Make A Wish

My daughter's Make A Wish trip was last week, and it turned out to be the perfect time to get out of town. It was between appointments, after we all kicked the winter crud, and in that time when Christmas wears off and there's still too much winter left with nothing much to look forward to. Of course, escaping wasn't without some drama. I personally developed a full body rash the week before, just in time to be in a bathing suit. Note to self: don't switch deodorants and soaps just because something new smells good. Also, there was an impending ice storm that led to the canceling of our flight to Florida and us having to drive at the last minute. The stress of that definitely did not affect my rash situation at all/s. 

But, we made it out. I got steroids and lots of lotions, and no one thought I was infected with measles.

We ended up leaving for Florida on Saturday morning before the ice storm came through. We stopped in Savannah for the night before driving the rest of the way to Cape Canaveral the next day. My initial thought was that driving would give us an extra vacation day - we could go to an amusement park or a museum. I actively looked up options. But, I decided instead to take it slow, not worry about having an agenda for the trip, and just follow my kids' lead. 

It was nice. We went to Dave & Busters in Savannah and putt-putt in Florida. On the ship, we did activities the kids were interested in and ignored everything else. They did not care about meeting all the characters. They did not care about going to any shows. They did not care about staying up until 10 pm to see fireworks. They did not care about going to a dance party the last night. Instead, we sat around the pool deck watching movies. We spent an hour playing Connect Four and making patterns with the giant checkers on Castaway Cay. We spent way too much money on stupid souvenirs. We ate ice cream and watched more movies in our room. We did not talk about cancer. 

Make a Wish was really great. We had a nice room with a balcony. We had a gift bag waiting for us when we arrived. They arranged for the girls to meet all the princesses and Mickey and Minnie. We had a dinner table right next to the stage in Arendelle and all the characters said hi. They got us free rentals on Castaway Cay and gave us spending money for the ship. They paid for the $200 cruise photo pass so we could get all the professional pictures for free.

Even with all the perks, I learned that cruises maybe aren't my thing. There were people everywhere all the time. There were lines for everything. The food was only ok. After 4 days, we were all ready to come home. 

Friday, we disembarked in the morning and then drove the 8 hours home, stopping as little as possible. Friday night, it started snowing and it didn't stop until sometime Saturday night. By Sunday, we had 13 inches of snow at our house. 

This coming weekend, my daughter and I will fly out to San Francisco again for another MRI that will tell us whether the medications are working or not. The last scan showed a new tumor in her cerebellum and some regrowth near her ventricle. I am both hoping for stability and trying to mentally prepare myself for more progression. Regardless of what her brain cells are doing, I am grateful for the fact that we have had the last 9 months without symptoms. If I could stop time and live in this moment, I would.

We come home from that trip on Tuesday 2/10, spend two days at home, and then fly to Houston 2/13 for a wedding. Any decision about future treatments can be made after that. One thing at a time.  

A Song from My Road Trip Playlist

Lavern, "Sunshine"

Compartmentalizing

Yesterday, someone asked me if it was ok to share a Facebook post I made with an update about my daughter and a link to a research fundraiser. I don't post there typically until after I've mentally processed everything and feel like I can handle all the comments and messages. So, yes, it's fine. I made my page a digital creator page so that people could follow me if they wanted. My main thought was so that parents in the brain cancer groups I'm in could see more about treatments and disease progression. It has been really helpful for me to creep on others pages and just see where they found success and where they didn't. 

I thought about making a page specifically for medical updates as so many people do. But, I also don't want a lot of strangers following our "cancer journey." I heard it called emotional tourism when people get so caught up in strangers' lives and drama and illnesses, and it felt like a really apt term. I'm definitely a page creeper and have for sure done my fair share of emotional tourism, but I don't want to put myself in that position. It feels a bit gross on this side of it. 

So, even though some of my posts are public, I am still trying to think about what I am willing to share there and what I'm not. The private side of me doesn't understand the people who constantly post every thing about illnesses with pictures of themselves or their kids in their most vulnerable states. But I also understand that this shit is hard and sometimes social media is a place people can find support and community.

Anyway, my point is that I don't post on Facebook to process, but to let people know important information in one swoop and to hopefully get some good out of all this. Research funding, letter writing, whatever. 

In general, I am working on getting more distance from social media and compartmentalizing all of these emotions I have so that I can actually do work and function day to day. Last week a coworker caught me crying in my office. She sat down and we cried together about our issues. I guess that's what happens when you work with a lot of women. But, she also recommended working on compartmentalizing some. 

That same coworker was with me the week before when I was cornered in an elevator by another well meaning coworker asking how my daughter was doing. Everything was still a bit raw from a recent doctor's appointment, and I had to awkwardly extricate myself from the conversation. I later sent an email apologizing for being weird and explaining more, but ugh. 

A few months ago, a woman at work that I've talked to once came up to me at the end of a campus-wide meeting saying she just found out about my situation and asking if she could pray for us with her church. She later delivered a blanket and a prayer quilt square. It was very kind, but also, a college wide meeting is not the place to ask me about my kid's cancer. 

Today, when I was delivering Girl Scout cookies at work, a coworker casually asked how my daughter was doing, then remembered my kid has cancer, apologized and gave me a hug. Nobody is sure what is ok to ask me or talk to me about, and honestly, day to day, I'm not sure either. Hence, giving grace and compartmentalizing.

I have also been trying to be more mindful of what I'm looking at and thinking about during the day. Obviously staying off social media while at work is a big one. Being careful about the music I listen to is another strategy because it can really affect my mood. I've found myself recently returning to some albums I haven't heard in a while for that reason. During COVID, when the kids were crying and my husband and I were bickering because we had been cooped up for too long, I would put on Tom Petty's album Wildflowers and everyone would instantly chill out. I've been listening to a lot of Tom Petty again. If I could live in the vibes of that album, I would. 

One time, a guy I dated was playing some Tom Waits song and told me that if someone loved me, they would play it at my funeral. I thought it was a weird comment at the time, mostly because I just didn't get the appeal of the song. Now I think if someone loves me, they will play "Wildflowers" at my funeral.

A Song To Find Peace

Tom Petty, "Wildflowers"

Story Telling

Something that has been coming up a lot when I read about grief is storytelling and how, through writing, we shape how we understand our lives or our trauma. Some of the authors I've read - Geraldine Brooks, Kate Bowler, Joan Didion - frame it as control. In a situation in which we have no control, we can at least control how we talk or write about it. In Memorial Days, Geraldine Brooks quoted Salman Rushdie's speech at Columbia University in the midst of the fatwah. "Those who do not have power over the story that dominates their lives, the power to retell it, rethink it, deconstruct it, joke about it, and change it as times change, truly are powerless."  

I was reading a blog post this morning that talked about how, after traumatic events, the narratives we construct about our experiences can dramatically affect how we process and heal. It's interesting to me that as much as I've read about writing and as much as I have personally written through challenging moments in my life, I never thought about it in those terms - as taking control of a story and shaping how I move through it. I have always thought of my journaling as a tool to figure out why I was feeling a certain way and how to explain it to others. When I was younger, I felt like there was a stopper between my mind and my mouth preventing me from explaining out loud how I was feeling. And in some cases, there was a stopper between my emotions and my mind preventing me from knowing why I felt the way I did until I had a moment to really think about it. This is probably why I'm resistant to talk therapy. Well that and all the crying I'd do. 

But, writing about my daughter's cancer in this format is a way to enact some control on what is happening. It helps me to understand all the information doctors are throwing at us, to construct a timeline of what has happened and what may happen, to pull out the threads of meaning I can make sense of. 

It's also a way to help me remember these days. In The Year of Magical Thinking, Joan Didion keeps revisiting the same moments over and over. At times, it is a way for her to make sense of the chaos and shock, to try to remember how the events of her husbands death played out despite the gaps in her memory. At other times, it is a tool to remember all the little moments with her husband and their long life together so she won't forget them as she gets further removed from his living presence. 

I think about that a lot. Even before cancer. What do I remember about my children as babies? What do I remember about their little toddler mannerisms and all the cute things they used to say? What moments did I try to etch into my brain that are now gone? My mom tried to tell me to write it all down, but I didn't. Life was too hectic. And now as I try to reconstruct it, what story am I telling about who my kids were or are based on the things I remember and the things I've forgotten? 

Some memories I have of my oldest as a toddler that immediately come to mind:

1. She loves watching TV. When she was 2 or 3, We watched Trolls every day after school for at least a year and we listened to the soundtrack in the car. Her favorite song was "Get Back Up Again." She was Poppy for Halloween 2 years in a row. 
2. She is a completionist when it comes to TV and books. She wants to watch every episode in order and read every book in a series in order. We watched every episode of Octonauts in order at least twice. For a minute, my husband and I weren't sure we should be letting her watch it because she would get so stressed out and worried about the characters being in danger. 
3. She sobbed at the end of Smurfs: The Lost Village when <spoilers> Smurfette dies briefly. 
4. She would get excited when we went to playgrounds and "her friends" were there. Her friends were just other kids that she had never met before. 
5. Once, she told me that she wished all of our family lived in the same neighborhood. She didn't understand why anyone would move out of their parent's house. After some discussion, she said that moving to Charlotte would be ok. 
6. Once, she told me that she wanted to stay 3 because she didn't want to get married and she didn't want to have a baby. 
7. She used to be afraid of "darkie monsters" that lived in her closet. I taught her to yell loudly to scare them away. We would walk up the hallway in the dark trying to scare the monsters. 
8. When she was 4, she had a lot of questions about death. She asked me where people went when they died. When I didn't have a confident answer, she told me to Google it. She told me that wooly mammoths lived after the dinosaurs, and then asked what animal was going to be here after humans were gone. When I said I didn't know, she told me to Google it. 
9. She used to be really into "cute scary" Halloween. She wanted to be a banshee. We settled on a skeleton. When we would drive past graveyards, she would tell me that was where the skeleton people lived. 
10. During a lesson on penguins, she told her preschool class that babies come out of their mom's vaginas. The daycare teachers were not prepared for that. 
11. At preschool she learned about different types of families. When we were out places, should would point out different types of families...loudly. See a kid with two women - that kid had two moms! See a kid with three adults - that kid has two dads and a mom! She did the same thing when she learned about different skin colors. 
12. She memorized a ton of books. Her two favorites were The Very Hungry Caterpillar and The Berenstain Bears and Too Much Junk Food. The latter is so ridiculously long, I don't know how she memorized it. 
13. We went to the beach and a hermit crab pinched her toe. She talked about that for years. 
14. She used to tell me she had "pink magic." She was pressing on her eyes until she saw colors - magic!
15. She learned that plants like music and kind words, so she would sing to the tree in our front yard and give it hugs.

There's more I could list. These things are just snapshots of a person who doesn't even exist anymore. Childhood just flashes by, and I wish I could stop time and just live here for a while. 

I have a lot of art and school keepsakes in a drawer in my basement. One of my goals this winter is to put together a scrapbook with her. To let her go through things from preschool and early elementary school and select what she wants to keep. I also got a mother/daughter book with questions that we can both write our answers in. I know that I am doing these things because I feel like our time together might be shorter than anyone hopes they have with their children. But, also, aren't these things that all parents want to remember these days by? I have just been putting it off, and I don't feel like I can do that anymore. 

-----------------------------

And now, a weird coincidence to remember. Yesterday, I was talking about Taylor Swift with a few coworkers as you do. Unlike women a few years younger than me, TS was not the soundtrack to my teenage angst. A coworker brought up something Jewel said about TS, and it hit me. Jewel was MY singer songwriter. I had forgotten. I got her book of poetry in middle school and read it so many times. The only song I remember how to play on the guitar is "You Were Meant For Me." I played Pieces of You and Spirit all the time on my discman. I have not heard a Jewel song in years. So why, when I got in my car this morning, was Jewel playing on the radio? Are the spirits talking to me or did I just not notice her songs until today?

A Song the Car Spirits Sent Me

Jewel, "Long Way Round"

Happy New Year

Christmas Break is coming to a close, and I am not ready for it to end. We've slept in. We've visited friends and family. We've eaten on our own schedule. We've puttered around, getting rid of clothes and toys we've outgrown and reorganizing the nooks and crannies of our house. But, there is still so much we need and want to do. 

It's a new year, and I guess it's when we are supposed to come up with goals for the upcoming year. Since I've been teaching, August has felt more like a new year to me than January. Regardless of how or when I mark the new year, it doesn't change the fact that I cannot, in this moment, think about the future. I have some plans for January, February, and March mapped out as best I can, but beyond that, it feels too unsafe. To imagine ourselves in May, a year after the cancer diagnosis, to make plans for summer, is too much. It feels like if I allow myself to think that far ahead, I will jinx it all. 

A friend made lake house reservations for us for sometime in July. I don't have it on my calendar, and I couldn't tell you the exact date we planned to go. I'm afraid if I solidify anything that we won't make it there. 

I also used to be fairly driven professionally. I'd set goals, and I'd make it happen. Before the diagnosis, I really felt like I was kicking professional ass - presenting at national conferences, being asked to sit on a variety of committees, getting accepted to paid professional development opportunities, leading departmental initiatives, asked about promotions. Now? I couldn't care less. I am doing what is required to run my classes well and that's it.  Let someone else run things for a change. I don't want to. 

Making resolutions, setting intentions, or whatever is an optimistic act - in this most ideal future, here is what I will accomplish. It's not that I don't want to be optimistic about the future. I do, and I am trying to be. But, I also want to be prepared for a harsh reality. I am split in two - hoping for things to improve, or to at least remain the same, and steeling myself for a fall off a steep cliff. 

I asked my daughter if there was anywhere she wanted to go this year or anything specific she wanted to accomplish. She said she wanted to go to the aquarium in Atlanta and take a drawing class. My goal will be to make those things happen. 

In all honesty, the things I want to achieve are not things I have any control over. More time, more life. There is still so much to do. 

A Road Trip Song

Alex Lahey, "On My Way"

Progression

We found the tumor on May 1, seven and a half months ago. There was a month of recovery after surgery, and then a month after that, we started radiation. My daughter finished radiation on August 11, four months ago. The average time from radiation until disease progression is about six months. We got four. 

Her latest MRI did not show the stable results we wanted. There was a new area lighting up in her ventricle that was not there before. The doctor said it is suspicious for progression, but she can't say for sure. She will discuss it at her tumor board next week and then present my daughter's case at the national tumor board whenever that happens again. Next week, we will need to decide if she comes off treatment and whether we want to pursue a new clinical trial or not. Doctors typically wait six months to do a second round of radiation, so that is probably not the direction we take at the moment. Despite what the MRI shows, right now, my daughter is doing fine clinically, and she doesn't have any symptoms. I am worried about how quickly the disease appears to be coming back and how all the meds may not be working.

My husband is with my daughter at UCSF. I am home with my youngest. My husband called me during the appointment so I could listen in to the results. I'm glad I was on mute. He held it together much better than I would have. I know how hard it was to keep a brave face and continue with the day as if everything is ok. 

They come home tonight, and all I want is to give them both hugs. My youngest has been sleeping with me while they have been gone, and it has been nice not to be alone. I've been keeping myself busy all weekend. Saturday morning, I met a friend at the gym. We hiked and ranted about our problems. I met another friend for sushi. We ate and ranted. I had a book club brunch on Sunday and work yesterday. I've felt anxious while they've been gone. I have never not been there for an MRI. I probably bugged my husband too much with texts and phone calls. 

This morning I woke up all puffy-eyed and forced myself to go to the gym. I usually like to go to a class, but I just can't right now. I got on the elliptical and went for two miles. Feel like crying in the gym? Just go faster until it passes. 

A Song For Crying and Running at the Gym

Fred again feat. The Blessed Madonna, "Marea (We've Lost Dancing)"

A Reading List

 Every year I do the reading goal thing on Goodreads. I don't know why. I make the same goal every year, so it's not like I'm trying for gains. I mostly use Goodreads to keep track of books I've read so I don't forget. It is interesting to see which years I exceed my goal and which years I don't. The low years: grad school, after I had each baby - the second one coinciding with COVID, and after the cancer diagnosis. One thing I have noticed is that while I am really struggling to read fiction right now, I can inhale non-fiction like nobody's business. Give me all the existential books about illness, death, grief, and religion. Apparently I want to mull over all the things people don't like to talk about. So, here's my post cancer reading list so far:

No Pressure, No Diamonds - Terri Dillon

I found this book via Andrea Gibson's Instagram page. It was the first book I read on dealing with a terminal illness and death. Terri wrote the book during the end stages of ALS. While I didn't really vibe with the ayahuasca trips, I totally got the compulsion to seek out any possible treatment or therapy. The parts that resonated most were when she talked about her relationships with her family and friends as they also grappled with her diagnosis.

You Better Be Lightening - Andrea Gibson

Poems can be such a balm. This poems in this book aren't about her cancer. They are mostly about her Chronic Lyme Disease and supporting LGBT youth. 

Orbital - Samantha Harvey

This is one of the fiction books I read this summer/fall. It is one day in the life of astronauts from various countries as they sleep, eat, and work on the international space station and reflect on life back on Earth. I explained this book to someone who didn't seem to understand why I liked it. It doesn't have a plot and nothing happens. Some of my favorite books are like that. It reminded me of Klara and the Sun by Kazuo Ishiguro in some ways. 

Here After - Amy Lin

This memoir is written in fragments. After the sudden death of her husband, Lin is deep in shock, grief, and dealing with her own health crisis. The short fragments of time and events made this book an easy, addicting read. 

Everything Happens for a Reason and Other Lies I've Loved - Kate Bowler

I randomly checked this book out of the library and immediate knew it was for me. I read it in about a day in between grading papers. Bowler is a divinity professor at Duke, and she was diagnosed with colon cancer in her mid thirties. The books is about how prosperity gospel and American culture in general are rooted in the mistaken belief that we have some control over our future. If we work hard enough or believe enough, we will get what we desire out of life. If bad things happen, we have to work harder or pray harder. And if we still don't get the end result we want, there must be some reason or lesson God wants us to learn. This book is her learning to let go of the illusion of control.

Notes of Grief - Chimamanda Ngozi Adichie

This is another book I happened upon in the library app. I have loved her other books, so I wanted to read this one as well. This is a brief memoir about her grief after the sudden death of her father. In it Ngozi Adichie tells stories about her father, reflects on their relationship, and grapples with the various feelings and issues that come from trying to bury her father during a global pandemic. She writes, "'Never' has come to say. 'Never' feels so unfairly punitive. For the rest of my life, I will live with my hands outstretched for things that are no longer there."

Between Two Kingdoms - Suleika Jaouad

I haven't read this yet. It is sitting on my night stand. Jaouad was diagnosed with leukemia at 22. The book is about her experience with cancer and then her journey across the country to figure out her life again once she is in remission. 

A Song by Suleika Jaouad's Husband

Jon Batiste, "Fur Elise"

A Resource List

On Giving Tuesday, I shared some organizations on my Instagram Stories that have helped us in some way over the past few months. I want to keep a more detailed list here about those organizations and what they have done for us.

ChadTough - This organization funds the DIPG Navigator. They connected us with a Nurse Navigator specifically for DIPG/DMG and they helped us figure out clinical trials and get in touch with providers. They can also help connect patients with second opinions, social workers, and counseling services as needed. It is all free for patients. We haven't needed the Nurse Navigator much, but she still checks in with us about once a month or so just to see how things are going. 

The Cure Starts Now - I came across this organization when I was looking for Facebook support groups. They moderate the DIPG/DMG Support Group for Families that has connected me with other parents going through the same thing and been a real source of information. The Cure Starts Now also funds a lot of research into DIPG/DMG. They have a warrior program, but I have not signed up for it yet. We are trying to balance openness about our experience while also protecting our child's privacy, and I'm not sure I want to have people posting about her. 

Pediatric Brain Tumor Foundation - We first interacted with PBTF when we went to the Charlotte Knights game for their Starry Night at the Ballpark Event. They raise money for research, and provide support and education for families. They have an Uber Voucher program that is really helpful for families traveling for care. 

Make-A-Wish - Make a Wish Central and Western Carolinas planned my daughter's wish trip, paid for all of our expenses (flights, hotel, cruise, excursions, meals), and sent us a pre-paid debit card to use while traveling. We go on the trip at the end of January, but so far, they have been amazing. 

Sunning Hill Jill Kids - This is a small local organization that provided my daughter with a new iPad and case that she takes with her to appointments. 

UCSF Family House - We stayed here during our week in SF to start the clinical trial. They provide free housing for families, breakfast and dinner during the week, toys, therapy programs, and fun activities for kids. It's is very much a blessing for families to have somewhere to stay while their children are in treatment. 

Victory Junction - I just completed my daughter's application for summer camp here. Victory Junction is a free summer camp for children whose medical treatments prevent them from attending regular summer camp. My daughter has wanted to go to sleep away camp for a few years, and I registered her for girl scout camp last summer. Obviously, we had to cancel. Because of her medications, I don't feel comfortable sending her to a regular camp, but this one seems like a great opportunity and they have a week specifically for children with cancer. 

Camp Care - This is another free summer camp for children in Charlotte who have cancer. They only offer it one week during the summer, but if it works out with our schedule, I would love for my daughter to be able to go. 

Children's Cancer Partners of the Carolinas - Children's Cancer Partners helps families with the cost of getting medical treatment, including gas, hotel, and flight reimbursements up to a certain amount. They offered to reimburse us for gas costs while going to daily radiation appointments over the summer. 

Memories and Magical Moments - I have not reached out to this organization yet, but I know families who have. The fund trips for children with DIPG/DMG, and I may want to get in touch with them in the future. 

Alex's Lemonade Stand - They have a lot of resources and programs. I specifically signed up for the Sibling Support Program so that my younger daughter has something special to look forward to and so that she can better understand what is going on with her big sister. 

A Kid Again Central Carolinas - This is a national organization with a local chapter. They plan outings for families with children who have a life altering or life threatening diagnosis. Our first outing was to Riverbanks Zoo, which was amazing. We haven't been able to go to another outing yet, but they have had events at the Charlotte Hornets and Carowinds recently.

I recently watched a video by the lead researcher at UCSF, Sabine Mueller. It was about what to do when you get a devastating diagnosis of a brain tumor. One of the first pieces of advice was putting together a team to help. This is obviously a medical team, but also family, friends, and community organizations to help with the various aspects of this journey. I know how fortunate my family is to have supportive family, stable and flexible jobs, and monetary resources that we can rely on. I know this would be so much harder without all of that - if I were a single parent, if I didn't have an understanding boss, if I didn't have good health insurance, if I wasn't able to save money, if I didn't know people who could offer financial support or child care. These organizations can help, but I also know they are not enough for a lot of people. I'm not sure what, if anything, there is to do about those inequities, but donate money and support in whatever ways I can. 

My Current Musical Catharsis

Soccer Mommy, "Circle the Drain"