Cancer giveth and cancer taketh away

FYI the actual bible verse is Job 1:21 and it goes: “He said, ‘Naked I came from my mother’s womb, And naked I shall return there. The LORD gave and the LORD has taken away. Blessed be the name of the LORD.'” That’s from the New Standard Bible. So update your internal pop culture compendium, y’all.

Gang, it has been a wild couple months.

I started the new job and it is a doozy. I downloaded with my ProConsult group a few weeks ago and they were like, “That’s probably only 10% and I’m already overwhelmed.”

Fer realz.

So I’ve been complaining a lot to my inner inner circle. Two of my besties had to give me a reality check when I said I was feeling like I needed an attitude adjustment. Both were like, “Um, you’ve earned the right to complain.” And when I said that I was worried people were thinking I should have my shit more together by now, one was like, “Yeah that has never even once crossed my mind.”

SO! In an effort to process all the stuff in my head, I wanted to do a little thing about what cancer has taken from us, but also what it has given us. Well, specifically, what it has given and taken from me.

Taken

This list is ever expanding so I’m going to narrow it down to the top 3 and they are hopefully things that I haven’t talked about already. But if they are, WHATEVER, IT’S MY BLOG.

Connection. A woman in my caregiving group said, “I’m with my husband more than ever, but really I’m so lonely.” This is exactly what I’m feeling.

Andy and I spend a ton of time together, but it’s all in the presence of other people who are medical professionals or other cancer patients or people who really want to know how we’re feeling and spend a lot of time asking a lot of questions to seem like they are being supportive. (Don’t worry, it’s not you.)

Out emotional bank account is close to being overdrafted pretty regularly. Our limited time we used to spend having deep connection in the form of challenging conversation about self-awareness, growth, love, and politics has now been reduced even more. We basically give each other highlights in the 15 minutes we have when I’m in bed and he’s gotten home from work. Baby free time is spent resting for both of us, rarely are we in a restaurant or coffee shop or on the couch and feeling fed, watered, physically comfortable, and logistics managed enough that we can move on to more intimate conversations.

Just this morning we used a breakfast date to determine what additional insurance we wanted to add to my work benefits. Truly stimulating conversation.

This lack of connection is truly surprising to me. I thought with all the time we’d have during chemo or car rides to and from doc appointments we’d be able to check in regularly. But really we’re both so fried that we just watch TV or listen to the radio or he sleeps and I write.

Sex. Imagine having a low-grade flu all the time and that’s basically what Andy’s experiencing. Add the work of a new baby and that’s basically what I’m dealing with all the time, except I’m down an adult. Sexy, right?

I had an extensive conversation with one of my caregiving groups about physical intimacy. A woman who’s husband is in the end stages of life mentioned that they hadn’t had sex in over a year and how disappointing it was to realize their last time was their last time.

I have a couple of friends who are giving me their version of essential oils and insisting that we need to be having sex. Ok. Sure. Fuck off.

Did you know chemo creates toxic bodily fluids? (Sorry, parents.) So if we were having sex, we’d have to go back to barrier methods because I could get very sick. And I don’t have the brainspace for dinner some nights let alone condom shopping, so that isn’t a thing.

When Andy had his chemo holiday a couple weeks ago we thought we could have sex then. But then he got the goddamn chicken pox, so that was a bust.

He insists we haven’t had our last time, which I believe, but I know it will be a while before sex re-enters our lives again.

Money. I know you think you know about how expensive cancer care is, but you really have no idea.

Sure, we have the usual medical expenses, but we also pay for parking, hospital food, child care, medication, special food when Andy doesn’t have an appetite for something, supplements for protein, muscle spasms, and energy, stuff to hold stoma supplies and medication, modifications to our house to hold all of this, lots and lots of soap. And all of this is done on the same or smaller income than before. Because even though I have a job, it’s just barely making up the difference in Andy’s missed salary.

I’ll do some kind of accounting at some point, but it’s expensive. We collectively suck at helping people through illness so it isn’t a huge financial burden. No wonder so many people accrue medical debt. We likely will, also. Again.

Given

CommunityWorking in theatre, we always knew we had a tighter community than the average human. But having cancer made it abundantly clear to us just how tight that community actually is. The Willhelm Army Facebook group has over 100 people who are just hanging out waiting for something to do.

I know that when the time comes to ask for what we need during the HIPEC, it will not be even half as hard as a normal fundraising campaign.

We are cared for and, for the most part, have people willing to offer their help if we can articulate what it is we need.

A sense of ability. Prior to cancer, I spent a lot of time questioning how good I was at managing all the stuff that comes with being a new mom.

I was not great at the sleep deprivation and the unknown outbursts from an unhappy baby. In talking to my therapist, I realized it was largely triggering feelings of trauma from when I would walk around my house as a kid and be unsure when the hammer would fall. This is also why I had to leave stage management. The need to jump and answer to the sometimes totally fucking unnecessary whims of narcissists and egomaniacs was not good for healing.

But, when the dust cleared post-diagnosis, there were moments where I would be driving with Ronan in the backseat, coming home from work or a client meeting, or picking him up from his caregiver and I would think, “We can do this.”

And this means both the current push through cancer and if the moment happens where it’s just me and him.

We can do this.

I keep that in mind when I start to feel weak. When I have co-workers who get snotty about something or get frustrated with idiot drivers or whatever. (Why can’t people just do a damn zipper merge?)

We can do this.

Or, more specifically…I can do this. 

Clarity. Prior to all of this, we knew we were a lucky family. We knew we were living a beautiful life full of love and we routinely marveled at how we kind of had this “deep, loving, respectful friendship/relationship” down.

Now, we have the good fortune of being aware of just how good we have it.

When Andy got the diagnosis and we were thrown numbers like “18 months” and “2 years,” I asked him if there were any undone things he wanted to do. And after a moment’s pause he would always say, “No.”

Sure, I would love to travel with him and see more movies and eat more good food and have him watch his son grow up (that last one in particular).

But in reality, our life is idyllic, lovely, challenging, and kind of perfect. We don’t need to have any major bucket list moments because our life is already beautiful and doesn’t need anything additional to make us feel fulfilled. We live a beautiful life and we just want time with each other.

We want time to snuggle with our kiddo and watch him try to eat eggs and go for walks and look at the mountains and drive around with a fancy drink in the cup holder. Really, just living day to day life for us is lovely.

And without cancer, we would not have realized that. We likely would have spent the rest of our lives chasing the next vacation, the next car upgrade, the next chance to renovate part of the house. Now, it’s all about making choices that enhance our already beautiful life.

Which, tbh, may include a vacation, but most likely just burgers for dinner so we can watch another episode of the West Wing.

Advertisements

Birth Story Part 4: Labor and Delivery…Part 2 (Final, I swear.)

Want to read Part 1 or Part 2 or Part 3?

When last we left our intrepid heroine…

I was about to get my water broken in hopes of kicking me into actual labor. I was 6cm dilated, relatively pain free save for a very rude Cook catheter.

I asked Dr Flum, the doctor on call that day, if I could shower and have breakfast before we got started. I was showing no signs of problems from the magnesium, so she thought it was a good idea.

Ok, a little bit of transparency into my life: Andy and I love to shower together. It’s never a Thing, but more an opportunity for us to check in, say hi to each other, hang out, like watching Netflix but also getting clean.

Back at the hospital, Andy got his swim suit on and acted as my lifeguard in the shower. I showered with the dumb portable fetal monitors on, Andy holding onto one arm the whole time. Moving was very hard at this point with the fetal monitors, Pepe (my IV stand), some weakness from the magnesium, and the whole being pregnant thing, plus I had been essentially bedridden for the last week and was feeling the soreness and stiffness in my muscles.

I emerged clean and ate a hearty breakfast while Andy and I chatted with the nurses and my doula, Kim. My Labor and Delivery nurse for that day was Joy. I kept wanting to call her Amy because I swear she looked like Amy Schumer. But she fit her name, Joy, and was an absolute pleasure to have around.

After breakfast, at 10:15a, Dr Flum arrived with one of the residents who had been with me through most of the journey, Edie. Dr Flum pulled out what looked like a long crochet hook and had me lean back on the bed. I felt absolutely nothing except a giant rushing of warm water all over the bed. Dr Flum said she’d check back with me later.

15 minutes later, it started. The contractions came on stronger. I was breathing through them, Kim pressing onto my low back while they crested, Andy holding my hand or talking to me. It was a strategy we worked out in our birthing class. I took deep, yogic breaths, trying to steady my body. I thought, “Yeah, I can do this. I can do this.”

3 hours later, it got decidedly more uncomfortable. It wasn’t comfortable before that, but it felt like the kind of cramps I experienced when I was in high school before we knew that hormonal birth control would make the first few days of my period easier on me. I knew this feeling so I would breathe and breathe and breathe. It would dissipate and I could relax.

This new feeling was un-fucking-believable. It hurt so much. My back, my thighs, my belly, my chest, everything would tighten up and I would have to work so hard to get a breath in. I remember when I was 12 and I took a really bad fall during a ski trip and tore my meniscus in my knee. I remember the feeling of not being able to catch my breath because of the pain where the only thing I could do was sob and hope my breath would come back.

This was worse than that.

Kim suggested I try different positions. I had a sense of what would have felt good, but all the cords and wires and this goddamn belly meant that I couldn’t really get in the position I wanted. Plus my feet and hands were still swollen, so putting pressure on them was unbearable after about 5 minutes because everything would fall asleep, not good while in labor.

At 1:30p Dr Flum did a progress check, 8cm along. They decided to put an internal fetal scalp electrode on my son’s head to monitor him better. I could be free from the external monitors and have slightly more mobility. I had 3 things hooked up to my keychain, what was another wire coming from my vagina? This turned out to be a great idea. We could hear his heartbeat and track the contractions better.

I remember looking at the clock around 2:15p and thinking, “This has to be over soon. I want pain meds, but we have to be coming to the end.” Part of all the discussions of pain medication, we had been told that if they thought I was within an hour of delivery they would not give me an epidural or fentanyl. The magnesium was going to make my son floppy already and the pain medicine would make him even floppier, possibly making it difficult for him to breathe.

I kept going.

I found myself constantly saying, “Come on.”

I would say this to my son, “Come on, enter the world.” To my cervix, “Come on, open up.” And to this fucking intelligent designer, “Come on, really? This is what I have to endure?”

I vividly remember clutching the side of the bed and thinking, “I am never doing this again.”

We found a position with me sitting on the corner of the bed, my head against Andy’s chest. I would hold his hands and breathe, breathe, breathe, through the contraction. Then the swell of oxytocin would make me so sleepy, I would close my eyes and sometimes doze against him.

Over and over I did this, Andy at one point just holding my head and saying, “I am so proud of you. You are so strong.” This was the encouragement I needed.

At 3:30p Dr Flum did another progress check: 9cm. How did I have another centimeter to go???

At 4p I said, “I need to push.”

I can’t explain the feeling of this. It was so overwhelming, so all-encompassing a feeling. Pushpushpushpushpush.

I was told to hold, wait for the doctor.

It was like holding in a giant poop after I had food poisoning, only worse because I had my whole body telling me to push, not just my digestive system.

20 long minutes later, Dr Flum arrived. I had a little lip of my cervix left, which she manually moved aside. This was more rude than the Cook catheter. She felt a contraction while that was happening and all I could do was moan and try and keep still.

At 4:22 I made my first push.

Sidebar: During all of this talk of gestational hypertension and preeclampsia, the thing I kept hearing is that I could have a seizure. I didn’t know what this would be like, but Dr Hannon, a doctor from earlier in the week, told me that I wouldn’t feel anything, I would “just wake up and not know what had happened while the rest of us worried about you.”

After my first push, my son’s heart rate plummeted and the put an oxygen mask on me. I thought for sure the oxygen mask was because I was going to have a seizure. I started to panic but listened for my doctor’s voice. At this point about 6 people were talking to me, so I just kept trying to hear what Dr Flum was saying.

“You’ll have to get him out in one push,” Dr Flum told me. She asked if she could use a vacuum to help and I, of course, said yes because, duh.

We waited for another contraction. This goddamn contraction took 6 MINUTES TO ARRIVE.

Finally, Dr Flum told me to push, we couldn’t wait.

I pushed as hard as I could, I paused to catch my breath and everyone was screaming, “Push push push!” I pushed again…

And my son literally somersaulted out of me. His head landed in her hand and his legs flipped over his head.

4:34p, Ronan Lon Willhelm made his entrance into the world. Wassup, kid? We’ve been waiting for you.

I learned later that Dr Flum called me one of the best pushers she’s ever seen.

I’ll take it.

He came out screaming. Dr Flum cut the cord, Andy trimmed it at the warming table, and my son was deposited onto my chest.

Someday I will write more about this moment. A lot happened for me in the 20 minutes I held him. Edie stitched up my one first degree tear, I delivered the afterbirth, Andy looked lovingly on at me and Ronan, tears streaming down his face.

They took him up to the NICU at 5p and I had dinner around 6p. I got text updates from Andy about his progress, his measurements, what was happening.

I updated Facebook.

Screen Shot 2017-06-28 at 5.13.34 PM.png

Since this post is already almost 1500 words, quick summary of the aftermath.

I had some dizziness when they were trying to transfer me to the postpartum wing. Turns out my uterus had clamped down pretty fast after delivery and a clot got stuck in my cervix, so my uterus was still bleeding and filling with blood. The doctor that evening had to remove the clot, which is how I ended up with the most expensive painkiller in the hospital: Liquid Tylenol. Yup. Turns out that puppy is the most expensive and largely reserved for people like me who can’t have more intense painkillers because of blood pressure issues.

After he removed the clot (fingers in my newly raw cervix, blood everywhere, fun) I lost over a liter in blood. They were going to monitor me but chose not to give me a transfusion.

We went up to the NICU to see our baby. He was a monster compared to the other babies, who were all barely larger than a good steakhouse potato. He was beautiful. I wanted to keep holding him. I did not have that “in love” feeling people talked about, but I didn’t want to let go of him. Andy and I would eventually have to have a very serious discussion about holding time since we both wanted to hold him all the time. We eventually left the NICU around midnight so I could get some rest and would return around 6a to do some more holding and feeding. Moms with complications like mine are encouraged to rest more than anything so we can be adequately recovered to actually care for our babies.

The funniest thing happened on our way up to the NICU and on our way to postpartum. Apparently word got around that after 3 days on magnesium sulfate and 2 days on Pitocin, I didn’t deliver with any pain medication on board. This, apparently, warranted all the Labor and Delivery nurses, including those I had never met, to come and give me congratulations. I didn’t have the heart (or brainpower) to tell them it was purely my own idiocy assuming we were close to the end that prevented me from asking. I would have wanted the drugs.

Andy was adorable and told anyone who didn’t outright congratulate me about my feat.

We stayed in the hospital for 2 more days, Ronan would stay for another 11. We brought him home on July 10th, spending most of our days at the NICU, holding our son, me pumping breast milk every two hours for him, eating lots of sandwiches and pita chips and chocolate with hazelnuts.

And that is the story of how Ronan came into the world a little over a year ago.

I’m a fortunate lady in that my husband and I don’t spend months apart from each other. Neither of us are in the military or travel for work or even have 24-, 48-, or 72-hour shifts for work. We almost always have a guaranteed day off together.

But…these past couple of months have been hellish in a way I can imagine starts to approximate what these families feel.

Andy was in tech for his last show of the season. It’s a disco musical about Imelda Marcos called Here Lies Love. I saw the show on Tuesday and had some feelings about it, mostly good. The process along the way did not leave me with good feelings, both as an organizational development professional and as a spouse.

Here was my Facebook post from Wednesday morning about it:

Screen Shot 2017-05-05 at 4.10.51 PM

Andy was in tech for essentially 2 months. He worked roughly 8a to 10p, 11p, or midnight Tuesday-Sunday until opening.

“Oh, but the money must have been really good,” is usually the response I get.

That’s not the fucking point. I actually really, really like my husband. I wouldn’t be a parent if I didn’t have him to parent with. I would have happily remained single with a cat in my studio apartment for the rest of life if it weren’t for this dude. He made me understand what a true partnership looks like and the desire to be a mom was mostly fueled by the thought of being a parent with him.

So going this long without him was uncomfortable in a way that is hard to describe.

For one, we have a lot of messages in this country that tell moms that they should be able to suck it up. Work is king and parents who want to be with their children are missing the love of work and the almighty dollar. How many characters in pop culture glorify work to the detriment of personal relationships? My favorite women on TV are CJ Cregg of The West Wing, Liz Lemon of 30 Rock, and Leslie Knope of Parks and Recreation. All of whom love their work and are rarely seen having romantic relationships or children.

So there is a lot out there telling women that if their (often cis- hetero- male) partners work a lot, well then they should be able to handle the house and the child(ren) and maybe even their own careers…or not, we are conflicted as a culture about how we feel about stay at home moms.

During this extended tech, Ronan experienced his first bought of stranger danger/separation anxiety. This meant that a kid who was previously ok to sit and play by himself or bounce in his jumperoo now needed to be carried and held and taken everywhere with Mommy. Even putting him on the floor next to me while I worked at the kitchen sink was no good enough. He need to be in my arms all the time. Of course this meant that there were many, many tears shed so I could prepare food or pump or fold laundry. He learned a lot of lessons about how you won’t always get what you want from Mommy because she has shit to do.

I spent a lot of time talking to him, explaining what I was doing. Whether he understood it or not, it clearly made no difference since it often meant he would just cry harder.

He also went through a sleep regression. We’re lucky because his sleep regression don’t upset nighttime sleep except to make it a little shorter sometimes, but it makes naps harder or much, much shorter. So when he would need a nap he would cry and cry and I would have to choose, do I go in and try and soothe him to sleep or do I just let him cry himself to sleep? A few times I would get him in bed with me and sleep with him. And by “sleep with him” I mean he would fall asleep next to me and I would lay in the dark contemplating how much I hated theatre or I would try and read articles on my phone with the screen turned away from him so the light wouldn’t wake him up.

I tried to visit Andy at work as often as possible. We’d go and have dinner with him a couple of times a week. So in the 168 hours in a week, we would see him awake for maybe 12. Most of these would happen on his day off where I would take Ronan out of the house on Monday mornings so Andy could sleep in. We’d reunite around 11a after a morning nap and then would have lunch together and maybe run an errand or two before retiring at home for the evening.

Maybe this kind of interaction works for people who feel poor to middling about their partners. For us, this was hugely devastating. We have developed a household that requires an interdependent partnership. While I can do dishes and keep the house sort of clean without Andy around, there is no joy in it. I felt both listless and buzzing with untapped energy. Caring for a baby 24/7 took a lot out of me and down time was not spent working on my own business or projects, but rather trying to relax and recover from being attached to Ronan all the time.

Ronan also started to really take to solid food during this time. Rather than do what I used to do and just make meals of smoothies, scrambled eggs, and yogurt, I wanted to make sure I developed his taste for a variety of foods and had to cook every meal for both of us. The benefit is he got on a very regular eating schedule and was able to halve his milk consumption, so I dropped from 3 to 2 pumpings per day and am now dropping down to 1.

Putting my personal life on hold during this time was the worst. I was lucky as a new mom that I never felt fully like I lost myself. I had to deal with a lot of new feelings, but felt firmly rooted in my personality during the early days. During this process I sacrificed working or had to work during time I wanted to be with my family and had no time to get ahead on marketing and sales or to write.

So not only was I missing out on personal expression, but I couldn’t even access the self care tools to managed that lack of expression.

Workout out went out the window because I was so fatigued. Not exhausted, which implies a physical lacking, but fatigued. My brain was constantly fried from all the logistics and while I’m sure a good workout would have helped, I could not muster the energy or wherewithal to put a DVD in while Ronan was napping. Working out would mean having to shower, which would mean dealing with a baby who would scream about separation, even if he was in the shower with me.

I didn’t and haven’t meditated since this process started. Any attempt could only be right before bed and I would fall asleep immediately.

I think I ate maybe 5 vegetables the whole time? I don’t know. Not many vegetables were eaten.

I envied moms who could go to work during the day, but then thought this was an example of the grass being greener. They likely envied my ability to be with my son all day.

I just wanted a fucking break. Many days I still do want a break from being the lynch pin in my family. So much revolves around me to keep everyone healthy and happy and at their best. I can’t imagine not doing it because doing things like tracking toothpaste and stressing over a lack of vegetables is just what I do. I was raised to do this both by my family and my culture. So when I was complaining to a friend and she offered that I “just not do it,” I honestly couldn’t imagine that.

Did I mention our cat died during this?

Yeah. Our sweet almost 17 year old kitty took a sudden turn on a day when I had a phone interview for a job I really, really want and I had to schedule a vet appointment in the 10 minutes before the interview and then rush him over there after. I called Andy on his dinner break and we decided to put him down. It was awful in a way that words cannot capture.

1426197_10103894833733823_814343307_n
One of my favorite photos of Gus trying to stay warm

I thought a lot about the cost of art during this. We joke about artists suffering for their art. People imagine van Gogh cutting off his ear or the deep depressions and slight eccentrism of characters like Beethoven in Immortal Beloved. But there is a point where the cost is too high. I think this is my upper threshold. Art is worth it provided mental and physical health doesn’t end up on the line, as it did in this situation for our family.

What kills me is that my work is all about making organizations as effective as possible and I consistently saw and heard things that made me cringe thinking about the wasted money and effort on certain aspects of this show. I heard about lighting in greater detail, so I can’t even imagine what was happening in other departments at the same time. Organizations like the Rep that want to grow seriously need someone like me on retainer, or at least to come in after things like this to run postmortems. Otherwise little learning gets done and we are doomed to repeat the same (preventable) mistakes.

Now the show has been open for 2 weeks and we are just now starting to feel like normal. Andy and I had a day date yesterday where we split a burger and took a leisurely walk on the beach while the nugget was with my mother in law. I no longer feel desperate or fearful when he leaves the house–a symptom of my postpartum depression that I managed to keep at bay. I no longer feel deep irritation over small things because he is now reintegrated into the management of the household. We’ve even made some progress on small projects around the house and I have had 2 successful job interviews and started working with 2 other clients.

Parts of me are still very, very angry about this situation, as evidenced by the nearly 2000 words in this post. I desperately want a call from the powers that be at the Rep to bring me in to help them do better and actually learn. My knowledge of the people, the process, and love of the organization would make me perfect to facilitate this.

But, I know that the Willhelm household will be running our own postmortem one of these Mondays so we can hopefully be better prepared the next time a show of this magnitude and impact comes along, as it very well should if we hope to see theatre in Seattle grow.