Captain's Log, Stardate 10/3/16

Originally posted on my What Friends Do blog, 10/3/16

Lumpy Update 10/3/16:

T-minus one week and counting until we are in Indianapolis. On Monday the 10th, Dan and I will go down to Indy for my pre-op appointment. It doesn't look like they need to do very many tests, but there are a few. Then we will stay overnight in Indianapolis and be at the hospital at 5am Tuesday morning for my surgery that is scheduled for 7:30.

How am I doing right now?

Good and bad. Ok and not-so-ok.

This last week I've really been thinking about the diversity in what people have brought to the table to support me. The sheer volume of supportive people who have popped up has stunned and overwhelmed me, in a good way. And when I look at all of them and the various things they have done and are doing for me, I'm amazed. There's everything from craftiness to Reiki, photography to CrossFit, bath bombs to memes to organizing. And the list goes on. I'm amazed at the variety of talent and beauty the people in my life possess, and even more amazed that they've shown up with those things for me. Thank you, all, from the bottom of my heart.

That's the good stuff.

On the flip side, the closer I get to this thing, the darker my headspace gets. It is hard to feel optimistic that there is only a 3-5% chance the surgery would go catastrophically wrong when there is less than a 1% chance that I would ever be here in the first place. Odds don't mean very much to me right now. I've been asking questions about what to expect and what to bring along in the one support group I could find (because, you know, this is a very rare cancer - not so many support groups out there), and the answers are upsetting and scary. 

I worry a lot about how I'll handle the first few months immediately post-surgery, when it looks like I probably won't be able to do basic things like sleep in a bed lying down. And I worry a lot about quality of life for the rest of my life- will the fatigue I already struggle with be *worse* for the next 50-some years? And if so, how can I live with that when it already limits me so much? And so on.

I've picked the xanax back up, I've stopped answering calls, and I cry a lot. I'm trying very hard to hold it together and prepare my family - to get meals prepped, laundry finished, plans made for the kids, cleaning lists ready, our daily routine lists ready, and so on. Mostly I'm getting there. There will probably be things I fail to complete and need someone to do for me. If I call you and ask you for something bizarre, like to go buy a recliner and take it to my house, just trust me.

That's the not so good stuff

Either way, I get through this week, and next week is a go for vacating Lumpy, that freeloading creep. That's the whole goal. I'll keep you all updated if anything should happen between now and then.

IU Health Update - 9/21/16

Originally posted on our What Friends Do page, 9/21/16

First of all, thank you to everyone who contacted me today to let me know you were thinking of me. I really appreciated that. I felt really supported at my appointments today.

I went to IU Health today and had an appointment with a thoracic oncologist who focuses on cancers of the lung, and a thoracic surgeon. It wasn't quite what I'd hoped, but also not what I feared either. Here's a brief run down:

Both the oncologist and the surgeon felt that the biopsy sample taken via bronchoscopy was very small, and that they would therefore prefer to remove the tumor first, then study it and do more tests on it, and then make decisions about other test and treatment options. As Dr. Jalal (the oncologist) put it, tumor removal would be both theraputic (removing and potentially curing the cancer), as well as diagnostic (being able to study the tumor so we can make other decisions about care).

The concensus then is to remove the tumor first, then make decisions about other tests or treatments later, and I'm comfortable with that plan. Someone from scheduling is supposed to call me tomorrow to set the surgery date.

From that point, things diverge a little bit.

Dr. Jalal (the oncologist) was very positive and believes that it is very likely that this is exactly what we think it is - a typical carcinoid tumor - and that when they take it out for study they will have findings consistent with that, and that it likely will not have spread anywhere. So basically she's my favorite right now.

Dr. Kesler (the surgeon) was less positive, saying that it was hard to tell much of anything from the biopsy report, and for all we know this could be anything from benign to small cell lung cancer (which is some seriously bad shit). He also noted that this tumor is pretty large for a carcinoid and that carcinoids typically start in the airways and that mine did not. So he's still skeptical about what this even is, which I was not expecting and which was not very comforting to me. Dr. Kesler is *not* my favorite right now. Not even close.



So, what happens now? Tomorrow we wait for that call from the scheduler and get on the books for a surgery. They told me today that surgery would probably be within the next 3 weeks. We do the surgery and the accompanying recovery. Depending on what the tumor looks like once they've gotten it out and studied it, that might be all we do, or it might be the start of a testing/treatment plan.

That's pretty much what I know for now. I'll update when I know more.

"How Are You?" aka Lump's Log Stardate 9/18/16 aka All The Shit I Am Not Handling Right Now

Originally posted on the What Friends Do Puff Family Blog, 9/18/16

People keep doing this thing when they see me.  They tilt their heads to the side and put on their ‘very concerned’ expressions, and they say, slowly and very purposefully,  “How *are* you?”


I appreciate the concern.  A lot more people care what is happening to me than I would have believed possible.  My community has really surrounded me during this up and down time, and it has been absolutely amazing to see how gracious and kind and helpful nearly evk,lnmmmeryone has been.  From posting memes on my Facebook timeline to cheer me up (Patty, you are seriously killing it here) to taking me out to get groceries when I can’t handle the world, to covering child care, talking me down when I’m convinced I’m going to die, organizing fundraisers, and leaving Rocky Horror Show tickets on my doorstep - and all the stuff in between - people have rallied to take care of me.  I am so thankful and so lucky to have the people I have.


I would make a really bad joke and say that the moral of the story is that you should always build community so that if you ever get cancer, someone will buy you Rocky Horror Show tickets, but that’s clearly inappropriate.  Then again, I already warned you when this whole thing started that I would be using a lot of inappropriate humor.  So I guess it stands.  Build community.  Or else you won’t get to see Frankenfurter when you have cancer.  And really, it doesn't get much worse than *that*.



Anyway.  How am I?

Physically, I don’t feel much different than I did before my diagnosis.  There’s a very long story here, but the short version is that I already had some health stuff going on, in large part due to an autoimmune disorder and thyroid stuff, and, it appears, potentially from some of the hormones this tumor emits that we just didn’t know about until now.

For awhile now, I’ve struggled with random bouts of fatigue, joint pain, and nerve pain (those latter two improve drastically when I cut gluten, for reasons I don’t entirely understand), as well as some difficulty in regulating my body temperature and weight.

So how do I feel?  I mean, not like the picture of health, but not any worse than I did before.  I’m gluten free now and the joint and nerve pain is usually gone, but it pops up here and there.  Fatigue comes and goes, just like it has for the past few years.  I still get these hot flash type things, which actually might be caused by the tumor.  I’m the same size I was last month.

So overall, I still feel about the same as I did before.  I’m more stressed and more tired, but that’s about it, as far as my body goes.

Emotionally, I’m struggling.  Understandably.  I feel, very much, that my life is on hold, and that it will be for a long time.  Hitting that pause button has been a big loss for me in a number of areas.  From the outside, some of them probably seem small or petty, especially considering that cancer is big and not even a little petty, but to me they are real.  I’m having to grieve some things that I feel like I’m losing right now, and that’s hard.

I miss my gym a lot.  That’s one of the things I don’t say out loud because I realize that it sounds small and vain, but to me it is not even a little bit small nor even a little bit about vanity.  It’s hard for me to know how to describe how important it is for me to normal people with normal body image, but I can try.  Some of my earliest memories of my dad are him food and body shaming me.  I was body shamed all growing up and as an adult, and it only stopped when I finally just stopped talking to him unless I absolutely have to.  I’ve been the fat kid, I’ve struggled through anorexia, I’ve had three term pregnancies and their associated weight gains, and right now my thyroid doesn’t work properly because my immune system is trying to kill it and I’ve been 25lbs heavier than I can accept for the last 3 years.  At this point my relationships with food and with my body would best be described as “It’s complicated”.  Or maybe “Holy hell, what a f*cking mess this is”.  Either way.

But I can walk into that gym and I can deadlift more than my husband weighs, and I can do handstand pushups, and I finally climbed that f*cking rope all the way to the top of the warehouse style ceiling they have there, and I know I’ve put in the time and the work to have earned those victories.

That gym is the difference for me between loving and hating my body.  It’s the way I reclaim 30 years of criticism about the way my body looks and turn it around into loving what my body can do and how those accomplishments feel.

In another 3 to 6 months, I’ll start over again.  I don’t know how much work it will take to be able to do those things again after being away for so long, and with recovery from a decently serious surgery.  I miss being there, and I have feelings I don’t really even fully understand about the loss of skill and strength I’m going to experience.  

So yea, I’m having a hard time with that right now.  

I also recently parted ways with the one freelance client I currently had.  I write grant proposals, and given that I didn’t know what the timeline would look like for treatment/surgery and recovery (or even the extent of the testing and treatment required), I decided that the best thing to do was to take leave from them, give them all of their files, and make a recommendation for someone to work with through my illness.  Grant proposal deadlines simply aren’t malleable, and without knowing when I would or wouldn’t be available or well, I didn’t feel it was appropriate to continue.  The last thing I want is for the organization to miss deadlines because of my health, or for my health to suffer because I have to meet deadlines at times when I’m not well enough to really pull it together.  To preserve the integrity of both, I stepped back for now.

That’s been hard as well.  I didn’t make a ton of money because I didn’t work a ton of hours, but the extra money I did make helped.  My client was a YMCA, and that’s also a factor that’s hard - it’s never been any secret that in the long term I hope I to return to a regular job in administration at the YMCA of Greater Fort Wayne, and keeping my foot in the door with an associated client is something that I valued a lot.

I was really looking forward to pursuing more work in the near future as my kids are starting school programs.  Instead of moving forward, I’m moving backwards, and that’s frustrating.

BWNI (Babywearers of Northeast Indiana) is the other big identifiable thing that I want to give my time and energy to, but that I’m finding I can’t in the way I want to for awhile.  In July, we finally had our first meeting of the Board of Directors and submitted our application for federal 501(c)(3) nonprofit status, which was approved.  

This group is my baby.  We started with a handful of families, and grew into *the* biggest and most comprehensive babywearing education program in this state, and it’s so important to me to protect that group and bring it to a point of long term sustainability.  We are making a huge difference in cutting into the culture of isolation for early parenting and improving outcomes for moms, babies, families, and early maternal mental health.  Early parenting was so hard and so isolating for me, and I’m passionate about giving new families resources so that it won’t be for them.

We’re going through an enormous amount of transition right now that really needs a lot of attention from me that I can’t give it.  I’m frustrated and worried about it.

So, not to be all Debbie Downer, but those are some things I’m struggling with and grieving right now.  They’re all things that have the value to me to be *worth* grieving, and I think that’s something to celebrate - that there are things that matter to me enough to be upset about not being able to do them.  So there’s that.  I won’t say every cloud has a silver lining because, holy sh*t, some clouds are seriously dark, but I’m thankful that there are some bright points here in what is a difficult time.

So, there’s your rundown on how I’m doing.  Now when you see me, you don’t have to feel compelled to look at me very seriously, choose the emphasis on your words carefully, and lean in to make sure you catch every word.  I so sincerely appreciate people’s concern, but at the same time I’m getting rather overwhelmed by it, because it’s coming at me constantly.  Every time I go out in public.  Every time there’s a family event.  Every time someone stops at my house.  It’s just getting hard for me to keep up with the emotions of everyone else - there are so many days when I’ll be doing better emotionally, and then I’ll be dragged right back down by a well meaning, serious ‘how are you’ that gets me thinking too hard about things and worrying again.  It’s hard to keep track of what I’ve told to whom and how comfortable I am with having that discussion right then and there.  Just this weekend I had the ‘awkward cancer discussion’ as I so lovingly call it, 3 different times, one of which took place in the middle of a straw maze, and I’m wiped out.  

 

Know that I’m mostly doing ok, but of course have struggles.  That’s pretty much the gist of it.  I am updating on our What Friends Do page and Facebook as I have more information, and I’ll continue to do that.  Of course, if you’re my best friend, you know when you can ask me what and if I’ll be ok with that or not ok.  And if we’re having a long discussion, use your judgment.  Small talk can stay small talk, though.  If you feel like you need to say something, a quick “I’m thinking of you and your family” or “I’m following your updates” is awesome and lets me know you care and you’re there.  But for right now I would really prefer not to have big discussions about the specifics of my health, my plans, my care providers, etc. as part of my small talk or greetings.  I really appreciate everyone respecting that as a way to protect my mental and emotional health right now.  You guys are seriously the best, and I couldn’t possibly ask for a better community support system.  

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.....