My final post

When I first got diagnosed with breast cancer in June of 2014, I always said that I’m going to wrap “it” up by the end of the year. “Sure, the next six months will be tough, but soon after, this will just be a blip in my life story.” Here we are, six months later, at the end of the year. With my treatment largely behind me and reconstruction nearly complete, the time has come for me to start a new chapter in my life. With the new year around the corner, I say farewell to 2014 with this final blog post.

As I sat in the waiting room of Stanford’s Cancer Center recently, I chatted with an 80 year old woman sitting nearby.  She shared with me how she had recently been diagnosed with cancer, and how the diagnosis gave her a newfound appreciation for life.  I smiled and nodded in agreement.  That’s what everyone says right?  Isn’t that how we’re supposed to feel?  With something as big as cancer in our life story, we’re not supposed to sweat the little things, right?  I have to confess that I don’t always feel so impacted.  Perhaps my overly-positive mindset that always expected everything to be OK and aided in my recovery, also dampened my absorption of how life-changing this experience should be.  Perhaps old habits just die hard.

As I continue to physically and mentally return to my pre-cancer self, I find the need to remind myself to not get upset or nag over trivial things, to remember to exercise, meditate, and eat healthy.  As more time passes, I am sure I will need to be reminded of the key lessons I have learned through this experience:

  • Today is the day to take control of your health:  We’re never too young or too old to start exercising more, sleeping more, eating healthier, and stressing less.  As my mom always says, how we treat our mind and body today is what we’ll reap in 10 years.
  • You are your best medical advocate:  Recognize changes in your body and seek help accordingly.  Educate yourself, ask questions, and seek multiple opinions.
  • Appreciate your parents:  No matter how old we are, we will always be their babies.  No matter how independent we are, we will always find comfort in them during times of need.
  • An act of kindness goes a long way:  The outpouring of love and support I received from family, friends, and even complete strangers taught me a lot about how to be there for people in need.  If I want to do something to help someone, I should just do something.  Anything.  Whether it’s dropping off food or emailing a near stranger to let them know they are in your thoughts, each outreach is much appreciated.  As the opportunities arise, I will pay this kindness forward.
  • Surround yourself with positivity:  Life is too short to be constantly stressed at work, or unhappy in a relationship, or frustrated with so-called friends.  Positivity is a state of mind you choose to have, but is nourished or impaired by whom and what you surround yourself with.

Going forward, life will slowly begin to go back to normal.  After joining Weddington Way on January 6, 2014 and starting leave after my water broke on June 6, 2014, out of complete coincidence, I am returning back to work on January 6, 2015.  As friends learned about my diagnosis throughout the summer, many asked how I’m handling that with my job, and I always responded with:  “Well, technically, I’m on maternity leave.”  I look forward to rejoining the millions of working parents constantly striving to crack the nut on work-life balance.

Mira is now nearly seven months old and a complete bundle of joy.  I’m pleased to say that she does appear to recognize me as her mother despite the limited time she so unfairly received from me in her early months.  My heart will melt the day she first calls me “Mama,” and I will be able to forget that I ever once cried wondering if my daughter knows who I am.

With treatment complete, I am in the final stretch of my reconstruction.  After one more tissue expansion appointment, I will likely have my breast reconstruction surgery in February.  Yes, that’s the “boob job” surgery, and hopefully my final one.  Aside from more frequent screenings in these early years, as well as some ongoing medication, I will soon complete my shift to the recovery phase.  My involvement with Stanford’s Cancer Center will continue in these coming months through participation in their Healing Touch and Living Strong Living Well programs.  Given my BRCA status, I also have a decision to make regarding having my ovaries removed as a preventative measure against ovarian cancer.  While that conversation will begin soon, any action is likely at least a few years down the road.  Let us tackle just one obstacle at a time.

Many cancer survivors say their experience was a blessing in disguise.  I, too, have joined the bandwagon and believe many great things came out of these past 6.5 months.  I learned a lot about myself through this journey, including a newfound love for writing.  Perhaps I’ve always had a lot to say, but now finally had a forum through which to reach people.  I’ve truly enjoyed sharing my story with you all along the way and have found great comfort in, as well as encouragement and motivation from, the feedback I received.  I am very excited for 2015 and the many memories that await – including Ash’s and my 10-year wedding anniversary!  With 2014 in the rearview mirror, I will never forget the memories it too provided.  As a dear friend told me, 2014 was a remarkable year – it was the year I got a new job, the year I had a beautiful new baby, and the year I beat cancer!

 

Mira & Diya - The brightest lights in my life

Mira & Diya – The brightest lights in my life

 

A love letter to my parents

It was only after I got pregnant with Mira did I start to think about what it must have been like for my parents to be pregnant with me, their second daughter.  Did their pregnancy with me fly by in a blur since there was now a toddler keeping them preoccupied?  Was “second child syndrome” in full effect?  Did they wonder how they could ever love someone as much as their first child?

Likely due to my magnetic personality, they do love me a lot after all.

It was exactly six months ago today that my mom and I were in Mira’s room and I got the call with my cancer diagnosis.  I still vividly remember it.  My parents were in town to help us post-delivery – specifically, for my mom to help me with post c-section recovery – but after The Call, there was so much more help needed.  Their one-way tickets remained open as I needed emotional, and later, physical support.  My mom spent her days (and sometimes nights) caring for Mira, teaching Diya things (like our home address!), cooking us all healthy meals, and preparing special concoctions for me to expedite my recovery or help ease my chemo side effects.  My dad was my nutritionist, my exercise buddy, and my companion to many chemo and other Stanford appointments.  They were my arms in the weeks following each surgery – lifting Mira in and out of her crib, driving Diya to school when Ash was traveling, and even hiding the lawn chairs in the garden shed in anticipation of the overly-hyped “Storm of 12/11/14” .  There are no words to fully express how thankful I am for all my parents have done for us these past six months.

We all know to express love and support for the patient who is diagnosed, but it is easy to overlook how much such a diagnosis can affect those folks that are suddenly caretakers.  Whether a spouse, a parent, or a child, a caretaker’s life is significantly disrupted as well.  Their stresses magnify, as not only are they also emotionally impacted by the diagnosis, but they are likely also taking on a greater share of the responsibility at home.  Life is strained and tiring for the caretaker, but they probably feel unable to even vent about it, feeling guilty at the thought of it.

My parents put their own lives and life projects on hold to spend the majority of the past six months living with me to help us through this ordeal.  While they would do it again in a second, I also know it must not have been easy on them.  As recovery progresses well and I can once again lift up the girls, my parents returned home yesterday.  Nonetheless, they continue to provide love and support from afar.  Just today, I texted my mom from Mira’s room referencing how crazy it is that it’s been six months since we heard the diagnosis together.  She responded with an acknowledgment that that was a bad day, but a reminder that it is now behind us.

Yes, the scariest parts are now behind us, but Mom and Dad, I will always remember and cherish what all you did (and continue to do) for me…for us.  Love you with all my heart.

 

August 3, 2014 - Day of my head shaving and unconditional support from Mom and Dad

August 3, 2014 – Day of my head shaving and unconditional support from Mom and Dad

Mindfulness Meditation

It’s been nearly 20 years since I first meditated.  It was at a Jain ashram in India, and we were in a large room sitting cross-legged on a cold, hard floor.  I remember feeling uncomfortable as my back began to hurt due to lack of any support behind it.  More glaringly, I remember how my legs went numb as they fell asleep and then the tingly feeling turned into sharp, shooting pains.  That was also the last time I meditated.

Yesterday, I attended a session at Stanford titled “Mindfulness Meditation” – one of the many free programs Stanford’s Cancer Supportive Care Program offers current and former cancer patients.  I had envisioned a studio-like dynamic where we’re all sitting cross-legged on the floor facing forward with a teacher guiding us from the front of the room.  Instead, there were eight of us sitting around a conference room table staring at each other.  Unsurprisingly, I was the youngest person in the room.  The facilitator asked us to go around the table and share what brought us to that class.  My immediate thought was “because I like free stuff,” but I figured that might be an inappropriate response.  I had to think on my feet, but as I started talking, I realized I had more reasons than I even realized.  I shared how I was diagnosed after Mira’s birth, how after chemo and two mastectomies, I’m now focusing on surgery recovery and undergoing the reconstructive process, and most importantly, how with two young kids and a full-time job, my “normal life” going forward will be pretty busy.  I not only needed to learn how to calm my body into a meditative state, but I needed a forcing function to make me do it.

I did learn a few things during the session.  The first was how our body is like the ocean – there might be a lot going on on the surface, ranging from gentle waves to a vicious storm, but how deep down below, the water is very calm.  Similarly, we each have that “calmness” deep within ourselves, but it can take effort to tap into it.  This is where the “mindfulness” in “mindfulness meditation” comes in.  It’s all about being mindful, cognizant, focused on that inner calmness.  This can manifest itself by closing our eyes and focusing on our breathing, counting each breath or labeling them in our mind as “in” and “out”, as well as focusing on how our body feels as we feel the air fill our lungs, causing our stomach to expand and then slowly deflate.  Alternatively, mindfulness meditation can involve doing a mental body scan where we focus our mind to think about each part of our body from the toes up to our head as if we were a researcher analyzing each part.  I have pink nail polish on my toes…I can feel goosebumps covering my arms…etc.  Coincidentally, my dad sent me an article a few weeks ago titled “Harvard Unveils MRI Study Proving Meditation Literally Rebuilds The Brain’s Gray Matter in 8 Weeks.”  The article states that “The participants spent an average of 27 minutes per day practicing mindfulness exercises, and this is all it took to stimulate a major increase in gray matter density in the hippocampus, the part of the brain associated with self-awareness, compassion, and introspection…Participant-reported reductions in stress also were correlated with decreased gray-matter density in the amygdala, which is known to play an important role in anxiety and stress. None of these changes were seen in the control group, indicating that they had not resulted merely from the passage of time.”  Meditation practitioners have been touting the benefits of meditation for thousands of years, but you really know it’s legit when Harvard says so.

The second topic we discussed in the class was the healing benefit of meditation.  Apparently, there is a strong tie between our breathing rate and our heart rate, and a lower heart rate is calming to the body.  So not only do we feel more relaxed, but since stress attacks the immune system, meditation helps our body heal faster by reducing stress and boosting the immune system.  I liked how the teacher distinguished between “pain” and the “experience of pain.”  We all have pain that we can’t control, but we can control our experience of that pain.  Our mind magnifies the feeling of pain, drawing our attention towards it, making it easy to forget that much more of our body is pleasant (or at least neutral) than is in pain.  Conducting mindfulness exercises that focus our attention towards those neutral areas and away from the pain can actually alleviate our body’s experience of that pain.  After the first meditation exercise we did in the class, one patient said she “forgot about” (i.e., did not experience) her post-surgery shooting pains as her mind was so focused on the exercise.

There is one particular challenge that I, and most (if not all) others in the room, struggled with:  staying focused.  It’s easy to get mentally distracted and have your mind wander.  What I learned here, however, is that meditation is not about trying to control your thoughts or stop yourself from having thoughts.  Not only is it nearly impossible to wipe your mind clean of thoughts, but thoughts are actually indicative of a healthy mind.  So, we don’t need to control them, we just need to recognize that we had them and then come back to focusing on our breathing or body scan or whatever it may be.  Your mind is like a toddler – you can’t control it from wandering here and there, all you can do is try to guide it back to what you want it to be doing.

I believe there are benefits to meditation and I don’t want another ~20 years to go by before I do it again.  It’s not, however, realistic of me to go down to Stanford whenever I need to meditate, as driving home in rush hour after the class offset any potential benefit the meditation class had had.  Instead, I’ve downloaded a smartphone app called Headspace (“a gym membership for the mind”) that includes a variety of 2min to 1hr guided and non-guided meditation programs.  It includes a free 10-day program that teaches the basics of meditation in 10 minutes per day – yea free things!  Perhaps a smartphone app isn’t what the good folks at the Jain ashram would recommend, but I’m happy to embrace this 21st century approach to learning how to meditate.  Cheers to reduced stress, expedited healing, and rebuilding the brain’s gray matter.

 

The most thankful of Thanksgivings

The Starry Night has always been my favorite painting.  To be fair, I don’t know a lot about art or how to interpret paintings.  I look at abstract, Jackson Pollock-esque paintings and have a hard time distinguishing between great art and a preschooler’s project of the day.  I do, however, see meaning in The Starry Night.  The houses and the village representing life as we know it, trumped in size compared to the expansive sky with its swirling clouds and stars.  A visual representation of how life as we know it is just a mere element of a much bigger picture – how there are forces at work much larger than ourselves.

The Starry Night by Van Gogh

The Starry Night by Vincent van Gogh

I’ve mentioned my dad in previous posts – including how he’s more knowledgeable than my Stanford nutritionist!  He has always encouraged me to take on challenges, and is the one to blame for my inner debater.  What some of you may not know, however, is that my dad has profound hearing loss.  The decline has been gradual over the past ~30 years, and now his hearing is ~95% gone.  I remember the volume of the TV and car radio getting louder and louder in the first decade of his hearing decline.  As his hearing loss progressed from mild to moderate in that second decade, we all began to project our voices for day to day conversation.  We became a very loud family, and not just at our lengthy dinner table discussions.  This past decade has been the toughest.  As dad’s hearing loss descended into “severe,” it impacted his life on many levels.  I cannot imagine how frustrating it must be for a man who loves a good discussion to struggle with partaking in a group conversation, to smile and nod when everyone’s laughing to appear like he’s understanding.  When Diya was born and my dad would carry her around singing Hickory Dickory Dock, I remember thinking how nice it must be for him to be able to talk to someone without expectation of being heard in return.

We sought several medical opinions over the years.  Early on, dad’s hearing loss was diagnosed as being caused by EVAS (enlarged vestibular aqueduct syndrome) in conjunction with a head injury he endured in a car accident in the 80’s.  We were told time after time that there is nothing that can be done, no surgery that could be conducted.  He received multiple opinions that confirmed this view.  When I was diagnosed with breast cancer, Ash’s employer connected us to Private Health Management (PHM), a medical concierge service focused on providing patients with customized and uncompromised healthcare.  PHM assisted me greatly after my diagnosis to help identify the right oncological and surgical experts, and understand the tradeoffs of various treatment plans.  It was once chemo treatments were underway and PHM had less on their plate that I thought to ask them for help on identifying the top hearing specialists in the nation as well.  I knew it was a bit “out of scope” from my cancer case, but figured it never hurts to ask.  They were amazing and responded with their top two recommendations, the first being in Florida and the second in LA.

We decided to proceed with a remote consult with Dr. S in Florida and embarked on getting updated CT scans and hearing tests for my dad.  We continued researching EVAS in the meantime and kept finding articles indicating that nothing could be done for adults.  When the radiologist’s report came back, however, it indicated nothing particularly unusual about my dad’s aqueducts.  Something seemed off, and I hoped Dr. S’s interpretation of the CT images could provide some clarity.  The consult went better than any of us could have hoped for.  Dr. S is very confident that my dad does not actually have EVAS, but instead hearing loss due to otosclerosis, a condition addressable by surgery – in other words, he believes my dad has been misdiagnosed for the past 3 decades.  The surgery historically performed to treat otosclerosis is called a stapedectomy, but Dr. S believes we should proceed with a stapedotomy, as it has a much lower complication rate.  He believes that with a stapedotomy, my dad will once again be able to hear, at least somewhat, with no aid, and at nearly normal levels with the help of a regular hearing aid!!

There are many ways to react to such news.  The first and foremost is contained excitement – we don’t want to jinx anything, but for the first time, feel like we are being provided with hope that we can take action on.  The second is frustration.  Understandably, my dad can’t help but wonder “what if?”  What if he had gotten the correct diagnosis and surgery 20+ years ago – how different might his life be?  I told him that 20+ years ago, he would have gotten a stapedectomy, the surgery with a high risk of complications.  Who knows what complications he would be living with today?  I told him perhaps he was meant to wait until now, until we had access to someone proficient with the less risky surgical option.

This past Thanksgiving, my family gathered together at my house for the festivities.  My sister prepared and brought over all the delicious courses for my family’s traditional Thanksgiving meal.  Historically, we always went around the table before dinner saying what we are most thankful for from the past year.  Recently, however, my secret champion(s) left “Get Well” balloons at my doorstep along with a little box of blank cards.  I was advised to jot down what I am thankful for on those cards.  So, only slightly deviating from tradition, I instead passed a card to each family member and encouraged them to write down what they are thankful for.  “Parul surviving cancer” being off-limits.  After dinner, we laughed and cried as each of us shared the contents of our card(s) with the group.  While she couldn’t write it, Diya shared that she’s thankful for purple, green, yellow, and blue balls (I chalked it up to being thankful for all the colors in the world, but I’m pretty sure she’s referring to her ball pit).  Each and every adult at the table, however, included thanks for the potential that lies ahead for my dad – a 2015 with possible restored hearing.

I obviously have a lot to be thankful for this year: a healthy, happy, beautiful new daughter; an outpouring of love and support from family, friends, colleagues, and even strangers; access to excellent medical care and the insurance to support it; and a great new job at a start-up run by smart, compassionate women (to name a few).  I am also thankful, however, for the reinforced belief that everything happens for a reason.  When I was diagnosed with breast cancer at such a young age, it was difficult to reconcile my foundational view with this turn of events.  Over the past few months, however, the experience has not only helped me make positive changes in my life and appreciate every day that much more, but I believe that a solution to my dad’s hearing loss may be the ultimate purpose behind my diagnosis and treatment.  Had I not been diagnosed with breast cancer, we may never have been presented with the opportunity to restore my dad’s hearing.  As overwhelming as our daily struggles might be, there are greater forces at work in our lives.  A belief of mine that was once only embodied in The Starry Night is now integral to my breast cancer story as well.

Happy Thanksgiving Dad & Mom!

Happy Thanksgiving Dad & Mom!

Cancer – it will never be just a zodiac sign

I loved astrology as a child.  Like, a lot.  There are still numerous books on a shelf in my old room at my parents’ house relating to astrology, palmistry, dream dictionaries, etc.  It’s actually in my blood.  My maternal great grand-father was a professional astrologer in India back in the day.  He was titled the “Emperor of Palmistry” in all of India, and had published books on the profession.  My dad is also pretty good at palm-reading, and I dabbled in it when younger as well.  I’ve always been fascinated with research or (pseudo)sciences that are meant to help me better understand myself, my characteristics, my potential.  In early adulthood I visited many “$5 psychics” for fun, but eventually had to self-impose a ban given how seriously I sometimes took them.  A large portion of my childhood was spent specifically on astrology though, trying to understand how one’s personality, and possibly destiny, is influenced by their star sign.

Given my mid-July birthdate, I am a Cancerian.  This is why I was particularly struck by the message on a whiteboard at Stanford’s infusion center months ago:  “Dear Cancer, I hope one day you are just a zodiac sign.”

A message in one of Stanford's chemo infusion centers

A message in one of Stanford’s chemo infusion centers

I kept a picture of this message ever since, thinking it would be the finale post to my blog.  I always thought that I’d deal with chemo for a few months, have a double mastectomy, spend some weeks recovering, and then have this cancer thing wrapped up by the end of 2014.  At which time, I would bid farewell to cancer and let you all know that, going forward, it will once again be just a zodiac sign to me (though the hope that one day cancer itself will not exist will continue).

I can no longer say that is true.  Perhaps it was naive of me to ever think that was possible to begin with.  Don’t get me wrong, I wasn’t too far off on the timeline.  There happened to be two mastectomies instead of one, and a whole set of months and a surgery related to reconstruction that I hadn’t accounted for (that will take me into early 2015), but the crux of the battle is essentially over.  You all know the outcome of my first, left-side mastectomy – the pathology results confirmed my tumor entirely disappeared from the neoadjuvant chemo and my lymph nodes were never negative to begin with after all.  At yesterday’s follow-up appointment, Dr. T reminded me that only ~1/3 of BC cancer patients achieve pCR (tumor entirely disappearing), but of those that do, regardless of the treatment plan that got them there, ~95% do not relapse going forward.  In new news to all of you, Dr. T also confirmed that the pathology tests on the tissue from my recent right-side mastectomy were also cancer-free (as expected, but still, yea!).  So, sitting here today, I am technically “cancer-free” and should be telling you that cancer is now in my rear-view mirror.

The reality, however, is that cancer will never be just a zodiac sign to me ever again.  Just in yesterday’s appointment, Dr. T warned me that patients are so go-go-go from the point of diagnosis through treatment, that they actually hit an emotional dip when it’s over from never having had the chance to really absorb everything that had transpired.  I immediately began tearing up, reminded of the unexpected breakdown I had had weeks after my first surgery.  We discussed how there is still the likelihood that I should take Tamoxifen, a daily pill for ~5 years with its own set of side effects, to minimize the risk of recurrence.  We discussed how she wants me to attend a “survivorship clinic” to learn what to be mindful of going forward.  We even discussed whether I’ve considered getting my ovaries removed down the road given my higher than average risk of ovarian cancer due to being BRCA1+.  She knows I’ve just been through a lot; as Dr. T put it, I’ve been “attacked” both physically and mentally since early June.  So, the plan is to just focus on recovery for the next few weeks and revisit these topics in the new year.

What this really means, however, is that there will always be new cancer-related topics to be addressing.  In the coming days, it will be reminding myself about the little things that need to be or can be done as chemo side effects begin to reverse.  Just today, I went to the threading salon for the first time since July, and upon seeing my just-barely-no-longer-bald hair, the aunti eagerly asked if I recently visited Tirupathi (an Indian temple where men and women shave their head and donate the hair).  Umm, no, I actually just underwent medical treatment.  In the coming weeks, it will be focusing on physical therapy and how I can best recover from surgery.  In the coming months, it will be completing the tissue expansions and implant surgery.  In the coming years, it will be dedicating efforts to minimizing the risk of recurrence.  In the coming decades, it will be addressing what risk my daughters are at and how they would like to confront it.

Going forward, I will continue to be a Cancerian.  That said, I will also continue to be a cancer fighter and survivor.  In the end, I think it may actually lead to a healthier and happier life.  We’ll see what the stars have planned for me.

P.S. In case you’re wondering, this will NOT be my last post after all.  I still have lots of thoughts to share 🙂

Short-term pain for long-term gain

When I woke up from my surgery this past Monday, I knew it was over.  Unlike last time when I awoke from the anesthesia confused and wondering why the surgery hadn’t started yet, this time I concentrated really hard on trying to capture my surroundings as they rolled me towards the operating room.  I remember passing by other patients in the pre-op area, and I remember seeing swinging grey double doors ahead of me, but I have no memory of going through those doors.  I don’t know if the anesthesia knocked me out beforehand, or if it included a memory loss component that wiped out those memories, but I presume it’s best not to remember.

Ready for Round 2!

Ready for Round 2!

In some aspects, it was deja vu waking up in the post op area.  Groggy head, dry mouth, eyes searching for a nurse.  They don’t let family wait in the OR recovery area, so the faster I spotted a nurse, the faster Ash could be permitted inside.  Just like before, they offered me ice chips to quench my thirst and ensure I don’t react to the anesthesia or pain killers with sudden nausea.  Lesson learned from last time, however, ice chips don’t quench the thirst.  There is not enough ice chips or water that relieves the dryness left in your mouth and throat following the oxygen mask and breathing tube.  I thought mints would be sufficient last time, but no, other than fresher breath that I’m sure everyone appreciated, they did not provide much help.  What did provide relief?  Lifesavers.  I planned in advance this time to keep a pack in my belongings bag (the one that comes into the post op room with me), since who knows when we’ll get moved to a hospital room and I’ll have access to my overnight bag.  A Lifesaver candy was essentially the first thing I asked Ash for when he arrived, and after digging into the pack and handing me a red one, my mouth and throat felt so much better.  There’s something about the juice that slowly secretes and coats the mouth and throat that is very soothing.  Jolly Ranchers can probably serve the same purpose, but there’s something fun about using Lifesavers to “save your life.”  Yes, sugar is against the anti-cancer diet, but this is a highly recommended exception for anyone facing surgery.

In other aspects, this surgery was very different.  Last time, I lost so much blood (that the breast surgeon later told us it was the most she’d seen lost in surgery in her entire career and I later realized was actually in a life-threatening state during surgery) that I required one platelet transfusion, two blood transfusions, and a lot of painful attempts at blood draws to confirm my counts were recovering.  This time, the minimal blood loss meant no follow-on blood draws, which was fortunate since the pre-op IV was already in my foot since my arm veins are officially unaccessible.  Last time, I woke up pale, swollen, and unrecognizable.  I remember it taking so much effort to speak, so much effort to move.  This time, I felt more energized, peppy, and excited to talk (the latter probably due to the success of the Lifesaver).  Ash and my parents all said I looked healthier, more like my usual self this time around, and it felt much easier to move.  I was even able to move my right arm, the operated side, to a certain extent with no pain.  The latter was likely due to no lymph nodes being removed in this surgery.  The first mastectomy was on the cancer side, so the surgeon needed to dig around my axilla area to extract the sentinel lymph nodes.  Since this was a prophylactic mastectomy, however, the procedure was less invasive and my pain/stiffness levels less extensive as a result.

Chatting away with my parents!

Time in the post-op area passed by quickly enough between Ash visiting me, my parents coming to chat, me taking a short nap, and then Ash returning to spoon feed me some homemade food.  It baffles me how long patients remain hungry if they don’t bring food from home since they don’t get hospital food until they get checked into a room, and that can be many many hours after surgery.  Sure, you can get some saltine crackers, but after fasting since the night before, my stomach would eat itself before finding saltine crackers sufficient.  The most unfortunate experience of the recovery room time was when I needed to pee (due to the bags of saline being pushed into me).  Last time, it was painful to get up and out of bed and walk to the bathroom, but with help from Ash and the nurse, I did it.  This time, with the IV in my foot however, they didn’t want me to try to walk on it.  So instead, I had to use a bedpan.  There is one word that can summarize that entire experience:  sub-optimal.  Having a bedpan slipped under your butt so you can pee while lying down, then holding the pee because you think the bedpan will (or already has) overflowed until you can get the nurse to come back and swap it out, has “unfortunate” written all over it.

Luckily, I only had to go through that once because soon after we found out a room was ready for us!  We got a private room again this time (helps to put in the request when you check-in for surgery early in the morning), so Ash was comfortably able to stay overnight again.  They kept the IV in my foot for the ongoing saline and occasional pain killers and antibiotics they were pumping through there, but these nurses had less concern about me walking on the foot to use the bathroom.  Odd how there’s such different training or preferences across nurses.  We had some great nurses this time around though – one who even went to the same high school as Ash back in the day (a few years behind him though).

We came home on Tuesday afternoon and had a mini birthday celebration for Diya that evening to make her feel extra celebrated.  I had wanted to surprise her in school that morning with treats for her classmates, but since I was still in the hospital, my parents did it on my behalf.  She loved it and great memories were captured on camera.  I slept through most of Wednesday, Thursday, and Friday though, and really only started getting my energy back on Saturday.  This recovery has had less ongoing muscle pain, but higher levels of extreme fatigue.  I do have occassional shooting pains that are essentially electric shocks being sent by my now-cut nerve endings, but those should resolve themselves in the coming weeks.

Friday, unfortunately, involved an urgent trip back to Stanford for an unscheduled visit with the breast surgeon given some troubling appearance to my breast skin.  It looked like fluid accumulation under a large patch of darkened skin, but the doctor assured me it’s a blister that sometimes appears due to the removed blood vessels and will all heal fine.  There’s another area that’s slightly red though, and a potential sign of early infection, so I’ve been upped to a higher dose of antibiotics.  The plus side of going to that visit was that I was able to get my drain removed and I’m back to not having anything hanging off of me.  Score!  We also discovered that my breast surgeon and I went to the same elementary school many years ago (years apart though), and each lived off of the same road!  No wonder Dr. W and I get along so well.

I’m going in for my post-op follow-ups with my oncologist and plastic surgeon this afternoon and may have more to report back then.  In the meantime, many might wonder why I went through all this, why I’m going through all this, for a breast I was never diagnosed to have cancer in.  It is so that I don’t have to live my life wondering if today is the day I find a new lump.  Sure, surgery and recovery are painful, but the short-term pain is a small price to pay for the long-term gain.

Just another mastectomy in the morning

My prophylactic mastectomy is in the morning. Yes, like tomorrow/Monday morning. If you find that unexpected, you’re not alone. We just found out mid-week ourselves that they’d like to do the surgery this Monday. My initial reaction was a mixture of emotions:

  • Relief: For a short while it had seemed that the surgery wouldn’t be until December or January (only due to scheduling conflicts; my platelet counts are back up to normal!), so I was relieved that it wasn’t going to be pushed out after all and we could more closely synchronize the reconstruction of both breasts
  • Anxiety: The realization that I would only have a functioning right arm for a few more days before being out of commission for a few weeks stressed out the “doer” in me. Clearly a to-do list needed to be made and tackled before this next surgery

The last few days have been a whirlwind of productivity. New light fixtures and blinds installed in the house – check. Old iphone backed up and traded in – check. Address book updated and holiday cards ordered – check. Amongst these and a variety of other relatively mundane tasks, however, this past weekend was filled with great times with family and friends. The most important parts of the weekend, of course, revolved around my beautiful daughters.

I had been told that I’m not supposed to lift anything more than 5-10 pounds for a month after my first surgery. Therefore, I’d been telling Diya for weeks that “Mommy has a boom-boom, but I’m going to pick you up on your birthday,” since that would fall soon after the one-month mark. We were both so excited about it, so when I found out that my second mastectomy was going to now be exactly one month after my first (October 17 vs. November 17) and right before Diya’s birthday, I knew I would have to prepone the birthday celebration. I had to make the most of the short window of time I had to be able to carry the girls before going into surgery again – before beginning another month of not be able to properly hold them.  There is something magical about being able to hold your young child close to – chest to chest in a big arm hug.  Picking up and holding Diya today for the first time in a long time melted my heart.  She wrapped her legs around my waist, her head snuggled into the curve of my neck and her arms wrapped around me tight.  It’s like she also missed me holding her, and also knew it would be awhile before I could again.

We celebrated Diya’s birthday with our families, with class might I add, at Chuck-E-Cheese’s today.  Not only was it the easiest way to outsource birthday festivities, but Diya, along with the parentals, had great fun trying out different games.  She was only slightly terrified of Chuck-E-Cheese and the singing, robotic band on stage.  Mira even got to partake in the fun by being buckled into a mini “ride” that could easily be mistaken for a free babysitter.  I was bummed they didn’t have the massive ball pit like the Chuck-E-Cheese I grew up going to had, but I’m sure there’s some child who peed in the pit that we can blame for that.

Celebrating life at Chuck-E-Cheese's!

Celebrating life at Chuck-E-Cheese’s!

The other milestone for the weekend was that we got Mira’s ears pierced!  Let’s be real – she’s an Indian girl – it’s going to happen sooner or later.  I was an infant when mine were pierced, and Diya was the same age as Mira when she got her pretty studs too.  It’s a great age since they won’t remember the pain, and it actually hurts less than a vaccination shot at this time.  Getting it done before the surgery was important to me so that I could hold Mira when it happened and comfort her as soon as possible.  There were immediate tears, but she was a champ.  She calmed down quite quickly, and was smiling again soon after.  She’s already been through so much in her young life, this paled in comparison.

Loving my earrings!

Loving my earrings!

I had a wonderful weekend of family, friends, and productivity, and am mentally and physically ready for this next surgery.  It’s go-time at 8:15am PT, with another one-night stay at the hospital.  Let the countdown begin for when I can hold my babies close to my heart once again.

My phone call from Joan Lunden

Joan Lunden called me!!  Yes, THE Joan Lunden who co-hosted Good Morning America for nearly 20 years, interviewing world leaders and covering historic events, and is now a special correspondent to the Today Show.  THE Joan Lunden who went public on GMA in June with her diagnosis of breast cancer.  THE Joan Lunden who was featured on the cover of People magazine with her bald head.  She called me on my cell last Thursday and we spoke for an hour!

Ironically, her reaching out to me was completely unrelated to the email outreach and interaction with her production team that I wrote about in an earlier blog.  Ash gets the credit for this interaction since Joan is a spokeswoman for one of his company’s portfolio companies, and his network came through to support us.  Thanks Ash and aforementioned network!

One could imagine that a conversation with Joan (yes, we’re on a first name basis now) would be intimidating given her impressive list of achievements.  The conversation, however, felt totally comfortable and natural.  I wasn’t speaking to “Joan Lunden, special correspondent to the Today Show”, I was speaking to “Joan, fellow TNBC fighter.”  We shared our diagnosis war stories, which occured in June of this year for both of us.  We empathized with each other on how stressful the “determine treatment plan” phase was – she loved my phrase “the path of least regret.”  We updated each other on where we currently stand in our journey – her receiving additional chemo and me undergoing mastectomy recovery.  She also shared some of the diet changes she has made, as well as specific food recommendations.  Joan was incredibly sweet and genuinely wanted to share learnings and offer guidance.  She even followed up our call with an email including her home phone number in case I have any questions!

One unexpected outcome of the conversation, however, was a sudden anxiety about my treatment plan.  The plan was always to do taxol+carbo and then get an MRI to see if it indicated pCR.  If it indicated residual disease, we would proceed to A+C chemo immediately, but if it did indicate pCR (which it did), we’d proceed directly to surgery.  Then, if surgery indicated positive/once-positive lymph nodes, we would proceed to/consider A+C chemo, else I’d be considered “cured” and done with treatment.  We followed the decision tree we (with our medical care team) had painstakingly determined, and it led us to a place of peace, a state of mind that had embraced being “cured”.  On the phone, however, Joan shared how she had not achieved complete pCR and was therefore pursuing A+C chemo.  During that conversation, she referenced an email from an oncologist whose view was that EVEN IF you achieve pCR, you should still get A+C chemo just in case.  Suddenly, my mind was back to its June-state.  “What is the right treatment plan?”  “Should I be getting more chemo as an insurance policy?”  “Am I pursuing the path of least regret if I don’t?”  If I had not achieved pCR, I definitely would have pursued more chemotherapy just as Joan is.  My team at Stanford all recommends stopping chemotherapy given my results, but I’m the one who has to live with the decision and its implications.  I wanted to pressure test that we were making the right decision in stopping chemotherapy now that I achieved pCR.  I wanted to revert back to my peaceful mindset.  The call with Joan then launched a follow-up outreach to all the oncologists we had consulted with in the pre-treatment phase.  We updated them on my case, my results to date, and the quandary we’re in of whether or not to pursue A+C.  I’ve said before that if you ask five oncologists their opinion, you’ll get five different answers.  We, however, from the top-notch people most familiar with my particular case, were getting all the same feedback – I do not need A+C.  Perhaps the path of least regret is the one that minimizes unnecessary toxicity.  I don’t know if this is the right decision, and I probably never will.  If I don’t have a recurrence, maybe it will be because pCR was in fact a sufficient proxy of survival, or maybe it will just be because I got lucky.  If I do have a recurrence, I’ll have to remind myself that I ultimately made an informed decision that I was comfortable with, and even some percentage of those that do A+C relapse as well.  I am back to a peaceful state of mind.  I have to be – there’s no other way to live life.

Joan, if you’re reading this, thank you for taking the time to connect with me and all the best for your fight!

The physical battle begins

Remember when I mentioned how the day of my left-side surgery, the day I became “cancer-free”, was the first day I truly felt sick?  Well, that sentiment continues.

We are all exposed to the concept of cancer and chemotherapy, and therefore, have an understanding of it.  It may not be to the point of empathy, but we expect it to be a difficult and painful time.  I am so thankful for all the support and outreach we received during those months, and the genuine relief and happiness that friends and family shared when hearing the news that the cancer is gone.  At the same time, however, I cannot help but think that the journey is nowhere close to over.  In fact, at a physical level, it feels like the struggles have just begun.

Getting diagnosed with breast cancer and figuring out a treatment plan was terrible.  Stress-inducing for sure.  Chemo was sub-optimal.  Weekly treatments, hair loss, anemia, fatigue, hot flashes, the darkening of my nail beds, the occasional dry or metallic mouth, occassional quarantines, etc.  In retrospect, my experience of it at least, felt like more of a mental battle.  There’s clearly a physical element to hair loss and fatigue, etc., but its impact on my day-to-day felt like more of a mental choice.  Am I going to let the hair loss bother me or own it?  Own it.  Am I going to succumb to the fatigue or do something productive today?  OK, I slept a lot, but many times felt like if I really needed to get something done, I could fight through the fatigue – or at least delay addressing it.  With the surgery, however, has begun a very physical battle.

With the mastectomy came a lot of cut nerve endings, weakened muscles, removed lymph nodes, and who knows what else.  My range of motion is still quite limited.  Attempts to reach out or reach up are punished with stiffness, weakness, or achiness.  My nerves are still figuring out what hit them.  There’s a tingly, prickly sensation in the bottom side of my upper left arm.  My armpit feels numb to the touch.  This morning, fortunately for just a few hours, my entire left arm up through to the shoulder blade had a heavy feeling, a limpness to it.  It was easier to pick-up my left arm and move it somewhere if needed, than use that arm’s muscle to move it itself.  This physical battle effects every part of my day.  It’s hard to get out of bed.  It’s hard to get dressed.  In a rare attempt to not wear pajama pants, I wore real pants yesterday.  It hurt to just button those pants – and it wasn’t just because of the “extra belly fat” from the pregnancy.  I can’t open a jar of honey.  Forget trying to pick up the kids.  The worst part is that the only reason I’ve maintained as much independence as I have is because I’ve been overcompensating with my right arm, my dominant arm.  The side that hasn’t yet been operated on, but will.  I can’t begin to imagine how frustrating that time will be.

With the breast reconstruction came a two-port tissue expander.  A wide, plastic device that now sits below my chest muscle.  The edge of it overstretches my skin/tissue/muscle, such that my cleavage point appears a bit off center.  That point aches pretty consistently throughout the day.  I had my first follow-up appointment with someone from the plastic surgery team yesterday.  The “one-week follow-up” that got rescheduled to 2.5 weeks after my surgery.  It was helpful to ask my many questions and get suggestions on physical therapy exercises I can begin at home.  The appointment also included my first “expansion” post surgery.  This involved the doctor using a magnet to find where the port is sitting under the skin, sticking it with lidocaine to numb the area (though my breast is numb from the dead nerves that I didn’t feel the needle or burn of the lidocaine), and then sticking it with another needle to insert saline into my tissue expander to help expand the muscle wall in advance of the implant surgery.  Ever play the game “I Never”?  Well, “I never saw my breast be inflated like a balloon.”  I’m pretty sure I’d be the only one drinking.  Sparkling apple cider of course.

Single port tissue expander (mine has two)

Single port tissue expander (mine has two)

The doctor mentioned I might feel a tightness in the chest area following the expansion.  So far so good, but that might just be because I’m too numb there to feel tightness.  These expansion appointments will be weekly for ~2 months.  After my right breast is operated on (scheduling in progress) and its reconstruction expansion catches up to my left breast, we’ll take a ~1 month break and then go into surgery again for the final implant placement.  While not “treatment” specifically, the breast reconstruction is an emotional and physical chapter of its own in this journey.

For now, I will start working on the physical therapy exercises and pray I can get much more range of motion back into my left arm before going into surgery for my right side prophylactic mastectomy and breast reconstruction.  I’m too independent and to-do list oriented to not be able to do much of anything – or have it hurt if I try.

 

Initial recovery post-mastectomy

It’s been almost two weeks since my left mastectomy and the beginning of my left breast reconstruction, and I’m happy to report that recovery is going better than expected.  This is likely nearly entirely due to the fact that I was expecting a double mastectomy, but now have been able to rely on one fully functioning arm after all.  As I said before, a blessing in disguise indeed.

Days 1-2 were the worst.  That is when I was in the hospital, groggy from anesthesia, experiencing a sore throat and dry mouth from the breathing tube and oxygen mask, and not fully understanding how to control my pain.  Fortunately, I was having no trouble drinking or eating though.  While in the OR recovery room immediately after surgery (which turned out to be for ~9 hours), nobody seemed to be managing my medication levels for me.  It was only when I called attention to my discomfort that additional pain killers were provided.  I had a lot of trouble sleeping that night in the hospital because I’d awake from muscle spasms.  After mentioning this to the nurse the next morning, I was offered additional Norco (a narcotic mixed with Tylenol) or the choice to move up to the stronger medicine Percocet.  I recalled from my c-sections that Norco was a painkiller largely meant for incision pain, but what I was experiencing was more muscular.  I mentioned to the nurse that Dr. W had referred to Valium as being a muscle relaxer, and the nurse then realized that Valium was already in my prescription orders after all.  She gave me Valium instead of Percocet and that did the trick.  Hmm…would have been nice to have been offered Valium from the get-go.  The morning of my discharge day, the nurse’s assistant was being called in to help me up from my bed to go to the bathroom while the nurse was talking about discharge timing.  So, basically, I can’t walk nor go to the bathroom by myself, but I’m supposedly in a condition to go home?

Days 3-7 were mostly spent in bed.  I alternated from sleeping due to a Valium-induced slumber to watching back-to-back episodes of The Good Wife (side note:  highly recommended TV series).  I was able to walk around, and encouraged to, but was pretty slow and gingerly about it since it still felt uncomfortable.  Not in pain, like in a sharp pain sort of way, but just uncomfortable and awkward.  You don’t realize how much of a full-body effort walking is until some major part is not carrying its weight.  I still needed help getting up and going to the bathroom, etc. in the early days (thanks Ash and Mom!), but managed to do all that on my own by mid week.  Ash’s brother and sister-in-law also helped out by taking Diya off our hands a few times so she could play with her cousins and we could have the peace that comes in a pre-schooler-free home (thanks Par & Nish!).  Day 7 is when Dr. W called with the great news about the pathology results – whoo hoo!

Day 8 was my follow-up appointment with my breast surgeon.  Dr. W was pleased with how the incision site was healing and that the breast skin (particularly the spared nipple) seemed to be surviving well.  Evidently, in some cases, the nipple dies after a nipple-sparing mastectomy and further surgery is then required to remove the areola and nipple.  Other than rejoicing the pathology results discussed the previous day, the best part of the appointment was the removal of my drain.  Since surgery, I had a tube with a bulb-shaped container at the end coming out of my body near the incision site to collect a variety of fluids that were emptying from my body post-surgery.  I only had one drain since I only had surgery on one side and only needed to have three lymph nodes removed, but more drains may have been needed had I had the double mastectomy or more nodes removed.  It’s not painful, in fact I barely felt it, but it can be annoying to have this thing hanging off of you.  Fortunately, I had this super helpful jacket with velcro sleeves and pockets for the drain that made it quite convenient to deal with it all (thanks Kathy!).  We had been told that the drain could be removed once the fluid output became less than 25mL per 24 hours for multiple days in a row, and I had achieved that.  Ash had the unfortunate task of emptying my drain on a daily basis, so we were both quite happy for that to be out.  Dr. W noticed that I was still walking quite slowly, so she adjusted my medicine schedule to include Tylenol (for the pain) and Ibuprofen (for the inflammation) as I was prefering to taper off the narcotics.  (Thanks Richa for the below PJs that I wore to this appointment!)

Post-mastectomy drain

Post-mastectomy drain

Dr. W!  (Yes, I'm wearing PJs, but I had a mastectomy so you can't judge me)

Dr. W! (Yes, I’m wearing PJs, but I had a mastectomy so you can’t judge me)

Day 9 I took my first post-surgery shower.  This was definitely a record for me.  Ok, I know the doctor’s recommendation was only to wait 3-5 days, but I was really paranoid about the drain site.  Showering with the drain in requires a lot of pampering of the drain site afterwards that seemed unnecessarily risky.  Plus, I was mostly just lying around all day long, so it’s not like I was ever working up a sweat.  Ash had been wiping me down with antibacterial sheets as well, so that helped minimize any potentially offensive smells.  Then again, maybe I just got desensitized 😛  Anyhoo, the hot water shower felt great, but I still needed help with the towel wipe down and all given restricted arm movement.

Day 10 I had my first fun outing post-surgery.  With Halloween soon approaching, we took a family outing to a local event where kids could trick-or-treat at the various stores up and down the main street.  We only stayed out a short bit so I wouldn’t get too tired, but we all got dressed up (and by “all” I guess Ash was dressed up as a Giants fan) and had a great time.  Ash’s brother and sister-in-law also hosted us all for a great Diwali puja at their place that evening, and it was nice to catch up with friends there.  I felt energized while chatting with everyone, but quite happy to crawl into bed when I finally got home.

2014 Halloween Street Festival

2014 Halloween Street Festival

Day 11 was my follow-up appointment with my oncologist.  That was my first time seeing, or even talking, to Dr. T since the pathology results became available, so we shared in our excitement about the tumor disappearing.  She reminded me that of all TNBC patients, only ~1/3 achieve pCR.  Of all patients that achieve pCR (across TNBC and other sub-types), ~95% go on to have excellent long-term survival.  Those are percentages to be excited about.  She confirmed that no further chemotherapy and no radiation would be recommended at this point given their risks/side effects outweigh their potential benefit. <insert victory dance>.  There’s a possibility I take the hormonal therapy drug Tamoxifen for a few years on a daily basis going forward, but we agreed to discuss and decide on that after all the surgery recovery is done.  Will keep you posted.

Dr. T! (Yes, that's the hat I knitted myself)

Dr. T! (Yes, that’s the hat I knitted myself)

Day 12 I had an unexpected freak-out.  I had felt fine the first half of yesterday, but in the midst of writing this blog post, passed out at the laptop.  I awoke at some point, pushed the computer away, and kept sleeping.  This wasn’t “oh-I’ve-watched-a-lot-of-TV-so-I-should-nap” sleep, this was like the type of hit-by-a-truck fatigue I felt during chemo weeks.  When Ash came home from work that evening, I felt like something was wrong.  I could barely keep my eyes open or move.  Not in pain, just oh-so tired.  A bit later, I sat up to drink water and stay awake, and literally out of nowhere, I started crying.  Like uncontrollable crying.  Again, I was not in any pain and had no explanation for my crying.  The family, naturally, was very concerned and Ash and my Dad rushed to Costco to get a blood pressure monitor.  Turns out my blood pressure was lower than usual, so we’re keeping an eye on that now.  There’s still no explanation for the intense crying – WebMD indicates depression or anxiety – but I really wasn’t feeling any of that.

It was just a few days ago that I was telling Ash how it was odd that I never cried after hearing the news that I was now “cancer-free”.  Perhaps it was because my mind had not only expected that all along, but there was also gradual build-up to those results from the clinical results to the clean MRI.  That said, perhaps my soul was only now catching up to the news.  Perhaps my “being” was only now absorbing the magnitude of what it has been through and what it means to have overcome it.  Perhaps crying was the only way it knew how to express itself.

Today was a closer return to normalcy.  By normalcy I mean a very newly defined version of normalcy.  I still don’t have anywhere close to full range of motion of my left arm, and I still live in fear of Diya pouncing on that area at any point, but I’m more comfortable putting it to use.  My blood pressure was relatively higher than yesterday, and I felt more energized, wanting to be productive around the house today.  The discomfort remains – specifically, I think it’s the pain of the tissue expanders pushing against my muscle and skin – but that might just be my new normal for a few months.  My follow-up with my plastic surgeon got pushed to next week, so I’ll get more clarity on those concerns and beginning physical therapy at that time.

The saga continues, but I promise to continue to take you along 🙂