How to talk to people (us) about cancer

I’ve been on the receiving end of a lot of sympathy lately. I think for some this is a totally genuine part of being my friend. People are really stepping up to care for my family and it’s kind of remarkable to learn how loved you are.

For some, I think this is finally the chance to prove they can care for me, which is not something Andy or I typically need. For some, it kind of goes into sympathy overdrive and turns out to be more about caring for them as they try and care for me.

So, I thought a little guide about how to talk to people in crisis might be helpful. That way when you see us, you won’t inadvertently cause us to caretake you and you could actually alleviate some of the discomfort right now.

First, this article is great about the whole “who has a right to complain in this situation.” I highly recommend a quick skim, but this is the key take away in relation to the graphic below: “The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, “Life is unfair” and “Why me?” That’s the one payoff for being in the center ring. Everyone else can say those things too, but only to people in larger rings.”

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So, if you aren’t Andy, you don’t get to say “I don’t want to hear about something.” If he wants to tell you about the scary prognosis conversation he had to have with a doctor or about the really awful symptoms he’s experiencing, suck it the fuck up and listen. And then go find someone in an outer ring to dump to.

I’m going to go out on a limb here and say next to Andy is me. So, yeah, you have to listen to me, too. Ronan would be there, too, if he could talk.

After that I don’t really know how it breaks down. My hunch is most people can accurately place their distance on the map, but I know there are a few people who could prove to not really know how close of a relationship they have to me and Andy and could inappropriately cause us to caretake them.

(I’m not speaking about anyone specific here, but if you’re afraid it’s you…it may be something worth examining.)

So, first, do a gut check about if you are providing more comfort or dumping. Comfort in only. Aka, we get ALL the comfort. And Andy gets even more than me.

So what does that look like concretely?

When you ask “How are you doing?” do it in a way that doesn’t already assume we’re in a bad place. I mean, we are, but ask it neutrally, not it an all “awwww, how are yoooou??” followed by sad puppy eyes. That’s not comforting.

Also, don’t even ask this question if you aren’t prepared for an honest answer.

When we give you an honest answer, don’t just respond with “I’m sorry” or “That sucks.” Yeah, no shit. This is where being curious is good approach. Try on asking why something is the way it is, how something works, or, if we have gotten past the initial venting, ask how we can solve the problem and help us brainstorm ideas or offer up something.

When we tell you about something we are scared about, don’t say bullshit things like “Well, the chemo is going to work, I just know it.” No you fucking don’t, that’s not comforting and negates all the feelings we’re having about it. If you can’t manage going on the ride with us, then just keep your distance for a bit or, better yet, get some goddamn therapy.

Try asking about something good. You could ask us both about Ronan and we could talk for an hour about how wonderful our kiddo is. (He can sign “water”! He knows how to meow and bark! He walks around the house saying “good girl” to no one in particular! He loves anything related to transportation! He loves to climb!)

Tell us something that is going right for you and ask if we have any victories. I’m the more ennui filled one of us so I likely we be like Glum and say “nah,” but I can figure it out eventually. Today already I got to have scrambled eggs made with bacon fat and that was delicious. I’m writing this from the coworking space I’m a part of in West Seattle and that is also a good thing.

Talk about something unrelated to cancer. Tell us about a really good book, movie, podcast, etc. There are about 800 pop culture things we can talk about these days from Star Wars to…other stuff. I don’t know, but I bet you do. Sometimes celebrity gossip and nerding out about something is exactly what we need. I’m getting Andy into the podcast My Favorite Murder so if you’re a murderino, welcome him into the fold. You can talk to Andy about The Republicans and he will go on forever. Ask me for help with a work dynamic and I could go on forever. We are problem solvers so let us solve some of your problems.

Finally, if we cry, let us cry. No need to hug us, pat us on the back, or put tissues in our hands. Just put a box near us and then just sit and wait. We’ll tell you more and having simple human presence is usually all a person needs to get through the waves of grief that come on. A glass of water can help, too.

Finally finally, you can always offer to help. Come over and play with us so I can do crazy things like clean the kitchen. Sign up for a meal or offer to run an errand for us. Or, if you aren’t local, send us cards, nothing has to be in them, or ecards, or text us funny memes. Regular infusions of reminders that we are loved in this way are so, so helpful. The grief causes us to feel alone sometimes, even when we aren’t, so having this is concrete proof we are not alone.

And if all else fails, just ask if something is helping or hurting. Andy and I are pretty straightforward about how we feel about something and if what you’re providing isn’t ultimately helpful, we’ll tell you, but we’ll “Yes, and…” you and build on what you’ve already started. We’ve managed to retain some compassion during all of this.

Ok, so that’s my little guide about how to be a good friend in this time. I imagine it might be helpful in other moments of acute crisis like having a new baby, illness or injury, or…other stuff? Again, brain=goo.

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Will someone clean up this word vomit please?

You know most Thanksgivings I can come up with a substantial list of things I am grateful for. Everyday I can come up with at least 10. I live a pretty beautiful life.

But yesterday I was incapable of looking for things I am grateful for. Yesterday I was mad and scared and sad. Everyday I go through many cycles of grief. I come around to acceptance several times until I am faced with yet a new reality of this whole situation that requires a new cycle of grief.

Some examples:

Listening to Moana in the morning and thinking back on our trip to Maui in 2015 and how we likely won’t be able to explore all the Hawaiian islands together.

Watching Ronan dance to Moana and wondering if there will be a point where I won’t be able to listen to the music, not because my toddler has worn it out, but because of the other thing.

Watching Andy hold his niece at dinner, seeing how her beautiful red plaid taffeta dress spreads over his lap and thinking how, despite feeling like we achieved perfection the first time around and won’t have another kid, he will likely never be a father to a daughter. Or father in law to a daughter in law (or son in law).

How many more Thanksgivings do we have? I have a part of me that thinks someone has this answer, but isn’t giving it to me.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

The grief is triggering. I spend most of the day managing my anxiety about abandonment, unsteady attachment figures, a need to be more competent, more intelligent, more charming to get what I want, which is my husband whole, healthy, happy.

But, my full planner and overworked to do lists are not good coping mechanisms. In this time, I think I need coping mechanisms that balance the need to be ordered and the need to feel. I feel like I’m spinning 12 plates at once, but what I really need is a good workout or an orgasm.

Also, I need people to stop suggesting more things for me to do. I’m not going to seek out more doctors right now. I’m not going to suggest Andy try on essential oils or new diet. I do not want your suggestions unless you are someone who deals with cancer patients or have been part of the inner circle of someone battling cancer. Stop projecting your shit onto me.

I also need coffee shops to stop playing moody music. And I need a little break from movies where people who love each other lose each other.

I definitely would not be able to watch the opening scene of Up right now.

This time reminds me of when I was a new mom and I lacked the words to adequately describe just how fucking hard it was. Except now instead of balancing the feelings and work of welcoming a very wanted family member into the fold, we are trying to figure out how to keep one who is already in the family happy and healthy.

Health is so fickle, right? I hear a lot of language about how if people are just trying to be healthy then they can be whatever size they want and that’s the price of admission to being part of our society. But Andy went from presenting the healthiest he’s felt in the last 15 years to fucking Stage IV cancer. If that doesn’t highlight the reason why heath-ism is bullshit, I don’t know what will.

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Also, I’ve lost God.

I mean, we were never really tight to begin with. I sort of believed in the Universe or a collective unconscious. Last year I started playing with the idea of reclaiming some version of a Christian God.

Now, I can’t reconcile a lot of the language Christian religions use to describe God and God’s role in everything with what is happening.

Did God give Andy cancer? Does God really think we need to be tested this way? Are we less blessed because of this? Were we blessed to begin with? What is achieved by shortening Andy’s already shortened lifespan? How does this help me or Ronan or any of the other people who are clearly deeply affected by this?

God works in mysterious ways.

He sounds vindictive to me if this is how he chooses to be mysterious. Like the coworker who keeps using your half and half you’ve clearly labelled in the fridge as yours.

What if he’s the variety of God who stopped meddling? What if this is just a product of what he put into motion early on and we have to live with the outcomes? Then praying seems useless.

I’ve stopped praying. To a God anyway. I will sometimes have parts of me who will need to say out loud, “Please just let this all be ok.” I recognize these are parts of me who are young children afraid of losing the most protective, loving person they have had in their lives.

I don’t feel reliable. To myself, to my husband, to my son. If this all blows up, can I keep it together? I’m barely keeping it together. People keep commenting on how we seem to be handling this well. For sure I can present a version of myself that needs to be informative and accurate. I’m aware that there are over two hundred other people in the world watching all of this go down. (I didn’t even realize I knew that many people.)

I am aware of how many people want a silver lining in this.

Is it wrong if I can’t find a silver lining? I can’t find hope right now. I think in the whole large arc of the grief, I’m in Depression right now. (Denial, Anger, Bargaining, Depression, Acceptance–not necessarily in that order or with finality in any of the stages. Grief is not linear. Acceptance is not permanent.)

Ok, enough of this for now.

 

My breastfeeding journey start to finish

When I got pregnant I knew immediately that I wanted to breastfeed my little nugget. There is so much stuff in the world about how good breastfeeding is for babies that I was like “I’ll be damned if my son uses me not breastfeeding him as an excuse for his behavior when he’s in therapy.”

Andy and I attended a class all about breastfeeding and knew that pretty immediately we would want me to pump milk so he could be part of the feeding process. We’d watched a lot of dads be shut out of the really beautiful ritual of feeding their baby because mom refused to pump or just didn’t think to share the experience with dad. I also knew that if I was the sole person responsible for keeping our baby fed I would go crazy pretty quick.

But life is fickle and we were thrown a tiny curveball when our tiny curveball was born 5 weeks early. This meant while he was born with the ability to suck and swallow (some premies lack these reflexes because they are so early), he would tire himself out easily doing so. So we quickly shifted from trying to nurse to exclusively pumping.

Some vocabulary: “Breastfeeding” refers to a baby getting any breast milk, even if it’s not yours. “Nursing” is the process of a baby getting milk directly from a breast. So when people asked me if I was breastfeeding, I would say yes. This is a “thing” for moms and the medical community. Women want to fight with other women about how they aren’t really breastfeeding if they aren’t directly nursing and some medical professionals are behind on this change in the vernacular.

The women who want to fight about the right to solely claim breastfeeding are the ones who believe moms who pump are taking the easy way out by not attempting nursing.

In fact, I got several snide comments like “Did you even try?” “Why would you not give it to him directly from the tap?” (Do not get me started on all the misogyny that gets laced into this.) “Aren’t you afraid you won’t bond with him?”

And the thing is, we did try. I tried maybe a dozen times to nurse him, each time feeling euphoric when it worked (thanks oxytocin) and sort of frustrated when we couldn’t. After a few weeks of going to lactation consultants, one of whom told me I was overfeeding Ronan–hint: you cannot overfeed a newborn–we decided that this was dumb and we should just stick with pumping and bottles. Our pediatrician was behind us and so we became an EPing family.

This made things so much easier. I started by pumping 8 times a day, roughly every 2 hours with a longer stretch at night. This was when Ronan was still only sleeping in small chunks (a whole ‘nother post for another day), so I would pump twice on my overnight shift, usually during or after feeding him (it quickly became after when I learned the logistics of pumping and feeding a wiggly newborn just wasn’t going to work out).

I got a lot of praise for pumping. Other women were in awe at my ability to do it. I would correct them at first and then just stopped trying because, the thing is, I didn’t know any other way. I didn’t feel like I was doing anything heroic or special. I wanted to give my son breast milk, I didn’t want to try nursing anymore, so pumping was the default.

And my boobs were primed to give breast milk. Holy shit.

By a month into this whole thing I was producing a massive surplus. So much so that we had to move a chunk of my stash from our freezer to my mother in law’s freezer. My body wanted to make breast milk, so I went along with it.

I think moms who don’t have supportive partners in the whole pumping thing have it the worst. Part of what made it easier on me was Andy’s willingness to wash bottles and pump parts and troubleshoot how to make it easier. We bought extra pumping supplies, more bottles, and concocted an elaborate system to separate AM from PM milk so we could do ANYTHING to help Ronan sleep in longer than the 1 hour stretches he was doing at the time. If I had had to pump, prepare bottles, and wash everything myself for those first 2 1/2 months before Ronan learned how awesome sleep is, I would have stopped much sooner if my boobs would have allowed it.

When Andy went back to work in September, he prepared all the bottles for the day and washed all the pump parts when he got home. He had this ritual where he would put on an episode of a show on his phone, prop it up on the kitchen window sill, and go to town for the 30 or so minutes it took to get through everything.

I went from 8 pumps a day to 7 pretty quickly once we learned I could produce a ton of milk. I dropped to 6 when Ronan started sleeping in longer chunks, like 5 hours at a time, when he was about 3 months old. I dropped to 5 when he would only wake once in the night for a dream feed and dropped to 4 when he started sleeping through the night at 5 1/2 months. I wasn’t pumping 4 times at night, but as he got older I was making so much milk that the need to keep up with pumping to preserve my supply wasn’t as pressing.

It got harder when I was on a weird pumping schedule that didn’t quite coincide with his naps and he was less cool about hanging out in his crib for 30 or so minutes while I pumped in the morning. I dropped to 3 pumps when he was about 9 months old, which meant I had to carry pump stuff with me everywhere (I did anyway for emergency purposes, literally in case we had an earthquake and I needed to pump) and plan to pump in the middle of the day. I got really good at pumping in my car. I also had a recurring nightmare that I was in a car accident and couldn’t move or talk and no one would figure out that I was a lactating mom and pump my breasts. Overly full breasts are so uncomfortable. Like a full bladder but times two and on your chest.

I dropped to 2 pumps a day right around his first birthday, then down to one a few weeks later.

Dropping pumpings was hard for me. My body was so ready to make milk that I always ended up leaking and with clogged milk ducts, which feels like having marbles in your breasts. I was always afraid of mastitis, an infection in your breasts from clogged ducts that produces flu like symptoms and can escalate to to needing to have milk ducts removed if they become too infected.

Then I started to taper down to be done with pumping all together. I wanted Ronan to get enough breast milk to make it to one year from his due date and so, knowing I had an ample freezer stash, I tapered for the month of July thinking August 4th, a year from his due date, I could turn off my pump forever.

Ha. Haha. Hahaha.

Fucking overproducing, high achieving boobs.

I basically had to stretch out my single pump by 12 hours every day. So at 24 hours since my “last” pump, I pumped again. And then 36 hours later, then 48, then 58 (didn’t quite make it that day), then 72. And I couldn’t make it past the 72 hour mark. I would start to leak so I would just pump and get an ounce in my 5 minutes of relief pumping. Stupid ounce making such a ruckus.

I eventually got the advice from a fellow mom to bind my breasts. So I wore tight-fitting sports bras for 3 days with my breast pads tucked in to collect any leaks. And, voila! It worked. So now, here I am, officially off the pump a week later, no leaking, no clogged ducts. Done done done!

Here are some things I learned in the process:

Some medical professionals, including lactations consultants, spread outdated information about pumping.

I can’t tell you how many moms I talked off a Facebook cliff about their milk supply drying up because they pumped or that they’ll never be able to produce enough to keep up with their baby. The trend I’ve observed through really scientific Facebook research is women have the same experience pumping that they would have had nursing. Meaning, if you were an overproducer, underproducer, or just-enougher while pumping, that is likely what would have happened while nursing.

Some will also say that if you give your baby breast milk that you pumped months ago, that it won’t be as beneficial for your baby. Not really. There are some micronutrients that might be in slightly different levels, but largely your baby is going to be fine.

Also that you are doing your baby a disservice because you don’t latch and therefore your body doesn’t make milk super specially formulated for your baby. Yeah, that’s false. Your body figures out what kind of milk to make by getting info about your baby when you kiss, hold, touch, or get slobbered on by them. Pumping moms’ milk changes just like nursing moms. One week we had a stash of milk in the fridge that included white, yellow, blue, green, and purple milk. Obviously Ronan and/or I was going through something.

One mom even reported to me that their lactation nurse said her uterus wouldn’t contract when she was pumping, only when she was nursing. Mmm, k.

Get all the supplies you could need.

Mom groups are ripe with women offloading their pumping supplies, often for free. I got 6 full sets of pump parts from a mom selling them for $15. I also got a total of 6 pumps for free from people, most of them never or barely used. I would give most of these away to other mamas who needed new pumps but their insurance didn’t cover the cost. Fortunately we saved 2 and I used one when my hospital grade pump, Bertha, had to get returned. The second one was used for spare parts, which was mighty helpful with the battery pack died on the first one.

If you’re a mama who has a pump that doesn’t work for you, check with your insurance to see if you can get a new one. I heard a lot of bullshit from moms saying they didn’t respond well to the pump when, in fact, their pumps were broken, or didn’t properly mimic the way their babies would nurse. I had 3 mom friends who all had pumps that legit didn’t work and they thought that it was because they just weren’t suited for pumping.

If your insurance won’t replace one, ask around in a mom group. Chances are there’s someone like me who hoards pumps and would just love to give you a spare. Also, Groupon is ripe with deals for breast pumps. Fer realz.

There are all sorts of things about pumping that freaks people out. 

Probably because anything that has to do with women’s bodies is inherently laden with misogyny, but women who pump get the same kind of ire that women who nurse in public do. It makes people deeply uncomfortable. I was pumping one day at home and had a guest, who, despite saying it was fine that I was pumping in front of her, was clearly so uncomfortable that she didn’t mention when the front of my shirt was suddenly soaked in milk because I was overflowing the containers I was hooked up to. I couldn’t feel it because my shirt was pulled away from my skin over the pump parts. Look, it’s not a spaghetti sauce stain. See something, say something. In terrorism and in breastfeeding.

Also we hear about how you need to “pump and dump.” Not so. Unless you are black out drunk, you filter alcohol out of your breast milk a little more efficiently than you do out of your blood, so if you’re ok to drive, you’re ok to pump. Some women who would prefer not to use milk after pumping either dilute it with other milk or use it for milk baths.

Some people say the rudest fucking things.

I got compared to a cow more times than I care to count. Which, you know, is an animal that women are always favorably compared to.

I was asked if I had even tried to nurse. Whether I had or hadn’t was no one’s goddamn business, but it was particularly offensive to ask me, the one who is such an overachiever that even her boobs can’t chill out, if she had attempted nursing. Uh yeah, I live in one of the most liberal hippy cities in the country, of course I did.

I was told I would have a hard time bonding with my baby. I mean, he came out of me, so I think we’ve got that covered.

I also got a lot of side eye from women checking out my bottles who couldn’t tell if I was giving my kid formula or what. Even if I was, who fucking cares? Seriously, liberal ladies, we have got to stop shaming moms for choosing formula, whether it’s instead of breast milk or in addition to.

There’s a lot more to this, but I’ll stop here for now because I want to enjoy my chocolate chai. My breastfeeding journey has been incredible. I truly enjoyed almost every moment of it, which is not something I think a lot of women can say. Not many moms know exclusive pumping is an option. My hope is that we eventually give information about it not as an aside to nursing, but as a whole, separate option for women who want the benefits of breast milk but can’t easily nurse. We have a lot of hurdles for moms to clear in the early days of motherhood, easily and safely feeding our kids shouldn’t be one of them.

 

Final total of breast milk produced: 339,033 ml or 94 1/2 gallons.

A couple-a questions

A Facebook friend posted these in honor of Valentine’s Day. I love talking about Andy and our relationship and our family, so any excuse to talk more about it, I’ll take.

Who’s older? Andy, by 15 1/2 years.
How long have you been together? 8 years on March 1st.
Who was interested first? I think it was pretty mutual. We warmed up to each other at the same pace, but once we were official we fell hard.
More sarcastic? Both of us. It’s one of our many compatible qualities.
Who makes the most mess? Both of us…he leaves more laying around, but when I make a mess I make a MESS.
Who has more tattoos? Me. I have one to his zero.
Who’s the better singer? Me. Though he makes it funnier.
Hogs the remote? Neither of us.
Better driver? He drives us around more. I think we’re both good drivers.
Spends the most money? Me. I buy all the necessities, pay the bills, etc, and make sure we get the occasional fancy coffee and clean clothes.
Smarter? Me on humans and their behavior. Him on everything else.
Whose siblings do you see the most? His. Though mine live 3000 miles away. I have a feeling if my brother lived closer we’d see him, his wife, and his daughter a whole bunch more.
Do you have any children together? Yes! Perfect little Nugget.
Did you go to the same school? Nope.
Who is the most sensitive? I am sensitive about a lot of things. When you hit his threshold on the few things he takes personally, it’s pretty intense.
Where do you eat out most as a couple? Burger places: Red Robin, The Ram, Elliot Bay Brewhouse. Also we enjoy a good fancy coffee and pastry.
Where is the furthest you two have traveled together as a couple? Austria.
Who has the worst temper? I slowly simmer about more. He’s explosive about less.
Who does the cooking? Me. Man has no sense of smell, but he makes a mean scrambled egg.
Who is more social? Me. Though he sees his friends every day at work so work is like social time.
Who is the neat freak? Me. We both like a clean house but since I work from home and stay at home with Nugget, I want it more clean.
Who is the most stubborn? Him. We had a whole pre-baby conversation where he admitted to his intense stubbornness. Though if I present a pragmatic, fact-based argument, I can sway him. It’s like being in debate club, but it keeps me checking to make sure, A. it’s a fight I want to have and, B. I actually have good reasons.
Who hogs the bed? Neither. It’s why we got a big bed and separate comforters.
Who wakes up earlier? Me always. Pre-baby, post-baby, I’ve always gotten up earlier.
Where was your first date? Officially? His apartment.
Who has the bigger family? Our immediate families were the same size, but now his family is bigger due to divorce/remarriage/step-siblings/nieces and nephews.
Who does the laundry? Me mostly.
Who’s better with the computer? Him. I mean I can type and deal with HTML, but he knows his way around electronics better than almost anyone I know.
Who drives when you are together? Him. I love it when he drives and so does he.
Who picks where you go to dinner? I usually offer suggestions and he picks. Sometimes my suggestion list only includes one place.
Who wears the pants in the relationship? Both for different things. Though I resent the premise of this question.
Who eats more sweets? Me while I’m breastfeeding. We both have pretty raging sweet tooths and giving each other treats is one of the main ways we show love!