Archive | July 2014

Another similarity: hair loss

I would like to add one more thing to my list of similarities between chemotherapy and pregnancy-related experiences:  hair loss.

It started this past weekend.

Let me first provide some context though.  The average woman sheds ~100 hairs per day.  I’m an Indian woman, and as every Indian woman knows, we probably easily hit or exceed that average.  For most of this past year, however, I had been pregnant.  For those of you who don’t know, pregnant women tend to barely lose their hair.  According to BabyCenter, normally, about 90% of the hair on our head is in a growing stage, while the other 10% is in a resting stage.  Once the resting period ends, those hairs shed.  The elevated estrogen levels due to pregnancy, however, extend the resting stage, meaningfully reducing the amount of hair loss or shedding and resulting in unusually more voluminous hair.  After delivering the baby, however, the estrogen levels fall, causing more hair follicles to enter the resting stage.  The new mom won’t go bald, but the hair loss is quite noticeable to her as the head of hair reverts back to its pre-pregnancy thickness by shedding all the hair that normally would have fallen out anyways, but now in a more concentrated time period.  As a result, the new mom feels like all her hair is starting to fall out.

Now let’s bring this back to me.  I very clearly noticed the lack of hair loss while pregnant, and so did my bathroom shower.  No longer was I needing to stick long pieces of fallen hair from a hair washing on the shower wall, only to circle it up and throw it out later.  Until this past weekend that is.  In fact, before I even went in the shower, taking down my ponytail by gently removing the hairband alone caused like 10 long pieces of hair to come out.  A more likely reaction from someone undergoing chemotherapy is likely “Aaaghhh, it’s starting!”  I, however, was confused.  My immediate reaction was one of uncertainty – was my hair beginning to fall out because of the chemotherapy or because I’m right at the post-pregnancy mark where my body (and head of hair) is now trying to revert to its natural state?  That’s when it hit me – the list of similarities between chemo and the experience of pregnancy (before and after) is even longer than I originally thought.

I’d like to be in denial and attribute my recent hair loss to pregnancy; after all, I always envisioned chemo-related hair loss would happen rapidly with big chunks falling out.  I was so stressed that big chunks of my hair were going to start falling out this past weekend itself (given 2-week mark) that I was carrying around one of my pre-tied head scarves the whole time at the wedding I was attending!  Fortunately, the shedding was constrained to just the few dozens of hairs that fell in the shower or while making my hair.  Today, however, when I lifted my head off the pillow at the end of my chemo infusion, there were more hairs that had fallen out.  I hadn’t been brushing or washing my hair, or something else that could serve as a scapegoat.  My hair follicles are weakening, and if they are beginning to fall out just from laying my head on a pillow, it likely is the chemo doing its thing.

Aaaghhh, it’s starting!

 

This seems strangely familiar

It’s been 10 days since I first started chemotherapy. I still remember Ash making the acute observation that, at that moment, my tumor is as big as it is ever going to be. I recall how the weight of his statement hung in the air, and then I thought, “Yeah, we’re going to crush this.”

Many have asked me how I’ve been feeling. The impact of the medication is cumulative, so some side effects will be delayed and some will strengthen over time. That said, and hopefully I don’t offend anyone, so far the experience has been similar to being pregnant. Since I love lists, I’ll share my observations of some of the similarities:

  • I have waves of nausea and extreme fatigue:  first trimester flashback
  • I have trouble sleeping:  this is particularly rough the night following a treatment infusion (again, probably due to the steroids), but nothing to complain about versus third trimester sleeping challenges
  • I have to get up to go to the bathroom multiple times in the middle of the night:  this only happened the night after my second infusion though, so again, nothing to complain about versus third trimester bathroom frequency
  • I have hot flashes:  I didn’t feel as excessively hot during pregnancy as I tend to now though
  • I have to take vitamins:  pre-natals to Vitamin D and B; well I still take pre-natals too – a lot of good stuff in there!
  • I have lots of doctors appointments: though belly ultrasounds have been replaced with breast mammograms and I’m no longer requesting 3D images burnt on a CD
  • I need to be extra health and diet conscious: staying hydrated and consuming protein and calcium continue to be focus areas
  • I’ve gotten care packages:  Biotene and fuzzy socks are now more useful than cocoa butter and belly bands though
  • There is anti-bacterial gel in every room:  think of me as a newborn baby – we both want to stay away from sick people

It’s fascinating how the experience of trying to rid your body of something so ugly can have so many similarities to growing something in your body so beautiful.

Happy birthday to me

I love birthdays.  I especially love my own birthday.  Generally, I would look forward to my birthday for weeks and then want to make a week-long celebration out of it whenever possible.  Clearly I like to be the center of attention 🙂  My 30th birthday was epic.  Even turning 31 had its own charm given it was my “Baskin-Robbins Birthday”.  (Get it?  Like 31 flavors.  No, that’s not actually a thing – I made it up – but I think it’s pretty clever so feel free to spread it.)  This year, however, my birthday snuck up on me.

I’m now 32 years old.  Hopefully that doesn’t make the name of my blog obsolete.

Given it would be the first weekend after starting chemotherapy, we had no idea how I would be feeling.  Mid-week after starting chemo, I did in fact start feeling nausea and fatigue.  I presumed this birthday would come and go like any other day.  My amazing family, however, had other plans.  Diya sang “happy birthday to Mommy” to me first thing in the morning.  My sister and her family surprised me at home with a scrumptious home-cooked lasagna meal for lunch followed by a variety of cakes to indulge in.  She even got me some awesome pre-tied head scarves that I will be debuting in a future post.  They’re actually so pretty I’m tempted to just start wearing them now – why wait til I’m bald to accessorize my head?  Ash and my parents each got me beautiful gifts as well.  I got surprise flowers delivered by close friends living afar (thanks Seema and Esther!).  We then rounded off the evening with a massive family dinner of both my and Ash’s broader families, further treating our sweet-tooths with yummy funfetti cake my nephew made me and delicious halwa my mom made.  The celebrations then continued the next day with a party Ash organized of many of our friends coming to visit us and meet Mira.

It was a completely unexpected, amazing birthday weekend.  After weeks of stress and uncertainty, it was a time of relaxation and revelry.  It was an example of how the love of family and friends can help you briefly forget what you are struggling with, but then strengthen you when you once again remember.

 

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Healthy living

Ok, so my last post back-fired.  Confessing to sleeping past 3am on my first night of treatment was a complete fail.  My dad’s exact words were “You’re doing exactly what you’re not supposed to be doing.”  Apparently, blaming the steroids is not an acceptable response.

My parents have always been focused on health and wellness.  I’m not just talking well-meaning parental guidance like “drink lots of water” and “try to exercise”.  I’m talking “let’s gift our teenage child the book Enter The Zone:  A Dietary Roadmap for Christmas since we didn’t get the memo that almost anything else would have been cooler.”  Then again, with cover headlines like “avoid the dangers of bad carbohydrates” and “balance your hormone and insulin levels”, I can see why they thought it might be relevant for a teenager.

Today, my dad’s passion for health-oriented reading paid off.  We met with a nutritionist at Stanford and he gave her a run for her money.  The appointment started off with me providing examples of what I eat and drink in a typical day.  I think she was expecting a reasonably short meeting where she primarily provides examples of food sources for protein, and then we call it a day, but clearly she underestimated my dad – a fountain of knowledge who came armed with questions.  We engaged in a nearly 2hr appointment discussing the potential dangers of dairy, whether sugars “feed” cancers, how much Vitamin D one needs, the impact of beet root juice on breast cancers, and a variety of other topics that involved words like “sprouted bread”, phytochemicals, and omega-3 fats.  I was totally fatigued by the end of the appointment and I’m not completely convinced it was just the side effects of the chemo.

Now, I’m a vegetarian who doesn’t drink, smoke, or do drugs, so other than being the world’s cheapest date, I would also be considered a reasonably healthy person.  After this appointment though, and after a variety of conversations with my parents, there’s much more to be done on the healthy living front.  Adjusting my diet will just be part of it (thank goodness for my mom’s help on this front!).  Goodbye dairy milk – hello almond milk.  Goodbye white rice – hello brown rice.  Goodbye $5 strawberries – hello $8 organic strawberries.  Getting more sunlight will be another.  I was once told by a doctor that everyone should take Vitamin D because whether or not they know it, they are likely deficient.  It makes sense actually given so many of us spend the majority of our day at a desk.  Apparently, all we need is 10-20 min outside from the hours of 10am-2pm each day to get the necessary amount of Vitamin D.  It’s sad how so few of us make the time to do even that.  Getting more (and by more I mean any) exercise is high on the list – maybe back into dance, maybe starting up yoga?

When I was a kid, I used to keep a daily to-do list/schedule.  That, in and of itself, should surprise nobody who knows me.  This, however, was a special to-do list as it was broken out into three categories:  mental, physical, and spiritual.  It would serve as a forcing function for me to make sure I was doing something every day that would nourish all aspects of my self.  Now, given that I was doing this as a kid, I was clearly a huge dork (though I prefer to consider myself an “old soul”).  It’s looking like a pretty good idea right about now though.  Stay tuned for future posts on the lifestyle changes I implement.  In the meantime, do yourself a favor, take a walk in the sun during your lunch break tomorrow.

Game on: Day #1 of treatment

Monday, July 14, 2014.  It was exactly one month to the date that I got my original diagnosis of breast cancer.  It was the longest month of my life.  Now, it was game day.

I felt well rested in the morning.  After weeks of night duty with Mira, I finally slept through an entire night as we had just hired a night nurse/nanny.  It’s amazing how one’s perspective can change so much over time.  When I first heard the concept of a night nurse years ago, before I was a mother myself, I was baffled by the concept.  Sooo…the night nurse helps change the baby’s diaper, burps him/her, and then helps him/her go back to sleep?  Hmm…isn’t that called parenting?  People in India don’t have night nurses and they all figure it out.  Then, I had Diya and my mom stayed with me for two months, essentially on a 24-hour shift early on when I was having nursing challenges.  I realized then that my mom was effectively my night nurse.  People in India don’t need night nurses because they have the family support in place.  It was then that I became pro-night nurse for anyone who lacks the support and has the financial resources to afford one.  When Mira was born though, I still never considered needing a night nurse for myself.  I figured we’d manage with me on night shift (Ash helping me on weekends), and my mom taking over in the morning so I could sleep in.  In fact, we were managing just fine.  I’m not sure why I initially resisted when Ash suggested we bring on a night nurse.  Maybe it was my coupon-clipping self trying to express my middle class values.  With treatment to soon begin though, we all knew I couldn’t be doing night shift throughout the week anymore.  “What else would we spend our money on?” Ash asked.  True.

Anyhoo, I digress.  My first day of treatment involved Ash and me getting to Stanford by 7:15am.  The plan for the day was to get my blood drawn at the lab so they could confirm my white cell count was healthy enough to begin chemo (this would happen before every infusion), that would be followed by an appointment with Dr. T (my medical oncologist) for a clinical exam (this would happen roughly every other week so she could assess the changing size of the tumor and discuss side effects, etc.), and then I would be headed to the ITA (Infusion Treatment Area) for the chemotherapy itself.

The day got off to a slightly rocky start.  The lab didn’t have my orders for the blood draw.  Only the doctor could provide that, but the clinic doesn’t open until 8am.  Concern there being that if my blood isn’t drawn until 8am, the results won’t be ready in time for my doctor’s appointment, and that could potentially push off the timing of chemo as well.  Not to mention that we could have been sleeping for longer.  After only a little bit of stalking and some urgent email sends though, we connected with Dr. T who released the orders.  Blood draw – check.

Our appointment with Dr. T was introductory as you’d expect.  She conducted the clinical exam and confirmed the tumor hadn’t seem to have evolved meaningfully since last time (phew!), the left lymph node still felt suspicious, and that the right lymph node seemed to be nothing to worry about.  She walked us through the various drugs I would need to be taking at home (i.e., 4 pill drugs for nausea/vomiting and a self-injecting white cell booster shot).  She mentioned that patients often self-inject the shot in their belly, but that I look rather petite and so may not have enough fat there.  To which Ash very matter of factly responded, “Actually, she has some extra fat in her belly from the pregnancy.”  Umm…thanks Ash, we’ll be discussing that at home later.

I had many questions regarding side effects.  When will my hair begin falling out?  About 2 weeks after the first treatment.  Does Taxol really cause your finger and toenails to fall off (vicious!)?  Can happen, but is rather rare.  How cautious do we need to be given the weakened immune system on a spectrum of complete isolation to continuing to live your life?  This was my most pressing question given I’m naturally a social person and we also have Diya enrolled to begin preschool (i.e., germ factory) at the end of August.  Fortunately, Dr. T believes I should continue living my life, but with some common sense precautions like frequent hand washing and avoidance of anyone with symptoms of a sickness.  Ironically, she still feels that it’s fine for Diya to attend preschool though since the biggest driver of infections when the WBC drops is bacteria rather than viral infections, and viral infections are most common with kids in school.  This advice may not apply to everyone though depending on their specific case and treatment plan.

2014_07_14 Chemo Day 1 - Parul A

With my questions answered, I was ready to start chemotherapy.  For those of you who are like I was at the beginning of this journey, you may not actually know how chemotherapy is delivered.  It’s largely various drugs that are fed by IV over the course of 1-8 hours on a weekly, bi-weekly, or every 3 week cycle for numerous cycles.  My first segment of treatment would be four cycles of a 21 day treatment of weekly Taxol infusions and Carboplatin infusions on just Day 1 of each cycle.  Given the frequency of the blood draws and infusions, many patients have a port surgically implanted in their chest for easier access than finding a vein in the arm each time.  The port, however, leaves a 1-1.5″ visible scar when removed.  Given I’m young with access to veins in both arms (since I didn’t have any surgery yet that would render one of my arms unusable for infusions), Dr. T thinks I can give it a shot without a port for now and we can always install one in later if needed.  All right – let’s do this.

2014_07_14 Chemo Day 1 - Parul

We headed up to the ITA and lucked out by getting a private room (vs. the infusion chairs out in the open area) – little wins 🙂  Once the IV was installed, I was given a variety of premeds including steroids (through the IV) and anti-nausea/vomiting pills.  The first infusion of Taxol is the riskiest since some patients have an allergic reaction and close monitoring is required.  They pre-emptively gave me some Benadryl that they warned would make me feel drowsy.  They weren’t joking.  I could barely keep my eyes open.  They told me when they began the Taxol infusion, but I was already half asleep by then.  I suddently felt a tightening in my chest and a burning sensation rise from my chest up my neck.  My eyes were still closed when I voiced the pain, and a split second later when I opened my eyes, there were 4-5 nurses rushing into my room to turn off the infusion.  Ash told me my face had turned bright red and the nurse had pushed the alarm.  My body was having an immediate reaction to the sudden onset of toxic drugs, so they would give me more Benadryl and then we would try again.

I fell into a deep sleep with the next round of Benadryl and by the time I awoke, I had been on the Taxol for awhile, so was now safely out of allergy zone.  I could barely think and kept slurring my words.  I told Ash that I felt drugged, to which he pointed out that I was.  It was at this time that Stanford thought it appropriate to send a social worker into the room to discuss my feelings.  I could barely stay awake, wasn’t sure I was even making coherent statements, and was somehow responding to psychologist-like questions.  She finally left and I was so happy to go back to sleep.

Ash had stayed busy multi-tasking during the appointment while I slept.  He was cranking out work on his laptop and was scheduled to head to the airport for a work trip as soon as he dropped me home from the appointment.  Given my allergic reaction and overall non-functioning state though, he made the last minute call to cancel his trip.  I was so glad to have him by my side.

2014_07_14 Chemo Day 1

It was past 2pm when we finally headed home.  I slept the whole car ride and then for a few more hours once I got home.  Once the Benadryl (or whatever other sleep inducing drugs they may have given me) wore off, I felt great.  Great as in normal.  I spent time with my kids, my parents, and took a walk around the yard to keep my blood flowing.  When I crawled into bed, all I wanted to do was finish updating this blog so I could send it out to my family and friends.  I always was the type of person to work late into the night to finish whatever I needed to get done.  It was past 3am when Ash realized I was still awake and working on my blog.  He was displeased, to put it lightly, so I packed up and called it a night.  I was just driven to cross sending out the blog off my to-do list.  Then again, maybe it was all the steroids.

My learnings from the pre-treatment phase

It has been nearly one month since I was diagnosed with breast cancer.  Though my journey has only begun, I’ve collected a number of learnings from this pre-treatment phase (pre-diagnosis, testing, and diagnosis) that I share with you below.  I truly hope you and/or your loved ones find benefit from them.

  1. Do self exams:  If you’re a female, do them.  If you’re male, tell all your female loved ones to do them. It doesn’t matter if you or they are 30 or 60 – it can save their life.  Yes, I understand not everyone’s insurance covers MRIs and mammograms, but that is no reason to let a lump go undiscovered.  Many articles say to conduct self exams in the shower, but I recommend trying to (also) do them when lying down with your arm lifted creating a right angle at your shoulder.  My lump was best felt in that position and easily overlooked when standing up.
  2. Healthy paranoia can be your friend:  If you even think there’s a possibility you’ve felt something, act on it.  I knew my lump could easily be pregnancy-related -probabilistically it should have been.  Healthy paranoia, however, drove us to the OB-GYN’s office and eventually to a biopsy.  It was not only a great friend, it may have saved my life.
  3. Be forward-looking:  It’s perfectly fine to be shocked and to cry and to wonder how life can be so unfair.  Soon though, you realize it is more empowering to focus energies towards action.  Figure out what needs to be done and work towards doing it.  As Ash likes to recite – “Hope is not a course of action.”
  4. Emotions come in waves:  You never know when and where what emotion will hit you.  It can vary when sharing the news of your cancer with family and friends – sometimes I cried, sometimes I was very composed and just spoke matter of factly, and sometimes I kept laughing as a socially awkward defense mechanism.  Similarly, emotions will come in waves at the most unexpected time.  Despite only ever planning to have two children, I couldn’t help but cry when the doctor asked me if I’m done having children.  Though I know fertility treatment options are now available for those that want to improve their chances of preserving that ability, the thought that I might lose my fertility and not even have the choice to have more children, triggered an unexpected sense of mourning.
  5. You never know how someone might be able to help you if you don’t open up to them:  We got access to the leading team at Stanford because Ash shared the news with his assistant at work and it just so happened that her godparents are big donors to the breast cancer center and were able to call in a favor.
  6. Compile and retain a copy of all medical reports and imagery:  Collect all relevant medical records from past exams and request copies of the imagery on CD from each hospital’s release of medical information department.  When going to each new test/procedure, request a copy of the report and imagery at that time itself.  It may be given to you in that appointment or mailed to you later, but standard to be provided for you to retain in your personal records.  Carry these records to all doctors/institutions you are seeking opinions from, but never leave behind one of your original copies.  The doctor will be equipped to make a copy and return the original to you.
  7. Take time to find the right locus of care:  Though psychologically, you and your loved ones will want to move to action and get the tumor out as soon as possible, there is longer term value in taking the time to reasonably slow down and do your research to assess the right treatment plan and medical team.  As many doctors reminded us, when it comes to breast cancer, days don’t matter, months do.  Ultimately though, weeks are a grey area so take the necessary time, but be efficient when doing so.
  8. Take control of your own medical fate:  Do your own research, find the doctor with the narrowest and deepest expertise for your specific case / tumor, get a 2nd (maybe 3rd!) opinion, and don’t be shy about asking questions.  One family friend shared the story of her mid-30s friend who was diagnosed with and treated for Stage 1 breast cancer, only to be diagnosed with Stage 4 cancer just 4 months after she finished her treatment.  Perhaps her stage was misdiagnosed from the beginning or perhaps her treatment plan was insufficiently aggressive.  Regardless, multiple opinions and/or increased testing could have given her story a different ending.
  9. Ultimately, however, you have to put your trust somewhere and in someone:  The problem with being over educated and comfortable with data is that it’s easy to get caught up in a never-ending cycle of research and second-guessing.  We reached a point where we were reading and comparing the details of clinical trials to essentially identify our own treatment plan, only to further confuse ourselves since no perfect data exists for what we need to know.  Eventually, the science becomes an art and you have to trust that your medical team is competent and acting in your best interests.
  10. Stay positive and be thankful:  Step back and identify the silver linings in your story.  Recognize what you have to be thankful for, what you have to fight for, and ultimately, what you have to live for.

Having faith

It was Sunday, July 13, the final day before I was to go on the offensive against my cancer.  My sister and her family came over to spend the day with us, and my sister had the lovely idea of all going to the temple/mandir.  We had not yet taken Mira since she was born, Diya LOVES mandirs (big fan of ringing the bell), and what an opportune time to pray and seek strength before I start treatment.

We went to the Jain Center of Northern California – a beautiful marble temple in Milpitas, CA.  It had been years since I’d gone to this particular temple, and I was struck by the beauty of the statues/murthis.  Without a second thought, I walked in, sat down in the front, placed my hands in a namaste position, and began to pray.  By habit, I began saying the Namokar Mantra, the primary mantra in Jainism that conveys respect to liberated souls, spiritual leaders, teachers, and monks to destroy all sins and obstacles.  I say “habit” because for years I have recited the Namokar Mantra every night before going to bed.  For me, it was never about the religious practice, but an opportunity to reflect on the highlights of my day and be grateful by expressing thanks to the greater being that my sense of spirituality believes exist.  I completed my prayers and executed the religious practice led by my mom of offering rice to and requesting blessings from every murthi.

As I finished, it dawned on me that I was expressing thanks and requesting strength and support from the same “God” that gave me cancer to begin with.

Interestingly though, I wasn’t angry.  This realization, however, gave me some perspective on my spirituality and sense of faith.  Perhaps it meant that I didn’t believe that there is a “God” that has entire control of what happens to us and how we deal with it.  Perhaps it means that I think there are some things in life that are inevitable (even out of God’s hands), but that I prefer to believe in a greater being and a greater purpose to help me get through those inevitably challenging times.  Yes, it sucks that I got cancer at the age of 31.  If that was a given to happen though, I’m relatively fortunate.  Multiple doctors have expressed surprise that I even noticed the lump at its current size.  My lump was biopsied in the very short window of time between me feeling the lump and my milk coming in.  The cancer was identified right after the birth of the second child that I had always wanted (side note, however, while I’ve always known I only wanted two children, it is surprising how the potential of fertility loss or early menopause can cause one to mourn the loss of something that they never thought they even wanted).  I’m supported by a number of amazing family and friends.

So, ultimately, why was I praying?  I believe it was because I am approaching this entire battle from a perspective of positivity.  Even in a suboptimal situation, I have a lot for which to be thankful.  I’ve always believed that everything happens for a reason, but sometimes it just takes time (and a rollercoaster of emotions) to realize what that reason is.  I prayed to nourish that positivity and have faith that there’s a greater power out there with a reason in mind.  Only time will tell.

The final test

There was a LOT of debate on whether we should re-biopsy the left lymph node and place a marker in it to track its location in the future.  Different doctors across institutions had different advice:

 

“You should definitely do a core biopsy to confirm if the FNA was correct on the lymph node status.”

“The lymph node status wouldn’t impact the course of treatment leading up to the surgery, so you can just confirm status at that time.”

“Obviously you should place a marker at the location of the suspicious lymph node so that in case it responds fully to the chemo, you can still identify the location of the relevant node at the time of surgery.”

“Placing a marker in the lymph node could actually increase the chance of metastasis because the gel around the marker expands and could rupture the lymph node, displacing the cancer cells and enabling the marker to float to a different location.”

 

Are you serious??  That’s the widest spectrum of advice ever.

We knew from all the imagery that the left lymph node was suspicious, but the PET/CT scan was the first to indicate some enlargement of the right lymph node.  So, we were back at Stanford for one final test before starting chemotherapy.  Dr. T ordered a bilateral ultrasound of the axillary.  Yes, UCSF had just done an ultrasound of the left axillary – Dr. R had emailed indicating she is “no longer concerned about the nodes”.  That was strange given the UCSF radiologist had seemed to indicate there was definitely something suspicious and that Dr. R would likely want to re-biopsy the node.  Since we are no longer working with Dr. R, we never got an understanding of why her perspective had changed.  At Stanford, Dr. W joined the appointment to see the ultrasound imagery compared to the earlier MRI from CPMC, and she and the radiologist agreed the left lymph node is definitely swollen, but not likely malignant.  They attributed the enlargement to the many changes my body has recently endured – I had been providing that explanation all along!  I’m still not sure why they suddenly joined that school of thought given the size of the node had not appeared to shrink over the last couple of weeks, but it meant that they did not want to conduct a biopsy of the left node.  Unexpectedly, however, they decided in the appointment that they want to do an FNA biopsy of the RIGHT node!  Umm…I was never told to be concerned about that node.  Apparently, there was a risk that it could be a second cancer since it was unlikely that the cancer cells from my tumor on the left breast would have floated to the right lymph nodes.  This was clearly troubling, but would not actually impact the planned course of treatment – it would, however, lead to a more concerning prognosis.

Stanford conducted the ultrasound guided lymph node FNA biopsy in a much more hospital-esque way.  The team collected themselves and repeatedly confirmed information as if we were going into surgery.  A cytotechnologist was present in the room to confirm real-time that a sufficient sample size was collected during the biopsy.  I received a call from Dr. W herself later that afternoon – the biopsy was negative.  No cancer in the right lymph node!  Again, the little wins must be celebrated.  Thank goodness for not having to wait through the weekend for those results.

The moment was finally here.  The moment when all the diagnostic testing and research was complete and we were shifting to action.  Treatment was scheduled to start the coming Monday, July 14.  Game on.

Wig shopping

Today was a fun, productive day.  Mom, Dad, Mira, and I went to Stanford’s monthly wig bank, followed by their class on chemotherapy.  While Dad and Mira held back outside the wig bank, Mom and I went to have fun with wig shopping.  It was abundantly clear as soon as we walked in that the volunteers at the wig bank were not certain whether my mom or I was the patient.  Yes, this 31 year old who is often confused with looking like a high school student is in fact the cancer patient.  At one point, one of the cancer patient customers (of your more standard elder woman demographic) asked me what brought me here.  After I shared my diagnosis, she took my hand in hers and wished me all the best, trying to comfort me that all will work itself out.  She herself was now battling her second bout with cancer, but I think she felt more sorry for me than herself.  I was not bothered by the pity, but it was interesting to observe.

There was a limited selection to choose wigs from, but still enough.  The key questions were what length/style and what color hair?  Is this time to go shorter than ever before?  Longer and more glamorous than usual?  Colored hair/highlights since I’ve never had that done to my natural hair?  Mom and I narrowed our choices to three – and then we sent WhatsApp pictures to Dad, Ash, and my sister for input.  Pictures of our final selection are below.  Stay tuned to find out which one we eventually picked! 🙂

Just as we finished up at the wig bank, it was time for Mira’s next feed.  I sat in a chair directly outside of the wig bank and fed Mira her baby bottle.  The lady who had been helping me all along in the wig bank, a cancer patient herself, happened to walk out and see me feeding Mira.  “Is that your baby??”  Oh yes, not only am I 31, but I have a one month old newborn.  She quickly shifted her emotion and expression to commenting on how adorable Mira is, but not fast enough for me to see the pained expression on her face.

It’s OK – I understand the sorrow and the pity.  It’s definitely not a standard situation, nor an easy one.  Doesn’t mean I can’t have fun wig shopping though 🙂

 

New style!

Short hair with bangs!

 

New color??

Long brownish hair with bangs!

New glamour!

Long black hair with bangs!

The path of least regret

A big decision needed to be made. On July 8, it was nearly a month since the original biopsy of the lump, and we needed to shift gears from research and consults to treatment plans and action.  We spent the entire long Fourth of July weekend struggling, both intellectually and psychologically, with the decision of what treatment plan to proceed with and with which doctor.  To add to the chaos, we had multiple unofficial phone or email consults with medical breast oncologists/surgeons from around the nation that our friend network had connected us to, as well as a team from Private Health collecting research to inform our open questions.  While amazing to feel like you have top doctors from around the nation looking at your case, one thing had become very clear:  oncology is much more of an art than a science and there are many ways to treat breast cancer.  If you ask 8 different doctors for their opinion, you will get 8 different answers.

Ultimately, we narrowed our focus to the following decisions:

  • What treatment plan do I want to pursue:  UCSF’s recommendation to do Taxol + Carboplatin followed by AC if the lymph nodes are positive vs. just Taxol + Carboplatin if the lymph nodes are negative vs. Stanford’s recommendation to pursue the more cutting edge treatment plan of CarboGem regardless of lymph node status.  UCSF’s recommendation was based in the “standard care” for TNBCs, but would be highly toxic.  Stanford’s recommendation was based on Dr. T’s belief that CarboGem would be uniquely beneficial for BRCA1+ TNBC, as effective but with lower toxicity (and that we can always switch to higher toxicity if the tumor is not responding)
  • Where do I want to pursue my care:  UCSF vs. Stanford based on comfort with doctors, institution, and environmental/logistical factors

After days of debate and research to answer our open questions, that only resulted in the realization that no clear data exists, I realized my decision came down to one powerful question:  What would be the path of least regret?  Specifically, if the cancer were to recur in 5 years (which it has a higher chance of doing for TNBCs than other forms of breast cancer), what course of action would I least regret?

Using this paradigm, the answer was resoundingly clear – go aggressive.  Regardless of treatment plan, we would be targeting a 100% pCR or pathological complete response (i.e., the tumor disappears through the course of chemo).  The open question, however, is would a 100% pCR in a “standard care” treatment plan result in similar levels of recurrence risk as the CarboGem routine?  Unfortunately, given how relatively new CarboGem is for breast cancer, the history of data is not yet available to answer this question.  Therefore, if I pursue the most aggressive treatment plan now, and still have a recurrence down the road, I can tell myself that I just happen to be part of the ~5% of pCR patients who experience a recurrence.  If I pursue CarboGem and have a recurrence down the road, however, I would always wonder if that recurrence would have still happened if I had just gone aggressive from the beginning.  I would never want myself or my loved ones living with that regret.  The obvious tradeoff is the intensity of the side effects over these coming months of treatment.  My father-in-law once told me, however, “days go by slowly, but years fly by.”  How true that is, and it is in that truth that I find comfort with this decision.

Dr. R had been amazing through this process being responsive to emails and working to setup appointments at UCSF.  At the very end, however, I decided that my proximity to Stanford would be an important factor in reducing the stress level of my weekly treatments.  We checked with Dr. T whether she would be comfortable going with a more “standard care” approach of treatment for my case and she totally understood me not wanting to have any regrets.  After apologizing to Dr. R for any inconvenience and thanking her for her tremendous help, we finalized our treatment plan and locus of care.  An action plan was finally in effect – recovery, here we come!!