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?
A: 
*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?
A:
*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.

When I Die

When I die - and I will, for each man owes one death - do not send me off to heaven, with talk of your god and his glorious works.

He’s not my god.  He will never be my god.

Do not mourn that I didn’t know your god.  I knew the legends and stories of your god well.  I knew the gospels of your Savior, and I loved him for the myth he was and the inspiration he was made to be.  Don’t mourn that I didn’t think him a deity.  Mourn that I’m not here with you, where I would want to be right now.  Where you would want me to be.  

Mourn for the days to come that you will have to live without me, for that is the loss that really matters.  I’ll be gone.  I won’t know the pain of living without you.  But you.  You, my dear, will know of the pain of the empty spaces where I used to reside.  Mourn for the empty parentheses that you’ll never really fill.  Don’t say, “She wouldn’t have wanted me to cry.”  Who wants to live a life that isn’t worth crying over?  Cry.  Mourn.  Do what you need to do, and do it knowing that I would have wanted you to.  Do it knowing that I always understood that to love hard is to grieve hard.  That grief is falling in love, but backwards; that mourning is romance in reverse.

Don’t pray for my soul.  My soul was fine.  If my soul was the part of me that made me ‘me’, it was FANTASTIC for time I had it.  Really.  It was dissonant with rage and love, and full with ideas and communities and relationships and creation.  Instead, remember the rage it instilled in me to hear “I’ll pray for you” used as a substitute for action.  Find someone who needs prayers.  Then find out what else they need and do it.  This will do more for my soul more than any prayer ever could.

Don’t worry that I didn’t have a church.  Instead, remember that I loved to build community.  If it makes you feel better, remember that most of what I learned about community building, I learned in church.  But then remember that I was never more in my element than when I was working to create safe and supportive spaces.  Remember my Tuesday Night group, and my community building work in the beginnings of BWNI.  Remember the ice cream socials and the Mother’s Blessings, and the time I tried to start a commune (and failed spectacularly!).  I didn’t need your church; I had a church all around me.

Don’t fret over my failure to believe in your god.  Instead, remember what I did believe; that social and economic injustices were unconscionable.  That being kind was better than being right.  That love is a verb.  That injury needs validation, and that holding space for the hurt can be the best way to give it.  That sometimes words are useless things, but being there is immeasurable.  That it’s never a bad idea to ask, “What can I do for you?” if you don’t know how to help.  That love wins.  Go out and live that.  Find someone who is hurting and hold space for them.  Find someone who is marginalized and fight for them.  You will find your mind is too busy to fret.

Don’t worry that I’m in hell.  Or that I’m separated from god.  Or whatever religious tragedy you might be inclined to believe about the afterlife that awaits me.  I don’t believe in an afterlife, and because of this my life was so much richer.  There was no ‘greater kingdom’ to wait for; only a vast open space in which I had the freedom to build the kingdom of my life for today.  I lived fully, because today was all I had, and for that I am thankful.  If I’m wrong?  If there’s an afterlife after all?  I’m not worried.  As Lewis implied at the end of the Chronicles of Narnia, if there is a god who delights in good, then my deeds will have been done in his name, whether I knew it at the time or not.  It’s not a thing I spend any time fretting about, and neither should you.

When I die without your god, don’t reduce me to all the things I wasn’t - a believer, a church go-er, a woman of prayer.    Instead, remember what I was;

Remember that I loved to sew.  If you’re someone I was close to, chances are you have something I made.  Know that I often turned down requests for projects, so if I was sewing it was because I wanted to be.  If I made you something it was because you were important to me, and I wanted you to have those hours of my labor.  Go home and snuggle the thing you can find that I made, and remember that I loved you.

Remember how hard it was for me to balance rage and love; how love incited rage for me because of the world’s injustices.  I couldn’t love you and also sit back and watch you be marginalized.  Laugh about the time Curt told me I was the angriest person he knew, and followed that up with clarification that that was a compliment.

Remember that I struggled with body image for the whole of my life, and that while I fought back, I never really won.  In my honor, try to believe you are beautiful.  In my honor, vow to never body shame anyone, ever.

Remember that I loved to sing along to the radio, but I usually stuck to the harmonies.  Laugh about the few times I’d listen to a song and realize I never learned the melody.

Remember that words saved me.  Constantly, over and over again, without fail.  Books saved me, blogging saved me, grant proposal writing saved me.  In my honor, pick up one of the books that I found myself lost in, over and over again.  1984.  The Dark Tower series.  Hey Nostradamus!  Rita Hayworth and the Shawshank Redemption.  Enjoy it.

When I die without your god, remember me.  Don’t diminish my life by speculating on where my soul might be or whether I might have converted at the eleventh hour- I assure you, I will not.  Don’t diminish my life by mourning what you wanted me to have of your religion.  Mourn me, and the empty parentheses that can no longer be filled.

Reid's 4th Month

Baby Reid is 4 months old!

My apologies for this being so late - I was really sick this week and I'm still catching up.

Reid is still growing like crazy and getting more and more active every day.  He can now roll over from his belly to his back, and he's very close to being able to roll from back to belly.  He does very well lying on his belly and likes to look around and survey the scene.

Baby Reid has also discovered his hands.  Sometimes he waves them in front of his face and just stares at them, which is quite amusing.  He can grasp objects if you put them in his palm, and he then tries to put everything into his mouth.  His aim is not fabulous, but we're pretty forgiving.

Reid can also laugh now, which is one of my favorite developments from this month!  He is ticklish especially under his chin, and loves to be tickled.

Puff Family Portraits 2013

We got some portraits done, folks!

I've been wanting to get portraits by Albright Creative Imagery for a long time.  Koren does such a beautiful job, and she lives right down the street from me.  How does it get better than that?  I really wanted her to do birth photography for us, but we couldn't afford it - as it turned out, I doubt she would have been there for the birth anyhow.  Luckily for me we were able to get a fall mini-shoot with her.

I'm not sure there's much more to say other than to continue gushing over how much I love these photos.  Simply marvelous treasures to remind us of right where we stood at this point in time.  Here are a few of my favorites.....

Portrait Sneek Peek

We got portraits done!  Beautiful, beautiful portraits.  I'll be uploading more soon, but for now I leave you with this, taken by Albright Creative Imagery:

 

 

Reid's 3rd Month

Baby Reid is 3 months old!

Reid has changed so much over the past month.  The three month mark is one of the most amazing to me, because it always seems that within a month's time, babies go from sleeping machines staring blankly into the void to little people starting to form their own personalities.  Reid is definitely on the way to forming his little personality!


 The many faces of Reid....

Reid discovered his tongue this month, which is pretty funny to watch.  He will just randomly kind of stick it out and move it around.  He's also started sucking on his hands and my wraps like crazy.  Another thing Reid has discovered this month is his voice.  He's started cooing at us, and it's so sweet to see him and Norah 'talking' to each other.

Reid is usually really happy when he wakes up, so mornings and after naps are really fun.  He's getting enough head and body control to sit with us in his baby booster seat at the dinner table, so we're looking forward to that really soon.

Here are a few pictures:

Reid's 2nd Month

Reid is 2 months old!

Reid is settling in nicely in our new family of 5!  He's growing like a weed and getting more and more aware each day.  Reid is giving us those sweet open-mouthed, toothless smiles that only babies can give.  He is gaining head control like mad, and loves to look around and check out his surroundings.




Sometimes Reid lays on the floor.......



.......it's a little crowded down there.

Reid is getting into more of a routine, and usually sleeps fairly well at night.  Day time sleep is still pretty sporadic - some days he is awake a lot, and some days he still sleeps most of the day.  Reid spends a lot of time wrapped up on mama's back, partly because that leaves mama hands-free, and partly because if mama sets him down in a bouncy or swing, Miles tends to climb in a well.  It goes without saying that most baby devices aren't designed to hold a baby and his giant toddler brother.












Reid and his siblings are getting along wonderfully!  Norah can soothe him surprisingly well by singing and talking to him.  Miles loves him to bits, but doesn't quite know his own strength, so we spend a lot of time working on being gentle

Reid got extra lucky, and got to visit the lake much younger than either of his siblings.  On his first trip to the lake, he got to swim with mama!

Happy Swimming, Reid!

Happy two months, little guy!