Archive | November 2014

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.