Made it to NY, Surgery Postponed

Mini celebration on the plane – NYC bound!!

Emily and I [Miles] landed safely into New York this past Wednesday.  Upon arriving at the Courtyard Marriott in the Upper East Side, we were welcomed by Emily’s parents, Shelley and Kevin.

On Thursday, Emily and her family posse walked to Mount Sinai Hospital and met with Dr. Raja Flores.  After numerous phone consultations, it was the first time Emily had met her surgeon in person.  He was simply amazing.  He exuded honesty, confidence, empathy, and inspiration.  When he left the room, Emily beamed and said, “I feel so blessed to have him as my doctor.”

Lots of tests

Over the past two days, Emily has had blood work, an EKG, an ECHO, a lower extremity blood clot test, and multiple meetings with anesthesiologists, surgeons, etc.

However, Dr. Raja Flores did alter the plans slightly.  While reviewing her past scans and tests, he noticed that her pleural lining (the membrane that surrounds the outside of the lung – like the ozone for Earth) was never actually biopsied and tested for cancer.  Rather, it was assumed to be malignant after it illuminated on the PET scan.  In most cases, this is an accurate assumption; however, Emily’s response to the chemotherapy treatment has been simply remarkable.  No cancer is now shown in the pleural lining.  Dr. Flores believes that her response might be too remarkable and perhaps there never was cancer in the lining.  Maybe it was just fluid/inflammation that was lighting up the PET scan; maybe she was over-diagnosed.  So before he opens Emily up and removes her entire right lung and lining with it, he has scheduled a biopsy of the pleural lining.

In all likelihood, the lining will come back positive and we will proceed with the same surgery as planned.  But if the tests come back negative, the surgery will be dramatically reduced to a lobectomy where only one or two lobes of the right lung are removed.

What this means:  

The intense, significant surgery has been postponed a week. 

Emily is scheduled to have a VATS pleural lung biopsy this coming Monday (February 4th) at Mount Sinai at 7am EST.  This is not a typical, easy biopsy, as she will be under anesthesia.  Dr. Flores will insert a camera into her chest and visually inspect the lining of her lung as well as take several samples for testing. Emily will be in the hospital overnight for recovery.  Several days later, once testing is complete, Dr. Raja Flores will finalize the type of surgery required.  That surgery will take place the following Monday, February 11th.

Emily with Phyllis and Michael Epner. Phyllis blazed a path that Emily is excited to follow.

Following our meeting with Dr. Raja Flores, Emily was able to meet a former lung cancer patient, Phyllis Epner, who was traveling from Arizona to meet with Dr. Raja Flores for an annual check-up.  Eight years ago at age 67, Phyllis underwent a complete removal of the right lung, right pleural lining, lymph nodes, and five ribs.  Today, she is vibrant, energetic, and oh yeah, CURED.  Upon meeting Emily, Phyllis hugged her and said, “I know exactly where you are and what you are going through.”  She then grabbed Emily and stared at her in the face and continued, “You are going to beat this and be cured just like me.”  For more than an hour, Phyllis and her husband, Michael, prepared us for the upcoming surgery and provided many tips and suggestions.  As a caretaker, I found it invaluable.  As a patient, Emily found incredible inspiration in her story.

Bennetts in NYCAs for this weekend, Kevin, Shelley, Emily, and I will explore the new neighborhood and rest up for Monday.  Kindly, New York has greeted our visit with a cold front that even has the former Idahoans’ teeth chattering.  Yet, Emily continues to bundle up and bear it for her daily multi-mile walks.

I hope everyone enjoys the Super Bowl.  Here’s to Alicia Keys singing the National Anthem in less than 2 minutes and 15 seconds (I love prop bets) and to some awesome commercials!

Love to all.  Live in the moment.

Miles and Emily

A-M-A-Z-I-N-G News

After six months of treatment and seven rounds of chemotherapy, Emily had a PET scan on December 31st.  A PET scan examines the entire body (eyes to thighs) for “activity” uptake on a scale of 1-10, and thereby highlights the location of cancer in the body.  Emily’s last PET scan was in July prior to any treatment.  The test revealed a lung that “lit up like a Christmas tree.”  Emily’s tumor measured in at an 11 (one of the few times extra credit is not a good thing).  Meanwhile, her lymph nodes and pleural lining both had levels of 7.5.

After Emily’s most recent meeting with her oncologist, a new PET scan was ordered in order to examine the possibility of surgery.  The test would need to show cancer only in the tumor though, with no signs of activity in the pleural lining or lymph nodes.

On January 2nd, during Emily’s daily four mile walk (which she has been doing in preparation for potential surgery) we received a phone call from City of Hope.  The results were in – Emily’s pleural lining and lymph nodes both had activity levels of 0.  The tumor now had a level of just 1.9.

PET 7.9.12                PET 12.31.12

What this means:

First, Emily is a complete badass.  She is a real life superhero.  Second, the cancer in the pleural lining and the lymph nodes has been wiped out.  Surgery is now a possibility.  Third, the tumor shows barely any activity; cancer levels are generally above 3.6.  There is great reason to believe that the tumor inside Emily is merely a dead mass of scar tissue.  However, we are trying (although difficult) to maintain a conservative approach and assume there is more cancer to defeat.

In any case, determining the correct next step in treatment is crucial.  Emily will meet with City of Hope’s lung surgeon – Dr. Kim – this Thursday (January 10th).  Following the meeting, Emily’s case will be presented to the thoracic tumor board, made up of City of Hope’s lung oncologists, radiologists, and surgeons.  She is very excited about the interdisciplinary approach, and is anxious to hear the game plan.  Regardless of the next step (surgery, radiation, etc.), and due to the fact that this type of cancer is particularly aggressive and has a high rate of recurrence, Emily will most likely continue to receive maintenance chemo every third week for the foreseeable future.  Although not ideal, Emily fails to see it as a restriction, but as a means to freedom from this cancer.

Emily took time to celebrate this wonderful news with friends and family at Bruhaus – the same location where we held her chemo kick-off party back in July.  It was an amazing night, and we could not believe how much she has been able to accomplish in these past six months.

PET Celebration

Emily and I feel we have nearly climbed to the top of the mountain.  Although there is more to go and there will be a long climb back down, we feel extremely fortunate to be so close to the peak.

Thank you all for your prayers and support.  We truly believe you all are making a difference and have been an integral part in Emily’s battle.

Much love.  Live in the moment.

Emily & Miles

Emotional Week

Update from Miles about the emotional week that he and Emily had…

Thursday, December 13th
After two more rounds of chemotherapy, Emily went in for her third CT scan.  The test is painless and rather quick.

Late that night, we received a phone call from City of Hope with the CT scan results.  The tumor had remained stable.  No areas of metastasis.  Slight shrinkage in the lymph nodes.  After several test results showing tumor reduction, Emily and I were thankful for the lack of growth, but slightly disappointed. There is a sense of uneasiness in that it is unknown how long the tumor will remain stable – Years? Months? Not at all?

Wanting to determine the correct plan of action, we emailed Dr. Raja Flores (Surgeon, Mount Sinai Hospital in New York City) requesting a phone consultation at his earliest convenience.  In addition, we decide to travel to City of Hope the following day in an effort to move the appointment with our oncologist, Dr. Karen Reckamp, from the upcoming Wednesday to Monday.

Friday, December 14th
Amazingly, despite not even being his patient, Dr. Raja Flores responds in the morning and sets up a phone conversation for the early afternoon.  Dr. Flores is ranked in the top 1% of his field by US News and World Report and renowned for his ability to perform difficult surgeries.  But even more, he is compassionate and understanding of Emily’s uniqueness in terms of her youth and strength, and our determination to defy the odds and beat this disease.

While on our drive to City of Hope, we receive his phone call.   He recommends a PET scan to examine the full body for cancer.  He has been pleased by Emily’s response and does not want to perform surgery – especially a radical, invasive one (i.e. her entire lung, nodes, etc.) – unless and/or until it is the right time.  A PET will provide him with a clearer picture of Emily’s options.

At City of Hope, Emily easily changes her appointment to Monday (how great is their service?!)  Then we visit Medical Records to pick up her latest CT reports to send to Emily’s outside team of consulting oncologists and surgeons.  While walking out of the hospital, we read the report and quickly notice a glaring problem: “The tumor has no significant change in dimension and is 28 mm x 16 mm.”

But Emily’s tumor was 20 mm x 15 mm according to the previous scan.  Had Emily’s tumor grown 8 mm?  We sat there in the parking lot, desperately trying to remain calm and focused.  Being a Friday, there was no way we were going to leave and sleep on this for the weekend.  We quickly returned to Medical Records and requested the previous report.  As we expected, it stated the tumor was 20 mm x 15mm.  Frantically, we went to Radiology and requested an explanation.  Five minutes later, we were in the hallway speaking with the actual technician who reviewed Emily’s scan.  The technician explained that she measured the tumor in a different direction and counted the soft tissue.  However, when measured the same way as the previous report, the results were the same.  The tumor was stable.  We were flooded with relief and gratitude.

3rd CT Scan

Monday, December 17th 
Emily and I drive to City of Hope for our appointment.  We have one goal for the meeting: to get a full body PET scan scheduled.  During the drive, we practice our arguments for convincing our team of doctors to order the test.  We want the option of surgery and this is the first step.

We walk into the appointment and meet with Dr. Karen Reckamp.  She informs us that she is pleased with the latest results: The lining is still clear.  The lymph nodes have been reduced to normal size.  The tumor has remained stable and, given Emily’s great response to chemo thus far, might even consist largely of dormant tissue (no active cancer cells).  How do we tell if this is the case?  A PET scan.

Dr. Reckamp requests another round of chemotherapy and a PET scan for early January.  If the cancer has not spread at that point, City of Hope wants to explore the possibilities of either surgery or radiation for as early as late-January or February.

On the way home in the car, calling our families on speakerphone, I relay Dr. Reckamp’s statement from our meeting: “We are thinking outside of the box with you, Emily.  Our goal is to get rid of this so you can put it all behind you.”  One of the few times since her diagnosis, Emily broke down and cried.

Wednesday, December 19th
Emily’s 7th round of chemotherapy was scheduled for Wednesday, with a back-up date set for the day after Christmas if her platelet counts were below 75, as was the case the last two rounds.  But Emily came in strong with a count of 129, a fine showing that she attributes to the recent addition of shark liver oil and melatonin to her regimen.  And although it had been an emotional roller coaster of a week, Emily approached this chemo session with enthusiasm and in high spirits, feeling both motivated and inspired by the visits and conversations with her medical team.

7th Round of Chemo

For the first time, Emily’s therapy did not include the hard-hitting Carboplatin.  As a result, the session was dramatically shorter and the new chemo concoction is expected to be less harsh on her body.  Still, Emily understands that she must remain disciplined and steadfast in her approach in order to beat this.  She will continue to win each moment of each day, never once letting cancer have an opportunity.

Emily and I would like to wish all of you a Happy Holiday season.  For Christmas, there is only one gift I would like: my wife to be healthy and free of cancer.  And although it may be months before I can open that gift, I am just so excited and thankful that I can now see it under the tree.

Love to all.  Live in the Moment,

Emily and Miles

7th Round of Chemo - Thumbs Up!

Emily Gives Thanks

As a way to thank Miles for all he has done for her, Emily nominated him for a Caregiver Award called “The Wind Beneath My Wings” Award.  This was her submission.  Enjoy.

My husband, Miles Taylor, is the love of my life, the Wind Beneath My Wings, and the embodiment of selfless love.

Although, up until a few months ago, before my diagnosis, I would have more likely described him as a goofy, over-sized, overactive kid.  Not to sell him short – he has a graduate degree, a good job, and possesses a deep moral code – but the guy can, and does, make a game out of anything.

It’s not like I didn’t know what I was getting into. I met him my junior year of college when he showed up as the new ball boy for my volleyball team, and let’s just say this was not the official attire.

To give you a sense of who Miles is, I have to go back to a few of the highlights.  His wedding proposal lasted four hours.  It was a scavenger hunt that led me to clues all over the city of Los Angeles and finally back to our college campus, all along the way revisiting spots that held special memories in our blossoming relationship.

Of course I said, “YES!” This is just us being excited about the idea of getting married (and yes, that’s a bed sheet I’m wearing).

The wedding itself, held on the 4th of July two years ago, was a four day affair. Miles planned the three days of “pre-game” activities for our 200 out-of-town guests, renting a park, a gym, a disco, and an entire bowling alley.  He organized days with river rafting, softball, volleyball, and basketball, and nights with pub crawls, casino games, and dancing.  And of course there were prizes galore.

I took charge of the actual wedding, making sure it was a tasteful event.  All I asked Miles to do was arrange transportation for the guests from the State Capital gardens to the reception.  I had imagined a large, comfortable, air-conditioned charter bus for the 100+ degree Sacramento heat.  This is what he delivered.

Holidays with Miles are incredible affairs: always costumes, always a party.  He starts decorating earlier than Clark Griswold in National Lampoon’s Christmas Vacation.  Unexpectedly, I will arrive home from work and see our apartment ablaze in Halloween or Christmas lights and know that the local 99¢ Store has been depleted and its contents are now in my house.

And then there are all of his own annual traditions which bring together family and friends and involve elaborate details and homemade games like Thanksgiving jeopardy, family betting on the Oscars, Ryder Cup, Life Domination, every Steelers game, and the Rose Bowl, where we rent an RV and live in the stadium parking lot pretending to be from one of the teams.  Miles finds a school yearbook and assigns us all names and personalities, and then provides shirts and flags and we all end up talking like we’re from Wisconsin. But like any overactive boy, Miles can be a lot of work.  Not a week goes by that he doesn’t lose his keys, or his phone, or his credit cards.  He never wants to go to sleep at a decent hour, and he has yet to locate the laundry room.  So amidst all the fun, I had a small nagging concern about Miles as, well, as a father.  Sure, all kids love him, but would he remember to pick them up at soccer practice, or be able to discipline them?  My mother-in-law suggested starting him out on a dog.  So I got him Ginny for his birthday.

Cute, huh?  Well, that idea backfired.  Miles taught her to howl, growl, dance, and fight, leaving me with two wild creatures running loose in the apartment.

And then I got cancer.  And my husband grew up overnight.

Miles is, without a doubt, the Ultimate Caregiver.  He calls this “the biggest game of our lives,” and has assumed all responsibilities so that I can focus exclusively on beating my deadly opponent.

  • Around the house, he won’t let me lift a finger.  In fact, I first knew I was really sick when he starting loading and unloading the dishwasher, because I wasn’t aware that he knew we had one.
  • He has added cooking and paying the bills to his household chores.  And because I have difficulty breathing around pollen, he makes paper flowers for my breakfast tray.
  • During chemo week, he makes homemade checklists with little boxes to track my medicines, holds my hair back when I hug the toilet bowl, and sets the alarm throughout the night to feed me Saltines so I don’t wake up feeling queasy in the morning.
  • To keep the house clean, he has adopted a “no shoes in the house” policy, opens all mail and deliveries to keep my hands clean, and forces Ginny into the shower with him after her walks.  The poor dog’s skin is so dried out that she can’t stop scratching from being so clean!
  • Miles used to work from bed in the early morning while tuned into ESPN, but now he sneaks out at dawn because he knows that, as much as I love him, I sleep better when I am alone and can stretch out for a few more hours of shut-eye.  And because I chill easily, he keeps warm fluffy blankets throughout the house, and covers me in heated blankets when I am at the hospital between procedures.  This is me in the hospital lobby on a bed that Miles made.

Miles is a top-notch Medical Researcher & Communicator.

  • For a guy with “white coat syndrome” who avoids doctors at all costs, this cancer diagnosis has been a challenge for Miles on multiple levels.  But you would never know it to hear him converse with medical professionals after being up all night learning about my disease.  As my diagnosis progressed from what we thought was a carcinoid to lymphoma to finally Stage IV adenocarcinoma, as our vocabulary grew to include acronyms like EGFR, KRAS and ROS1, as the search for care took us to City of Hope, USC, UC Davis, UCSF and Mt. Sinai, I have never had to log on to a medical website.  Miles has done all the research.
  • Miles has a brilliant mind and has been able to weed through so much material.  He carefully selects what will be most helpful to me, summing up what he has learned in simple terms and analogies.  Then he filters out all the scary stuff so I can focus on the positive.
  • Despite being an Econ major/MBA guy, he has embraced alternative medicine as well.  He supplies me with daily doses of alkaline water, grapefruit juice, curcumin, and over-ripe bananas (ugh!) which he hides inside yogurt.  He even hired a doctor in hypnotherapy to guide me through visual meditative exercises.
  • Miles keeps our family and friends informed with written reports, initially as emails and now as blog posts, which are both entertaining and informative.  For example, he uploaded CT scans of my lungs before and after the first two rounds of chemo and used Microsoft Paint to visually explain my wonderful progress!
  • Miles also supported my fervent desire to preserve my fertility, so that within days of my diagnosis we were actively involved in the fertilization process.  This man who passes out at the mere mention of a flu shot, prepared my hormone injections, and while his mother inserted the fluid into my belly, stood at the base of our bed displaying photos of a boy and a girl on his laptop, images he created by morphing our faces. Two weeks later, we were naming our nine precious fertilized embryos.

Miles is the Best Coach ever.  I have played sports all my life and I respond well to coaching.  Miles was also a college athlete and we have often talked about what makes a great coach.  I know Miles’ dream is to coach a high school basketball team, but instead he got me.  And I am the lucky one.

  • For inspiration, he researches and prints stories of survivors.
  • For visualization, he found caps in our spice cabinet demonstrating how big my tumor was when we started (garlic salt), the results after six weeks (balsamic vinegar) and our goal for the next CT scan (vanilla extract).
  • For discipline, he goes “drill sergeant” on me when I need it.  There are no days off.  He keeps tabs that I’m meditating twice a day, drinking massive quantities of alkaline water, and maintaining a “kick-ass” attitude.
  • For support, he climbs into bed next to me each night, no matter how tired he is, and talks to each part of my body.  He tells every limb and every organ how strong it is, he speaks to my white blood cells that are attacking the tumor, he reminds me how strong I am and about my conviction to beat this.  And then he describes our future family and how excited it makes him.  Finally, Miles sings me an Irish lullaby and says that when I feel his touch at night, he is transferring his strength to me so that I will be twice as strong as I fight this.

Our lives have changed drastically in a few short months.  Miles sold his beloved truck for a cleaner, more comfortable vehicle to drive me to treatments.  He no longer plans parties or wears costumes, his golf clubs are gathering dust, and there hasn’t been a peep about Fantasy Football.  Miles is glued to my side and assures me I will never go through any part of this alone.

A few days after my initial biopsy, we received an email from the Chief of Medicine at the City of Hope.  We were thrilled to have made the connection.  She asked who was caring for me – apparently she was looking for the name of my primary physician – but I answered “Miles.”  And I am standing by that answer.

I sometimes miss the fun-loving carefree boy who had never heard of an adenocarcinoma . . . but I am ever so grateful for the man who is now by my side.

I love you, Miles.

-Emily “EmBen” Taylor

Chemo Postponed

Yesterday we hit a small speed bump.  During her meeting with Dr. Reckamp, Emily was informed that her lab results showed increasing white blood cell count and red blood cell count.  However, it also revealed a low platelet count.  The number has dropped from 196,000 (last round) to 75,000.  Such a drop is not uncommon and is a consequence of the carboplatin chemo.  Due to the low count, Emily’s chemotherapy treatment was postponed until next Monday (10/29).  This week of rest will allow Emily’s body to recuperate and to increase her platelet count to an appropriate level for chemotherapy treatment.

Fortunately, the test result does not jeopardize her using the powerful hitting carboplatin in the fifth and sixth round.  Emily’s oncologist is highly encouraged and pleased with Emily’s response to the current treatment regimen, and wants to continue hitting the tumor with this successful concoction.  And to take advantage of the week break, Dr. Reckamp had Emily get a flu shot to protect her through this upcoming flu season.

Emily is excited to have an additional week of good health.  This was a needed “vacation.”  However, this delay does not prohibit Emily from continuing to knock back the tumor.  With focused meditation, additional supplements, rest, and plenty of water, we are confident that by next Monday her platelet count will be prepared for chemo round #5 and ready to give us a scan even more beautiful than the one shown below.

This is Emily’s scan from last Thursday (10/18).  The tumor is noticeably smaller than the previous scan.  Only 20mm x 15mm of mass to go!

Still Shrinking!

Emily has done it again!  The test results are in and the tumor has shrunk.  A quick breakdown of the most recent scan:

  • The tumor has decreased from 24mm x 19mm to 20mm x 15mm.

To get a better idea of the massive decrease in the tumor since the start of chemotherapy, here is Emily holding in her right hand the equivalent of the original tumor size and in her left hand the puny, remaining tumor size.

  • The lymph nodes decreased dramatically to 15mm x 10mm & 12mm x 9mm.  Normal, non-malignant lymph nodes are 10mm x 10mm…looks like we are almost there.
  • The thickness of the lining of the lung has decreased from 9mm to 5mm.  And that, folks, is the thickness of a normal healthy lung lining!!!

As a result of her incredible success, Emily’s oncologist has ordered 2 more rounds of chemotherapy with the powerful carboplatin.  Generally, this George Forman-esque chemotherapy is only used for 4 rounds due to the toll it takes on the body.  However, Emily is still just as vivacious as ever, and simply exudes life and health.  And thanks to that, cancer has to get knocked around in the ring for two more rounds with the heavyweight.

Personally, I cannot state how proud I am of Emily.  Cancer is not only a physical battle, but an emotional one as well.  Emily’s determination and inner-resolve have not waivered once.  She is steadfast in her belief that she is her own statistic and there is only one possibility: her beating this disease.  Each day, she remains committed in her approach by meditating three times, drinking at least a gallon of pH water, consuming three glasses of grapefruit juice (and now Pomegranate juice) to enhance chemo’s effect, taking supplements (usually with olive oil), eating plenty of iron (to counteract the chemo-caused anemia and to avoid a blood transfusion) through steaks and Steelers games, and of course remaining positive and enriching all of us with her smile.  As I have felt for the past eight years together, I feel so fortunate to share my life with her.

Emily will start her fifth round of chemotherapy Monday (10/22).  Once again, she will be re-charged and ready to fight thanks to all the love and support she keeps receiving daily.  Thank you all for the letters, the gifts, the bottled water, the phone messages, the texts.  We cannot state enough how much each gesture means to each of us.  Emily is not alone in this fight.  Thank you.

Lastly, we would like to congratulate website guru, Annie Daun, on her engagement Saturday night to John Meyer.  John proposed on the Claremont McKenna campus following the Dig Deep, Beat Cancer volleyball event.  John, you made a great decision.  Cheers to you both.

Love to all.  Live in the moment.

Miles (and EmBen)

P.S.  Happy Birthday on Monday to the original Emily Taylor (EmTay).  We love you and thank you so much for your constant dedication to finding a path to EmBen’s recovery.