Magda

I’m having surgery next Tuesday. I’ll be parting ways with my uterus, lovingly named Magda in the past 6 months. 

As far as I know, Magda isn’t hiding anything sinister, but she has had some issues for the past 18ish years, and my doctor and I decided together that now was the right time to wish her a bon voyage. 

After deciding to set the date, I clicked around to see how people chose to mark such an occasion. I found some who held good riddance parties for their dysfunctional reproductive organs, but I feel more of a similar sadness to when I sold our top-of-the-line rocking chair. 

Reading this back to myself, I'm sure it must sound bizarre to hear me compare a part of my body to a chair. The chair was a place I felt cushioned, comforted, and content. It had all the bells and whistles of a custom rocking chair. It reclined, rocked, glided, locked in place, and even came with a matching gliding footstool. I held both of my babies in that chair: a place of reading, of sickness, of hope and love. 

When we moved to our current home, there really wasn't a spot for it. "The baby" was three years old and preferred to cuddle in my bed, or read books on the floor. So we chose to pass it onto a new family, and I still feel wistful about the memory of that day, taking photos in the chair together for the last time.

What a luxury I was afforded, to be able to carry two beautiful and healthy babies to term tfu tfu. 

Magda survived chemotherapy and (with love and care from many professionals) grew our family. Magda is a warrior uterus. I do truly thank her for her service. 

I feel a deep sense of gratitude and connection to her, and my body in general, for my many doctors, and the access to healthcare, for the life I continue to live. While I’ve experienced several unexpected (and occasionally major) health challenges in my 48 years, some rotten days and nights, I am still here for the setbacks and the joys. 

Dog snuggles

Watching my small kid as a playwright in a room of adult actors

Getting a video call guitar session from my big kid

Hosting family for Passover seder

Birds chirping happily outside my window

Protesting injustice with tens of thousands of others

Reading books to my cousin’s babies over breakfast on the West Coast

Going to a hilarious show with my friends and laughing so hard my face hurt

Glimpsing the neighborhood fox prancing through the yard

Fresh sheets on my bed, chai tea in my hand, Wordle not yet solved 

Daffodils blooming and all the colors of spring 

Relishing in the wonder of other peoples' stories

A year ago, I was still struggling to drive, to be in the world with my eyes open. I have spoons again, and I feel lucky. 

Don't Hesitate

by Mary Oliver

If you suddenly and unexpectedly feel joy, 
don’t hesitate. Give in to it. There are plenty 
of lives and whole towns destroyed or about 
to be. We are not wise, and not very often 
kind. And much can never be redeemed. 
Still, life has some possibility left. Perhaps this 
is its way of fighting back, that sometimes 
something happens better than all the riches 
or power in the world. It could be anything, 
but very likely you notice it in the instant 
when love begins. Anyway, that’s often the 
case. Anyway, whatever it is, don’t be afraid 
of its plenty. Joy is not made to be a crumb.

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!