checking in

Compression gloves.  An electric jar opener.  Shampoo dispensers.  They may appear to be small things, but to me, they're everything.  (Thanks hubby!).

During a fit of frustration this weekend, I told my husband that I was tired.  I was tired of answering questions about my health status with people who couldn't understand.  And while I had said those words from an unhappy place at the time, there was some truth to them.  It's really, really difficult explaining what it feels like to be forced into a menopausal state, to experience hot flashes and joint pain over a decade earlier than expected, to realize that everyday tasks like squeezing toothpaste out of a tube or shampoo from a bottle could hurt.  To become exasperated at myself when my fingers would fail me, that I would drop things or take 15 minutes to tie a knot or struggle with high chair and carseat harnesses (that were impossible to begin with!) or find myself ugly crying in the kitchen when I could no longer open a jar.  It's hard to verbalize that yes, I survived -- I finished chemo, then radiation, in a pandemic, no less -- but this survivorship thing?  Boy, it's hard too, in a whole other way.  On the outside, I look fine.  My hair is growing back (although it's in this weird stage that I don't know what to do with), and we've been gradually re-entering the world and having somewhat of a social life.  Technically, which is what I tell everyone when asked, I'm being managed by medication (an aromatase inhibitor) plus monthly injections at the infusion center (ovarian suppression) as adjuvant therapy, since I'm premenopausal.  I read the literature and studied the side effects when my oncologist had first suggested it.  He warned me about the joint pain and hot flashes, but I was still undergoing chemo at the time so honestly thought, "How could it be worse than it is now?"

I don't know if it's worse.  I remember the bone pain that I had experienced with chemo, barely able to cradle my newborn, trying not to move at all out of fear of dropping him.  Some days, I would camp out on the couch and just pray for the constant, gnawing pain to subside.  Nowadays, it isn't the same type of pain -- it's consistent, but not unbearable -- and it's more like stiffness in my joints until I start moving.  So in other words, it's just annoying enough but not something I would take OTC meds for.  It's tolerable.  The difference here, though, is that there truly is no relief in sight.  And that is the hardest part.  I feel like now, more than ever, I perhaps understand maybe an ounce of what it's like for anyone dealing with a chronic illness.

So I started to make some changes.  A few months ago, I transitioned to more plant-based eating, switching two out of my three meals to be without meat.  I walk when I can during lunch.  The walking has helped my knees and hips, but I still wake up every morning with my fingers and hands in pain.  Still manageable, but it sucks.  It takes reminding myself, every day, that "I wish things could go back to the way before" is no longer an option.  It's an understanding that from the day of my diagnosis, my life changed.  Period.

In the end, I do want to talk about it.  I do want people to ask, check in.  I recognize it must be hard to understand, as with most anything else when you haven't experienced it firsthand, what it's like to feel crappy and push through it every single day.  Is there a moral to this story?  Be thankful for your health.  Take care of your body.  And thank God every day for husbands like mine, who sees me struggling and will do anything he can think of to help, who truly listens and supports me through all of the good AND all of the bad, and who never, ever lets me down.

And also?  It's okay to not be okay.  Check in with yourself too, and allow yourself some grace.

the little things

I’ve been thinking a lot about this time last year, the brief lull between chemo and radiation. It isn’t usually the “big picture” stuff that sticks with you.. It’s random details and facts pieced together a little haphazardly, somewhat like a dream you’re just waking up from. The one where you ask, “Did that really happen?” Yes, yes, it did.

Last year at this time i was dried out from chemo. My eyelashes and eyebrows seemed to all fall out at once. I was still getting used to venturing out in a wig, or even venturing out at all, with a 3-month-old baby at home in the middle of a raging pandemic. When I had seen those sticky notes in the dressing room, I had really needed them. I had barely been holding it together and maybe had shed a few tears. And then I kept going.

A couple of days ago, I was working on something with a coworker, the director of infusion services at the campus where I was treated. After our meeting, I asked her to hang on a few minutes longer so I could properly thank her and her team again for taking such good care of me during the most difficult time in my life and for seeing me through. Even at a year later, I continue to learn from my experience through the eyes of a survivor, and it’s still about the little things. All of those little things getting me through the BIGGEST thing.

So I’ll say it again: Look for the little things. Sometimes they’re everything.

At my CT simulation for radiation last year, 6/24/2020.

year in review

A year ago, my family and friends surprised me with a drive-by parade as I was finishing up chemo (the next day). It was truly a milestone, one of the most important in my life, and serves as a reminder, as milestones do, of what I'm capable of.

A year later, I wake up with aches every morning and my hands and fingers will physically hurt until I start moving them... a fun side effect of my meds. The joint pain continues like it had with chemo, but I push through like I always have.

I know now that it was naive to think that after active treatment, everything would return to "normal."  It was as if that part of my brain which knew it all along and wasn't ready to acknowledge it finally showed itself. I was a few months into taking my maintenance meds when I realized that I wouldn't ever feel the way that I used to, and needed to find a way to accept this part of my survivorship journey. It has truly been a lesson in managing both my physical and mental health. Now a year later, I know that I am strong in body and mind.

Every day is a blessing. I survive, and I live.

the mammogram

Ah, the diagnostic mammogram.  How can this lovely experience be described?  Think of a machine with clear, flat plates.  Then think of being positioned just right to be squished, nice and snug, between those plates, cranking and leaning and hugging and lots of pressure, and then being told not to breathe.

I was anxious about this one.  My first experience had been a nightmare – not the test itself but what had come later.  It was Halloween 2019.  After finding a lump in my left breast and checked by my OB, I was referred to Breast Health Services for an ultrasound only, being that I was almost 16 weeks pregnant at the time.  So a week later, I had had that ultrasound and then was told a mammogram would need to be ordered after all, so had to wait for my doctor to clear it.  What had started as a one-hour appointment eventually stretched to 4, as I proceeded with my first mammogram (ever) and then brought in subsequent times for more and more pictures.  The techs eventually fed me when they realized I hadn't had lunch since I naively thought I'd make it back to the office that afternoon.  My nerves were through the roof as I waited and waited, still in my gown, for the results to be read.  I knew something was amiss as the appointment stretched endlessly, even before I was brought back into the room to finally hear it with my own ears.

Afterwards, I had walked to the car in a daze.  I called my husband and broke down crying.  He told me to stay put so that he could pick me up, but realizing the late time, I had told him that I felt okay to drive home.  I texted my friend who had just been through this the year before, collected myself and took a breath, called the office, and then drove to my daughter's school parade.  Then I went trick-or-treating with her and pushed the nightmare aside for one night.

So yes, after the year I've had, I was anxious about this one.  It was the first mammogram after surgery and treatment, my first as a survivor.

This time, I was told to plan for up to 2 hours.  I was ready for the wait.  It wasn't painless, but it was quick, and I was grateful the results were read and given then and there.  When my name was called and, "It's good news!" followed, only then did my shoulders relax.  Thank. God.

As I walked to the car, it was frigid and windy, but the sun was shining.  I took a moment to collect myself.  I texted my husband and that same friend, and we shared a celebratory meme together, much like how we did after she had gone for hers a couple of months ago.

To all the other pink warriors out there – I feel you.  I'm with you.  I am you.

his faithfulness

A year ago, I had surgery to have my tumor removed.  It was two weeks before Christmas.  I was 23 weeks pregnant.

I remember the gnawing anxiety that morning, going through the motions – the ride to the hospital, checking in and the IV, being transported all over the hospital.  The first stop was Breast Health, then Nuclear Medicine, then back to pre-op to talk to Anesthesia and have OB check me.  I was scared to be put to sleep, more than I ever was.  I said a prayer for baby, and as I did many times before, asked him to stay with me.

When I awoke, the first sensation I had was the doppler on my belly checking for the fetal heart rate.  And then I let myself rest.

This morning, as I snuggled with Eli, I held him close, reminded of that day.  I brushed my fingers across his rosy cheeks and his button nose, and swept his hair back across his forehead, a gesture I learned that would comfort him when he was a newborn.  I marveled at him, our sweet, incredible baby boy, the rainbow after our loss only two years ago, and then pulled him as close as he would let me to give him kisses.  Once again I said a prayer of thanks to our awesome God for being with me that day and always, for staying even though I didn't realize then it was Him I was asking, for working that miracle so close to Christmas, for showing me again and again what faith feels like.

Every now and then, that anxiety comes back... that feeling of helplessness, the fear that Eli was impacted by my surgery or treatments, or having to come early.  But then he looks at me, his eyes so bright and his smile so wide, and the unbidden thoughts start to recede and the dread subsides.  Instead, I try to think of this day, because it was a day I had to trust, and believe, and be so ever thankful.

back to basics

“Back to Basics”

Thanksgiving 2020

Dear Eli,

Happy first Thanksgiving!  We will be celebrating at home apart from our families, but I hope that you will be able to feel the festive spirit in the air with the flurry in the kitchen and the levity of a day free of other commitments.  Originally, we had planned to have a small group at Nai-Nai and Yeh-Yeh’s in NJ, but state limitations on indoor social gatherings caused us to split up into even smaller groups.  Then, to add to the fun, you and your cousin both caught colds, and with travel restrictions for PA imposed, all signs pointed to us canceling our plans altogether.

Sophia must have overheard me (the girl does not miss a thing, I swear) talking to your father about how different Thanksgiving would be this year, because she has been echoing some of what I have said in conversation.  When Poppy was talking last weekend about Christmas coming soon, she exclaimed adamantly, “Don’t forget about Thanksgiving!  We get to play with our people.  We get to be together.”  Not wanting to burst her bubble, I wasn’t ready to tell her then that that actually would not be the case this year.  Even tonight at bedtime when she expressed that “for Thanksgiving, we get to eat with our whole family,” it was hard to find the words to explain that we were not gathering together “because of the germs.”  How does one explain a pandemic to a 5-year-old who was quarantined all spring and most of the summer while I underwent treatments?  Who lost her best friend in the world, her kitty “sister” Bianca, in the midst of all of that?  How do we avoid disappointing her when she has already been through so much – watching me lose my hair, comforting me on those nights before chemo when I would cry at the dinner table, being patient with me as I struggled to keep up with her nonstop energy, knowing which side of my body she could hug without hurting me?  It is so much.  A mom with cancer, a pandemic, and then came you.

You were born on March 18th.  The very next day, the governor of Pennsylvania signed the executive “stay at home” order.  We call you our quarantine baby, because since you were born, we have diligently limited contact with anyone outside of our household because you were so new.  You look into our eyes and can use context clues to recognize when we are smiling, because anyone around you has always worn a mask.  Truly, what a year to come into this world!  Who would have thought that we would not be able to hug and kiss one another, or that gathering around a shared table would logistically be so difficult?  I never imagined that I would be having conversations with your grandparents or aunts through our kitchen window, or that porch drop-offs would become a thing to do to get out of the house to take a ride.  And I never would have believed that my family members would have to wait over 5 long months to hold you for the first time.

Yet, you are simply oblivious to it all and are content as long as you are fed.  You watch your sister with pure adoration, like she is the most amazing person you know (which is true, and I hope is true for years to come).  To our surprise, you just started crawling and are enjoying the freedom to explore.  I watch you sitting up and muse about how big you are getting but at the same time how small you still look in Daddy’s arms.  I cherish that you continue to be a snuggle bug and prefer to nap on top of us, even if that means we cannot get to other things.  Those things can wait.  Yes, those things really can wait.

If there could be one lesson learned this year, it is that we do not need much of what we think we need.  It takes a diagnosis to shift one’s whole perspective.  It takes the loss of human contact to remember how precious it is.  It takes the threat of health to realize how important it becomes to keep your family safe.  It takes the birth of a child during “these unprecedented times” to resolve to be more present than ever before.  And it takes reassuring a 5-year-old that the world she once knew before the germs can still be trusted and forgiving, in time.  It takes patience.  It takes faith.  It takes a little grace.

Eli, we hear others discuss next year and how much they want things to feel “normal” again.  But I cannot forget this year, the year that has become a meme, the year that has been blamed and shamed and shrugged off like an anomaly.  Instead, it is the year that you found your way to us through what seemed like insurmountable odds, our double rainbow who literally stuck with me through my hardest days (a surgery! and chemo! while pregnant! – I will never stop marveling at that), our sweet, sweet miracle.  We have clung to you as you have become our beacon of hope, our shining light – it’s in your bright smile, your gentle touch, it is in the way that you need us.  Thank you, baby, for being a happy boy, for reminding us of the most basic things – love of family, joy for each new day, wonder for the little things, and hope for a better tomorrow.

Happy Thanksgiving, Anthony Elijah, the first of many more.

Love,

Mommy

quarantine life

It’s been a crazy 6+ months. I say this because our little family has gone through quite a lot. And aside from our daughter witnessing my breast cancer journey firsthand, and gaining a brother pretty much at the same time, I’ve noticed that the pandemic has affected her in other ways as well:

• She flips out every time we ask her to wash her hands... again.
• We no longer hug/kiss our relatives as greetings or goodbyes.
• She’s immediately defensive when I start questioning her playground habits: “But we wiped everything down and I used hand sanitizer!” 
• Although she has no issues wearing her mask, she constantly questions why others aren't.
• She’s learned to live in the car, so if she needs the restroom then it means in the trunk, in the travel potty.
• She asks, “Remember when we went to that restaurant/park/festival/museum/concert?” like it  was a lifetime ago.
• When she wants to do something but we can’t, her response is, “I just wish this whole germ thing was over.”

And the baby? Well, he knows when you’re smiling even while wearing a mask, because that’s all he’s known his entire life.

Sometimes, I think it can be easy to forget what our little ones are going through because of all the change we’re dealing with ourselves. Children are resilient, yes; but almost everything they knew only a few short months ago was turned upside down. Add to that the pressure of navigating school in a whole new way... and it’s no wonder some days are harder than others.

Maybe we should give them a little time and space. Maybe we should be gentler, and steadfast, and honest. Maybe we should pray for our children’s educators, like my sister, and so many others, who are giving it their all despite this different and unrecognizable world we’re living in. And maybe we could show each other some grace.