a different kind of mother's day

Dear Sophia and Eli,

Mother's Day 2020

This Mother's Day is like no other.  Not only because we are in the midst of a pandemic, but because I have been fighting physically -- in a good way -- to ensure I can be there for you in the future.  It has, quite literally, been the fight of my life, and some days I am wracked with guilt that I can't be the mommy to you that I want to be.  There are days that my body is aching pretty much everywhere, and my fingers are so numb that I'm struggling to wash bottles and braid hair, and my knees feel like they are going to buckle -- and on those days I'm terrified of holding you, Eli, and can see the understanding dawn in your eyes, Soph, when I'm drained of energy and can't play with you on the floor (because I can't make it comfortably on to the floor, and if I do, there's no chance of me getting back up).  It hurts, and not just physically.  I so wish things could be different, and that there weren't days that either of you would see and feel me crying, or pulling back and being sensitive about how much hair I've lost, but I tell myself to keep moving because of you.

Sophia, this is our fifth Mother's Day together, and since the day you made me a mom you've kept me on my toes -- driven me, challenged me, given me a lesson or three.  You've taught me about compassion and kindness and grace.  You've grown into a loving, bright, and beautiful little lady and made me so proud of how you take care of our family and share and use "big" words and hold your own in a room full of boys.  I love how you still call me "momma," and climb into bed with me at 3 AM and reach for my hand, that you ask me to lay with you to chat about the day, and how you run back to me with open arms in the mornings for a "huggie."  I love that you always think of Lily and Lucas, and pick flowers for their graves and for me, too, every day.  I love that you comfort me when I'm down and tell me things are going to be okay, that you ask which side of my body hurts so you'll avoid it, that you are incredibly patient and understanding when I'm slower than normal.  Thank you for giving me a pass when I need it and showing me love.  Don't ever change, sweetheart.

Eli, on this first Mother's Day with you we've already been through so much, haven't we?  You are my strong boy, going through chemo with me, helping me overcome fear and finding a way to persevere.  Each day, I look at your perfect face and fingers and toes and thank God that we made it through.  From day one, you have been the sweetest little man.  I love your creaky noises and that you like to gnaw on my face, or that you can find that spot on my chest to snuggle in for a warm nap.  I love when you look at me and smile, or stick your tongue out after I do, or pretend that you're not interested in eating but in the next second you're insatiable.  I love how similar you look to your sister but how different you are as babies.  I love that despite what I'm going through, you've given me another perspective on motherhood, another chance to enjoy this round of firsts again.  I'm thankful for this time we have together in our tiny bubble when the world was changing around us.

Remember this Mother's Day.  Remember it because it was different, and hard, and pivotal.  Remember it because it forced us to change, and pause, and see it from another angle.  And remember that this Mother's Day, and every Mother's Day, I am blessed beyond words to be your momma, and will always fight to be there for you as long as I am able.

Love,
Mommy

chemo #6

Chemo #6 today and my second on Taxol.  After getting through the first round of Taxol and knowing what to expect, I felt a bit more prepared for this treatment.  (Not prepared for what actually happened, but we'll get to that...)

Posing with the #6 sign from my daughter.

These little notes always mean so much!

I normally get bloodwork a few days before treatment, but due to everything going on with COVID-19, I wanted to minimize visits outside of the house of any kind, even to the lab, if possible.  So I called my oncologist's office last week to ask if the bloodwork could be drawn at my office visit prior to treatment and was given the okay as long as I could arrive earlier.

A note about doctor's offices... They are constantly making updates due to the pandemic to keep all of us safe.  I have visits every 2 weeks, and at my last visit there was a physical barrier to direct patients to stand back at registration but this time there was a glass shield enclosing all the registrars and the waiting room was reconfigured for social distancing.  I think about how incredibly busy my oncologist's office was at my first visit when everyone had someone with them and how different it is only a few short months later.

Despite my earlier arrival, my blood wasn't drawn until the end of my visit, so by the time I made it to treatment, the lab hadn't released the results yet.  That meant my nurse had to wait for the green light from my oncologist before my infusion could start.  I already had my cap on and port accessed but we had to wait.

Once treatment started, things progressed pretty quickly.  Like the first time, the Benadryl nearly knocked me out... but I couldn't quite let myself drift off to sleep.  Have you ever felt like you were crawling out of your skin?  That's how it felt about a half hour in.  I stretched my legs and just couldn't get comfortable, like my body was telling me something.  I figured maybe it was time to eat so took out my packed lunch.  After a few bites, I had to stop because it felt like my stomach was burning.  My face felt hot and my eyes started to water.  I actually took a picture of myself to see if I looked flushed and my eyes appeared red.  It was hard to decipher if I was more short of breath under my mask, but I knew something wasn't right.  So I told my nurse I felt weird, and couldn't quite explain it, but she stopped my infusion right away and I saw her dashing around the corner while my eyes were getting heavy...

When I felt alert again, it was like suddenly there were 4-5 people in front of me, all doing different things and talking to me.  Through the fog of my brain I still remember being impressed by the coordination.  I was flushed out and given more Benadryl and Pepcid, and my vitals were monitored.  My heart rate was high but otherwise everything else appeared okay.  It seems I had a mild reaction to the Taxol.  My oncologist was contacted, and once I returned to baseline we had to wait another 30 minutes before restarting.  I think back to this moment now, and how it could have been much scarier but the nurses helped me through.  I'm so grateful for the team of nurses that had assured me they were trained for dealing with instances such as this, and that I actually saw it in action and know that to be the truth.

The rest of treatment was uneventful except that the added time due to all the delays had me wearing the cold cap for close to 7 hours.  That definitely left a mark...

A really long day with the cold cap on. And the mask too...

And by the time I left the infusion center, it had already cleared out for the day.

I saw at least 4 other patients come and go in the time I was there.

After all of that, tired is an understatement.  What a day.

second-time mommy

Dear Eli,

When Sophia was about a year old, your Daddy asked me for my thoughts on when we'd have another baby.  To his surprise and dismay, it spurred on a rush of tears from me and I had trouble verbalizing why.  It wasn't that I didn't want to give your sister a sibling, because I absolutely wanted to; we had always talked about wanting more kids.  It was that I loved every second of motherhood and couldn't imagine losing out on experiencing all of those firsts with her and only her.  I didn't want to miss out on any more time while it was just the three of us.  I guess the simplest way to explain what I was feeling is that... I was unsure how I could possibly learn to share my heart.

Today you are three weeks old, which means we've arrived at your original due date.  I remember when we had scheduled my induction, time seemed to suddenly speed up -- the weeks were flying by and there didn't seem to be enough weekends to get your nursery reorganized and all your little clothes washed and folded away, and the car seat in or the pack and play set up.  And while I had wished for more time then, now that you've been with us I couldn't imagine it any other way.

Today at 3 weeks old!

Even a bit early, you came in to this world at 7 lbs, 0.35 oz, and 20.25 inches long.  We wonder how much bigger you would be today!  You had a full head of thick, dark hair, the feel of it much like your dad's now.  (My OB was trying to describe it while I was pushing you out and encouraged me to 'reach down there and touch his head,' so I actually did and freaked myself out a bit).  The resemblance to your big sister as a baby was uncanny.  There are numerous similarities, but slight differences too.  You have long fingers and "Jana finger toes," which one day you'll understand once you meet your aunt.

Your sister vs. you... twinning!

"Hi, I'm new here. Are you my Mommy?"

Aunt Jana finger toes

You were born during an extremely interesting time.  We are in the midst of a pandemic, where the safest thing for us to do is to socially distance ourselves to stay healthy.  Timing-wise, we had planned to be home-bound anyway, but the most difficult part is that our families are still unable to meet you.  Fortunately for technology, you made your debut via FaceTime and Zoom to extended family on your Yeh-Yeh's birthday, and even through our kitchen window with your daddy's parents, but we're hoping that one day soon that your grandparents and great-Nan and aunts and uncles and many others that love you will be able to see and feel you in person.

Zoom with extended family

Happy 69th birthday, Yeh-Yeh! (on 3/31/20)

Your sister, though, who is around... She is absolutely in awe of you.  The hospital wasn't allowing visitors, so to our disappointment we had to wait until after discharge to introduce her to you and she was crazy excited to catch her first glimpse of your face.  Every day she diligently washes her hands (singing "Happy Birthday" twice) as soon as she comes home so that she can hold you, and some days she refuses to let you go.  We've included you in her bedtime routine so that she can feed you or have you at her side during storytime.  Last night, she stayed up until 9:30 because she was waiting for me to read to her, so I convinced her to join me in the nursery where I fed you and read to her as she flipped the pages for me.  Learning to multitask!

Singing "Rock-A-Bye Baby" (and other songs she makes up)

Right now you are napping (sort of) in between meals, so I thought I'd use this precious little time I have to tell you about yourself and these first few weeks.  You are by no means a quiet baby, which is why I said you were "sort of" napping.  Most times you are making some kind of noise -- a creak (to which Sophia has affectionately nicknamed you "the creaky door"), a grunt, a gurgle, a sneeze, a cough, a short cry -- so I check in on you and your eyes are closed or fluttering.  When I burp you, you're humming along, so with each pat there's an alternate sound and it makes me laugh.  You're active in your sleep too.  Sometimes you've wiggled almost perpendicular from where I had laid you down, your legs up in the air and your tiny fists at your side.  You seem to be able to nearly roll to one side already.  Like your sister, you manage to always kick off a sock or flail away a mitten or wiggle off your hat.  We seem to always flop your ears back whenever we put your hats on, and have determined that the shape of your ears are a mixture of both your dad's and mine.  Diaper changes usually involve a small foot right into your own mess and subsequent crying, which at times can escalate until it appears that your lips and cheeks are vibrating, while I try to minimize the poo splattering and potential fountain of pee on other things.  (Yes, I've been reduced to using those words).

"When my mom thinks everything is cute... including my hiccups."

Yet in your quiet moments, you are the sweetest boy.  You can lie down awake and look at the world around you, sometimes with your noisy commentary.  Your hiccups come on as frequently as they did while you were in my belly, and somehow even those are adorable.  I love how you fit perfectly in that small space on my shoulder, cuddled up in a ball with me rubbing your back.  That was one of my favorite memories with Sophia, and time had passed too quickly before she had grown too big for that spot.  But for now, I don't even mind that it's right where my port is, because I know to cherish this moment that I can snuggle with you there.  Sometimes when I touch your cheek, you do this smirky thing in your sleep.  Other times you open your eyes and look at me, and I tell you I'm your momma.  The first time you did that, it was almost as if you recognized me and were asking, "Are you my mommy, the one who was talking to me all that time?  The one telling me to stay with you, through it all?"  Yes, it was me, and I'm so glad you did.  Yesterday I told you I loved you and you smiled in response, and when I repeated it and you smiled again, my heart melted.  I love every baby smell, and sneak whiffs of your hair, whether freshly washed or matted under your cap, and don't even mind your milk breath when we're doing tummy time, or even more still when I know you need a diaper change.

Nighttime is your party time.  Your sister would hardly nap during the day but you're the opposite.  Usually around 10-11 pm, you're wide awake and ready for a feast.  And boy, can you eat!  We were able to obtain generously donated breastmilk from a couple of friends, and you are mowing through it.  Whenever you're really hungry and becoming impatient, your mouth flaps open like a baby bird and you start sucking on your hands, so we do this funny bit where I'm trying to get the nipple in your mouth before you snap it shut again while prying your hands away.  Today you actually grabbed on to the bottle and could essentially feed yourself.  Do you even need me anymore?

"Hey ladies!"

"I'm so hungry I will feed on my hands. Tasty."

"I got this."

I'm enjoying this time with you.  With Soph, I was constantly vacillating somewhere between joy and terror... the goal was to keep her alive, of course, and I obviously didn't want to fail at that.  This second time around, I'm a bit more confident since I've decided I kind of know what I'm doing.  Beyond that and my treatments, fighting through the fatigue (of having a newborn or chemo, who knows which), late night/early morning feedings, napping when you nap or prepping for your next feeding... the blur and humdrum routine of it, the peace and simple joys of motherhood again, of you needing me for a little while longer... I'm happy, I'm content, and I'm savoring it all.

And I realize now, after all those years since that night when I thought I couldn't share my heart -- I was wrong and silly to believe that.  My heart is wide open again, and you, my sweet, darling, amazing, miracle son, have a huge place in it.

Love,
Mommy

the final countdown

It's a very odd time to be this pregnant during a pandemic.  On the one hand, I'm trying to stay grounded... I work for a health system after all, and have always practiced hand hygiene and been a germaphobe with our four-year-old.  On the other, I'm being induced in 5 days (yes, 5!) and restarting chemo 5 days after that (yes, 5).  So feeling a bit vulnerable?  Definitely.

But if there's anything I've learned over the years, and especially over the last few months, fear will get you nowhere.  I could have been paralyzed by it -- when I first found the lump in my breast, when I had the biopsy, when I was given a cancer diagnosis, when I underwent surgery.  I could have been overcome with it -- when I started treatments, when my hair started falling out, when I knew I had to be strong for my baby.  I could have let it slow me down, but instead, I let it drive me as it normally does -- to do the same things I've always done, to continue moving, to keep our little girl happy and unaware and maintain a semblance of a routine.

So tonight we did what we'd normally do and braved the store for some last-minute items before baby.  I'll have to admit, it was the weirdest Target run ever (and at the same time a bit fascinating, when you're trying to figure out why certain items are being stockpiled more than others).

I legitimately needed baby wipes. This is what was left.

Just being there and seeing those empty shelves felt a bit like panic, and I didn't want to be there longer than I needed to.  But I'm happy to report there was plenty of ice cream for this momma and Paw Patrol sneakers in the right size (score!) for a delighted soon-to-be big sister, so at least we managed to pick up some of the items we actually intended to get.  I'm convinced it's those little things that will keep us sane...

Last MFM visit at 36w2d! (and last MFM visit ever).
The final countdown begins!

chemo #2

Chemo #2 today!  And last one while pregnant (thank goodness).  I'm 33 weeks and counting, and hard to believe that I originally was going to be induced in less than 2 weeks from now.

A sweet note/pick-me-up from a
friend on the way to treatment.

Today I was in a room/bed instead of a bay (a rarity, I'm told), but here's a picture for the full effect.  You'd think it would be more comfortable than the chair, but it was harder getting in and out (probably because of my big belly).  I can't fully lie down due to the cold cap, so preferred sitting up.  Speaking of the cold cap... I was in that t-shirt for the majority of the time, not even needing my cardigan or the blanket.  The nurses were in disbelief but I truly run hot while pregnant.  Maybe a weird blessing in disguise?

To pass the time, I had a list of things to do including kindergarten registration along with ALL of the required forms for our big girl... so hard to believe she will be taking that next step so soon.  And I feel like I haven't filled out that many forms in a long time.  Apparently her elementary school is offering both a part-time and full-time option, but we won't find out if she "passes" into the full-time option until August.  Her daycare also offers a full-day kindergarten so we looked into that as well.  As parents, we feel a bit lost... We've had our daycare routine since she was 3 months old, so this is uncharted territory.  Big changes in the near future!

Anthony brought this book along that we've been reading to Sophia.
It is well-written and highly recommended for introducing a child to
what cancer is and what happens with treatment, etc.

Partway through treatment, my husband ran out for a bathroom break and I heard him talking to someone on his way back.  At first I thought he was talking to another patient, because at times he can be friendly like that, but then realized it must be someone he knew.  After awhile, he came in to tell me it was one of his work colleagues (who I've met before) and his wife, who was undergoing treatment and asked if it would be okay to introduce us.  Of course!  So he brought both of them in our little room and we chatted awhile.  She was undergoing Taxol treatments, which I start next, so I asked her some questions.  Apparently they had both seen us at my last treatment but weren't quite sure if it was us.  It really is a small world.

After treatment today, we are packing up the car and driving to Hershey for the weekend.  I've always thought that it's important to make time for family, no matter how busy our lives are or how hard things get.  I had booked a mini-trip for the 3 of us as a Valentine's Day gift prior to baby's arrival and opted not to change our plans once chemo was scheduled.  My mom was really concerned about us going, but I assured her that I'd rest in the short car ride over and to take it easy.  I'm actually really looking forward to spending time away together as a family.  More to come on our trip later!

Post-treatment meal! Takeout from the Mexican restaurant
down the street is becoming a thing.

hair and there

My hair is falling out.

I knew it would, but knowing it didn't make it any easier when it started happening.  It was two weeks to the day of treatment when I noticed the shedding, right on schedule.  I had decided to try the scalp cooling despite the extended chair time, despite the ridiculous cost... because it was important to me not to be "marked" as a sick person.  Not to look and feel sick.  Not to have strangers know about a fight I was intimately experiencing or being the subject of sympathy.  And even though I knew thinning was likely to happen, when it actually did I was almost terrified by how much.

Today was one of those days that I was feeling particularly sensitive about it.  My husband cracked a harmless joke and I found myself crying during dinner.  Our daughter came over to comfort me and said, "It's okay, Mommy.  Some people don't have hair.  Some people have hair, and those that don't are really cool."

Sometimes you just need a four-year-old's perspective.

chemo day 1

First day of chemo.  My husband asked me last night if I was ready, and I told him I wasn't sure if I'd truly feel ready.  I mean, my chemo bag was packed, I read through all the literature on my meds, picked out my outfit, checked off my lists.  So I was prepared, yes.  But feeling ready?  I just really wished I didn't have to be ready for something like this.

Soph had a bit of a meltdown at bedtime since we know she could feel the stress we've been managing.  She understands that I'm sick and that I'll be given medicine.  In her world, that's kind of like having a cold or the ever-present daycare cough, maybe a visit to the doctor for medicine, and gradually getting over it.  It's hard explaining 16 rounds of chemo to a 4-year-old for her to comprehend... so I use terms she understands and then put on my brave face to try to keep our home life as unaffected and routine as possible.

This morning we were up a bit earlier so my MIL could bring Soph to school and we could be on our way to the hospital by 7:30.  The scheduler had told me the infusion center had allotted 7 hours so I was prepared for a long day.  My nurse was ready for me and talked me through every step, which helped to ease my anxiety.

My weight/height and vitals were taken and recorded.  Next came the cold cap/scalp cooling prep.  Even though I watched the educational videos on how to prep and fit, it was more of a two-person job to make sure the cap was as snug as it could be to my head.  Once it was plugged in, then my port was accessed and pre-meds were started.

First one, 15 more to go!

The nurses were amazing.  They hooked me up with my favorite treat. And the cup that Anthony got me for Christmas was perfect for treatment.

Time to get comfy!

And then it was time to start A/C therapy.  I was most nervous about Adriamycin (I mean, look at the color of it!) and the fact that the nurses suit up to administer it, but besides the metallic taste in my mouth, I seemed to tolerate it fine.  The infused Cytoxan hit my sinuses though, enough for me to say something.  A bit of ice on my nose and it relieved the pressure.

The "A" part of chemotherapy.

Effect of "C" on me.

Then it was time to wait.  Time seemed to pass fairly quickly... IR visited to check on my port, and the dietitian I had requested for a nutrition counseling went over how I could feed my body to help manage potential symptoms.  After treatment, I had to sit with the cold cap for 90 minutes.  After the first 10 minutes or so getting used to the cold, it wasn't so bad.  The nurses couldn't believe I wasn't even using a blanket, but I think that's partly because I run hot naturally and even hotter with pregnancy.  So in a weird way, that may have kind of worked in my favor?  As the countdown was nearing an end though, I definitely was eager to have it thaw and off my head.  Vitals were checked again, and soon after, we packed up and headed out.  One down!  And onward...

Post-chemo meal.  So glad I could eat.

P.S. The fatigue hit me later... and I've been pushing through like my nurse had recommended at my chemo teaching.  It came on like she had described it would, like that feeling you get when your body is readying itself to fight off an illness -- a bit flushed, working on overdrive.  The way I see it, I've been growing a little human inside me for 7 months now with an active preschooler at home, so I kind of understand managing fatigue and moving forward.  And that's all I can really do for now.