On 48

It's been over a year since I last posted on here, but even 15 years out of treatment, I still know that patients currently facing cancer like to see updates on blogs. So I'll continue to come here to write when I can, both because it's cathartic for me, and maybe because it can bring hope to someone else that life can go on after cancer. Now in the 15-20 year post-radiation danger zone, those fears easily return during routine checkups but they aren't keeping me from living.

I celebrated my 48th birthday this week, observing a one day distance from the (horrific onslaught of) news, while absorbing as much joy as possible. This joy included getting a manicure, shopping at Costco, going out to dinner with my family, including my college kid. I also received several gifts from me to me, that arrived on my birthday: a scarf that can also be a hat, a tshirt with a subtle nod to my current television obsession, and a box full of girl scout cookies. I ordered my cookies from a 2nd grade troop in Minneapolis that includes trans and neurodiverse youth who cannot safely sell this season due to the ongoing violence our government continues to perpetuate there.

dinner at Sally

The ground has been covered in snowcrete for the better part of two weeks now, it's pretty freezing outside, and all I really want to do is curl up in bed with hot tea and just toggle back and forth between a good book and Heated Rivalry.

I didn't feel guilty for taking the day off from the global terrors, but I do feel sad it was only a day. The responsibilities, obligations, stressors, and worries of the world are back now, because I'm alive and conscious. I do know what it's like to shut everything out and crawl in a hole (I was doing a bit of that a year ago), and my eyes are still healing from that period of time. 

IYKYK

The scotch tape is still on my glasses, and I am sure to have my fit over sunglasses with me at all times. I even wore them at the dentist's office last week, ON TOP of their protective glasses, which didn't help with the lights shining in my eyes.

With the help of a wildlife rescue friend of a friend, I have been trying to trap and help an injured fox in our neighborhood, but so far, we've only been able to catch a squirrel and a raccoon. The fox is proving a bit more clever and clearly not hungry enough to make his way into our traps for a hard boiled egg.

Foxy with a limp

Work is ongoing with some amazing schools and kids and teachers. While it's sometimes hard to get out of bed on these cold winter days, I always feel better after I've been on a school visit. I come away with a full heart, warmed by their curiosity, their thoughtfulness and creativity. Children are a balm to the soul. I was lucky enough to listen in on an interview one of our groups did with a musical collaborative group, the Ill Doots, while I was waiting to get my driver's license renewed. I wished the entirety of PennDOT could have enjoyed the interview as well. 

Ill Doots music from WHYY's Albie's Elevator

This is to say that life goes on. And thank goodness for that. I've got dog and kid snuggles, friends to make plans with, family who love me, really delicious food to eat, and important work to do. I'm still here and I hope to keep being here as long as I can, helping people, and finding joy wherever I can. 

LONG story short (yes this is the short version)

The past 4 months have been a wild, largely unpleasant rollercoaster ride, beginning with an uptick in migraines and auras, anxiety about said migraines and other life events, and then worsened by a rare and severe side effect to a medicine prescribed to heal gastritis. Finally, and all along the way, though sometimes difficult to see, came healing.

The anxiety caused by the storm of symptoms was truly debilitating and caused additional physical symptoms that affected my vision and my ability to eat, sleep, drive, to work, to parent, to think clearly, and to function in general.

After working my hardest the last 3 months, I am finally beginning to see some real improvement in my functioning. I started driving on my own again just a few days ago, which was huge. I made dinner last night (including fresh pasta and sauce from scratch), I’ve started attending work meetings and listening in on small school board meetings. 

                        

My mom and I have been working on a book project for Healthy NewsWorks, and she has been my eyes on the computer while creating curriculum for next school year. 

In order to get to this point, I have seen at least 14 doctors, including my oncologist, neurologist, 5 doctors from my primary care group, 4 vision specialists (including a neuroopthamologist, a low vision doctor, and a binocular dysfunction specialist), a psychiatric NP, a psychiatrist, had a trip to the ER, several rounds of bloodwork, and a Brain MRI. 

I am quite certain that even with all of that professional attention I would never have gotten to this point without the constant - and I am not downplaying - support and presence of my family. 

                            

My husband has been working his hardest to play both parent roles and keep working his full time job, my mom has been my personal assistant and daily babysitter, helping me to keep moving and not lay in bed all day. My brother has swooped in to help me through some very scary moments, and my dad’s strength is in distracting me by doing endless crossword puzzles together. 

                            

Our friends, neighbors, extended family, and coworkers have provided gift cards, meals, and moral support, really without knowing what was going on. My closest friends have been on standby to assure me this was not a permanent state of being and that I would heal. They got me to open my eyes when I was afraid the light would trigger another migraine. They came to keep me company, and they got me to leave the house. They celebrated every win, no matter how small. 

My boss has been very compassionate, understanding, and I certainly feel valued at work. My team at work stepped up and got a TON accomplished (still ongoing) in my absence. 

My children’s existence has been a constant motivator as well. Their love and affection gets me out of bed and off of the couch most mornings. Yes, even my teenager has cheered on my progress, played card games with me while recovering from a migraine, and sat and listened to pop culture jeopardy with me. My 10 year old supplies the snuggles, pure sweetness, and even sometimes a snack. 

I am forever grateful to every single person who sent me a note, thought of me, or contributed to my healing. 

I have been unable to process the painful status of our country and the world at large, and am just starting to be able to read about the mayhem. Staying high level for the moment.

I taught myself to crochet.

As far as screens go, I am limited as to how much time I can spend. Not yet back to television, computer I can spend a few minutes on at a time, and my phone is the easiest for my brain to process, but luckily scrolling is uncomfortable and I am wary of the unpredictability of social media content. So I’m largely staying focused on audiobooks, listening to trivia game shows, playing word games and voice texting with friends. 

                            

I have 5 new pairs of glasses: 2 prescriptions, 1 pair of readers, and 2 tinted fitovers - my super dark special order sunglasses, and my lighter wraparounds (aka my terminators). On my main pair of glasses I have 2 small pieces of scotch tape attached. This is called binasal occlusion and helps decrease the amount of stimuli my brain have to process visually, without blocking my vision. It has really helped me to ride in the car with my eyes open and thus not get nauseous during a car ride. And of course it helped me get back to being in the driver’s seat myself. 

I am still working on building up my physical stamina, on improving my light sensitivity, and on managing my migraines. 

I’m so grateful to Amy, who connected me to the most incredible anxiety therapist who has been crucial in my ability to push myself forward. She understands me so well and has given me the tools and the confidence to not let my migraines or anxiety about them dictate my life. 

                            

Of course I can’t forget Rudy, my true emotional support stuffy, who gives me kisses and cuddles, and whose steady heartbeat never fails to comfort me. 

                            

I’m coming back, baby!

                            

Continued Abnormalcy

We can all agree that 2020 is the worst episode of Punk'd ever, right? It's been a solid 5 months since the global pandemic hit the Northeastern US. And while our section of Pennsylvania is in a kinda green phase (closer to normal than red), our family takes this situation pretty seriously.

this is how we do groceries now?

We don't really go out, except to pick up food or medicine, or to walk the dog.

We did rent a vacation house for a week in Delaware last month, but even there, we just went to the beach and back. Brought all of our groceries with us. And we even had the house treated with vital oxide (don't ask) before we arrived. I still felt nervous using the silverware in the kitchen without washing it myself first.

 

When I watch TV, it's pretty much all pre-covid shows, and my brain thinks that everyone is standing too close and rude for not wearing a mask.

Clearly, my brain is having a challenging time adjusting to so many new realities:

The one where we can't go anywhere, hug anyone outside of our quaranteam (which for us, at least includes my parents), relax, put groceries away without disinfecting them, send our children to school or camp. Oh, also the allergies that give me a constant sore throat also send me into a panic every day.

The one where my children have a very VERY limited existence and can spend more than 7 consecutive hours talking to friends in one day. 

The one in which my dog wishes we would just leave already.

The one in which my phone never runs out of juice because, have I mentioned, I never go anywhere?

The one where we have a major presidential election in just a few short months and our choices are either Biden/Harris or a giant, loose, orange turd and his faithful nodder. 

The one where all I want to do is scream and yet, I cannot get out there and protest.

The one where one of my very closest friends of 27 years is not alive. This one is really the hardest of all to grasp. It's been 10 days since she embarked on the next part of her journey without the rest of us. What I've come to realize about the process of grief is that it's really a process of changing your expectation about the world. I expected her to always be there in my world, and she was. I still expect her to be there, and my instinct is to call her or text her because my brain still thinks she IS there. So grief is like installing a new program that changes your expectations and instincts. But my brain is not just a computer, and changing it hurts, it even makes me want to vomit. You know how when you sleep (thank you, ativan the wonder drug) you forget, and when you wake up, you remember and the remembering stings every time.

I keep thinking that there are ways I can comfort myself but they mostly involve chocolate/wine/saturated fats and none of them involve bringing her back, so they all just suck.

What even is this? It feels like the alternate reality of Back to the Future Part II. If only we had a Delorean or if we could get Sam from Quantum Leap to jump around (I'm thinking first we send him to 1619 to stop the birth of the TA slave trade, and go from there?).

Truly though, I can say my world has been rocked. I'm reverting back to the gratitude practice to help ground me. Let's see how many times a week (a month?) I can do it to help me find some calm.

Tonight I'm grateful to have finished a work project that I was feeling stuck on for the last few weeks and was due tomorrow. Curriculum to teach kids about friends. Couldn't have come at a more important time for me. Done.

I'm grateful that my dear, sweet friend heard my letter before she left this world. What a wonderful husband to have read it to her.

I'm grateful that we have fresh fruit and vegetables and coffee and milk and all the foods my children need. At night I can hear crickets and see fireflies outside. If I need a doctor, I can call one, and even have medicine sent right to my home. I sleep in a clean bed, and sometimes I even have time to watch a show on the telly.

I'm grateful for my sweet, soft puppers. I love to bury my nose in his little furry armpit and smooth his fluffy eyebrows. He's happiest when he's sitting on my lap getting belly rubs.

I'm grateful for our neighbors, especially those who have kids the same age as Z, so his kindergarten experience won't be a complete loss. I'm actually a little bit excited about him finally getting to spend some regular time in the presence of peers, even if it is in this bizarro universe where you go to virtual school at your neighbor's house.

I'm grateful for this space to help sort through my thoughts and get them out of my head.

BFF4EAE

On so many levels, I hate when people say someone lost their battle with cancer. First off, who lost? We did. The world lost. And if someone lost, then someone won. I refuse to give cancer the satisfaction of a win since in the end, the cancer is gone, too. And those rogue fucking cells have no ability to revel in the heartbreak they leave behind. 

All that being said, the world lost an incredible person today. The best person, in fact. And it really stings.

***

How many years counts as enough time to spend as someone’s friend? 5? 10? 25?

 

It seems to me that there is no amount of time that could ever be enough to share a friendship.

 

The memories of a 27 year friendship are endless: countless meals and cups of tea, hours and hours and hours of phone conversations (and polos), walks through the city, tears and worries shared, visits, sleepovers, meetups, messages, letters mailed, emails and texts sent, rides on the train, drives through 2 states, parties, drinks, pictures taken, hikes, adventures, theatre, new friends made, concerts, infertility struggles, pregnancies, miscarriages, births, parenting advice given, accomplishments celebrated, children’s videos watched over and over, and even diseases treated and survived.

 

And yet, there’s never enough time.

 

I look back on a 27 year friendship and know that we took advantage of the time we did have together. We talked, we laughed, we vented, we cried, we anguished over all of the unknowns of the future, knowing full well we had such little control over what was to come.

 

Still here we are. The moment is here. The one I’d pushed away because imagining it is like imagining yourself without a part of your body: it’s impossible.

 

I know that we are so lucky. Particularly, me. I have been so lucky, to have been given a friend who both sought my advice and gave yours honestly to me (even if I kept the clear glasses or went with the tacky pink and purple tie dye). You shared and listened. You always showed up. Always. Answered the phone or jumped on a train (okay, maybe you didn’t jump, but you got on it). A bris in a snowstorm or a bowling birthday party were just 2 states away.

 

Remember how we used to meet in WSP in the West Village?  We went to the pop shop or had lunch at café dojo, and then ran after Gwyneth Paltrow for an autograph when we spotted her minding her own business. Or when I’d come to Long Island and you picked me up from the train station in the Pontiac sunfire to go to the beach club and then listen to Rent or Les Mis in your room before I got back on the train to go home.  

 

Later, I wore my doc martens to see your dorm room on the quad (stepped in those damn ginkgo berries and spent forever pouring bleach on them cause I thought it was barf) and we’d go to smokey joes and pretend to be 21. We made mixtapes. We blew our hair dried straight and go to a random NYE party – who was that guy I kissed? in the burbs, right? – and we danced and whispered and giggled and were only a tiny bit hungover the next day.

 

Arms linked, we still met in the city, after college, before and with kids. We took any opportunity to steal a few hours together, catching up, telling the real stories, the important stuff about boyfriends turned husbands, and families (extended families) and friends (or juicier, non-friends), the lack of sleep or parenting trials of the moment. We shared recipes (I still think of you when I make the strawberry spinach salad and the puff pastry brie appetizer) and went out to eat with our husbands. We sat next to Bode Miller and Morgan Beck in the 11^th row at Book of Mormon, and stood in a giant stadium to see Beyonce fly through the air and we sang at the tops of our lungs.

 

Weddings – dress fittings and bachelorette weekends. Pregnancies and babies – so many memories that make me laugh looking back. No question our children were so wanted.

 

And unbelievably, we went through cancer together, me first, thinking I had been able to take it for the rest of us, and you after. I was so so angry when I got the news from Naph. We were both young and had so much more to do. Unsurprisingly, we both turned out to be sensitive in mind and body, with a list of treatment side effects a mile long. 

 

You made changes and took care of yourself and your family. You went back to school and realized your dreams of being an artist. In between the scans and the appointments and the markers and the fucking trials, you thrived. You played tennis. You made travel plans. You published a book! You wasted no time.

 

And in the meantime, we still made seeing each other a priority: lunch in the city or a sleepover at your new house, you could not have been a better friend to me. You were always someone I could trust with secrets, with fears, and to share in my joys, too. Friends who stand by your side for almost 3 decades are not easy to come by. Thank you for being an incredible friend to me. I hope I was able to provide some degree of support for these past 8 years, especially, on this roller coaster of uncertainty.   

I’m beyond grateful for the 27 years we’ve had. I’m furious for the years that were stolen from your girls and promise to do anything for them. I’ll share all of our memories (some will have to wait a few years though), saved letters, and show up for them. I’ll remind them how proud of them you are, on a field or on a stage, or as a friend, how endlessly you love them and that you wanted nothing more than to be with them always. I will make sure they know you would have done anything to see them into adulthood.

 

We were supposed to be glamping this week.

 

I miss you already.

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.

xxoo

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.

So.

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.

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.