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.

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...