2025 C.E. (Cancer's Encore): Part 2

I've mentioned before that I tend to base important decisions on how much of a "no-brainer" they are to me.  In other words, it needs to feel 100% right or I tend to hold off on making any moves.  Back in 2017, when my breast surgeon laid out her treatment plan, it was very much a no-brainer.  I was completely on board and ready to get started immediately.  This time around, however, I was anything but.  I felt absolutely no peace about it and, in fact, was opposed to it at a very visceral level.  I couldn't quite explain why I was so viscerally opposed to it, though.  Until I suddenly remembered that I had already seen this scenario play out 40 years earlier.  It feels pithy to use the phrase "childhood trauma" but that's pretty much what it is.

 

In early 1985, my dad was diagnosed with laryngeal cancer.  His doctor told him his best chance of survival was a total laryngectomy, which meant he would never talk or sing again.  He'd been a singer and musician his entire life, so this diagnosis hit him harder than the average patient.  In addition, he was self-employed at the time and had no health insurance.  My mom worked part-time as an LPN while going to school at night for her RN.  She had to drop out of school after my dad's diagnosis and ended up never going back.  Money was very tight and the weight of uncertainty in our house was palpable.  My older brother Toby was in his teens, but my brother Rob and I were 3 and 6, respectively.  My parents tried to explain to us what was happening in a non-scary way that we could understand, and they did their best to shield us from their stress and worry, but we still felt it.  We both knew something bad was going on, and it showed when Rob and I would start fighting with each other whenever we were taken to one of my dad's doctor appointments.  My mom tells me that we once drove past his oncologist's office and I pointed to the building and exclaimed angrily, "I don't like that place!"

 

My dad's laryngectomy happened shortly before Easter weekend that year.  The Sunday before his operation, he sang "Flee as a Bird" to our church congregation as his final vocal performance, accompanying himself on the piano.  I remember being there for that but, at the tender age of 6, I did not understand what the occasion was or why no one clapped for him afterward.  I just remember the whole sanctuary being dead silent.  I know now that the lack of applause was because everyone was in tears, knowing they had just heard him sing his last song.  Days later, Dad went into surgery and woke up a different person.  He beat cancer, but he never stopped grieving the loss of his voice.  His grief and frustration showed through plenty of times while I was growing up.  It shrouded him.  He carried it with him until the day he died.  To this day, I have very few memories of his actual speaking voice and they're very faint, usually mixed in with the "burping" voice he later learned to use while breathing through the stoma in his throat.  

 

Forty years later, I'm finding myself reliving those same events, but from my dad's perspective as both a patient and a parent.  He knew he would be having a surgery that would save his life but at a very steep price, and that it would have a profound effect on him and his whole family.  After being told I would need a mastectomy, I struggled with how and what to tell Avery about what was happening to Mommy.  When I asked Brian, he felt that we shouldn't tell her anything at all.  But as the child of a former cancer patient, I knew there was no way to completely hide it from her.  Kids are very intuitive and they pick up on so much more than we give them credit for, especially our little inquisitor.  By the third appointment she accompanied us to, she was already asking, "Why does Mommy see so many doctors?"  Brian just told her, "To keep her healthy!"  But how was I supposed to explain to her that I couldn't pick her up or hold her for 6-8 weeks straight, or why I had giant stitches and surgical drains in two places?  Even worse, there would be no shielding my grief over the loss of a significant part of my anatomy from her.  It would be a dark cloud hanging over me for the rest of my life.  I would never recover psychologically and Avery, not just I, would likely bear the brunt of that, too.

 

I often wondered if only my dad had been diagnosed even a year or two later if he may have had more treatment options that might have spared him from having that surgery.  Just recently, I asked my mom that same question.  Was radiation even a thing back in 1985?  She says she doesn't remember all the details since it was so long ago and she was too upset to process it at the time (I can relate!).  But she did say he was given the option of a partial laryngectomy with cobalt radiation, or a total laryngectomy.  However, he was told the more conservative treatment would give him a 60-65% chance of survival, whereas a total laryngectomy would bump that up to 85%.  He chose the option with the highest chance of keeping him alive.  I think I probably would've done the opposite if I'd been in his shoes.  I would have exhausted every alternative before submitting to the most extreme option.  Perhaps my dad later regretted his decision.  Maybe part of the grief he felt was the aspect of "what if?"  I wish I'd thought to ask him these questions while he was still here, but I never did.  

 

Remembering all of this, I think my opposition to the mastectomy largely stemmed from the impact my dad's surgery had on him, and on our family.  It affected him professionally as well as personally.  He was discriminated against when it came to things like finding jobs.  He was told his new voice was "offensive" so anything with phone work was out.  Other kids made fun of how he sounded--to me, to my face.  But the worst part was all the times I watched him break down in tears, longing to be able to sing again.  He told me more than once that his dream would have been playing Jean Valjean in "Les Miserables" opposite me as Cosette.  We could have been a real-life father/daughter duo had cancer not interfered.

 

Cancer had already taken too much away from my family.  I just could not accept that same outcome for me and Avery.  I was determined to save as much of my anatomy as possible so she would never have to grow up dealing with the same parental grief I did.  Was I taking a risk by doing this?  Hell yes!  But I could live with risk far more than I could live with regret.  

 

On Monday, June 2, I had a Zoom meeting with the radiation oncologist for the clinical trial in Cleveland.  We talked for about 20 minutes.  She explained what exactly the trial was studying and the criteria for qualifying, etc.  Basically, they were looking for women with a history of invasive breast cancer who'd previously undergone a lumpectomy and whole breast radiation, then later experienced either a local recurrence or a new primary cancer in the ipsilateral breast.  The affected area had to be smaller than 3 cm (mine was right around 2 cm according to my scans), and the lumpectomy cavity needed to be <30% of the total breast volume to minimize the possibility of complications, including toxicitiy and poor cosmetic outcome.  I seemed to fall under all those categories.  She did caution me, however, that most physicians aren't comfortable performing this treatment on women under the age of 50 since the younger you are, the more years you have left for the cancer to come back (something I've heard many times before).  Most physicians, however, are fairly comfortable treating women over 50.  I was 46, which put me right on the cusp.  But the factors in my favor were the size of the area being treated, the fact that it was in a completely different place than last time, it was still in situ, it was located in the front rather than in the back near my chest wall, and it had been more than 5 years since my previous radiation.  What it really came down to was whether I could find someone willing to do a lumpectomy on me, and what my final surgical pathology would be. 

 

She offered to reach out to my surgeon to discuss my candidacy for the study, which I readily agreed to.  I also told her I would be getting a second opinion on Wednesday, then meeting with my oncologist on Friday just to see his thoughts on this.  She then asked how far away I am from VCU.  I quickly checked Google maps and found I was only 1-2 hours away (depending on traffic, of course).  She said she has contacts there who would very likely be willing to do a repeat lumpectomy, including one physician who is co-writing an initiative with her to codify the standards for repeat radiation after second lumpectomy.  She also told me the surgeons at her hospital did them frequently and are "very motivated" to do breast-conserving surgeries whenever possible.  So worst case scenario, I could have surgery either in Richmond or Cleveland, then do the trial in Cleveland.  We left things at: "Let's circle back after you've had surgery!"  Knowing this trial was officially an option was a HUGE weight off my shoulders.  The only hurdle left was finding out whether I was really a candidate for repeat lumpectomy, and finding a surgeon who would agree to do it.

 

On the morning of Wednesday, June 4, Brian and Avery drove with me to my second surgical consultation.  This one was in Leesburg, so a bit further away than right down the street, but not unreasonable at all.  The Inova Loudoun hospital campus was beautiful!  The one in Reston really paled in comparison.  Also, much to Avery's delight, there was a Starbucks kiosk right outside the cancer center's suite!  (No, my 4-year-old does not drink coffee yet, but she loves her cake pops!)  Brian waited with Avery in the waiting room again when I was called back.  The nurse took my vitals, then led me to an exam room where I gave her some of my background and confirmed the information they had on all the medical records I'd already sent over.  She then instructed me to put on a gown and the doctor would be in shortly.  

 

To say this surgical consultation went better than the last one would be a huge understatement.  This doctor, after speaking with me a little more about what we were dealing with, was more than willing to do a second breast-conserving surgery on me.  She felt I was a great candidate for it since it's DCIS rather than invasive disease (assuming that doesn't change between now and my surgery date), in a completely different area than the original, and a relatively small size.  I had to make absolutely sure I was hearing this right, so I asked her if she really was 100% willing to do a repeat lumpectomy.  She answered, "Oh, yes!  I do them all the time!"  I was completely elated to hear this news, but also quite confused.  My previous surgeon had literally called it "malpractice" to do another lumpectomy on me.  I could understand if she just wasn't comfortable with the idea, but to go from "malpractice" to "I do this all the time!" made absolutely no sense.  (This absolutely underscores the importance of seeking a second or third opinion when necessary!)  

 

While we were talking, there was a light knock on the door.  The doctor opened it slightly and saw the nurse standing there with both Brian and Avery in tow.  I was surprised since I thought they were going to stay in the waiting room, but apparently the nurse thought it was important for them to be in the room with me for support.  That was fine.  I was able to introduce Brian to my new surgeon, stating their shared academic and geographic connection.  They chatted about Michigan stuff for a minute, then we brought Brian up to speed on the new plan.  (Avery had been given some crayons and pages to color by some ladies in the waiting room, which she happily busied herself with on the floor.)  The surgeon asked if I had met with a plastic surgeon yet and I told her I had, giving her his name.  She said, "Oh, I know him.  I work with him all the time!  Would you like to have him there for the surgery to assist with any cosmetics if needed?"  I told her it couldn't hurt.  So she said she would have her surgery scheduler coordinate with his, and I should be able to get it done within a few weeks.  Talk about feeling overjoyed!

 

The doctor then stepped out for a minute to grab some information for me and confer with her staff about a few things.  While she was gone, Brian asked me, "So are you excited?"  I told him 'excited' wasn't quite the right word.  How could I be excited about being cut open again?  But knowing I would be able to save my breast from amputation one more time was a huge relief.  

 

The visit was somewhat comical since they kept treating me like a first timer, offering me all sorts of literature on life with breast cancer and survivorship (most of which I already had with me in my tote bag), and explaining everything in simplified terms.  Something new I did learn, though, was that wire-guided lumpectomies are a bit outdated now.  My second lumpectomy would be guided by a tiny magnetic metal seed called a Magseed, which would be inserted a few days prior to my surgery.  This seed would guide them to where the tumor is located, basically like using a metal detector.  Much easier and less cumbersome than the giant guitar strings I'd received during my first surgery.  Amazing how quickly medical technology can advance in just a few years!  

 

At the end of my consultation, the doctor said she would refer me to a radiation oncologist at their facility, and that I should hear something soon regarding a surgery date.  She also said the tumor board was meeting on Monday and she would present my case to them, just for confirmation that I was a candidate for repeat lumpectomy and partial breast reirradiation.  Assuming they agreed with her assessment (which she felt strongly that they would), we were good to go.  For the first time since my mammogram results, I was feeling more at peace.  This was a surgical plan I was on board with!  However, there was the other aspect of treatment I knew would be coming after, which I was already dreading.

 

A funny thing about breast cancer reoccurrences is that the second cancer can often be a completely different type from the first.  My original cancer had been moderate-grade and over 90% positive for both estrogen and progesterone receptors.  This new one was high-grade, only 40% estrogen positive, and progesterone negative.  But regardless of the change in percentage of estrogen receptors, the long-term treatment for estrogen sensitivity is the same.  This new cancer meant I would most likely have to go back on Tamoxifen.  Talk about the blow that comes after the huge kick in the groin.  Although I'd been reveling in no longer having to take that stuff, at age 46 I had now entered perimenopause, so I was officially in the twilight years of my fertility.  As my natural estrogen supply started to dwindle, a lot of the side effects I'd had on Tamoxifen were beginning to come back.  Being permanently barred from ever taking hormone-replacement therapy, I'd actually started taking an herbal supplement back in January called Estroven to ease some of the symptoms, as recommended by my PCP at my annual wellness exam that month.  It was a total game-changer!  I felt 10 years younger on it!  Since it was 100% herbal and hormone-free, I hadn't even bothered to ask my oncologist his thoughts on it.  That oversight came with a startling blow during my appointment with him on Friday, June 6.  

 

On the afternoon of my appointment, my oncologist gave me both the good news and the bad news I'd been expecting.  The good news was he agreed that it would be completely acceptable for me to do a second breast-conserving surgery with partial reirradiation.  He also spoke very highly of my new breast surgeon, even calling her "excellent!"   The bad news, though, was that he confirmed that I would need to go back on estrogen suppression therapy.  He was sympathetic to how miserable I'd been on Tamoxifen, but unwavering in his opinion that I had to take it.  He even floated the idea of inducing menopause and putting me on something even stronger.  The idea of making all those side effects permanent was just incomprehensible.  Clearly any hope I had of enjoying my remaining pre-menopausal years was now gone.  And since I would be on it for at least another 5 years, I would be 51 before I could go off again.  Meaning there was virtually zero chance of Avery ever having a younger, full-blooded sibling.  

 

I hadn't particularly been trying to have another baby and wasn't staking my future happiness on it by any means, but I really enjoyed not having to worry about it one way or another.  After 40+ years of either actively avoiding pregnancy or deliberately trying for one, I was finally at a place where whatever happened happened.  For the first time in my entire life, I was both off Tamoxifen and in a stable, long-term, committed relationship.  It was wonderful not having to worry about pregnancy either way.  But all of that was about to change.  And for the rest of my pre-menopausal life.  

 

As I was lamenting all of this news inside my head, I mentioned the fact that I'd been taking Estroven to alleviate some of my perimenopausal symptoms.  My oncologist was unfamiliar with it, so he did a quick search on his phone, asking if I knew exactly what was in it.  I told him it was just rhapontic rhubarb root, so it didn't contain any hormones.  He said, "Yes, but do you know exactly what's in it?"  Not having the package on me right then, I could not answer.  He turned his attention to his phone momentarily as he researched it, then stated, "Yeah, I would stay away from it."   

 

Dumfounded, I asked why.  He explained that even though it doesn't contain any estrogen, that particular herb still behaves like estrogen by binding to the receptors in the breast tissue, which makes it a potential recurrence risk.  My stomach dropped hearing this.  Not only was my one avenue of relief no longer an option, but I'd been taking something deemed unsafe for several months now!  What if....?  Could it be this is why the cancer came back?  Did I do this to myself??  

 

"Unlikely," my oncologist answered when I asked that question out loud.  Since I'd just started taking it in January, my cancer probably appeared before then.  But I needed to stop taking it ASAP.  Small comfort for me.  That little herbal remedy had worked wonders.  I had more energy than I'd felt in a long time, my mood was more stable, I'd lost weight, and it had even cured the chronic neck pain I'd had for more than a year.  But apparently it can also kill me.  There is literally nothing I can take to lessen the side effects of mother nature and father time.  This was just the most unfair thing ever.  My one consolation was that I had managed to avoid mastectomy, the only irreversible part of this whole mess.  Hormone suppression sucks, but it's still reversible if I absolutely cannot bear it at some point (and I anticipated that point would come sooner than later).  

 

I was still quite upset as I drove home.  The nagging thought that even if I hadn't caused but possibly contributed to my current state was distressing.  Now I just had to pray that things didn't get any worse before my surgery date, whenever that ended up being.  It was another week of waiting until I learned the answer to that.

 

The following Friday the 13th (ominous, again), I was outside doing my lunch hour walk when I got a text message informing me of a post-op appointment on July 18th.  There was nothing in it about the actual surgery, though.  Confused, I checked my patient portal to see if there was any additional information.  There I found that my surgery had been scheduled for Thursday, July 3rd.  That was both good and bad.  Good because I could take the long holiday weekend to recover and likely return to work on Monday, plus Brian's mom would be visiting and on hand to help with Avery in the event my mom wasn't able to come down for it.  But bad because I would be in recovery mode during my favorite holiday, and I'd be unable to attend the "Celebrate America!" concert at the Kennedy Center I had tickets for that same night.  All in all, though, I was just glad to have something on the books.  I felt better knowing my lumpectomy was officially on the docket, as if that kept me one step further away from mastectomy.  

 

On Tuesday, June 17th, I had my consultation with my new radiation oncologist.  Of all the physicians I had met with since forming my new plan, she was the least supportive.  While everyone else kept assuring me I was a great candidate for this, she was more along the lines of, "Well, you're clearly going to do what you want, so I can't force you."  She went over the protocol for partial-breast reirradiation with me.  It sounded a lot easier than whole breast radiation, and it was a lot shorter duration (every day for 3 weeks as opposed to 6).  She also informed me that there's yet another new test they can do that's similar to the OncotypeDx and the Breast Cancer Index.  This one is called DCISionRT and, like the others, it checks for various genetic markers on the cancer cells to determine whether the patient would benefit from radiation or if lumpectomy alone is enough.  If I could avoid radiation entirely, even better!  In all likelihood, since my DCIS was high grade, my test would come back in the high risk category, meaning radiation is still necessary.  However, she said that about 15% of the time, she's pleasantly surprised, so it was worth it to run the test on me just to be sure.  They could even use the tissue samples from my biopsy, so I didn't need to have another procedure.  The only thing was that it takes about 2 weeks to get the results and my surgery was only 16 days away, so we had to cross our fingers that it would come back in time.  

 

My Magseed placement was scheduled for first thing in the morning on Monday, June 30th, 3 days before my surgery.  I had to wake up before the sun was even up to get ready and drive out to Leesburg by 7:30 a.m.  My biopsy site was still very sore and swollen with a sizeable hematoma underneath, so I wasn't crazy about being manhandled there again, but at least that should help them narrow down the correct area.  

 

The first thing they wanted to do was a mammogram to ensure the biopsy clip had been placed correctly.  (That's usually done immediately after the biopsy, but my inability to stop bleeding that day prevented it from happening.)  So I did that first, then waited in the dressing room while the tech ran the images back to be read by the radiologist.  A few minutes later, she called me back into the imaging room, stating that the doctor wanted to double-check something.  Then she pulled out the high-resolution paddles.  I started to get a bad feeling in my stomach.  She took a couple more images, then told me to wait there in the room while the radiologist read them.  I waited several more minutes, pacing nervously.  When she came back in, she directed me into another room so the radiologist could go over his findings with me.  That bad feeling in my stomach was starting to get even worse.

 

I sat in the consultation room in my drab cloth hospital gown, fidgeting anxiously for what felt like an hour.  The radiologist finally walked into the room and quickly introduced himself.  Suddenly, we both paused as a wave of recognition passed over us.  

 

"We've met before!" he said.  It was the radiologist who'd done my very, very first biopsies back on April 24, 2017!  The irony was certainly not lost on me.  The deja vu was overwhelming, not to mention unsettling.  

 

"So what's going on?" I prodded him.  He explained that he had spotted 2 new areas of microcalcifications on my mammogram, both distinct from and in completely different areas from the previously biopsied lesion.  He'd compared the images to my MRI, screening, and diagnostic mammograms, and neither had appeared on any of them.  Whatever these were, they had literally popped up in the span of just 4 weeks.  He recommended biopsying both of them.  Unfortunately, he wasn't able to fit me in for a double biopsy right then since he had a full schedule that day, so I would have to schedule those for a later date.  In light of this, he felt that we should cancel the Magseed placement, just in case the biopsies came back showing that lumpectomy is no longer indicated.  

 

No longer indicated.  Med-speak for "unnecessary."  In other words, he felt there was a high enough chance I would not be able to have breast-conserving surgery that it would be a waste of time to prepare for one, unless the biopsies proved otherwise.  Every physician likes to say "just to be safe" or "to err on the side of caution," but I've since learned that's merely a platitude.  He clearly felt these new suspicious areas were most likely more DCIS and, at that point, I had no reason to disagree.

 

"FML." I told him, resignedly.  So, my Magseed placement was cancelled and my biopsies were scheduled for 12:00 p.m. on Thursday, July 3rd, since they couldn't get me in any sooner.  My lumpectomy was also officially postponed, pending those results.  

 

The universe apparently was not yet done throwing me curveballs.  

 

To be continued in Part 3...

2025 B.C.E. and C.E.: Part 1

They say lightning never strikes the same place twice.  Unfortunately in my case, this is not true.  On Thursday, May 15, 2025, for the second time in 8 years--almost to the same exact day!--I officially became a breast cancer patient again. The good news is it was caught even earlier this time thanks to my annual screening mammogram, while it was still in situ (i.e. not yet invasive).  However, the bad news is it's on the same side as last time, which complicates things since the current treatment standard states that you can't radiate the same breast twice.  So I was told by my breast surgeon that this new diagnosis would mean a much more invasive surgery with a much longer and more difficult recovery.  Apparently, cancer wasn't satisfied with taking just a small piece of the pie, so it decided to come back for the whole damn thing.  I just don't understand why this disease won't f*cking leave me alone!

 

2025 B.C.E. (Before Cancer's Encore)

 

The warning signs had been everywhere.  My 8-year "cancerversary" was approaching, and the universe seemed to be going out of its way to remind me.  I kept having random run-ins with ladies from one of my online support groups.  I'd also been seeing my diagnosis date (4/28) everywhere I looked: on court documents at work, on TV, even at the grocery store.  Just a week or two before my yearly screening mammogram, I grabbed a jug of milk out of the refrigerated aisle at Target and there it was on the expiration date.  I chuckled, amused at the cosmos' sense of humor, but then I looked up realized it was on every milk jug on that entire shelf!  The superstitious side of me found that disconcerting, but the rational side of me brushed it off as a mere coincidence.

 

I'd been doing well and living my life for the past 4 years, the stress of parenthood notwithstanding.  I hadn't seen my breast surgeon since the day she recommended me for the POSITIVE clinical trial back in June of 2019.  I'd been downgraded to seeing her Nurse Practitioner for my annual follow-ups instead.  My most recent visit to their office in May of 2024 was to be my last.  The NP gave me a hug, congratulated me on "graduating" from their care, and sent me on my way, saying "Go and live your life, girl!"  That year was also the year I was downgraded from diagnostic to screening mammograms.  Instead of the images being read right away, I had to wait 5 days for the results to be mailed to me, like all the other cancer "muggles."  By all accounts, that entire era of my life was finally being packed up and stored away, almost as if it had never happened.  

 

I'd stopped taking Tamoxifen around Memorial Day weekend of 2023, six months short of the expected 5 cumulative years, but with the approval of my oncologist.  The side effects had just become too much to bear, especially with a small child whose earliest memories were becoming clouded with me losing my temper over little things.  The final straw had come in February or March of that year while driving my car with Avery strapped into her car seat in the back.  I started screaming obscenities at the top of my lungs because my phone wouldn't connect to Bluetooth audio.  When I stopped and looked back at Avery, she was crying and hiding her face with her sippy cup, whimpering "I'm sorry, Mommy!"  The poor thing just wanted to listen to Mickey Mouse songs!  I knew right then that something had to give.  

 

In December of 2022, I'd requested a Breast Cancer Index text, which is a brand new test similar to the Oncotype test that was done after my lumpectomy.  While the Oncotype checks the tumor's genes in order to determine whether the patient would benefit from chemotherapy, the BCI test assesses whether the patient would benefit from 10 years of hormone therapy, or if 5 years is sufficient.  My test showed no added benefit from 5 additional years, and I was all too happy to take it at its word.  I'd planned to keep taking it all the way up to November to get to the full 60 months, but after that incident with Avery in the car, I just couldn't take the misery any longer.  I met with my onco to discuss going off of it a few months early, given my low BCI test score.  He gave his blessing.  I was finally free from Tamoxifen prison!!  

 

Then came May 5, 2025 ("Cinco de Mammo," as I irreverently called it).  I had my annual screening mammogram at the Women's Imaging Center, the same facility that had done my wire placement the morning of my lumpectomy.  Afterward, I saw the images displayed on computer screen and wistfully noted my rads makers still in their place, plus the biopsy clip from my benign stereotactic biopsy of November 2017.  However, there was something else towards the bottom of the screen that caught my attention.  Something that definitely had not been there the year before.  It was a long, thin white line with a couple of small branches poking out of one end and it was slightly slanted, almost like it was smirking at me.  I almost said something to the mammographer but didn't, thinking maybe it was something harmless, like residual deodorant or scar tissue.  

 

The next day, I received a call from the Imaging Center informing me I had some new microcalcifications in my right breast and they needed to bring me back in for diagnostic imaging.  I immediately knew it was the white line I'd seen on my images, and I was instantly resigned to it being a new malignancy.  I broke down crying as soon as I hung up the phone.  I couldn't even entertain the idea that this was something benign.  Given that I was 1 out of 3 on benign biopsies, I didn't want to set myself up for more disappointment.  I immediately texted Brian to let him know.  He wasted no time in replying: "When's the appointment?  I'll be there."

 

My diagnostic scans took place the next day.  This time, I had to sit in the patient waiting area while the radiologist read them, while Brian sat outside in the main waiting room.  After a few minutes, they called me back in to speak with the radiologist (always a bad sign).  He confirmed that the white line I'd seen on my screening mammo was in fact the new area of concern and declared it "moderately suspicious."  He recommended a stereotactic biopsy.  I used my favorite curse word on him and cried in frustration, "It's DCIS, isn't it?!"  He didn't agree or disagree.  He just said that, given my history, they have to biopsy it just to rule that out.  But in my head, I had already called it.  Given its location, shape, and pattern (all of which are hallmarks of DCIS) and not to mention my personal track record, I would have been shocked as hell if it turned out to be anything different.  

 

On Tuesday, May 13, I had my third (to date) stereotactic biopsy, in the same room and on the same table and almost to the same day as my lumpectomy wire placement on May 18, 2017.  The deja vu was overwhelming.  I found myself reliving every moment in sequence, right down to the "branding" of their initials on my chest with a black marker.  

Stereotactic biopsies are one of the least pleasant outpatient procedures you can go through, and this one proved no different.  My previous ones had taken about two hours to complete.  This one took three, mostly due to my inability to stop bleeding afterward.  It looked like a crime scene underneath that table!  They spent an hour trying to stabilize the blood seeping from the incision before finally sending me on my way, packed with gauze, bandages, and ice packs stuffed under a sports bra (which I just so happened to have with me since it was a gym day).  Usually they do a mammogram immediately after the procedure to verify the placement of the biopsy clip, but after an hour of trying to control the bleeding, they decided to forgo that part.  They said I should know the results within 5 business days.  As always, waiting is the worst part.  But for better or worse, I didn't have to wait very long.

 

Two days later, on May 15, 2015 at 7:16 a.m., my phone rang with my PCP's office number on the ID.  I thought that was odd since their office didn't even open until 8:00.  I grabbed my phone and answered the call, but there was nobody on the line.  "Hello?" I said several times before the call went dead.  I waited to see if they would call back, but no one did.  I was extremely weirded out by this.  I couldn't help but feel that it was an ominous sign.

 

Once I arrived at my desk at work, I logged on to my patient portal to see if there were any new test results or something added to my file that could have prompted the phantom phone call.  Indeed, there was a new note on my chart (likely not intended for my eyes just yet).  It stated that the radiologist had called and informed them that my biopsy results showed high-grade Ductal Carcinoma In Situ.  

 

Out of all the emotions I had felt the first time I'd been given this diagnosis, only one stood out this time around: Anger.  I was pissed!  How dare cancer try this again!!  I cursed and slammed my hands down on my desk, then stormed out of my office and into the stairwell to inform Brian, then my mom.  I also called my PCP's office and told them about the phantom phone call I'd received, asking if they had meant to call me about these results or if it had been a glitch. The person I spoke with played dumb, as usual, and urged me to schedule an appointment with my PCP to follow up on my imaging results.  

 

"What for?" I demanded, angrily. "I've already seen them!  Just tell me when my appointment with my surgeon is."  She didn't offer any further information other than offering to schedule an appointment with my PCP.  But I really had no desire to take even more time off work and give their office another co-pay just for them to tell me what I already knew.  I was done playing those games.

 

Eventually, I went back to my desk and pulled up my breast surgeon's office website.  I was staring at it, contemplating whether I should just call them myself, when my phone rang with their number on the ID.  It was my breast surgeon on the other end.  

 

"I was just about to call you!" I told her, incredulously.  "I'm guessing you saw my new biopsy results."  She confirmed the same, and we scheduled my surgical consultation for the following Thursday, May 22.  However, the news got even worse from there.  She informed me that since this was a brand new malignancy on the same side (although in a completely different area) as the original, and I'd already had whole breast radiation on that side, they couldn't do radiation again this time.  So this would change their disease management plan.  

 

"Change it to what?" I asked, already feeling a pit of doom forming in my stomach. 

 

"April..." she began.  (Please don't say it.  Don't say it!, I thought to myself.)  "April, you're going to need a mastectomy."  

 

"Fuck..." I exhaled, letting out all my breath.  I was suddenly plunged into a living nightmare.  Mastectomy is a completely different animal from lumpectomy.  It means needing reconstruction, which means needing a plastic surgeon.  It means a recovery time of months, not days.  It means surgical drains hanging out of your skin and being unable to lift, reach, or squeeze anything for weeks.  How was I supposed to take care of a very active 4-year-old when I can't even lift my arm above my head?  How was I supposed to clean the house or cook dinner for my family?  Most likely, Brian and I would have to postpone our vacation plans this summer, too.  Seriously, I don't have time for this!  I DON'T HAVE TIME FOR CANCER!!  For the love of God, why can't it just leave me alone??

 

My voice quivered as I asked her whether she could at least make it so that everything still looked the same on the outside, but my brain could not fully process the idea just yet.  She reassured me that she could try and we would discuss our options at my appointment.  Already though, I felt like I was scheduling my own execution.  Eight years ago had been a slap on the wrist.  This time, I was being led straight to the guillotine. 

 

I also had to ask her the all-important question: "Why?  Why did it come back?"

 

"Sometimes it happens." she responded.  "It doesn't happen often, but--"

 

"But it happened to me." I lamented. 

 

The full impact of my surgeon's revelation didn't hit until later that night, after Avery had gone to bed and I'd had my requisite glasses of wine.  The day of my original diagnosis had concluded at Heather's house, eating Chinese take-out on her back deck with her and Sneha.  So I figured, why break tradition?  (Heather had since moved back to Minnesota a few years ago, but I'd been texting her with updates all week, and she was very much there in spirit.)  Annie and I already had our standing Thursday night dinner date that evening, which Sneha agreed to join us for once I informed her of my new diagnosis.  I canceled my plans to cook and told Brian to just order Chopsticks instead.  We all sat outside around our glass-topped table on the back deck, sipping wine and enjoying the lake view.  Just like last time, but in a slightly different location and with slightly different people.  It's amazing how, as much as things change, they stay the same.  It's also amazing how, despite how much my life had changed in the last 8 years, some aspects of it (like fighting cancer) I apparently just can't escape.

 

After Annie and Sneha left and Brian and I put Avery down for the night, he and I headed back downstairs and sat on the living room couch to decompress.  There, with all the daytime noise and chaos at a lull, I finally felt the weight of that day's events creeping up from my stomach and into my throat, where it began to slowly strangle me.  Brian tried to start a conversation but I snapped back angrily at him.  That upset him, of course, which only compounded my mounting grief.  I was already grieving the part of my body I was slated to lose.  The tears started welling up in my eyes until I couldn't hold them in anymore, then all the fear and dread broke through with them.  

 

"This is going to change everything!" I sobbed to Brian.  He tried calmly reassuring me that we would deal with it, plus whatever other hurdles life decides to throw at us.  I yelled back, "Easy for you to say!  No one's trying to chop your [testicle] off!  This is too much!  I can't do this!  I can't have a mastectomy!  I can't do this!  I CAN'T DO THIS!!"  

 

Then I did something I hadn't done since the night Kirby passed away three years earlier: I laid my head down in Brian's lap and ugly cried myself into unconsciousness.

 

2025 C.E. (Cancer's Encore)

 

The week between my biopsy results and my surgical consultation was both the longest and shortest week ever.  My surgeon's revelation on the phone with me was impossible to shake off.  I was dreading seeing her in that office and having to hear it out loud, as if that would somehow make it real.  Every day at work, I sat in my office feeling like the walls were closing in on me.  Also, I was clenching my jaw so hard, my whole face hurt!  I just could not accept that this would be part of my fate.  It was like there had been a glitch in the matrix of my life plan.  This was not supposed to happen!  I was not meant to have a mastectomy!  There had to be a mistake somewhere.  

 

I was seriously considering simply not consenting to the procedure at all.  I just couldn't stomach the thought of going through with it.  One morning, while at work, I asked Brian via text what he would say if I refused a mastectomy, opting only for a second breast-conserving surgery instead.  He responded, "I would ask you if you feel like this is the best choice for you and your family.  If yes, then I would hug you and support you with that choice."  He also texted me a link to an article about repeat partial-breast radiation being done on women who'd had a small local recurrence.  Then he apologized, saying, "I'm probably not being very helpful."  But the wheels were already turning in my head. Was there hope of escaping this procedure after all?  I did some Googling of my own and found several abstracts on clinical trials that had studied repeat breast conserving surgery and partial-breast reirradiation as an alternative to mastectomy.  Although controversial and not considered standard practice, it appeared that it is indeed possible and that the outcomes were very similar to the control groups in cosmesis, adverse events, and disease-free survival rates.  Although there are risks of complications from repeat radiation, my risk of recurrence would be no worse than it had been the first time around.  So why didn't my surgeon even offer this as an option?

 

The day of my surgical consultation, I could not stop shaking.  The giant boot standing on my chest got heavier and heavier the closer it got to my appointment time.  I wasn't sure how well it would go, but I would definitely plead my case to my surgeon.  I even saved the abstracts I'd found on my phone's browser app so they would be readily available if needed.  It was a busy day since I'd also scheduled my bilateral breast MRI at noon (standard procedure after a new diagnosis to rule out any additional abnormalities missed by mammogram).  Brian was teleworking that day so he and Avery were able to meet me at the hospital for that appointment, but he had a meeting during my surgical consultation that he absolutely couldn't miss.  Unfortunately, that was the appointment I really needed him there for.  

 

I was close to hyperventilating the whole half-mile walk from work to my surgeon's office.  Upon checking in, the front desk handed me their standard depression screening questionnaire.  I declined, stating it definitely would not go very well at that moment.  The whole time I was waiting in the exam room, I'd never been more conscious of the sound of the ticking of a clock.  It was like each second represented one less second I had to live my life.  When my surgeon finally walked into the room, I gasped and turned my head away, unable to even look her in the eye.  Every fiber of my soul wanted to jump through the 4th story window and run.  I could not even explain the intensity of my fight-or-flight response in that moment.  

 

My surgeon seemed surprised by my reaction to her presence that day.  I told her in a tearful whisper, "I don't want to be here!"  Clearly I was no longer the same person I was when I first walked into her office 8 years ago.  Back then, I was raring to get the process going.  Everything was doable and nothing was insurmountable.  This time, it was anything but.  My very soul was diametrically opposed to what she planned to do to me.  I did not see how I could ever go through with it, and I trembled just thinking about it.  

 

My surgeon remained calm while performing her exam, marveling at how well I'd healed from radiation.  But when she asked if she could examine my abdomen, I recoiled in horror because I knew what she was thinking: DIEP (Deep Inferior Epigastric Perforator) flap reconstruction.  I'd heard plenty about them from my breast cancer support groups.  Basically, the surgeon cuts a flap of skin and tissue from the lower belly and transfers it to the chest to rebuild the removed breast tissue.  It's a major operation that also requires microsurgery in order to connect the blood vessels in the flap to the blood vessels in the chest.  I'd heard so many stories in my support groups about how painful the recovery process is.  It's inpatient, not outpatient, and it's two surgery sites instead of one.  This meant I wouldn't just have a drain hanging from my chest but from my abdomen as well.  It would be like recovering from another C-section, if not worse.  Call me crazy, but the older I've gotten, the less appealing the idea of being cut open has become.  Not just that, but I'd heard more than one DIEP flap horror story where the patient was extremely unhappy with the result and/or had to wear a prosthesis anyway.  Absolutely no part of me could conceive of putting myself through all of that, especially for a cancer that wasn't even invasive yet!

 

My surgeon explained that she preferred to go the DIEP flap route because I was not a good candidate for implants. Since they have a tendency to adhere to radiated tissue, DIEP flap would be my best option for complication-free reconstruction.  I took that opportunity to ask her about the secret third option she hadn't yet mentioned: a second breast-conserving surgery with partial breast radiation, as described in the abstract I then pulled up on my phone.  She scrolled through it for a minute, but ultimately was unconvinced.  She argued that since this is not considered the standard of care, it would be "malpractice" if she were to even offer that as an option.  She informed me: "If you want to go this route, you'd have to do it through a clinical trial."  

 

Was that a dare?  Perhaps she'd forgotten that the last time she referred me to a clinical trial, I took her up on it.  Either way, I was too distraught to even think.  She proceeded to give me the rundown on needing a plastic surgeon for the reconstructive surgery, and would refer me to one, etc. and I continued to just shake my head and sob.  No way was this really happening.  I wanted no part in any of it!  She clearly sensed my distress because she then asked if I'd like a second opinion and offered to give me the names of some other breast surgeons.  I couldn't formulate a reply other than to say I would think about it.  I wasn't sure it would even be worth my while if my request would be considered "malpractice" anyway.  I just wanted to get the hell out of that office and as far away from there as possible, as if that would somehow stop it all from happening.  

 

I was too devastated to return to work after that appointment.  It was a little after 4:00 p.m. by then, so I opted to head straight to the gym to hopefully get some endorphins flowing.  While I was changing into my gym clothes in the locker room, I took out my phone and hopped onto the National Clinical Trials website, just to see if there were any trials currently recruiting for partial breast re-irradiation.  I actually found three with locations in the United States, two of which were in the recruiting phase: one in New York City, and one in Cleveland.  Not as close as DC, but not impossible.  The third was in Florida and not yet recruiting, but was slated to start soon.  I sent email inquiries to all 3 immediately.  Within minutes, I received a reply from the one in Cleveland, asking me to send them my medical records.  I still had everything cancer-related stored in a large tote bag deep in my closet.  My homework assignment for the night was clear.

 

That night, I went into my closet and pulled out my Big Bag of All Things Cancer and set it next to my purse so I wouldn't forget to take it to work with me the next day.  Once I arrived in my office the following morning, I spent a few minutes digging through it to find all relevant reports, test results, etc., then scanned them into a folder on my computer.  I emailed everything to the Cleveland people right away.  The assistant to the Radiation Oncologist heading up the study replied within an hour, asking me to call her on her direct line.  I called her as soon as I had some time to step out into the hallway.  

 

We spoke for several minutes about the trial and my desire to avoid having a "salvage mastectomy" and DIEP flap reconstruction.  She said she would have the doctor review everything I had sent and, if she feels I may be a good candidate, she'll schedule a virtual meeting with me.  This was encouraging enough for me to send a message to my breast surgeon's office, asking for some referrals for a second opinion.  I noted in my message that I was particularly interested in someone who would be willing to do a second breast-conserving surgery as I was already in contact with a clinical trial about repeat radiation, and would like to go that route if at all possible.  

 

My surgeon's office staff emailed me back 3 names of other breast surgeons in the area, and I immediately went to work researching them all (office location, hospital affiliations, education, background, etc.).  One in particular stood out to me.  She was fairly youthful compared to the other two, so I was initially skeptical whether she had enough experience in something like this.  But she was from the Detroit area--in fact, the same suburb where most of Brian's family now lives--and had gone to med school at Wayne State, where Brian got his master's.  For whatever reason, I just felt a really good vibe about her.  I called her office and explained that I was looking to schedule a second opinion surgical consultation, ideally for a repeat lumpectomy.  They were able to schedule me an appointment for the morning of Wednesday, June 4th.  Brian was "flexing" (i.e. off work) that day, so he and Avery would be able to go with me.  It was perfect timing!

 

Two other things also happened that day: the office of the plastic surgeon I had been referred to called and scheduled my consultation with them for the following Thursday, May 29th.  I unenthusiastically agreed to it just in the interest of trying to keep an open mind, but I had no desire to meet that surgeon or discuss anything about that procedure.  I also called my medical oncologist and scheduled an appointment with him for Friday, June 6th, just to get his input and guidance.  Once again, I was experiencing the whirlwind of juggling multiple appointments with multiple physicians, my phone blowing up with (often overlapping) calls from multiple offices, and going into autopilot just to keep my life straight.  It was 2017 all over again, but with the added demands that come with having a family.  How is it even possible for one person to be so busy without their brain getting fried? 

 

The following week, on the morning of my plastic surgery consult, I received an email from the clinical trial in Cleveland asking if I could meet virtually with the doctor on Monday, June 2nd.  I replied with a very emphatic YES!!  I was borderline giddy!  It was actually starting to feel a bit like online dating: So far, I'd "swiped right" on 3 different trials, and received replies back from 2, but was definitely more interested in one and hoped they liked me, too, but I was still keeping the door open with the other one just in case.  Now I was about to have my first "date" with the one I was most interested in.  

 

For the past week or so, I'd been mulling over all the different choices I would have to make in the near future.  Choosing between surgeons, surgeries, reconstruction methods, whether to join a clinical trial, which clinical trial to join, or whether to have everything done closer to home.  I'd also received some pushback from a few people about my desire for a second lumpectomy instead of a mastectomy.  Apparently, some felt that it would be a mistake not to go for the most extreme procedure with the most assured outcome.  I'd had a few moments of self-doubt, wondering if I would be letting my family down by not towing the line and going with the current standard of care.  But I knew in my heart I just couldn't go through with that without exhausting every other possible option first.  Some women are OK with lopping everything off and never having to worry about it ever again, but I'm not one of them.  I could not stomach (so to speak) the thought of cutting off my entire breast and rebuilding it out of abdominal tissue.  Call it Stockholm Syndrome if you want, given that the damn thing had tried to kill me twice now, but it literally nauseated me.  And I felt like it would render everything I went through the first time around all for nothing.  I could not beat invasive cancer only to lose my entire breast to freaking DCIS!  And what if I did go through with a mastectomy, only for repeat lumpectomy to become the new standard of care 6 months later?  I'd never forgive myself!  At least with a lumpectomy, I could always take more out later.  But I could never put anything back in.  Mastectomy was just too drastic and too permanent.

 

With all the different choices I was facing, my prayer request that week became for all the doors to open to the surgery and treatment path I was supposed to take, and that I would know it because I would feel 100% at peace with the plan.   

 

Later that afternoon, I found myself in the waiting room of the plastic surgery center with Brian and Avery, feeling again like the walls were closing in on me.  The tension in every muscle of my body made it nearly impossible to fend off a panic attack.  Avery, as usual, was enjoying being in Mom and Dad's company and leafing through the waiting room literature with me.  Her carefree, happy-go-lucky personality was the only thing that kept me from jumping off a cliff.  She was the perfect distraction from the reality of what I was dealing with.  For better or worse, her constant demands for my attention left me with little time to dwell.

 

Brian and Avery stayed in the waiting room when I was called back.  I made a point to let the medical assistant know that I had zero interest in being there, or in the surgery they were proposing.  I also let both her and the doctor know I was willing to hear them out, but my goal was to seek a second breast-conserving surgery at any cost, if at all possible.  He seemed sympathetic, but also matter-of-fact.  He tried explaining some of the cosmetic risks that come with doing repeat breast radiation, but I argued that even a misshapen breast would be preferable to a fake one.  I said I honestly could not understand why so many women opt to do that to themselves voluntarily.  He offered to show me before-and-after pictures of DIEP flaps he had done, but I declined.  I'd already seen plenty of pictures via my own research, and they only made me feel even more anxious and nauseated.  

 

Of course, they were eager to get a surgery date on the books as soon as possible and sent in their surgery scheduler to talk to me at the end of the consultation.  I felt like I was at a used car dealership with a salesman pressuring me to close the deal.  But I held firm, letting them know I was going for a second opinion next week, as well as meeting virtually with a radiation oncologist in Cleveland on Monday.  So the surgeon said we would wait to schedule until I decided on a treatment plan, then reconnect with me.  I'd succeeded in kicking the can down the road, at least for now...

 

To be continued in part 2 (currently in progress)... 

2020 A.D., Part 4: The Fourth Trimester

Contrary to popular belief, pregnancy doesn't end immediately after giving birth.  Your body has gone through a lot of changes over the past 9 months and needs some time to recover.  Your fluctuating hormones are wreaking havoc on your emotions, you're sleep deprived, most likely in a lot of physical pain, and exhausted from trying to meet the demands of this brand new human who is completely dependent on you to stay alive.  For this reason, the first 3 months postpartum are often referred to as the "fourth trimester."  For me, the fourth trimester was a very dark period in my life that no one truly warned me about.  I'd read about it a lot but that still didn't adequately prepare me for what was on the other side of the hospital doors.  Added to that was the fact that I didn't even have a baby to take home with me.

 

Once the high of pregnancy and adrenaline rush from the birth was over, I crashed hard.  This was undoubtedly fueled by the facts that I was recovering from an emergency C-section after being diagnosed with pre-eclampsia, my baby had been born prematurely at 36 weeks, and she had just been admitted to the Neonatal Intensive Care Unit due to not feeding on her own.  They estimated that she would spend about a week in the NICU and Brian and I could do nothing to help her except wait.  Meanwhile, I was being deprived of the full first-time mom experience and vital skin-to-skin contact needed to help nurture my bond with my new daughter.  

Some people say they instantly felt connected to their child the second they first saw or held them.  That wasn't the case for me.  I felt a deep sense of responsibility and obligation to keep her safe and healthy, but we were basically strangers who happened to share a body for 8 months.  I guess I was expecting that maternal gene I'd seemed to have been missing my entire life to suddenly flip on like a light switch.  When it didn't, I started questioning everything about myself and concluded I must be a horrible, cold-hearted person who's incapable of love and unworthy of being loved in return.  I felt like I'd made a mistake and that I wasn't meant to be a mother after all.  I decided that she would be better off without me because I was just going to mess her up by making her feel unloved and rejected.  I told my mom all this and she assured me that my feelings were completely normal and that they would go away eventually.  But I didn't see how or when that light at the end of the tunnel would ever appear. 

Recovering from a C-section was 10 times as painful as recovering from a lumpectomy.  You don't realize how often you use your abdominal muscles until they've been sliced open and everything you used to do without effort on a daily basis suddenly hurts like hell: standing up, sitting down, walking, getting in and out of bed, getting in and out of the car, coughing, laughing, clearing your throat, etc.  They said the best thing I could do to speed up my healing was to get up and walk around, so I made a point to try even though it was the last thing I wanted to do.  I tried just walking around my hospital room at first.  A couple of times, Brian held my arm as we walked slowly down the hall to the NICU to visit Avery.  The first time I saw her in there was a depressing sight.  She was just lying in a clear plastic bassinet under hot lights, wearing nothing but a tiny, preemie-sized diaper, an IV needle taped down to her arm in a splint, and probes stuck to her chest and tummy to monitor her heart rate, breathing, and oxygen saturation.  There was also a tube sticking out of her nose, taped down to her delicate little cheek that was already red with irritation.  I soon learned that the NICU operates on a very regimented schedule: Every three hours, a nurse would change her diaper then try to get her to feed.  If she didn't finish the minimum amount of formula within 30 minutes, it got gavaged into her stomach through her NG (nasogastric) tube.  Avery's feedings were at 9:00, 12:00, 3:00, and 6:00 am and pm, around the clock.  Brian and I were allowed to stop in and see her as much as we wanted and stay for as long as we wanted, but only us.  No one else was permitted to visit due to the pandemic.  I was able to video chat with my mom from the NICU on Sunday afternoon and I held the phone up to the bassinet so she could see her, but it wasn't the same at all.  

My doctor gave us the option of leaving the hospital on Sunday night or waiting until Monday.  We opted to stay until Monday, both to give me an extra day to recover in the peace and quiet of a private room, and also because Brian wanted us to spend as much time as possible with Avery right down the hall since it wasn't going to be as easy to come back and see her once we left.  On one hand, I was anxious to get home so I could see Mom and Kirby.  But on the other hand, I did like the convenience of being able to go right down the hall to the NICU, and I wasn't looking forward to having to walk up a full flight of stairs to go to bed.  I was also enjoying the hospital food being brought directly to my room.  (Despite hospital food's less than stellar reputation, the menu there was actually quite good!)  Leaving the hospital without a baby in my arms was also very depressing.  I saw other mothers holding their babies while being wheeled down to the lobby and it felt like the most unattainable goal ever.  Avery had done so well all throughout pregnancy and now suddenly she had hit a major roadblock with no definite end in sight.  It makes you wonder how anyone ever manages to carry to term and leave the hospital with a healthy baby.  

Since my brother Rob had to drive back to Ohio before I came home from the hospital, my mom stayed behind to hopefully meet her grandchild before having to go back home for Thanksgiving.  We were anticipating Rob driving back down the following week to meet the baby and spend a few days before driving both himself and Mom back.  But as the days passed and Avery continued to fall short of her feeding goals, it was looking bleak that Mom would be able to hold her grandchild before leaving.  So my aunt KoAnn took the liberty of booking Mom a one-way flight back to Ohio on Monday, November 23 to save Rob the trouble of driving all the way back down.  I crossed my fingers and prayed every day that Avery would come home before then.  But every day just seemed like more and more setbacks.  

 

Brian and I visited Avery 3 times a day every day.  Even though we lived 10 minutes from the hospital, the constant driving back and forth was exhausting.  And it was a huge pain (emotionally and physically) because there was only one entrance open on evenings and weekends, and it was the emergency room entrance clear on the opposite side of the hospital.  The walk from the ER to the main pavilion was long and tedious (even more so when you're recovering from major surgery), and involved a temperature check immediately after entering, walking down several long halls to the west wing, riding the elevator up to the mother/baby ward, getting buzzed in by a nurse after flashing our hospital bands (that were never allowed to leave our wrists), then walking down another long hall to the NICU, ringing the doorbell, and getting buzzed in there after flashing our bands again, then scrubbing our hands at the sink before finally being allowed to find our baby's bassinet, which changed locations practically every other day.  There were also 2 different NICU rooms and she would get bounced back and forth between them constantly, so we were never sure which door we needed to knock on.  They also changed her feeding schedule frequently without telling us.  We would wake up in the morning and head straight over for her 9:00 am feeding, which sometimes got switched to 8:30 or 8:00 so we would find out after arriving that we'd completely missed it.  Or we would arrive at 8:00 only to learn we were an hour early.  The rest of our daily routine consisted of going back for her mid-afternoon feeding at either 2:00, 2:30, or 3:00 (whichever schedule she happened to be on that day), then again in the evening at 8:00, 8:30, or 9:00 pm.  Brian continued to work remotely throughout the day while I slowly healed from surgery.  The only upside was that, unlike most new parents, we could sleep through the night.  But that was small comfort since I felt like I was being cheated out of the new mom experience and the maternal bonding that went with it.  I had just been cheated out of experiencing true labor and a natural delivery, and now I was being cheated out of everything that happened after.  Every day I prayed would be the day she could finally come home so we could establish some sort of routine and normalcy.  But every day felt like it was 1 step forward, 2 steps back.  

Two days after I came home from the hospital (Wednesday, November 18), we arrived for her morning feeding and the nurse informed us that she'd had what they called a "spell" during the night.  I hadn't ever heard that term before so I had no idea what a curse it would end up being.  A "spell" is another term for an apnea and/or bradycardia event, when a baby momentarily stops breathing and his/her heart rate plummets in response to the low blood oxygen levels, also referred to as desaturations or "desats" or "brady" events.  The nurse said it had lasted for about 20 seconds until they adjusted her position and her heart rate came back up.  Although no one informed us at the time, I later learned that any baby who's had a spell has to go 5 full days without one before being eligible for discharge.  So every time she had one, the clock would start back at zero.  However, all that was irrelevant until she was able to feed enough on her own to meet the neonatologists' satisfaction.  But every time she finally came close to finishing her minimum, the amount would subsequently get raised.  It's like they were intentionally setting her up for failure by constantly moving the goal posts on her.  It was the most infuriating, frustrating thing imaginable.  Some days, I would be holding her during her feeding and she would get down to the last 5 or 10 milliliters then tire out.  In desperation, I would try shaking the bottle, turning it around in her mouth while tapping her cheek to wake her up, or even squeezing the nipple between my fingers just to get that last little teeny bit in there.  But her tiny little body just couldn't keep pace with their rigorous demands.  I never could've imagined that getting out of the NICU would entail an even tougher screening process than getting into college!  

 

The doctors and nurses all told us this was extremely common in premature babies and that the suck-swallow-breathe reflex would likely just activate suddenly, like a light bulb going off in her head as if to say, "Oh!  This is what I'm supposed to do!"  But they could give no approximate time frame for when that would happen.  Their original estimation was that it would take about a week.  But that week came and went with no real progress.  As I'd feared, my mom boarded her flight home on Monday without getting to see her long-awaited grandchild in person.  She actually cried when her plane took off, and cried again when it landed.  She said it was a combination of disappointment from not getting to meet Avery and having to travel alone without Dad for the first time in her life.  I wished at the very least she would've been allowed to visit Avery in the hospital just to take one thing off her plate of sadness.  

After Mom left, my next goal was for Avery to be home by Thanksgiving.  Her blood sugars had stabilized by then so they'd discontinued her IV drip and even stopped checking her sugars altogether soon after.  Over the course of that week, she would give me and Brian a glimmer of hope by finishing an entire feeding by herself, but then she would regress and only drink half of the next two or three.  One morning, she didn't drink anything at all.  We arrived for her 9:00 a.m. feeding but she showed absolutely no interest in her bottle so the nurse just said, "Nope, she's not interested," and dumped the entire thing into her NG tube.  It felt like the NICU's standards were impossible for her to ever meet.  On the day before Thanksgiving (Wednesday, November 25), she'd been showing enough progress that they decided to remove her NG tube as sort of a trial run to see how well she did without it.  However, it had to get put back in the very next day.  She spent her first Thanksgiving in the hospital.  

 

The next day (Black Friday), we had a very scary incident.  She'd had a very good day and even finished several bottles in a row.  Brian and I went to visit her at 9:00 pm and I was holding her and feeding her when all of a sudden she had a spell while lying in my arms.  The monitors started bleeping like crazy and she went completely limp and turned deep purple.  I froze like a deer in the headlights and my entire body went numb.  I was so panicked, I didn't know what to do other than scream for help.  The nurse ran over and grabbed her out of my arms and laid her down on a table, then used a bulb to suction some formula out of her throat and stabilize her.  We tried to finish the feeding but she desatted again.  So we aborted the mission and gavaged the rest of her bottle in defeat.  The nurse tried to reassure me by saying she was probably just tired and needed a rest after having such a good day.  Meanwhile, I fought back tears as I realized just how powerless I was over all of this.  It had seemed like that little switch in her head was on the cusp of flipping, but now she was clearly telling us she wasn't ready.  It was incredibly heartbreaking, not to mention traumatizing.  Earlier that afternoon, I'd felt like screaming and throwing things since I was so frustrated that they wouldn't let her come home. Now I was scared to death for her to leave and have this happen without any monitors to warn us or nurses nearby to fix it.  I wondered if I would ever feel safe feeding her on my own, or if I would always be watching and waiting for her to desat and turn blue in my arms again.

 

As the days went by, we watched helplessly as the other NICU babies got discharged one by one and sent home with their parents, then new ones would come in and eventually leave, all while Avery stayed behind.  It didn't make any sense to me why a perfectly healthy baby who just happened to have been born a little early was still there more than two weeks later while babies born even smaller and more premature than her would stay for 2 or 3 days then go home.  I felt like we were running in a race where we would never reach the finish line.  I began to feel very resentful of all the parents I saw leaving the hospital with their babies in tow, and eventually any parents I saw with babies anywhere outside of the hospital.  It was like they were all flaunting in my face something I couldn't have.

 

The following Monday, November 30, offered a ray of hope, though. The neonatologist doing rounds that morning said that Avery seemed very close to being discharged.  If she continued to do well and finish at least 80% of her feedings without having any spells, she could possibly go home that Friday.  As if hearing this and understanding it, Avery actually finished her whole bottle that afternoon and even started trying to pull her NG tube out of her nose, forcing the staff to use extra tape to hold it in place.  The next day, she succeeded in pulling it out completely, so they decided to leave it out and see how she did.  She managed to finish all of her feedings for the rest of that day and stayed spell-free, too.  (One day down, 4 to go!)  From that day on, her NG tube was a thing of the past.  That same doctor stopped in again while we were there for her evening feeding and stated that she was fairly confident we would be able to take her home on Friday.  She even reminded us to bring in her car seat on Wednesday for the "car seat challenge."  I'd never heard of such a thing before but it sounded like some weird Instagram hashtag game.  Apparently, NICU babies have to sit in their car seats for a full hour without desatting in order to be approved for discharge.  On Wednesday morning, Avery did her car seat challenge and passed it perfectly!  She also continued meeting her 80% minimum threshold of feeding on her own.  The nurse even handed us papers with discharge instructions on Wednesday afternoon, and the insurance company called and scheduled her first appointment with her new pediatrician for Saturday morning.  (3 days down, 2 to go!)  On Thursday, she actually finished her entire bottle at her morning feeding plus a little extra.  Her appetite was starting to grow, as evidenced by her steadily increasing weight.  On Thursday, she weighed in at 6 full pounds and remained spell-free through that evening.  (4 days down, 1 to go!)

Then came Friday, December 4: The Day of Reckoning.  Brian and I arrived at the hospital for her morning feeding at 8:00 and the nurse who had cared for her during the night told us that she had finished all of her bottles during her nighttime feedings.  Feeling encouraged, I went ahead and changed her diaper then sat down in a chair by her bassinet to give her her bottle and patiently wait out the last few hours until she could be discharged.  While I was feeding her, she suddenly started desatting slightly.  The nurse ran over and quickly brought her out of it, then let me try feeding her again.  But the same thing happened.  At that point, the nurse took the bottle away and said she wasn't comfortable continuing with the feeding.  She wasn't sure if this incident was severe enough to start the 5-day countdown completely over, so she went to go talk to the attending physician.  In the end, they decided to give her a break since she'd had such a good night, but said the rest of her feedings that day needed to go just perfectly.  With her discharge now in jeopardy, I was beyond frustrated by the possibility of our hopes being dashed at the 11th hour.  I crossed my fingers, held my breath, and prayed hard for the rest of that day's feedings to go well.  

 

When Brian and I arrived back at the hospital at 2:00 pm, we were pleased to learn that her 11:00 am feeding had in fact gone perfectly.  She'd even consumed a little extra, like she was making up for her morning snafu.  Her 2:00 pm feeding with us there also went perfectly, so we were back on track for discharge later that afternoon.  We went home around 3:00 and waited anxiously for the next couple of hours to pass so we could go back and bring her home with us.

At 5:25 pm, Brian and I were getting everything together to head back to the hospital and bring her home when my phone rang.  I recognized the number as the hospital so I immediately got a sinking feeling in my stomach.  They informed us that Avery had just had another spell during her 5:00 pm feeding and, unlike the ones that morning, it was major enough to keep her from getting discharged.  Her homecoming was officially canceled.  We were literally minutes away from picking her up and finally bringing her home, now it would be at least 5 more days!  I was crushed, angry, frustrated, depressed, defeated, and pretty much every other emotion you could possibly apply to the situation.  I couldn't decide if I wanted to cry, scream, or just start breaking things.  I didn't understand why this was happening.  I figured there had to be a reason for it that they just weren't telling us and were refusing to do anything about.  It was like they were deliberately trying to keep her there for the rest of her life!  I was beyond tired of the constant running back-and-forth to the hospital and was so ready to just bring her home and experience all the normal first-time parent things.  But no matter how ready for that I was, Avery simply wasn't.

So the countdown began all over again.  Our new tentative discharge date was Wednesday, December 9 (her original due date), as long as she could stay spell-free until then.  On Sunday, December 6, the nurse taking care of her that morning commented to us that her sucking reflex felt much more mature than the last time she'd seen her.  She said she could even feel an improvement in the past 24 hours alone.  Avery continued to finish her feedings without any help needed and managed to stay spell-free all day on Sunday and Monday.  However, Tuesday afternoon brought more bad news when she desatted during her afternoon feeding.  Once again, the 5-day countdown had to start anew.  Our tentative discharge date was now Saturday, December 12.  I was starting to lose hope that we'd be able to take her home before her first birthday.  I was pretty sure we would be celebrating her milestones and potty training her from the NICU.

 

On Tuesday, December 8, they decided to try something new: a different bottle with a special slow-flow nipple to help her pace herself a bit better and to give her a more consistent flow than the hospital bottles offered.  They also ran some blood work on her to see if there were any underlying causes for the desaturations, but it all came back normal later that afternoon.  So the doctor attributed it to her just being born prematurely, before her nervous system had a chance to fully develop.  Also that same day, I made the very difficult decision to return to work, albeit on a part-time basis.  

 

My boss had called me on Monday evening to ask about my anticipated return date, but I couldn't give a definite answer since my baby hadn't even left the hospital yet and we had no idea how much longer she would be in there.  Somewhere in the conversation, she mentioned that one of the admins that they'd hired to fill in during my leave had been exposed to Covid and was now out for a couple of weeks.  And the receptionist (who had returned from furlough in July and announced that she was also pregnant and due one week after me) was now officially on maternity leave, so things were quite hectic.  I'd actually been thinking for the past week or so that maybe going into the office even for a few hours a day would be a good distraction.  I missed having some sort of structure to my day.  Also, since my firm is small enough that they don't fall under FMLA, they can make their own rules when it comes to things like maternity leave.  Per our office policy, I only got 1 week of paid maternity leave.  Everything else had to be PTO or time off without pay.  I had planned to take 6 weeks off: 1 week of maternity leave and 1 week of PTO, then 4 weeks of no pay rather than burning through the rest of my vacation time.  But I hadn't anticipated Avery still being in the NICU nearly a month later.  It didn't make a lot of sense to me to be sitting at home without pay when I didn't even have a baby to take care of.  Part of me felt like I was letting Brian and Avery down by going back to work, but I also hated sitting at home feeling helpless in between running back and forth to the hospital while knowing the office was in a bind.  I felt like a shitty mother for going back, and a shitty employee for staying home.  In the end, I realized that either decision was going to feel like the wrong one.  So I decided I might as well make the decision that allowed me to earn some income while waiting for Avery to be discharged.  

 

So I started going in to work for a few hours a day, usually between 10 and 3.  I would head over to the office after Avery's morning feeding, work through lunch, head back to the hospital for Avery's afternoon feeding, then go home until heading back to the hospital for her evening feeding.  I kept a time sheet of my hours worked and was paid a prorated hourly rate based on my annual salary.  It allowed me to do something productive with my day and feel useful again.  It was actually quite therapeutic!  

On Wednesday, December 9, I celebrated both Avery's original due date and my 5-year anniversary at my job.  However, Avery "celebrated" by having yet another spell that afternoon.  This meant the earliest she could leave was now Monday, December 14th, which meant she would be at least one month old before she ever saw the outside of the hospital.  For the life of me, I couldn't understand why this was still happening at that point in time. This particular spell didn't even occur during a feeding, so it wasn't just a matter of her not pacing herself.  One of the nurses posited that it could be reflux.  However, when I brought that up with the attending physician later, she adamantly disagreed and said it was just from her being premature.  It was the least satisfying answer ever.  How could this still be happening past her original due date?  No one seemed to be able to shed any light on that.  They just kept saying she would grow out of it but could give no estimate on when that would happen.  The hospital staff seemed to take for granted that not everyone spends inordinate amounts of time in NICUs and understands all the ins and outs of life there.  I felt like no one was explaining things to me in a way that made any sense at all.  In fact, I could ask a dozen different people the same question and get a different answer every time.  All I knew was that they had originally said she could be in there "up to a week" and here we were, nearly 4 weeks later with no end in sight and no explanation why.  Meanwhile, every other baby continued to come and go while Avery stayed behind.  Sometimes a nurse or doctor would walk in while I was there, see her and say, "Wow, she's still here?"  (I wanted to yell back, "Yes, and thanks for reminding me!")  It was like a piece of me died every time I walked out those doors without her.  The frustration was soul-crushing and I was ready to give up on life itself.  

Thursday, December 10th, we arrived at the NICU for her morning feeding and found a little Christmas stocking with her name in glitter hanging from her monitor.  On one hand, it was festive and cute.  But on the other hand, it was a sad, painful reminder that she could very possibly spend her first Christmas in the hospital rather than at home.  However, we learned later that day that whenever she did get discharged, she would be going home with an apnea monitor that she would have to wear 24/7 and it would alert us of any decelerations in her heart or respiratory rates.  I felt a bit of comfort knowing we would have a "safety net" to give us some peace of mind in the event she had another spell at home.  We also learned that she would have to repeat the car seat challenge before leaving since it had now been too long since her last one. 

 

The following day, I was feeding her her afternoon bottle with her special slow-flow nipple, holding her upright so she wouldn't guzzle, and everything was going well.  Then I heard the infamous bleeping of the monitor as she started desatting yet again.  At that point, I couldn't even react anymore.  I simply leaned forward, hung my head in defeat and fought the urge to ugly cry right then and there while the nurse ran over to stimulate her and reset the monitor.  I was too defeated to even stim her myself.  It was the most powerless feeling ever to not only know there was absolutely nothing I could do to help her but to be completely in the dark about why this was still happening nearly a month out.  I had all but given up on her ever being able to leave. 

On Sunday, December 13, we celebrated her one month birthday.  I took her picture on the monthly milestone blanket I'd gotten at my baby shower with the number '1' enclosed by the removable pink felt circle.  It was hard to get a good angle in the hospital so I just laid half the blanket inside her clear plastic bassinet, laid Avery on top of it (asleep with thick wires jutting out of her onesie leading to her nearby monitor), and draped the other half over the room divider behind the bassinet.  Of all the scenarios I had imagined for her first picture on that blanket, this was not one of them.  However, I did get another picture that same day of her sitting up awake and she appeared to be smiling in it.  Most people say that any smiles that early are more likely grimaces from gas pains rather than true smiles, but this one seemed to have a bit of self-awareness behind it.  She was staring straight up at the camera with her mouth in an open smile and her eyes just looked genuinely happy to see us.  Maybe, just maybe, she was trying to tell me, "Mommy, it will be OK!"  

 

Monday, December 14 was another birthday: Kirby's "sweet sixteen!"  I'd held a tongue-in-cheek "Quinceañera" party for her at a dog-friendly winery the year before.  Now I was really glad I did since her health was sharply declining so she likely didn't have too many birthdays left.  Plus, with everything going on with the baby and the pandemic, there was no way I could have done anything fun for her that year.  I was also glad I was celebrating at least one of my babies' birthdays somewhere other than the NICU.  Avery even gave us a wonderful present that day by not having another spell.  

 

The following day, our home apnea monitor got delivered to the hospital and Brian and I spent an hour with the company rep training us how to use it.  It looked like a really old WiFi router and had hook-ups for 2 leads, one for her heart rate and one for her lungs.  The leads would be velcroed around her chest by a soft foam belt.  It came with a special canvas carrying case with a shoulder strap to make it easier to tote around, but it was still quite cumbersome.  I wasn't sure how it was going to work with carrying her around everywhere while attached to that, or changing her diaper and picking her up to feed her in the middle of the night without dislodging one of the leads and setting off the alarm.  The alarm on it was louder than a smoke detector and had no volume control, so there was no way anyone within a 500-foot radius would be able to sleep through it.  I remember seeing posts in my Facebook groups from moms who had bought similar devices on Amazon and ended up regretting it because there were so many false alarms, it just caused more stress than it alleviated.  I started to worry that would end up being the case here.  Was there any "normal" part of parenthood I would be allowed to experience?

After our training session with the monitor, the NICU staff told us they wanted Brian and I to "room in" with Avery that night just so we'd get a chance to practice taking care of her all night by ourselves before bringing her home.  It seemed a bit unnecessary to me since Brian already had 3 other children he'd managed to keep alive just fine for the past 21 years.  Plus I wasn't sure what we were supposed to do with the dogs while we were gone.  But, if they wanted us to have a slumber party with our baby in a quiet hospital room, then so be it.  By then, Avery had managed to get through 4 days without a spell, so we were down to the last 24 hours of the current countdown.  

 

That afternoon around 4:30 pm, I was starting to get a bag of things together to take to the hospital for the night when my phone rang with the NICU number on the caller ID.  I felt an overwhelming sense of dread as I answered it and prepared myself for even more bad news.  But, as it turned out, our sleepover was being canceled on account of not enough empty rooms being available.  Evidently, all the pandemic/quarantine babies were now being born so the hospital was just too full.  (Lucky me, I managed to beat the crowd.)  So Brian and I just went back for her 9:00 pm feeding and spent a good hour with her before coming home to sleep in our own bed.  I prayed hard that it would be the last night we would go to sleep without Avery under the same roof as us.

 

Shortly after we got home that night, I was standing in the living room while Kirby (who was half blind from cataracts and senile from middle-stage dementia) walked listlessly around the foyer whining softly to herself, which had become something of a nightly occurrence (a side effect of dementia known as "sundowning").  I turned my back to her for half a second and heard a loud *CRACK!* followed by a yipe. I whipped around and saw her lying on her side on the living room floor, whining and growling as if she were both angry and in pain.  It appeared she had tripped while walking down the step from the foyer into the living room and hit her head on the floor.  The height difference was only about 6 inches but that loud crack was definitely her skull smacking against the hardwood.  I rushed to pick her up and comfort her and make sure nothing was broken or bleeding while she continued half-whining, half-growling.  It was the oddest noise I'd ever heard her make.  She'd clearly concussed herself.

 

I decided to take her upstairs to bed to let her chill and recover.  It was a little before midnight at that point so I started getting ready for bed as Kirby paced around the room restlessly.  All of a sudden, I heard a commotion on the other side of the bed.  I ran over and found Kirby seizing violently on the floor, her tiny little body flopping around like a fish on dry land.  I instinctively scooped her up to keep her from hurting herself and screamed for Brian as I held her tight, helplessly waiting for it to be over.  After she stopped convulsing, she just laid there limp in my arms for several minutes.  Once again, I was transported back to the days when Kia was sick and my mind was completely frozen with no ability to decide what to do.  Brian and I observed her as she slowly regained consciousness then resumed pacing around the room, whining and bumping into walls and corners.  I decided I would let her get her bearings and rest for the night, then I would call her vet in the morning after I got to the office.  I couldn't help feeling grateful for our sleepover with Avery being canceled since this might have happened without me ever knowing about it if it hadn't.

The next day, we arrived at the NICU at 9:00 am for Avery's morning feeding and learned she had remained spell-free throughout the night and was still on track for discharge later that day.  I wasn't going to believe it until she was physically inside the car and heading home with us, so I took the information with a grain of salt.  Avery herself seemed like she was ready to bust out of there, though.  During her diaper change, she kept pulling at her leads trying to find her bottle.  I started worrying whether I would even have time to take Kirby to the vet that day before possibly bringing Avery home.  There was a big snowstorm predicted that afternoon so a lot of places were closing up early.  As desperate as I was for Avery to leave the hospital, part of me suddenly wished I could have just one more day to deal with my other baby's health crisis before Avery came home.  Why did everything have to happen at once?  

 

After I got to the office, I called Kirby's usual vet but they had nothing open for the next 2 weeks.  I started calling around to other locations and even different vets, but not a single one had an opening that day.  The soonest anyone could get her in was over a week later.  They recommended just taking her to the emergency vet, but I didn't think this quite constituted an emergency since it had been 12 hours since her seizure and she seemed OK now.  I eventually called the emergency vet I had taken her to a few times before and spoke with a tech, who ran everything by a doctor.  They assured me that it was perfectly fine for me to just observe her at home for the time being since she was acting normally, but to definitely bring her in if it happened again.  So I was off the hook, at least for now.  By then, it was after 2:30 and the snow was starting to fall, and I was still waiting with bated breath, anticipating the NICU to call and cancel Avery's homecoming yet again.  

Two hours later, Brian and I arrived back at the hospital to see where things stood.  Instead of sleeping in her bassinet, we found Avery sitting in her car seat next to it.  We'd been told she had already repeated the car seat challenge that morning and passed.  But apparently, the staff had failed to record it in her chart in time, so now she had to do it all over again before she could leave.  And of course, she was only a couple of minutes into the hour-long challenge when we arrived to bring her home.  Adding yet another hour to her discharge time felt like we were just tempting fate at that point.  All I could think about was her desatting at the last minute again, and I was so close to just picking her up and running her out of there before it could happen.  I sat in a chair next to her and waited, watching the clock and her monitor like a hawk.  Every time her pulse or heart rate went down even a notch, I held my breath until it went back up before her monitor could beep.  I'd grown accustomed to watching her monitor constantly while visiting her (and my stomach jumping every time I heard one beep whether it was hers or not), but this time the stakes had never been higher.  My entire life for the past month had felt like nothing more than a giant waiting game and that last hour was the longest one of all.  Meanwhile, I texted my mom with periodic updates as the minutes ticked away with agonizing slowness.  

After what felt like an eternity, the hour was up and she had successfully passed the challenge for the third time.  Now could we get her out in time?  I felt like I was racing against the clock trying to get the leads off her body, hook her up to her home monitor, and change her into her coming home outfit before anything bad could happen.  Brian and I had to recall our monitor training session from the day before to figure out how to attach the leads to her chest and velcro them down with the belt, then arrange the wires through the snaps on her onesie.  Wires notwithstanding, she was the picture of adorableness in her pink and white homecoming outfit with festive rhinestones, matching hat, booties, and mittens.  It all seemed like a wonderful dream that I never wanted to wake up from.  I could hardly feel my feet touching the floor as we walked out the NICU doors and heard them close behind us for the final time.  We rode the elevator down to the lobby where I waited with Avery while Brian ran to pull the car up to the door.  Carrying her in her car seat with one arm and the monitor hanging from my shoulder on the other side was awkward and cumbersome.  But I was so glad to be leaving, I couldn't even think about that.  As I rode next to her in the back of the car with snow steadily falling down and Chopin's Nocturne in E♭ playing on the radio, it felt like the end scene of a Hallmark Christmas movie.  I was actually picturing credits rolling and the screen fading to black as we drove away from the hospital.  It was the perfect happy ending!

However, the story doesn't end there.  As any parent knows, the sleepless nights that accompany a new baby are extremely taxing.  And, as I'd feared, the apnea monitor added a whole extra layer of hell.  The leads were like a hair trigger that got dislodged anytime time she moved, cried, or breathed.  The monitor would scream bloody murder every 20-30 minutes, so Brian and I would wake up constantly and have to hit the reset button, in addition to feeding, changing, and comforting Avery anytime she cried.  None of the alarms appeared to be true apnea events, either.  It was pure torture.  (Our neighbors probably hated our guts during that time and I can't say I blame them.)  I became so desperate for any kind of quality sleep (not to mention dealing with a worse than average case of postpartum blues), I literally broke down and sobbed one night as I held Avery in my bed and fantasized about running away and disappearing.  Avery had her first appointment with her pediatrician just 2 days after coming home and already her doctor said to me, "You seem really stressed!"  I didn't feel like I would ever get used to my new role as a mother and I resented everyone who played a part in getting me there, including Avery.  I even said to my OB/GYN at one of my postpartum checkups, "What have I done?!"  My mom assured me she had gone through the same thing when I was born and that it would get better.  She said with me, she noticed a significant improvement in sleep quality once I was around 3 months old.  But that was still 2 months away!  How was I supposed to function on zero sleep until then?  Sleeping was completely impossible with that monitor screaming 24/7.  Although I had gone back on my maternity leave the day after Avery came home from the hospital, I wasn't sure how I would manage after I returned to work full-time.  I even asked Brian how I was supposed to function on zero sleep every single night and his response was, "You don't!"  But not being able to function was not an option.  My exhaustion was slowly killing me.  I'm fairly convinced that sleep deprivation and not simply hormones is responsible for most cases of post-partum depression.

Although the dark cloud of PPD hanging over me was suffocating, I tried my best to conceal my true state and put on a happy face in public.  But I wanted to cry uncontrollably all the time. Pretending I didn't only made it worse.  I didn't want to talk to anyone or do anything other than sleep in a dark room.  It was the least festive Christmas I'd ever experienced, compounded by the fact that I was not spending it in Ohio with my family for the first time in my entire life.  I had a new family and new obligations now that prevented me from living life the way I'd done so up to that point.  My old life was gone forever and I was grieving the loss of my former care-free, child-free existence.  I wondered if I would ever adjust to my new life or feel like my old self ever again.  I actually entertained the idea of tying a cinder block around my ankles and jumping into the lake behind our house.  It seemed like such an easy escape and, at that point, I felt like I'd be doing Brian, Avery, and everyone else a favor if I actually went through with it.  Feeling so stressed and anxious was preventing me from connecting with my daughter and enjoying any part of motherhood.  I felt like I'd made a huge mistake and that I wasn't meant to do this after all.  But feeling that way just made me even more depressed and I wanted to cry even harder.  It was one of the darkest periods of my life in recent memory and I wondered how any parent ever manages to live through it.

In addition to the apnea monitor, Avery's NICU stay begat a lot of additional medical care.  We were ordered 3 home health visits where a nurse sent by the insurance company would come to the house to check on her, weigh her, measure her growth, and basically make sure that Brian and I were taking good enough care of her.  We also learned at her second pediatrician appointment on December 23 that we would need to see a pulmonologist at Children's National Hospital in DC in order to free her of the apnea monitor.  The NICU had told us it would be up to her pediatrician how long she stayed on the monitor, but her pediatrician informed us that it was actually up to the pulmonologist.  We had to wait for the pediatrician's office to issue a referral and then wait for someone from Children's National to call us to schedule an appointment.  The soonest they could get her in was Tuesday, January 5th, which was nearly 2 weeks later.  I could hardly imagine waiting that much longer.  The monitor continued going off constantly even though Avery hadn't had anything even remotely resembling a spell since 5 days before she left the hospital.  I was *this close* to throwing it out the window.  I could barely think or sleep a wink since any time I laid my head down, it would go off and wake up everyone within earshot.  (Except Avery. She seemed to have no problem sleeping through loud noises.)

After just a couple of weeks of using the monitor, the memory light on it starting blinking, indicating the memory unit was filling up from all the data it was recording.  We were told that might happen and, if it did, we needed to call the company to send someone over to the house to swap it out with a new one.  I was hoping the new one would be at least a little less sensitive than the old one.  But it was even worse.  In the first 12 hours alone, it went off more than 20 times and every single instance was a false alarm.  The final straw came in the middle of that same night when it blared like a steam whistle and, in my bleary-eyed state, I couldn't get the reset button to do its job.  I had reached the end of my rope at that point.  So I slammed my fist down on the power button, yanked the plug out of the wall, and screamed, "I'M DONE!!!"  It was the first glimmer of relief I'd felt in weeks.  At her appointment with the pulmonologist the following week, the doctor needed to download all the data from the monitor's memory and analyze it before giving us the green light to take her off of it.  However, since we had only used the new one for less than 24 hours before turning it off permanently, there wasn't enough data for her to give a true analysis.  The old monitor was not readily available for download since it had been given back to the company.  So we had to take her off of it "AMA" (Against Medical Advice).  Brian and I didn't care, though.  It was a small price to pay to see that thing go.

With that dreaded apnea monitor turned off for good, it was finally possible for us to sleep between nighttime feedings.  Brian and I even worked out a system: Since he's more of a night person and I'm more of a morning person, he took care of her starting around 9 pm while I went to bed.  Then he would go to bed around 2 or 3 and I would take over until morning.  This seemed to work well for us since we were both able to get at least a couple hours of restful sleep every night, but we were still looking forward to having full-time help when the grandmas came to visit.  Brian's mom had booked a 2-week visit from January 9-23, so I decided I would end my maternity leave on Monday the 11th since she would be there to help ease the transition.  Meanwhile, my mom and brother had talked about coming down the day after Christmas and staying through the weekend, but 2 flat tires on Mom's car prevented that plan from moving forward.  Instead, they decided to come down the day after New Year's and stay through Tuesday the 5th, the same day as Avery's pulmonologist appointment.  

 

I could barely contain my excitement waiting to see Mom meet and hold Avery for the first time.  I still regretted not getting her reaction to the news of my pregnancy on camera.  So as soon asI heard the car pull up, I stood waiting for her and Rob by the front door, holding Avery in one arm and my phone on video record in other.  The look on Mom's face when she walked through the door and saw her was indescribable.  Her eyes lit up as she gasped breathlessly, "Oh, my God!"  Clutching her heart with her hand, she stood motionless for a couple of seconds.  Then her voice broke into a barely audible squeak as she tearfully greeted her new granddaughter: "Hi, Sweetheart!"  I passed Avery over to her and spent the next few minutes capturing her exuberance on camera while she held her, kissed her, and just basked in the glow of her new title of "Grandma."  It was a wonderful feeling that made the last 10 months all worth it!

On that note, I feel like I should talk about something now just to get it over with so I never have to talk about it again.  As a breast cancer survivor, I knew that breastfeeding might be a challenge since I only had one good side to work with.  A lot of ladies in the Babies After Breast Cancer group who'd had lumpectomies or single mastectomies said they'd been able to exclusively breastfeed from their unaffected side, while some others produced a fair amount but still had to supplement with formula.  I had decided I would give myself 6 months to breastfeed Avery before going back on Tamoxifen, although I was aware that I may or may not be able to produce enough to feed her exclusively.  I knew a lot of women feel very compelled to exclusively breastfeed and get very down on themselves if they can't.  I'd promised myself that I would try my best but if I couldn't do it, it wasn't the end of the world and I wasn't going to think of myself as a failed parent.  What I hadn't counted on was everyone and his brother telling me that the only reason I was failing at it was that I just wasn't "committed enough" or that I just wasn't "giving it my all."

 

I kept getting told that, as long as I kept pumping for 20 minutes every 3 hours (honestly, who even has time for that??), eventually the milk would flow like a fountain.  But after several weeks of faithfully trying, I still couldn't get more than 7-10 ml per pumping session.  It didn't help that my newborn daughter was still in the hospital so we had very little skin-to-skin contact.  Plus, my stress and frustration was mounting from both Avery being stuck in the NICU and my lack of success when pumping.  Also, pumping hurt like hell no matter what I did to try to alleviate it.  I would wince in pain just looking at the flanges.  The pain coupled with my lack of tangible progress made me want to just cut my losses and forget the whole idea.  But there was so much pressure to keep at it!  People kept saying if I just worked harder, I would eventually see the results.  But it took a whole day's worth of pumping sessions just to collect enough milk to take to the hospital for one partial feeding.  I tried lactation cookies, a special lactation drink, and lactation supplements.  Those actually doubled my output, but that just means I went from 7-10 ml per pumping session to 15-20.  I was still barely filling the bottom of a collection tube.  Looking at pictures or videos of Avery didn't help either since I still wasn't feeling very maternal or connected to her yet.  I worked with several different lactation consultants at the hospital and they all seemed to believe that I just needed to try harder and pump even more.  Basically, it was my own fault I was failing at this. 

I finally reached my breaking point the morning of Monday, December 7, after getting home from Avery's morning feeding at the NICU.  I was trying to get into the shower but I just curled up in a ball on the bathroom floor and sobbed.  I felt like I was failing at everything I was trying to do.  I had failed to stay pregnant until my baby was ready to be born, I had failed to be induced to deliver her naturally, I had failed to bring her home from the hospital with us, and now I was failing at the most natural biological function all women should just innately be able to do.  It was too much stress and I was crumbling under all the pressure to pump, pump, pump!  Something had to give.  I was slowly but surely losing my mind.  

 

I saw my OB for a postpartum check-up that afternoon and tearfully filled her in on everything.  She assured me that my mental health was more important than my being able to breastfeed, adding that she herself was not a breastfed baby yet she still turned out just fine.  It was comforting and validating to hear, and I knew she was absolutely right.  But I still felt like something was deeply wrong with me that I couldn't even produce enough milk to cover the bottom of a small bottle.  It was like I had only gotten so far in the process then hit a brick wall.  I talked to my mom about it later and she echoed my doctor's sentiments.  She then informed me that she'd had the same issue when I was a baby.  She'd tried to nurse me for 3 months but always had to supplement with formula, and eventually just gave up.  Then when my brother was born 2 years later, she didn't even bother trying.  My mind was blown.  I'd known my whole life that I was breastfed as a baby and my brother wasn't, but not once did it ever occur to me to wonder why that was.  Suddenly it all made sense!  This was a groundbreaking revelation.  Not only that, Mom then told me my grandmother had tried breastfeeding all 4 of her children but had been unable to produce a single drop all 4 times, and my aunt hadn't been successful with either of her kids, either.  Clearly it was just not in that side of my family's genes to nurse babies.

This was the turning point for me.  I finally came to the realization that, just because you have at least one working breast, it's not a given that you can automatically produce enough milk to feed a baby.  Sometimes you can do everything humanly possible but your body still won't cooperate.  Ultimately, I just had too many cards stacked against me with being one-sided, having given birth prematurely, delivering via cesarean, Avery spending her first month in the NICU, and apparently a genetic component to boot.  So at that moment, I decided that I would just pump what I can when I can and think of every little bit as a gift, without putting any more undue pressure on myself.  It was a humongous weight off my shoulders, but I still wanted Avery to have the benefits of breast milk somehow.  I had seen a few posts in the Babies After Breast Cancer group about a non-profit organization called Third Strand whose mission is to provide donated breast milk to babies whose mothers are unable to nurse due to death or life-threatening illness (breast cancer certainly being one of them).  I wasn't sure if I would qualify for assistance since, technically, I still had one functional side.  But I decided to apply anyway as a last ditch effort to fortify Avery with the antibodies and other benefits that I hadn't been able to provide for her myself.  The next evening, I got a call from the organization's founder.  First he informed me that his oldest daughter also happened to be named Avery.  Then he told me that they could help me.  What they would do is overnight a giant ice-filled cooler packed with a month's supply of frozen donated breast milk directly to my house.  The issue, however, was that Avery was still in the NICU with a discharge date that kept getting pushed further and further back.  So we opted to wait a few days to see how things unfolded, hoping she would come home soon.

 

On the night of Tuesday, December 15 (the day before she came home from the hospital), the cooler got overnighted via airplane from Texas to Virginia.  It needed to be delivered to us within 24 hours because, if the ice melted, the milk could spoil and this would all be for nothing.  However, that was also the same day the snowstorm hit so all shipments coming into Dulles airport got delayed by a whole day.  The longest time one of Third Strand's coolers had previously gone without melting was 36 hours, so we were all biting our nails and watching the clock like hawks until the delivery truck pulled up to our door.  I was also holding my breath in anticipation as I pried the lid open to see whether the contents had survived the delay.  In the end, Avery's cooler ended up setting a new record by staying frozen a full 48 hours!  It took a bit of engineering to cram all those frozen bags into our kitchen freezer and there was barely any room left for anything else.  We made them last several months, too.  Since Avery was still so small, her pediatrician wanted us to continue feeding her a special high-calorie formula to help her growth, so we alternated between special formula and thawed breast milk.  The morning of the day she came home from the hospital was the last time I pumped.  Now that she had a steady supply of breast milk, I was all too eager to put that whole nightmare of an experience behind me.  When I zipped up the bag containing my pumping supplies for the final time, it felt like I was closing the chapter on what would likely be a very touchy subject for the rest of my life.  

 

I felt that this part of the story needed to be told because someone else out there needs to hear it.  I'm not the only one who's struggled with this, and those of you who are currently struggling with it - whether you're a breast cancer survivor or not - need to know you're not alone and that it doesn't make you any less of a mother, or a woman.  (For more information on Third Strand and their mission, visit their website here: https://www.thirdstrand.foundation/) 

Once Avery's apnea monitor was gone and I was no longer tethered to a breast pump every 3 hours, my peace of mind slowly started to return.  But I realized I needed to make a concerted effort to practice self-care.  So, after returning to the office full-time on January 11, I resumed my twice-daily 1-mile walks to work and back.  I also joined a new gym to resume my thrice-weekly workouts, something I hadn't done since my old gym closed back at the beginning of the pandemic.  I had meant to find another gym right away, but all of that fell to the wayside after I found out I was pregnant.  Now that I had a child to take care of, I needed it more than ever to be able to thrive again.  

 

Over the next few months, I gradually adjusted to motherhood and my bond with my daughter finally started to grow.  It was never a light switch flipping on, though.  In fact, I didn't even realize it was happening until the day Brian drove his mom back to the airport after her 2-week visit with us.  He took Avery with them since I was planning on going to the gym, so I was home alone for a few minutes without her there.  Something in the atmosphere just felt so empty, like one of my arms was missing.  I felt compelled to pace the floors looking for her even though she wasn't there.  I hardly even knew what to do with myself knowing she wasn't nearby.  "Well, this is new!" I remember thinking to myself, incredulously.  It was around that same time that I started finally feeling like my old self again.  The dark cloud was dissipating and I was a functional human being once more.  However, I knew what was coming next and was dreading it to the core of my soul...

On Monday, February 15, I met virtually with my oncologist for my regular bi-annual follow up.  At my appointment just one year before, I was nearing the end of my Tamoxifen wash-out and getting ready to start trying for my post-cancer/POSITIVE trial baby.  At my next follow-up appointment just six months later, I was already 5 1/2 months pregnant.  Now I had a 3-month-old daughter!  I held her up to the web cam so my oncologist could see her and admire her for a minute before getting down to the nitty-gritty.  Now that I was no longer pregnant or nursing, I needed to go back on Tamoxifen to finish out my 5-10 year sentence.  Since I had only taken it for 27 months before enrolling in the trial, I still had at least 33 months left to go.  But being off of it for those 15 months made me realize just how much better I feel when I'm not taking it.  A lot of my time off was spent dealing with pregnancy and postpartum crap, though.  Now I was finally close to feeling 100% again and the thought of going back made me want to cry.  My oncologist had originally told me that he wanted me back on Tamoxifen as soon as possible.  But he must have sensed my hesitation that day because he said I could go back on it whenever I was ready.  If I needed a little more time off, he told me I could have it so I shouldn't feel like it had to be now or never.  But I knew immediately that I would never be "ready."  So I told him to just write the script so I could fill it and get this whole thing over with as soon as possible, rather than prolonging the inevitable.

The morning I took that first tablet (15 months to the day after I took my last) was a melancholy day.  It was like going back to prison after a nice long furlough.  All of a sudden, the expression "Tamoxifen holiday" made so much sense now.  I worried how the side effects would affect my budding relationship with Avery, especially the mood swings.  I didn't want her to grow up afraid of me because I lost my temper at little things and couldn't handle even the slightest frustration.  I wanted to be good to her!  How was I supposed to choose between taking a potentially life-saving medication knowing it significantly decreases my quality of life, or being able to fully enjoy my life knowing I'm risking it getting cut short one day?  Is the extra anti-cancer benefit really worth it?  I even asked Brian, "If I didn't go back on it, would that really be the worst thing?"  He responded, "If you got cancer again, then yes, it would literally be the worst thing!"  So I'm taking it for him and for Avery, so I can hopefully be around for them and live a disease-free life as long as possible.  It's the proverbial spot between a rock and a hard place.  I will just have to get through these next 3-8 years the same way I've gotten through the past 42: one day at a time.  Something someone once told me about parenthood is that "the days are long but the years are short."  I pray the same holds true for my remaining years on Tamoxifen.

The end (for now).