Archive | October 2014

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 🙂

Diwali – a perfect day to win the war

Today is Diwali, the “festival of lights.”  It is an ancient festival that “signifies the victory of light over darkness, knowledge over ignorance, good over evil, and hope over despair” (thanks Wikipedia).  We lit up our homes with diyas, candles, lamps, etc. to honor this victory.  As this day is also considered the beginning of a new year, a new chapter in our lives, it includes a puja or prayer ceremony.  We prayed to Lord Ganeshji, the remover of obstacles and the god of new beginnings, and to Goddess Lakshmi for love and prosperity.

2014 Diwali Puja

Our Diwali Puja – October 2014

These past few months have been an ongoing battle against darkness, ignorance, evil, and despair.  The darkness that overshadowed our lives when we first received the diagnosis.  The ignorance we realized was in our minds when we didn’t know where to begin, what questions to ask, what treatments to pursue.  The evil we wished upon every cancer-carrying cell in my body.  The despair that filled our hearts when we realized the lymph nodes may be positive after all.

Each step of the way, we have strived to not be undermined by negativity.  When darkness fell upon us, we found light in the smiles and laughter of our daughters.  When our ignorance became obvious, we gained knowledge through research, consults, tests, and more.  The evil, well, we continued to wish the worst upon the cancer throughout chemo and surgery.  But hey, nobody’s perfect.  In those fleeting moments of despair, we always turned to hope.  We always believed everything would work itself out, and all we needed to do was wait.

It turned out that today, on Diwali itself, the waiting is over.  Positivity triumphed over negativity.  My breast surgeon, Dr. W, called me directly to let me know she has “fantastic news.”  The final pathology results were in earlier than expected.  I am now truly, officially cancer-free!  The invasive tumor cells were completely gone, meaning I achieved a pCR (i.e., pathological complete response to the chemo).  Just as importantly, it’s now been confirmed that the lymph nodes are negative, and in fact, always were.  So, the risk of cancer cells having spread elsewhere is minimal, and even if they did, the pCR is a good proxy that the chemo would have killed them off anyways.  No more chemotherapy, no radiation required.  In layman terms, I can be considered “cured.”

Just like Diwali marks a new chapter in our lives, today marks the beginning of a new chapter in my life journey.  The diagnostic phase is over, and technically, even the treatment phase has come to an end.  We are now in recovery phase, and eventually prevention phase, and I have no doubt that with all your ongoing love and support, we will collectively be triumphant over those as well.

Happy Diwali to all!

Battles continue, but winning the war

When I awoke in the recovery room, I didn’t realize the operation was over.  I wondered why we hadn’t started yet.  I had no recollection of anything that happened after Ash said good-bye to me in the admitting area.  No memory of the oxygen mask, no memory of the operating room, no memory of the Grey’s Anatomy-esque drama.  When I was told the operation had been completed, I realized I had a bandaged chest and a very dry mouth to confirm it.  I could barely think, barely speak.  The anesthesia and painkillers made me really groggy and the sore throat and dry mouth from the oxygen mask and breathing tube made it hard to talk.  I had no energy to project my voice.

Ash was allowed to come to my side once they realized I was awake.  He had been so stressed.  Going into the surgery, the breast surgeon had told him she would come out in ~1hr to give him an update on how her part (i.e., the mastectomy) went, before the plastic surgeon took over for the reconstruction.  An hour came and went, another half hour came and went, and then another half hour.  Had something gone unexpectedly wrong?  Dr. W finally came out and had let Ash know that the mastectomy went well, but due to the bleeding from the low platelet count, she needed to operate very slowly, suturing along the way.  I had required one platelet transfusion and one blood transfusion during surgery.  From a cancer perspective, everything had looked good, the lymph nodes had looked normal, but we would know more soon when the initial pathology comes back.

The reconstruction surgery finished ~12:15pm, and I awoke at ~2:30pm.  We expected to be moved to a room soon after so that my family that had been waiting in the waiting area for hours could come see me.  The nurses had no clue when a bed would be available, but they were hypothesizing 6pm.  In the meantime, the post-surgery blood draw had indicated that my red blood cell counts were still extremely low.  So, I was given another blood transfusion while in the recovery room itself.  It didn’t hurt, just flowed through an IV, but took 3-4 hours to finish.  Pain from the operation was starting to increase again though, so the nurses fed me some more painkillers through the IV.  I hadn’t eaten for hours, so Ash spoon fed me food my mom and sister had brought from home.  The nurses all thought we were very cute together.

Then, Dr. W returned to visit me in the recovery room – the initial pathology results were back and as best as we could hope for.  The tumor appeared gone and my lymph nodes were negative – I am “officially cancer-free!”  That pathology result is 97% accurate, but the final final results will take 7-10 days and will indicate whether the lymph nodes were ever positive to begin with.  Until then, it appears that we are winning the war.  I knew this was wonderful news, but a smile was all I could muster to express my excitement.

My parents, sister, and brother-in-law were allowed in for a short period of time to visit me in the recovery room.  They didn’t even recognize me at first.  With all the transfusions and the saline fluids flowing through my IVs, my whole body was swollen, my face especially.  I saw the latter firsthand when I got up to go to the bathroom in the recovery room (with much help from Ash and a nurse).  I glanced at the bathroom mirror and saw a cantaloupe with eyes looking back at me.  Oddly, the day I became “cancer-free” was the first day I truly looked and felt sick.

It was 9pm before I was finally moved into a room.  Visiting hours were long over, and my niece had to be taken out of the hospital kicking and screaming since after patiently waiting for 6+ hours, she wasn’t allowed to see me in the recovery room.  The upside was that we got the one decent private room on the whole floor, so Ash was able to stay comfortably with me overnight.  It was only when we got settled into that room did a nurse come to empty my drain and check out my incision.  It was the first time that I was seeing my chest with the bandages removed.  I didn’t know what to expect, but I can best describe it as a deflated balloon.  The outer skin of the breast is all there (they were able to proceed with a nipple-sparing mastectomy as planned), but is very collapsed looking.  The tissue expander is in there, but with only very little saline so far.  More will be put in during my one-week follow-up visit, and it will start filling up like a regular breast again.  Yes, I will be a bit lopsided for awhile.

I will continue to fight the battles – recover from this surgery, undergo an entirely other surgery for the right side, pray the lymph nodes were always negative to begin with, and more – but today was a huge victory.  In my personal life story, today I am winning the war against cancer.

Finally in a private room post surgery

Finally in a private room post surgery

 

A blessing in disguise

I felt refreshed the morning of surgery.  We left home at 5am and reached Stanford right on time for check-in.  We hadn’t heard from the doctors last night about the results of the blood draws, but everything seemed to be proceeding as planned.   I was called into the back to change my clothes as Ash was asked to wait in the operating room.  A visiting doctor came by to ask if I’d like to take part in a study where they were testing the use of heat packs on the back of the knees and bottom of the feet to keep patients warmer in the operating room, and thus, less uncomfortable during recovery.  As has been well established in this blog, my Snuggie-loving self said “Yes!” with little hesitation.  Someone from anesthesia came to see if I had any questions after my visit to the pre-anesthesia clinic yesterday, and I inquired about the availability of my blood type at the blood bank in case there was a need for a transfusion.  They said they would look into it.  I was even joking with the staff.  When the doctor running the heat pack study came by to check in on how warm I was feeling, I mentioned still slightly cold, but that’s possibly due to the draft on my head.  Get it – bald head.  <insert laughter>.  It seemed like everything was going smoothly.

Then my breast surgeon, Dr. W, came by.  The blood draw results were in.  Not only were my red blood counts still very low (i.e., still very anemic), but even though my last chemo infusion was Sept 22, my platelet counts had actually fallen significantly.  They were now down to ~50, and as you may remember, chemo is denied when platelets are below 100.  My bone marrow was still suffering from the wrath of chemo and would take up to a couple of months to recover.  My mind was racing – “Oh my god, are we going to have to reschedule the surgery??”

Apparently, the doctors had been discussing options all morning.  Anesthesiologists would cancel any surgery when the platelets are that low due to the bleeding risks.  My oncologist, however, said removing the tumor bed in the left breast was non-negotiable.  It had already been 4 weeks since chemo ended and this cancer was too aggressive to keep inside.  They had reached a compromise.  The proposal was to proceed with today’s surgery, but only with a mastectomy and reconstruction on the left breast.  The prophylactic mastectomy and reconstructive surgery of the right breast would be postponed until my counts recovered.

My mind filled with questions as I fought back tears.  It never occured to me that this might happen.

What are the risks with moving forward as originally planned?  The bleeding would be too significant and we might actually lose the skin of the right breast (the “elective” one).

What are the bleeding risks involved with proceeding with the surgery on even just the left side?  I will definitely need platelet and blood transfusions during surgery.

How long will I need to wait to do the second surgery for the right side?  Probably 4-6 weeks depending on how quickly my counts bounce back and my body recovers from this surgery.

How does this impact the end result of the reconstruction since one of the benefits of double mastectomy is that the plastic surgeon can more easily match the two outcomes?  The aesthetic matching is done when the final implants are placed, and that surgery can still be coordinated for both the left and right breasts to be done together.

How does this impact my recovery time?  Will it be another 4-6 weeks of recovery following the surgery of the right breast?  It will not be 2x the recovery time of a double mastectomy and reconstruction, but more like a slower ramp of recovery.  So, it might be longer, but possibly not as painful or difficult since I’ll now have one fully functioning arm post surgery.

What are the downsides or risks associated with moving forward with only one side today?  Just that another operation will be required for the right side.  This approach is actually safer though.

Things were not proceeding as expected, but perhaps it was all a blessing in disguise.  Not being fully dependent on others in early recovery by having a functioning arm sounded pretty appealing.  Like Dr. W said, the goal for now is to keep our eye on the prize.  The MRI appeared clean, but how accurate was it?  Are the lymph nodes negative?  Will I be considered “cancer-free” followng this surgery?  It was time to find out.

Going into surgery!

Going into surgery – just a left mastectomy and reconstruction for now!

T-1 to surgery

Tomorrow is the big day.  I know there have been many “big days” on this journey, and more yet to come, but tomorrow really ranks high up there.  A 5am start for a 5 hour surgery that will leave me forever changed.

This morning started off so well.  Diya wanted to cuddle with me when she first woke up and I spooned her until she complained “too tight!”  After all, it will be quite awhile before I can do that again.  I enjoyed eating breakfast with my parents and then finally got to packing my overnight bag for the hospital.  Strangely, there was more thinking involved in what to pack for one night at the hospital following a double mastectomy / reconstruction versus four nights at the hospital following a c-section.  The most indulgent part of my morning was the long, detoxifying body wrap and massage I got at the spa (thanks Seema!).  I felt so pampered, so peaceful, so prepared to take on the day.

It turns out I needed all the preparation I could get.  I had a short window between me returning home and needing to head back out with Ash to Stanford.  In that very small span of time, I came home to discover that Diya wasn’t eating well and, in fact, had a 103 degree fever.  Awesome.  I mean, of course, that would happen today of all days.

We then rushed off to Stanford for a variety of pre-op appointments.  First, the pre-anesthesia clinic.  The nurse described the sequence of events I should expect leading up to the surgery, and that was the first time it started hitting me how scary this might seem.  I realized I was never “out” during my c-sections; never went through the process of needing an oxygen mask and breathing support and the other drama we see on Grey’s Anatomy.  Fortunately, one of the anesthesia’s side effects is some memory loss, so I may not remember all that.  Second, we went to Nuclear Medicine Imaging.  It was not until I was there that I realized I had no idea what to expect of these appointments.  It turns out that appointment was preparation for the lymph node biopsy of my left side.  By “preparation”, I mean it involved getting four injections around my left breast areola of an agent that would migrate to wherever the sentinel node(s) are.  I had no idea that was going to be happening.  I then laid down on a CT-esque machine that took pictures of the agent’s migration.  Overall, a strange but relatively painless procedure.  The last of the pre-op to-dos was the most frustrating.  Blood draws.  I know I’ve had trouble during chemo with my veins, but I was really hoping they were better now.  Maybe they were, but the hospital was so ridiculously cold, that my veins contracted in to cuddle with my bones.  It took 7, yes SEVEN, pokes to get all the necessary blood for my labs.  It was incredibly frustrating having multiple nurses making their own attempts, trying different tricks with heat packs and gloves, using a “vein finder” device, only to have so many attempts fail.  These labs are to (1) confirm that my white blood cell, platelet, etc. counts are high enough for me to proceed with surgery and (2) confirm my blood type for the hospital in case a mid-surgery blood transfusion is needed.  Given the time, we’ll probably only get the results tomorrow, but we’re working under the assumption that the blood draws will give me a green-light for surgery.

We finally made it home after 5+ hours.  After some family time and dinner, I took what might be my last shower for 5 days.  Yes, I confess, I’ve always thought showering is a bit over-rated.  The occasional skipped shower (especially in college when sleep was scarce) was not a big deal in my mind.  But FIVE DAYS?  That’s a record even for me.  My readings indicate that as the recommendation post surgery because of all the incisions and drains and whatnot though.  The doctors had given me a special anti-bacterial soap that I was to use in my shower(s) before surgery to scrub off all germs and minimize risk of infection during the operation.  Standing under the hot water, I washed away the soap, the germs, and the stresses of the day.

Tomorrow is a new day.  Let’s do this.

 

 

Surgery date is set – and soon!

My doctor had always said that she wants me to go into surgery within 3-4 weeks of me finishing chemo, so to not give the cancer a chance to start growing back (it’s usually 4-6 weeks, but a shorter timeframe for my more aggressive sub-type).  Since the last chemo date was expected to be September 29, I always expected surgery to be in the last couple of weeks in October.  Then, when chemo got put on hold a couple of times, I thought maybe it won’t be until early November.  That’s what I was mentally prepared for.  When my chemo unexpectedly finished two treatments early after we got the MRI results though, September 22 became my last chemo date.  It hadn’t occured to me that 3-4 weeks out from that would mean a target date of mid-October.  So, when Stanford recently called me to let me know my surgery is scheduled for Friday, October 17 (yes, next Friday!), I was a bit stunned.  In fact, I suddently felt a little scared.  It was coming up much sooner than I expected, sooner than I was mentally and logistically prepared for.

Immediately began a preparation frenzy.  My parents booked their flights to come stay with me.  Ash rearranged work meetings and travel plans.  I was on the phone with Stanford scheduling a number of pre-op and post-op appointments.  I even suddenly felt the need to empty out my bedside table drawers and organize them with things needed for post-op (e.g., special small pillows, books, etc.).  I still need to go through my closet and see what clothes I’ll even be able to wear since I won’t be able to lift my arms more than 45 degrees for 2 weeks.  As far as mental prep goes, I don’t think you can ever be fully mentally prepared.  You just wait for it to be over.

I shared some 3rd-date level material about my childhood in a previous post, but now we’re about to get very intimate.  I always planned to be open and honest about every step of this journey, and that includes the double mastectomy and reconstruction.  There won’t be before and after pictures (aawwwkkkwaarrd), but I’ll try to be as informational as possible.

There are two parts to my surgery:  (1) the double mastectomy and (2) the beginning of reconstruction.  Let me answer a few questions you may have:

  1. Why do you need surgery if the MRI is “clean”?:  While imagery is a helpful proxy for a cancer’s response to chemo, only pathology is definitive.  So, the tumor bed still needs to be removed ASAP so that the tissue can be sampled to confirm that the cancer is in fact gone, and in case the tumor is not gone, you remove it from the body before it has a chance to grow back.
  2. Can’t you just get a lumpectomy instead?:  Many early stage cancer patients are able to get just a lumpectomy, where only the lump or tumor bed is cut out.  That is a simpler, outpatient procedure with fewer physical and psychological side effects.  I, however, will be getting a double mastectomy for two key reasons:  (1) triple negative breast cancers are particularly aggressive and they have a higher recurrence rate than other BC types, and (2) as a young BRCA1+ carrier, my risk of developing an entirely new second breast cancer is ~80%.  That risk level falls to negligible by having a double mastectomy.
  3. What happens in a double mastectomy?:  Essentially, both breasts are removed.  As my breast surgeon so graphically put it, she’ll be “hollowing me out like a pumpkin.”  Specifically, all the breast tissue and everything that creates the “mound” of a breast (up to the clavicle) will be removed.  No chest muscle will be removed.  There will be no nerve endings remaining.  What the breast looks like externally varies by the type of procedure required:
    1. Skin-sparing:  The skin or envelope of the breast is generally saved unless there’s reason to believe the cancer has spread to the skin.  In this procedure, the areola and nipple are also removed in surgery.  A replacement nipple can either be created by bunching up the skin, or a 3D nipple can be tattooed on (it looks like you have a nipple by viewing it, but it’s flat to the touch).  The areola is tattooed on.  The scar extends right across the middle of the breast and is quite visible.
    2. Nipple-sparing:  In this procedure, the original areola and nipple are also saved.  The incision can, therefore, be in the bottom outside crease of the breast and is barely visible at frontal view.  This option is possible when the tumor is/was sufficiently far enough away from the areola and nipple that there’s no cancer present there.  Some doctors are hesitant to do this procedure because they worry if any breast tissue is inadvertently left behind, then the cancer could still return or grow there.  Given the location of my original tumor and her confidence in removing all the breast tissue, my breast surgeon is comfortable proceeding with this option for me.  She will, however, biopsy a tissue shaving of the inner nipple at the time of surgery to confirm that she can proceed with this procedure.  The pathology test results of the breast mound specimen takes ~7-10 days.  If the margins on that mound are still positive, then the nipple will need to be removed in a follow-on surgery.
  4. What about the lymph nodes?:  As you may remember, there was some confusion in the diagnostic phase of whether my left lymph nodes are positive or not.  We believe they are negative based on the fine needle aspiration biopsy, but that can only be confirmed in surgery.  The breast surgeon will conduct a sentinel node biopsy at the time of surgery.  The sentinel nodes are the nodes deemed to be the first node(s) the cancer would have been likely to spread to based on its location.  It is a misnomer to call it a “biopsy” since actually the sentinel node(s) are entirely removed, cut in half, and sent for testing.  The results come back during the surgery itself.  If the ~3 nodes that are sampled are negative, then the lymph nodes are deemed to be cancer-free.  If they are positive, the surgeon conducts a lymph node dissection, where she removes ~10 more lymph nodes.
  5. What does reconstruction involve?:  Some people may choose to not get breast reconstruction after a mastectomy.  Given my age, the doctors didn’t give me an option, but I would have wanted it anyways.  There’s enough drama to deal with as a breast cancer patient and survivor, why add more potential body image issues to the list?  I will be pursuing a tissue expander + implant route, but there are three total options for reconstruction:
    1. Tissue Expander + Implant:  Normally, the inner mound of a breast is protected by breast tissue under the skin.  All my breast tissue will be removed though, and we don’t want the implant sitting right under the skin as that is too little protection.  So, my chest muscle will be leveraged to serve as that new protective barrier.  In the same surgery after the mastectomy, a plastic surgeon will come in and place temporary tissue expanders under my chest muscle.  Starting at the time of surgery, and then about every 2 weeks as an outpatient procedure, saline will be injected into these expanders to help them, well, expand.  More specifically, to help the chest muscle expand.  Once the expansion is to the desired cup size, a follow-on outpatient surgery is conducted a few months down the road to swap out the tissue expander with the final silicone implant.  The initial reconstruction surgery takes ~1.5 hours per breast and requires one overnight stay at the hospital.  The full recovery time is ~4-6 weeks.
    2. Flap (own tissue):  For those with enough extra body fat in their belly, butt, or back, the reconstruction can be conducted using the patients own tissue flap instead of an implant.  The patient is essentially getting a tummy tuck, but instead of that fat and tissue being thrown out, it is instead put into the breast skin.  This procedure has a lower risk of infection since it is not a prosthetic, has a more natural look and feel, and can all be completed in one surgery.  However, this option is more invasive as you now have two incision sites, a belly tissue flap results in a scar extending from one side to the other of the abdomen, the surgery is ~5 hours per breast, the hospital stay time is ~4-5 days, and the full recovery time is ~6-8 weeks.
    3. Implant + Flap:  Involves both a flap operation and an implant operation, so falls in the middle of the above two options in terms of surgery and recovery time.
  6. How long will the surgery be?:  I will check in at the hospital at 5:15am and my surgery will start at 7:15am.  The double mastectomy is expected to take ~2 hours, and the reconstruction ~3 hours.
  7. How long will your recovery be?:  I will need to stay at the hospital for 1-2 days, but can then return home.  I will not be able to raise my arms more than 45 degrees for the first two weeks, and not be able to lift anything (including my kids) for a month.  After two weeks, I can start physical therapy exercises to regain my range of motion.  Full recovery time is ~6 weeks.
  8. What will recovery be like?:  Painful at first.  I’ll be on some heavy medication, and have heard it will be hard for me to even get out of bed to go to the bathroom, etc.  I’ll have a drain hanging off of each boob to collect whatever gross stuff drains out post-op that will need to be collected and measured multiple times a day.  By week two it might be more inconvenient and frustrating than painful since I won’t be able to lift up my arms enough to even put on a t-shirt, put something in the microwave, or grab a plate from the kitchen cabinets.  Hopefully I’ll be feeling much better after the first month, but will keep you posted.
  9. What kind of post-op treatment will you need?:  If the surgery indicates that pCR has been achieved (the tumor is entirely gone) and that the lymph nodes were always negative, then I’ll essentially be considered “cured” with no further treatment required.  If pCR is achieved, but the lymph nodes were once positive (the surgeon can identify where dead cancer cells are), then I’ll still be considered “cured” but further treatment might be considered to minimize risk of recurrence.  If pCR has not been achieved, then I will definitely need to proceed with two months of more toxic chemo and the prognosis will depend on the type/level of the tumor.
  10. What kind of post-op screening will you need?:  Going forward, I will need no mammograms, but will get MRIs every ~3-5 years (will be determined post implant surgery).  The risk of recurrence for TNBCs is higher than average for the first five years, but then falls to negligible after 5 years.  So, the next 5 years will still be critical.

Do let me know if you have any other questions and I will try to address them in future posts!

 

Has anybody seen my eyebrows?

I’ve worn eyeliner since I was born.  Ok, so that might be a slight stretch, but really only a slight one.  Per my baby photo below, I was wearing kohl at an incredibly young age to ward off the “evil eye”.

Pretty cute, right? ;-)

Pretty cute, right? 😉

I’ve always said that I “feel naked” without eyeliner, thinking that that is what pulled together the look of my eyes.  I never thought I’d have a comparison point though either.  Turns out that eyebrows are a key ingredient as well.  As you can see below, my eyebrows have not only tremendously thinned out, but have also fully fallen out in certain areas.  I’ve been advised to draw them in, but I worry that whatever hairs are remaining will then fall out from the friction as well.  I had heard that chemo can cause all your hair to fall out (facial hair as well), but I wondered if maybe I just got lucky when they were still intact through my 10th chemo (i.e., which turned out to be potentially my last one).  That last chemo was apparently a tipping point though as my eyebrows (and lower eyelashes) took a sudden turn for the worse.  It’ll be a couple of months before my hair starts to grow back, but at least we know it will!  #it’sjusthair

Pre-chemo eyebrows

Pre-chemo eyes

Post-chemo eyebrows

Post-chemo eyes

The MRI results are in

Dancing is my escape.  I’ve loved it since my parents put me in lessons at the age of 3.  It was how I connected to my culture throughout childhood.  It was how I kept my sanity throughout college.  It was how I “fit in” at parties throughout adulthood in lieu of drinking alcohol.  (I figure if I’m willing to dance on a table sober, I don’t need to drink)

I got to dance for the first time in a long time this past weekend.  Between the chaos of the last few months, and then the pregnancy before that, opportunities have been slim.  We went to a friend’s Diwali party on Saturday night – just Ash and me without the kids.  Lately, I’m usually crawling into bed at 8:30pm after putting the girls to sleep, so putting make-up on to go out instead was unreal.  I didn’t know how late I’d be able to stay up, but I refused to leave without dancing at least a little bit.  It was starting to get late, I was starting to get tired, and the dancing hadn’t yet begun.  So, I took matters into my own hands.  My friend Vanita and I started up the dance floor, just busting moves to whatever bhangra song was on at the time.  As the songs switched between bhangra and Bollywood music, I was so re-energized.  I forgot the fatigue.  I forgot the cancer.  I forgot I was waiting for the MRI results.  Of course, every 5 minutes the anemia would kick in and I’d remember again as I paused to catch my breath, but it was always worth it.

Dressed up for (early) Diwali

Dressed up for (early) Diwali

We went to see the doctor today for my MRI results.  It was strange – I wasn’t as nervous as you’d expect. I didn’t have the knot in my stomach I had when about to push the submit button to see my GMAT score or click the online link to see whether I got accepted to business school.  At some level, I had more faith and certainty in the outcome of my cancer’s MRI results.  Like I said in the beginning, it has to be OK.

Sure enough, the RN came smiling into the room with a proud “The MRI is CLEAN!!!”  SWEEEEEEET.  If there had been any doubt, it washed away with a sigh of relief.  What this means is that there is no longer any evidence of the tumor in the imagery.  Dr. T explained that this is actually uncommon, that radiologists are generally very conservative and will report back the existence of “suspicious activity” for any brightly lit areas on the MRI.  While those could mean the tumor is still there, they could also just turn out to be scar tissue from dead cancer cells.  So, for the radiologist to indicate “no evidence of invasive malignancy” from the MRI, he/she must really not see anything.  Dr. T showed us the MRI imagery, but fortunately, there wasn’t much to look at.  She pointed out the dark spot that’s an air pocket around the marker that had been placed at the tumor site during my core biopsy back in June, and how there were no areas of brighter imaging near there versus the rest of the breast.  To be clear, we won’t know if the cancer is completely gone (i.e., pCR or pathological complete response) for sure until surgery when they run pathology on the breast tissue itself, but the imagery is the best proxy we have.

The news didn’t just end there though.  As of this morning, I was planned to have two more taxol infusions to complete my treatment before surgery.  This morning’s blood draw, however, revealed that my platelet count is once again very low.  So low that I wouldn’t be able to get chemo today.  We joked that maybe I shouldn’t have been dancing on Saturday night after all, but it turns out that that actually helped my counts recover.  The physical activity really gets the bone marrow working.  Rather than putting me on hold this week, completing the remaining two infusions, and then going into surgery in late November, however, Dr. T recommended that we stop chemotherapy altogether at this point and go straight to surgery in 2-3 weeks!  The primary reasons were:  (1) the MRI results can’t get any better at this point, (2) carboplatin was always the key drug for my tumor anyways and we completed all four planned treatments of that, (3) taxol is generally given in a “dose dense” approach – once every two weeks resulting in 700 units of cumulative medicine; my weekly treatments of taxol are considered more “dose intense” and I’ve already received 800 units of cumulative medicine over the course of the 10 weeks that I received chemo, (4) my body is starting to give out from all the back to back weeks of toxic drugs, so the issue with platelet counts could be a recurring issue, and (5) my last chemo was already 2 weeks ago and we don’t want to wait too long for surgery with such an aggressive cancer type.  Wait what – I’m done with chemo (at least for now)???  Unlike the MRI results, this was such unexpected good news, that I started crying.  For the first time in a long time, I cried out of happiness.

Clean MRI!!!

Clean MRI and no more chemo (at least for now)!!!

So, I did not need to get chemo today and Ash and I were able to enjoy a leisurely hot chocolate break with friends instead.  We now wait for the schedulers to get back to me on surgery date, targeting the last two weeks of October.  There’s still a long journey ahead with the double mastectomy, breast reconstruction, and the pathology report that will indicate whether I need two more months of a more toxic chemo after surgery or whether I have indeed achieved pCR and can focus on living a healthy lifestyle.  It could be many months or even longer before my energy levels and clarity of thought go back to normal.  In the meantime, I will take it one day at a time and wait for my body to sufficiently recover in prep for surgery.  I will stay active to keep my blood circulating and my bone marrow in full gear.  I will dance.

Celebrating with Nedda & Pouyan

Celebrating with Nedda & Pouyan

 

Happy Breast Cancer Awareness Month

I spent a good portion of my morning watching Joan Lunden kick off Breast Cancer Awareness Month on the Today Show, and then go on to be interviewed by a number of other talk and news shows.  I was struck by a number of observations:

  • We both have a lot of similarities in our fight:  both diagnosed in June; both have triple negative BC; both being treated with the 12-week plan of taxol+carboplatin; both have a child whose birthmark somehow influenced how we behaved in this battle; both responded to the diagnosis with a warrior mentality of “what do I need to do to beat this”.  Unfortunately, she just had a lumpectomy and found out she did NOT achieve a pathological complete response (pCR), meaning the tumor did not completely go away from the chemo.  Let’s hope the similarities stop there.
  • She too has been surprised by the level of art vs. science in the treatment process:  I mentioned during the diagnostic phase how surprised I was by how if you ask three different doctors their opinion on treatment approach, you’ll get three different responses.  Throughout the treatment phase, I’ve continued to be surprised by how many times my opinion was asked despite me not having a medical degree.  Given that Joan did not achieve pCR, she must decide whether to proceed with a new round of chemo, with radiation, or something else.  We would all expect the doctors to have a view here on next steps, but she’s being asked her opinion since we don’t really know if there is one right answer.
  • There has been little mention of BRCA:  Following Angelina Jolie’s announcement last year, I would have expected a discussion on the BRCA gene to be at the forefront of the conversations.  An audience member in one show did ask Joan her thoughts on genetic testing, to which she responded that she did get tested and is not a BRCA carrier, but I haven’t heard many of the talk/news show hosts mentioning it.  It’s surprising that she has the aggressive triple negative breast cancer since it’s mostly predominant among BRCA carriers.  Wishing Joan the best!
  • She always wears a wig:  I found this interesting since a primary reason she’s in the limelight right now is due to appearing bald on the cover of People.  According to her though, she wears a wig at all times, even in the house.  So much so that she doesn’t think her kids had seen her bald prior to the photograph.  She said she got over the insecurity of being bald for a photographer two feet in front of her, but not so much that she’d walk down 5th Avenue that way.  Hmm…I just never felt that way.

In honor of Breast Cancer Awareness Month, I’d like to reiterate the importance of self exams. Here’s an entertaining video reminder from Nestle Fitness to check out your boobs since everyone else is!