meals and help with their homework. They need books read to them and pajamas washed. They probably need more love and attention than I can give them in the coming months.

*Feed my husband. Acknowledge how freaking scary this is for him. Buy him a beer. Give him a safe place to just be.

*Send me Doctor Who memes, bring me a coffee, tell me if Aldi gets some super awesome new product. You know, the usual.

*Laugh with me when I do wildly inappropriate things, like title this post “Zen and the Art of Lung Cancer Maintenance”. At any given moment, inappropriate humor is probably the only thing holding me together.

Q: What should I *not* do?
*Don’t freak out in front of me. The last thing I need is to have to comfort other people over this right now. If you need to freak out, freak out with a friend, or with your dog, or with a big bowl of ice cream. But I’ve already got plenty of terror right now without absorbing anyone else’s.

*Don’t tell me you’ll pray for me. I’m an atheist. “I’ll pray for you,” is approximately as comforting to me as “I’ll talk to my cat for you” (except I do believe in cats and usually they are soft and warm, so they have the leg up here) but with the added bonus of being asked to conform to social norms regarding religion that don’t align with my beliefs. Having to navigate a respectful response to prayer that is also true to me is stressful and I just don’t need that right now. If you want or need to pray, go for it. I respect your right to practice your belief system. But understand that bringing that belief system to me gives me more stress than comfort, and I’m already fairly maxed out on stress.

*Don’t criticize my emotional response or tell me what I “should” do or feel right now. I’m 35 years old and I have lung cancer. 2% of people find themselves here. There’s no good precedent for handling this. I will feel what I need to feel. Criticism or invalidation of that isn’t helpful.

*Don’t criticize my treatment choices. Yes, your dad’s brother’s uncle’s cousin did this one thing for their cancer, and you think I should do it too. That’s my choice. Let me make it.

*If you are a person who interacts with my child(ren), for the love of all that is holy, do not say the word “cancer” to them. They will associate that immediately with death. We have lost two beloved family members to cancer in the past year, and that is all they know about it. They don’t understand that conceptually, cancer is just a word we use to describe rogue cells, or the wide range of variance of what that looks like or means. They understand “the people we loved who had cancer died”. Just don’t say that word.

Q: So, really, how are you?
A: I’m freaked out. I know the odds are on my side, but I also know that I tend to have bad luck (as evidenced by the fact that I freaking have lung cancer at 35). As Jason would say, it’s not pessimism, it’s pattern recognition. I’m taking it day by day. I’m really frustrated by the way my professional and personal growth is coming to a screeching halt right now - I won’t be picking back up with grant writing this fall like planned; I won’t be going back to my beloved crossfit gym as planned; I won’t be enjoying the reality of having all 3 kids in a school program this fall as planned; I may have to decrease my involvement or resign from the Board of Directors for BWNI that we just freaking created and finally got off the ground. That’s all frustrating and I’m kind of angry about it.

I’m worried about my family. I’m worried about who my husband can lean on and how well the kids will get taken care of.

Mostly I’m doing alright. Not great, but I’m also not in the depths of despair or anything right now.

If I’ve missed anything or you have any questions, feel free to ask here. I think I covered most of what I know. Thank you in advance for your love and support.

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