Wednesday, March 25, 2020

Day 16

Hey y'all.

Still here. Still home.

My brain is all over the place, so I'm hoping that writing will be sort of meditative and help me sort some thoughts out.

1. Bar Mitzvah.
We had a family meeting last night (all family members age 12 and over attended) to discuss our plans to postpone officially, the age 12 child's Bar Mitzvah. We decided, as Team Family, to postpone it to 2021, as that plan was the "least sucky" option. I have been up and down about this, seeing as how I'd been planning it for the better part of a year, spent countless hours working on details for the entire weekend celebration (hosting family and friends for no fewer than 4 large meals). The child has been studying to read Torah for the past 3 years, and has worked for the past year on a daily-weekly basis practicing and preparing for this particular reading on this particular date. So it's not easy to just switch the date. Big bummer. But of course we want our friends and family to be able to safely attend. We are going to be SO ready to celebrate together next May. Sigh. We were so close and now it feels so far away. Oh, and also our original venue is no longer renting due to lack of staffing, so there's that.

2. Food.
I read this article earlier about how when there is so much uncertainty, we must stay present and control the things within our control. Well anyone who knows me (or who has read even a few of these blog posts) knows my not so secret love affair with control. We are mad for each other. So I had been quarantine shopping for a few weeks before this all got serious here. We are not hoarders or couponers, but we've got toilet paper, and as we had been preparing to get rid of an extra freezer (we have an extra fridge/freezer in the basement, plus the former homeowner left a small freezer when she moved), we had space to fill up with frozen veggies and meat and fish. We can do all the hunkering when I feel like we've got enough food to eat without needing the grocery store. Still anxious though, bc there is so much uncertainty about getting food and not being able to feel safe and secure. It gives me a glimpse into the lives of people who are truly food insecure. And we have plenty! This is just one way my anxiety is manifested.

Quarantine Creative Work
3. Kids.
The kids are okay. The big one is definitely bummed about not being able to see his friends at school, and occasionally frustrated at being stuck with us, but for the most part, he's been dealing okay, as long as his phone shuts off after 2 hours of usage. He has "enrichment" work offered by his teachers, but nothing truly concrete. We try to keep to a routine that is framed around mealtime. Between breakfast and lunch, he is supposed to do something academic, something creative, and some movement. Between lunch and dinner, it's the same. He seems to like the flexibility in that, and I'm just happy if he's busy and seems okay.
The little one seems weirded out by all of this, but managing. He's quicker to cry than usual, and needs extra hugs and snuggles. He is having a very hard time with his response to the word "no" and averaging a few extra tantrums a day. Today he had his first virtual circle time with his preschool class and teacher, and that was definitely comforting. He'll have one every day at 9:30, so that's fabulous, and something to look forward to. I wish every kid could have access to some level of familiarity like this. They and we need it badly, this connection to normalcy.

4. Movement.
I had been on a great streak. I re-joined the gym in January and I'd been going 6-7 times a week since then. Trying to improve my heart health, trying to extend my lifespan. Now I feel like crawling under the bed. Which is not even possible because our bed is a built-in.

5. Dog.
He's the best, you guys. But even he is weirded out. My dad came by to pick up some groceries we added to our delivery order and the dog was basically crying at the window that my dad couldn't come in. I think he also doesn't know why we are here all day long. I'm guessing he needs his alone time too.

6. House.
Rage walking at dusk.
Well, I'll be honest, Dan has painted a purple wall, and we had time a few nights ago to put up artwork we hadn't had a chance to put up since we moved in. And since the bar mitzvah is now moved to next year, I'm wondering if we will be able to remodel the kitchen before then...? Is that out of the realm of possibility? My concern would be if we do the demo but can't finish it bc of another global pandemic. I never ever would've been saying those words 3 weeks ago.

I hope all of you out there are hanging in and that you have food to eat and someone to make you laugh not too far away.


Thursday, March 19, 2020

Life in the time of CV

Wow. Just wow. Anyone on Earth right now is connected in the strangest way. We are connected because we cannot be together.

I just keep thinking that this experience couldn't be any weirder, but my emotions change on an hourly basis.

Since I process by talking (which becomes writing), I figured it would be healthy to fire up the old blog to both digest and keep a record of this bizarre and terrifying time.


Today is Day 7 for our family's lockdown. We live in a suburb of Philadelphia, and our public school district closed down last Tuesday for the duration of the week. I am so grateful for this, that my husband and older child were not exposed to dozens of other kids who may or may not have been exposed unknowingly. I did work last Tuesday, I visited a few classes in Philadelphia, though luckily, that was prior to any known cases were discovered in the city.

Since then, my big kid (J - age 12) has been home from school. Last week, he had one playdate at someone's home, and one playdate at an ice cream shop. After Wednesday of last week, he has had no in person contact with any other kids other than his brother (Z - age 5)

Sorry for the interruption. Despite us having to be at home all the time, I don't seem to be any less busy than I was 2 weeks ago.

Today is actually Day 9 for our quarantine.

Z's day consisted of reading stories with me in the morning (1 of which I videoed and shared on Facebook), doing a bit of journal writing, playing in the house, playing in the backyard, going for a scooter/walk with me and the dog, watching a few shows and playing a few ipad games. All in all pretty good. We are trying to help him stick to his school routine as much as possible since it comforts him. But also I want him to have fun and not feel worried, so I have set up lots of lovely activities and crafts throughout the house. Of course he just wants to be near me.

J's day involved some schoolwork on the computer (he has enrichment activities assigned by his teachers), some doodling on the dry erase board, 15 minutes of playing soccer in the backyard before he came in to complain his cleats were too tight, and lots of talking to his friends on the newly downloaded app House Party. There may have been a meltdown on the deck because he reached that point in the day at about 3:00.

As for me, today I was on kid duty. Dan was painting a purple wall in the living room. Adios, lilac wisteria! Welcome home, clean, modern, white wall. It was a monster wall, that borders a flight of steps but also goes way up high, as we have a ranch home that has super high ceilings with exposed beams. So even though we moved in almost 2 years ago, we hadn't been able to paint that damn wall yet.

If nothing else, we at least have time to work on house projects?

Tomorrow I am planning on trying to get some work done, while also baking soft pretzels from scratch. I'm hoping to scoop down in my flour canister to the point where I have some whole wheat flour waiting for me to use to create a sourdough starter. I've never made sourdough bread before, but always wanted to, so wish me luck. I'll report back.

Too tired to share emotions this evening, but hopefully I'll get a chance tomorrow, in between the baking, the working, the reading, the snuggles, and dog walks. It's easier to keep busy, less panic seeps in the cracks.
adolescent in his natural habitat

iPad photos - I have 100 of these stored on my icloud account

pup and buttercups

This is a mountain from angry birds 2. (obviously)

Backyard time.

Monday, February 24, 2020

Annual Wave

Heyo! Still here! Tfu, tfu. 

Lots of updates since my last post almost 2 years ago, but I can see that there's been traffic, probably mostly from newly diagnosed fellow PMBCL patients (sent directly from our FB support group). If that's you, Hi!!

If you're a friend of mine, and we've been in touch the past 10 years, I don't have any new information to share, but perhaps a little bit of wisdom and happiness.

Since the last post, we have moved to a new house and adopted a new dog. We are all hopelessly in love with him (check out many more photos on his instagram page @RudyPrinceofFluff).

I have a new job this year, working as the Program Manager for an incredible non-profit teaching health education, journalism, and media literacy skills to K-8 students.

But what really brings me here tonight is that exactly 5 years ago, my amniotic sac had sprung a leak and I was watching Downton Abbey, waiting for active labor to kick in.

My little fish had flipped back head down but wasn't sure if he really wanted to come out.

Lucky for us, he did make his way into the world and we have been so so lucky to watch him grow into himself over the past 5 very brief years.

Tomorrow he wakes up 5 whole years old. One whole hand!

We can't stop time, it often feels like a boardwalk roller coaster. Get in and buckle up, or be left behind watching from the bottom. Sometimes it seems I'm doing both, especially when parenting.

Life is busy, filled with small disasters, exhausting days, rewarding moments, fantastic friends, a little self care, and a never ending To Do list.

I am so grateful to be here for all of it.

Carry on.

Thursday, February 1, 2018

lessons learned

In my last month of my 30s, I was summoned to report for jury duty.

"You won't even have to report," they said.
"You won't get selected," they said.
"There will be lots of waiting around, you will be able to get work done," they said.

Um, no. Long story short, I was selected and agreed to be the jury forewoman for a criminal trial. I was pretty much in shock throughout the whole first day - jury selection and then the majority of the trial proceedings. We were not permitted to speak to anyone - including other jurors - about the details of the case until after the trial was over. That was almost the hardest part. The second day, the lawyers completed their questions and gave closing arguments.

Finally, deliberations began.

Have you ever imagined being closed into a room with no windows with 11 strangers to try to agree on ONE single thing? How about FIVE things? I had never imagined this prior to now, but let me tell you it was a challenge. It took us almost 14 hours of deliberating to agree unanimously on each count.

For me, the answers were very clear. I felt there were so many inconsistencies in the physical evidence and in the police documents that there was no way I could say the defendant was guilty across the board. But there were 5 separate charges we needed to come to a consensus on. And it turned out, we all had very strong convictions but not necessarily in the same direction.

By the end, we found the defendant guilty on 3 charges and not guilty on 2.

I learned a lot about working with others, who think very differently from myself.

I learned...

how few people understand systemic racism (or thinks about WHY someone may be dealing drugs, is poorly educated (within this first world country), has very limited choices for earning a living wage)

how few people understand the dynamics of people who live on a different socioeconomic plane

how hard it is for some people to follow the instructions given to them, requiring them to set aside emotions or "gut feelings"

how people's fears can guide their decisions as opposed to compassion

how people believe compassion means putting yourself in someone else's shoes, when really it could mean imagining an experience the way someone else may view it, NOT YOU

how quickly people are to judge others based on CIRCUMSTANTIAL EVIDENCE

how few people understand what racism can sound like and look like

how time consuming it can be to try to get someone who doesn't know you to see things your way

how truly difficult it can be to get someone else to remember we are all innocent until PROVEN BEYOND A REASONABLE DOUBT guilty

how gut wrenching it can be to pronounce someone guilty of a felony in a court of law, especially when you don't believe the law is ethical, but even when you do

how much work we have yet to do to change the way our society functions.

If we want to drastically reduce crime, poverty, we must drastically increase education. It is the only way forward. I double down in my career choices, and in the way I will choose to spend my professional time going forward.

It brought tears to my eyes once I finally sat down, after I had answered the court's questions about how the jury decided on each count. It's still making my eyes sweat to think about how momentous a day yesterday was for the man whose fate we had a hand in deciding.

I know this blog was created as a post-cancer journal. Here I am, post-cancer, on the eve of my 40th birthday, continuing to learn about the world around me and the meaning of life. I still feel like I can never say thank you enough to those who supported me 7 years ago and continue to laugh, live, and love with me today. I know one thing for sure by now. We are only here for a short time, and so little is within our control. But what we can do is to help others. The only way I can return the love that was shown to me when I needed it is to show compassion and love to others. I will continue to do my best at that, growing and learning every day I get to gratefully do so, even into the next decade. I hope you'll join me.

Monday, October 23, 2017

Still Here

Clearly, I go longer and longer between posting here (evident in the fact that I briefly forgot HOW to post here). I am hanging in over here, parenting, working, thinking of selling our house in the spring, getting used to being a no dog family. I have begun a number of blog posts in the past few months, but none ever made it to the orange publish button. 

Since last November, I certainly do question how distantly into the future we can all realistically look. But there's not a ton of time for deep reflection. I love my children something fierce, but they require a lot of physical and emotional energy. Damn, if I don't worry in my free time, WHO WILL?

I'm currently on a no/low sugar detox (I may have cheated once or twice in the past 3 weeks), as my indulging and food-rewards had gotten out of hand. I definitely feel better, but I'm looking forward to feeling it in my pants as I zip them up without holding my breath. I'll keep you posted.

Still at the same place with my heart and lasting radiation effects. Still on my beta blocker, still sensitive to dehydration and poor circulation. But I'm still here, too. We discovered over the summer that high altitude living is not for me (had to ditch a trip to Colorado a week early due to altitude sickness in Boulder), and I would venture that would go for anyone who had radiation to the chest? I can live with sticking to sea level.

I turn 40 in less than 6 months. Yes, I'm celebrating, for sure (with a trip out west to the desert to chill in a hot tub under the stars). But I'm also starting to panic because my mammograms begin at 40. Is this going to give me PTSD from scanxiety? I promise if it does, you will be the first to know.

Sunday, April 2, 2017

Our Mooshu

Waiting for results again. But this time, it's not my bloodwork in the lab. It's our almost 14 year old dog, Mooshu. The vet predicts lymphoma, based upon his giant tumor under his jowl. When I heard that, my heart lept. Seriously? He has to have it, too?

We've been through a lot together. 3 homes, 2 kids, 1 major illness, new cars, countless dog beds, dishes licked clean, crumbs inhaled, tap dances performed for food, trips to Pittsburgh with him nestled in the way back, snuggles, bowls of chicken and rice, cottage cheese, ear infections, walks with snow booties, quick pees, and so much love.

I don't know what I'll miss most. Will it be him sun bathing quietly? Whimpering in his sleep, dreaming about running after a squirrel?  Will it be the way he knows when I'm cutting carrots for lunches and he walks into the kitchen to see if I will share (I will)? The way he smells like stale corn chips when he curls up in front of the radiator in the winter? The way he knows when my mom is coming over and waits patiently at the door? Or how he gives my dad a better reaction than us when we return from vacation? It will probably be the way he lets the boys snuggle up against him, and how he has taught them to care for animals. How Judah and Zevi have never known life without him, a family fixture.

We knew he was getting old (we think 14 in July), but he's been around forever, so it's been impossible to imagine life or our family without him.

When Dan and I first rescued him 13 years ago, in April 2004, he was a scrawny, caramel and white speckled puppy at the SPCA in North Philly. We had just gone to look at the dogs there, not to actually bring one home. But I saw him and fell in love. We went home to sleep on it, and the next morning, we were back at the shelter when it opened. He stunk up the car, stunk up the house, destroyed brown paper bags and dog beds, learned not to eat too much sugar (that's a whole other story), loved food of all types (including cucumbers and lettuce), refused to go out in the rain, kept your feet warm under the dining room table, always knew which visiting child to sit next to (slash nudge into dropping food for him).

Mooshie wasn't super excited to welcome babies into the house. They were noisy and they crawled around his house. He once lifted his lip at Judah when he was about to crawl into his space under the table. I caught him and he caught it from me, and never did it again. Same exact thing happened when Zevi began to crawl. One warning, we nipped it. We never allowed any baby or child to mistreat Mooshu, nor did we let them walk around the house with food, taunting him with treats he couldn't (but eventually would) enjoy.

He's survived 2 bouts of chocolate poisoning, eating a few shoelaces (if you need to make your dog vomit, I can coach you through it) and seasonal bouts with hound dog ear infections. Before children, he lost a piece of his ear at the dog park (we still don't know how it happened), and I came home to what looked like a murder scene at the house, as he'd been shaking his cut ear every time the cut began to clot and itch. The vet hospital called us to come and get him as soon as he woke from his stitches because no one could think while Mooshie was howling.

Oh, the howl. Mooshu's bay was voted best of the Philly dog park in 2004. He liked to turn his head upside down and howl at his friends in the park. He howled to show his joy, to let everyone know he had arrived, to establish his presence. You could hear him howling from a few blocks away and know he had met another dog on his walk.

Our first baby, I will miss his reassuring presence in the house. I will miss him following me into whatever room I'm working in, cleaning in, cooking in, talking on the phone in. I'll miss his clickety clacking around the house, his waiting for a missing family member before proceeding on a walk, the way he communicates with us, staring, motioning, whining, and more recently, panting, until we finally understand what he needs.

And now that we know what he needs, it's so hard to say goodbye.

We will love him forever and ever, our Mooshie.

Monday, October 24, 2016

Present Day

Once in a while, it's a good idea to take a step back and remember how far you've come.

We are settled into our hectic but loving life as a family of 4, toddler in tow. I continue to work part time while the baby goes to daycare and my mom. Judah is now 9 and almost out of elementary school. The past year and a half is kind of a blur, and while the day to day responsibilities and routines can be rewarding, they can also swallow you up. In the current world (election) mood, tension is contagious. All of social media is like a giant pulsing pit of anxiety that I need to escape.

I try to retreat to my corner with my small and large munchkins, and just focus on being present, but it can be a challenge.
smallest munchkin

soccer stars

biggest munchkin

October 24 happens to be the anniversary of the very first Light the Night walk I did to support LLS. I'm looking forward to being able to participate again in 2017 (no special reason other than scheduling and parenting responsibilities have presented conflicts for the past few years), because it's still hard to admit, but we are all so vulnerable and need to know we have community to lean on in time of need. I don't want to need it ever again, but I know it is my duty to be that community for others.

It's been 6 years since treatment ended, but I haven't been able to shake the tempting-fate feeling that ebbs and flows and makes me never want to use words like "cured" or "that's all in the past". While logically, I understand that saying such things would have zero bearing on my cells going haywire, I am still not taking any chances.

Tonight, I was organizing some files and bookmarks on my laptop (truth: so Judah can independently access his Hebrew homework website) when the blog bookmark called out to me. I go so long between posts that I doubt anyone reads them anymore. But I couldn't forget reading others' stories into the wee hours of the steroid-induced insomniac mornings and wondering why they stopped writing. Of course, I vowed to never stop writing, lest someone else wonder.