a welcome surprise

My teams surprised me with a cake today and it was such a wonderful treat to celebrate baby mango.  Less than 2 weeks ago, I found out that I need chemo after all, and am already scheduled for my first infusion this Friday.  Needless to say, there’s been a lot on my mind... and it often can overshadow the joy of carrying the life inside me.  So thank you to my awesome coworkers for reminding me to pause and simply be grateful.

insurance policy

Here I am on my husband's birthday, sitting in the lab for 3+ hours for my dreaded 3-hour GTT (which luckily for me I've done numerous times due to PCOS and insulin resistance).  At the same time, I was scheduled for a full CBC panel so thought, why not?  Five vials of blood so far, 1.5 hours down, baby is kicking like crazy, and I could really go for a hamburger.

We met with hematology/oncology on Thursday afternoon, and so much has changed in a matter of days.  My Oncotype DX (https://www.oncotypeiq.com/en-US) recurrence score came back on my tumor, and to my surprise and dismay, it indicated a high risk of recurrence.  While my surgeon and I both thought and hoped I could be spared chemotherapy and move straight to radiation after delivery, that is no longer the case.  With the new information, the statistics show that with both a combination of chemo and endocrine therapy, the risk of recurrence in my individual case will decrease by half.  In my oncologist's words, he said I would benefit from chemotherapy and the treatment would be like "an insurance policy."

Even though I don't always feel it, I know I'm young to be diagnosed with breast cancer.  At my age, I wouldn't have been scheduled for my first mammogram for a couple years yet and my oncologist said it was good that I had found the lump on my own.  It's because of my age that I understand the recommendation for chemotherapy, as difficult as it was to hear and process.  My logical mind could understand those facts, but the mother in me immediately thought of the child I'm carrying and what it would mean for the both of us moving forward.

We discussed timing.  I had a few options.  The standard is to treat pregnant patients like non-pregnant ones.  A few adjustments would be made, yes, but overall chemotherapy is "safe" when it is administered in the second and third trimesters since all the baby's organs are fully formed.  Does that just blow your mind or what?  I had been told this by my nurse navigator the same day I was diagnosed, but hadn't been ready to process it then since I was hoping for a miracle.  So option #1 is to start treatments right away.  I would go through 2 phases, the first being 4 cycles of Adriamycin/Cyclophosphamide every 3 weeks since I wouldn't get the booster shot being pregnant and it would take that long for my blood counts to recover.  The second phase would be Taxol every week for 12 weeks, which means when all is said and done, that is roughly 6 months of chemo.  So timing is crucial.  My oncologist felt I shouldn't delay, otherwise I would not see the benefit in the long run.  We talked at length about chemo during pregnancy.  Since I'm currently 28 weeks, he recommended that I start as soon as possible so that we could undergo 2 cycles prior to stopping at 35 weeks, before resuming treatment a week after delivery.  Since my pregnancy is being followed by MFM, we agreed consultation was necessary with all providers involved to give their blessing.

I had an appointment with my OB that same evening where we discussed the risks and benefits, and she promised to reach out to MFM before my appointment the next morning.  MFM consulted with my husband and me on Friday morning, covering the research on chemotherapy drugs during pregnancy and any reported incidents of issues affecting babies.  We talked about coordinating therapy with a delivery date, as inducted at 35 weeks was no longer necessary but at 36-37 weeks a distinct possibility.  We agreed to a referral to the NICU to prepare for a pre-term baby and what to expect.  Meanwhile, baby, at 28w2d is measuring at 30 weeks, already 3 lbs 3 oz, and as my OB says, happy and snug and pretty much oblivious to everything going on outside of the womb.

By Friday afternoon, I was already scheduled for my bloodwork, 2D echo, nurse education, port placement, first 2 cycles of chemo, and follow-up nadir visits.  My first chemo will be in less than 2 weeks.

Besides our families and a few select friends, we haven't updated anyone else on this new development.  My initial feeling?  A bit of fear.  Baby and I have made it this far, through surgery and recovery, and I'm scared of going through anything else that could put him at risk.  It's a bit hard to align my head with my heart, so I've been relying on my logic to move forward.  My parents are currently overseas and can sense them freaking out a bit.  Obviously, this wouldn't have been my choice.  Who wants to go through chemotherapy?  Especially while pregnant?  But my oncologist assured me he's seen it done with successful outcomes and I think my MFM provider said it best when he said I need to get healthy to be around for my kids' weddings.  So here I go... investing in our future.

our anthem

“Our Anthem”

Thanksgiving 2019

Dear Sophia,

Earlier this year, you discovered a song by Rachel Platten called “Fight Song” that has become your anthem.  You know all of the lyrics and sing them at the top of your lungs, sometimes accompanied by your interpretive dancing/running/spinning, other times paired with the made-up hand motions you created with your daddy.  The first few times you had listened to the song, you had asked me what the singer was fighting about – but I explained it was more of what she was fighting for – her strength and perseverance in times of hardship, her way of finding herself and pushing through.  That song has been recognized over the years as one of hope amid challenge, used as theme songs for TV competitions, campaigns for cancer, championships, and even elections.  This year, more than ever (and not because you sing the song to me over and over), I have a reason to repeat the words like a mantra to myself.

Sophia, in short, this year has been tough.  As you have been insistent on inserting your independence, you’ve discovered things are not as simple as they used to be.  It has been more challenging to be you within our timeframes and expectations.  You have seen that your parents are not perfect – we argue with ourselves and each other, we are not always patient, and we hurt too.  You hugged me when I cried after I miscarried (without knowing the reason), and you wiped away my tears on Lily and Lucas’s birthdays.  Being four has meant more – more to comprehend, more depth and width of emotions, more energy and compassion – and you are constantly learning to adapt.

This summer I completed my master’s degree, but not without sacrifice.  I had doubled up on courses in the last few semesters and had to travel to school as well.  I lost out on large chunks of time with you and often (barely) functioned on just a handful of hours’ sleep.  Every time I had an errant thought about not being able to do it or that I was actually crazy enough to think I could, I would take a breath and reframe and restart – and seeing the proud look on your face the first time I put on my cap and gown told me it had all been worthwhile.

At the same time, unbeknownst to you, I was going through another cycle of IVF.  Daddy would administer my shots after your bedtime, but a couple of times you snuck downstairs and caught us, asking what the needles were for.  We would tell you it was medicine.  While we had a successful egg retrieval in the first round, they unfortunately yielded no embryos we could use, so we made the complicated decision to go through the process all over again.  And that process led to your baby brother.  As a result, we have felt incredibly blessed, and your aunt Sarah pointed out that he is like our double rainbow baby, following my miscarriage last fall.  He has felt very much like a miracle, kicking around in my belly to let me know he’s there, even while I am writing this.

Yet this is life, right?  And life has a way of reminding us that not everything is constant.  At 15 weeks pregnant, I found a lump, and by 18 weeks I had, unbelievably, been diagnosed with breast cancer.  We haven’t said the “c” word to you but will be explaining in a few short weeks about my illness and subsequent surgery, and what will happen next with managing the baby and treatments.

Somehow, I know that this life change that our little family is going through is the most significant to date.  The dichotomy of growing a life within a body that is fighting itself is nearly indescribable.  At times I feel I am unable to grasp the magnitude of what’s ahead, instead focusing only on the next step, for fear of drowning in the sobering reality of it all.  Other times, I feel like I was dealt this hand like a testimony of my truth.  So if there is any wisdom that I can impart on you from my experience this year, it would be:

Have conviction.  Believe in yourself and rely on your inner strength.  There were plenty of times I could have quit, while juggling being a wife and mother with graduate school and implementations at work and fertility treatments.  I cannot even tell you how often I have been told that I was “taking on too much” or “trying to do it all” – but when you go after the things that matter, you will understand it won’t be an easy road to get there, and that sometimes sacrifice is worth it.  If there is a single message I want to give you as your mother, it is that you can do anything you set your mind to.

Keep moving.  In the worst of times, it is hard to move in any direction, much less forward.  Those daily, mundane tasks we feel plagued by can seem so limiting.  Yet it is in those small things we find joy, and sometimes we just need to rediscover those little moments to keep us going.

Know your limits.  Once you have set your priorities, then you will know it’s okay to say no.  After I was diagnosed, it took me falling ill with a cold to tell me that my body needed rest.  I am usually planning our next outing or adventure, but realized I need to focus on getting well now so that I can do those things with you and your brother in the future.  Again, a sacrifice of sorts, but one with a clear objective.

Trust in others.  I have learned that you can rely on others.  I’m grateful for the team of doctors and specialists working together to develop my plan of care.  In addition, we have always been blessed with a solid family unit and support system, everyone from our church community to our friends and colleagues.  It is not a burden to call on others for help, something I know that is hard to understand at your age when you are trying to establish that you can handle things on your own.  However, one day you will need the help, so simply be thankful it is there and will be offered.

Sophia, I know that these tidbits of advice will only start to piece together as you grow older, but I also recognize how much you already understand.  So I want to remind you that I will always fight hard for you (and your soon-to-be little brother), and that you and your father have consistently given me strength that I did not realize I had.  And even though I cannot promise that we will not face difficult days ahead, I can promise that my love for you is steadfast.  Happy Thanksgiving, my dear, sweet girl, and don’t forget to count your blessings – they are always there, even if we are blinded from seeing them.

Love,

Mommy

a diagnosis

Over the years, I have come across stories of women who have overcome cancer while pregnant, becoming mothers and survivors at the same time.  I'd weep reading these stories, marveling at their strength, touched by the rawness of life and struggle and endurance.  These women are incredible.

And now, at 18w1d, I'm faced with a cancer diagnosis of my own.  I waffle between disbelief and tears.  I can't describe the feeling -- shock, maybe, feeling somewhat overwhelmed by the appointments and information pamphlets, thankful for nurse navigators and a support network, and scared for the outlook for my baby and me.  But incredible?  I don't feel incredible.  Perhaps incredibly unlucky.

It all started three weeks ago.  I was in the shower and my fingers noticed something in my left breast that wasn't there before.  I felt around for it, unsure, but there it was.  A lump.  There was definitely a lump.  I self-check regularly but had never felt a lump before.  My mind immediately started going to the worst case scenarios and I shut them down.  I was pregnant, and breasts could get lumpy during pregnancy.  On auto-pilot, I got ready for work, texted my husband who was away, presented at a meeting, and called the doctor.  They scheduled me to come in the following Monday, reiterating my own thoughts about all the things I could be when pregnant.  My OB referred me to Breast Health Services and I was there by Halloween.  We started out with an ultrasound and the radiologist requested a mammogram, despite me being pregnant.  I'd never had one before, and let's just say it wasn't the most fun experience.  So an "up to two-hour" appointment turned to four hours, and in the end the radiologist told me, "There's something there... highly suspicious for malignancy."  My BI-RADS score was 4C, which I understood to indicate a high risk of breast cancer.

It wasn't until I had walked safely back into my car and called my husband that the tears came.  I found that I was angry.  How could the radiologist have said that, before my biopsy, which was already scheduled for the following Tuesday?  It was unsettling.  I think holding on to anger was easier than facing the fear.  I reached out to a friend that had just gone through all of this within the last year, and she told me to trick or treat with my daughter.  So that's what I did.

That weekend, my husband and I celebrated our twelfth wedding anniversary, fifteen years together, with all of this in the back of our minds.  We spent a lot of time together and clung to hope.  Snuggled with our daughter and started the week like we normally would.

On Tuesday, I went in for my biopsy.  My sister assured me it would be a piece of cake, because I had a high pain tolerance.  I'd been poked with plenty of needles before, having gone through IVF and all.  The radiologist said she'd start me out with a lighter dose of lidocaine because I was pregnant, and I agreed.  I couldn't feel the incision, but as soon as the biopsy needle was in, I realized that I could feel it.  "Did it feel like a rubber band, or worse?"  "Worse," I replied, and it had definitely been worse.  The doctor gave me more lidocaine and two samples were taken.  My read appointment was scheduled for Friday.

While at my Maternal Fetal Medicine appointment on Thursday, I received a call.  Could I go in that afternoon for results?  After some deliberation and coordination with my husband, I decided it would be best.

A ductal invasive carcinoma.  It was cancer.  Not all of the results were back yet on the markers/proteins which would help determine the nature of the cancer and treatment options.  I was already scheduled with a breast surgeon the following day.

On our way home, my husband stated that the "c" word just makes it incredibly real.  Incredibly complicated with our baby.  Incredibly unfortunate.  Incredibly heartbreaking.

He keeps asking me how I'm feeling.  I'm not really sure, but feel the numbness settling in.  Still processing.  I'll let you know...

plea...se

Please stop asking me if I'm expecting.

In the last 24 hours, I was asked by two different people who I know whether I am expecting another.  Another what, you ask?  A baby.  Yes, a baby.

In the first case, we ran into someone while eating lunch, and the woman flat-out asked me, "Are you expecting another?"  At first, I thought she meant if the open seat at our table was going to be occupied.  In fact, I almost pulled out the chair for her, until I saw the look on my husband's face -- somewhere between disappointment and hurt for me -- and my heart sank.  Oh.  She meant that.

The second occurrence happened at work.  It came with a gesture towards my belly, and having just experienced the mortification of answering the same question the day before, I recovered and moved on quickly.  "Oh, no, it must be the shape of my dress," I replied, and I even flicked my dress for good measure.  The weather has warmed up enough for flowy dresses, and I guess that's an immediate indication of pregnancy.  But inside I was thinking, "Really?? Who asks that?"

A lot of people, that's who.  Sadly, I have been asked this question at work and elsewhere before, and even by this same person a mere week after I had miscarried in the fall.  I had thought that my way-too-detailed response in the past would have swayed them from asking again, but apparently not.  Is it open season on any woman of child-bearing age for the slew of inappropriate questions?

I would never ask somebody this.  Do you know why?  Because a woman's reproductive status is deeply personal.  Because I know many women, like me, who have struggled and fought to get pregnant for YEARS, who wish it were as easy as knowing it were up to them and they could believe a baby into existence.  Because when you ask this question, it's hurtful to anyone who has been poked and prodded and tested and scanned and has been waiting and waiting and waiting... and still waiting for that glimmer of hope or a break in the endless cycle of their bodies failing them.  Because even though I am open to talking about all these things, it still stings.

So please stop asking me if I'm expecting, or if/when I'm having another.

If I were to answer this question honestly, of course I would love another.  When Anthony and I first got married, we'd joke about having six kids or compromise at four, as if it were up to us.  Little did we know the infertility journey we were about to take.  Little did we know it would take us three years to conceive through IVF, that we'd lose our twins halfway into my pregnancy, that we'd experience a failed cycle two years later.  Little did we know it would take a third cycle to bring us our miracle baby, and not without pregnancy complications, or that we'd keep the happy news a secret until I was nearly six months along before telling our own families, out of fear for us and protection for them.  Little did we know that three years later, when I finally got up the courage, we'd go for that final precious frozen embryo, and that I'd get pregnant, but then I'd ultimately miscarry.  So the short answer?  I would love to have another baby.  But we don't always get what we want, do we?

Sometimes I wish I wouldn't shrug it off as ignorance.  Sometimes I wish I could give the long answer.  Sometimes I wish that I had the will and the tolerance to explain how hurtful this question is, but today I make my plea: Please. stop. asking. me. if. I'm. expecting.

Instead, ask me about my beautiful, incredible rainbow baby.  Ask me about how she understands, even at this young age, that she has siblings who are with her always but not physically here, and how she goes out of her way to include them in her every day.  Ask me about how she's given me the gift of motherhood and taught me to love far beyond myself.

Maybe she'll be our one and only (living) baby.  And maybe someday I'll be at peace with that.  And maybe, just maybe, I will share that with you in my own time.

care-full

I was driving home tonight when I noticed a figure on the sidewalk -- a boy, about 9 years old, his arms and legs flailing.  It took me a minute to realize this was intentional, as he was literally, dancing in the rain.  I smiled to myself and thought, "Oh, to be a child again!"  Oh, to dance like that, happily, and in the rain, without a care in the world.

Immediately, I thought of Sophia, as I often do when I see another child and think of how something they're doing reminds me of her.  I was reminded of my witty, spirited girl, her melodic laugh, her burst of personality, her interpretive dancing.  And I thought about how not having cares... well, that simply wasn't true for our Sophia.  She has many.

At 3 years old, I see how she minds our very old cat like a mother, greeting her as soon as we're home, speaking to her like a best friend would, pulling out her dish to feed her despite my efforts of telling her shoes go off first.  I've noticed how meticulous she can be with her chores, when scooping the fish food out and getting herself dressed.  She remembers everything, and will remind us of anything we've said, at any given time.  Her incredible attention to detail astounds even me -- "My Hello Kitty is downstairs on the dresser, sitting on Darth Vader's lap."  And sure enough, it is.  I think of how she will patiently fold a blanket just like her Daddy taught her, or go into the closet to grab the broom and dustpan when she's spilled something, apologizing because it was her "fault."

Anthony and I have discussed how, even at this young age, we can already tell she has worries and potential stressors.  She's concerned when one of us is late coming home, tied up at work or school.  She tells everyone at school about how Bianca, her kitty, is sick and not feeling well.  She asks about her cousins and grandparents constantly, and why they're not around every day.  She listens, and absorbs, and surprises us with the depth of her understanding.  It's impossible to claim that our child doesn't have cares, because sometimes I fear she cares too much.  Sometimes I want her to be able to be a child, without the pensiveness and the threenager drama.

So that is why, when I arrived at her daycare and she spotted my umbrella, I eagerly handed it over, when usually I'd tell her that we couldn't open it until we were outdoors.  And when we walked outside under the awning during a torrential downpour, we stood there for a long time.  I didn't rush her into the car like I normally would, and we just watched parents and teachers and kids running all around us.  When it was finally time to make a break for it, I scooped her into my arms and we laughed all the way to the car as she carefully balanced the umbrella over both of us, alittle soaked and chilled.  When she told me ruefully that her arms had gotten wet, I told her it was okay.  She looked at me, dubiously, probably questioning my sanity.  But it was okay. 

And on our way home, I made sure to hit every puddle, to her delight.

1 in 4

a glimpse into infertility and miscarriage:

another surgery.  one last embryo.  9 days of torture, better known as the 2 week wait.  endless bloodwork.  BFP (big fat positive!).  23 shots.  70 pills.  explaining to my 3-year-old why mommy is crying.  the roller coaster of emotions: fear, anxiety, excitement, joy, uncertainty... overwhelming sadness, and the ultimate heartbreak.

so many are suffering in silence.  so many have hopes and dreams of starting and growing their families, but are falling short.  so many feel completely inadequate, like their bodies are failing them, unable to do what they were designed to do.  so many feel incredibly alone, even with a supportive partner.  so many are taking risks and chances, putting on a brave face or a big smile while inside they are really hurting.  so many choose not to share, because it's hard to talk about, and even harder to explain to anyone who hasn’t faced these struggles or experienced the pain of loss... over and over and over again.

you never know what someone is going through “behind the scenes.”  so be kind. be forgiving. and be thankful.

and know that i am with you.  i am 1 in 4, even with tons of help.  i see you, i understand, and you're not alone.