Hall of Fame: An Angel Earns Her Wings

Sometimes words just don't exist for life's curve balls.  Emotions get all jumbled up and impossible to process.  I've occasionally referred to a ten year old cancer fighter, Mya Terry, who recently underwent her third stem cell transplant, asking for your your prayers and positive thoughts (see 9/28/12 and 11/22/12 posts).  On April 10th, Mya's suffering ended and this little angel earned her wings.

When Mya was five, she was diagnosed with Non-Hodgkins Lymphoma.  After two years of chemotherapy and radiation, she might have been considered cancer free.  But before she could catch her breath, she was diagnosed with Acute Myeloid Leukemia (AML), just like me, caused from the chemotherapy she received for the first cancer, just like me.  She quickly received a stem cell transplant from a donor, but within a few months, she relapsed.  After receiving a custom made regimen to get her back into remission, she suffered multiple organ failure, causing the second transplant to be delayed.  She finally received the second transplant from a different donor in October 2011.  Everything was going well until she relapsed again last summer.

Mya returned to St. Jude Children's Research Hospital in Tennessee and received her third transplant, this time from her parents, last September 2012.  Her struggle to remain in remission was surpassed by complications from the treatment -- again, multiple organ failure.  Keeping a 24 hour vigil for months in the ICU with the medical staff, Mya's family did everything they could to bring a sense of normalcy and hope to Mya and to themselves. The day before Mya was scheduled to return to New Jersey via Medivac, she rallied one last time to share precious moments with her parents, and slipped away.

I spoke with Mike and Kelly Terry over the phone just before Mya's last relapse to discuss the prospect of interviewing all three of them for a writing project.  I was referred to them by friends, Matt and Jodi Savare (Matt is also a co-worker).  Their son, one of triplets, was diagnosed with another form of leukemia (Acute Lymphocytic Leukemia, or ALL) when he was two and a half years old.  I have been following Mya's story on her CaringBridge webpage, where Kelly kept everyone informed with moving and informative posts on Mya's journey.  These posts were so important to me, I had to remind myself that I never actually met anyone in the family.

When I heard that Mya had taken flight, I was relieved for her, and devastated for Mike, Kelly and their son Michael, who was closer to his sister than siblings can ever be.  The chances of a cure from AML get smaller with each relapse, so I can't say that it was a shock.  But Mya's spirit was so strong....  It was as though the world wasn't quite ready for that much goodness and love.  And yet, it was.  As the Terrys write:

Some of [Mya's] legacy efforts include St. Jude spokesperson at TUMI General Managers Conference in Long Branch, NJ; modeling for Back to School edition of the Money Saver Magazine; featured hero of the Leukemia and Lymphoma Society Pennies for Patients spokesperson; and Team Lead for Relay For Life.  Mya performed as a guest chef at Nicholas in Middletown NJ;  Ragin Cajun in Belmar, NJ; Tommy’s Coal Fire Grill in Oakhurst, NJ and was a St. Jude Executive Chef Assistant at Thanks and Giving Campaign Editor’s Conference in New York, NY....

Mya enjoyed being part of the Girl Scout Troup 100, Swimming, Playing Soccer, all things technical like her Iphone, Ipad and movie creating, crafting, cooking, gardening and riding her bike.  Mya received the Kohl’s Cares Awards:  Store Winner and Regional Winner in 2012.  Her philanthropic activities include:  Mya’s Mommy Bags, Bone Marrow Swabbing Drives; annual Blood Donation Drives and the Mya Sent Me - Pay It Forward/Random Act of Kindness Movement.  Mya aspired to attend culinary school and open a restaurant, to become an oncology nurse and a veterinary volunteer. 

Perhaps the most amazing thing I learned the weekend that I attended the visitation and funeral (where I finally had a chance to meet Mike and Kelly), was that Mya published a book called "The Day I Got My NG Tube."  Instead of writing a book on princesses or shopping or dolls, as you might expect of a ten year old, she wanted to help other kids who might be scared of getting a feeding tube.

The outpouring of support, grief and the need to pay tribute by the New Jersey shore community was like nothing I've ever seen.  I arrived at the funeral home ten minutes after the visitation started and had to stand behind at least 100 people to get in.  More than 150 were still in line when I left -- a sea of purple for Mya.  Most of the eulogies given at the funeral were given by children, telling us how Mya changed their young lives.  It was heartbreaking and beautiful all at the same time.  A few days before Mya's passing, I heard a song on the radio by The Script that could have been written with Mya in Mind:

"Hall Of Fame"

Yeah, you can be the greatest
You can be the best
You can be the King Kong banging on your chest

You could beat the world
You could beat the war
You could talk to God, go banging on his door

You can throw your hands up
You can beat the clock (yeah)
You can move a mountain
You can break rocks
You can be a master
Don't wait for luck
Dedicate yourself and you go and find yourself

Standing in the hall of fame (yeah)
And the world's gonna know your name (yeah)
'Cause you burn with the brightest flame (yeah)
And the world's gonna know your name (yeah)
And you'll be on the walls of the hall of fame

You can go the distance
You can run the mile
You can walk straight through hell with a smile

You could be the hero
You could get the gold
Breaking all the records they thought never could be broke

Yeah, do it for your people
Do it for your pride
How you ever gonna know if you never even try?

Do it for your country
Do it for your name
'Cause there's gonna be a day...

When you're standing in the hall of fame (yeah)
And the world's gonna know your name (yeah)
'Cause you burn with the brightest flame (yeah)
And the world's gonna know your name (yeah)
And you'll be on the walls of the hall of fame

Be a champion, be a champion, be a champion, be a champion
On the walls of the hall of fame....

The essence of Mya Terry is best summed up in the message with which Kelly signed most of her posts, "N.E.G.U.!," Never Ever Give Up!  Mya never gave up.  I'm not giving up.  I've never met a cancer survivor who didn't fight like hell.  Cancer may take some, but it's warriors like Mya who give the rest of us the strength to keep fighting.

Stay tuned for more information on the foundation that will soon be set up "that will Pay It Forward to other research foundations, other smile foundations, other families, and other care centers" in Mya's honor.  In the meantime, remember this little girl and be a champion.

Kathy

CANcer + HEALth = CAN HEAL

Wrecking Ball

It was a week before I knew I had leukemia, October 2009.  Michael N. and I went to the last Springsteen concert, in fact the last concert ever, to be played in Giants Stadium.  We had tickets on the floor.  We stood in line all day to get a good spot.  And the show was outstanding.  Bruce unveiled a newly written song about the stadium's demolition.  Wrecking Ball became a beloved Springsteen song for all who have ever been to the stadium, a must-have album and a legendary tour that he can’t seem to bring to an end.  This song is personal for me,  even though it's really a song about New Jersey.

When your best hopes and desires, are scattered to the wind
And hard times come, and hard times go
And hard times come, and hard times go...
Yeah just to come again
Bring on your wrecking ball
Come on and take your best shot, let me see what you've got
Bring on your wrecking ball

I haven't posted an update since Thanksgiving because shortly after my last post I was hit with another wrecking ball.  It took me awhile to regain Bruce's No Surrender attitude after I learned in early December that I had had another recurrence of the slow growing monster that I've been battling for 12 years, Adenoid Cystic Carcinoma of the Breast (ACCB).  On December 7^th, Pearl Harbor Day, I traveled to Baltimore for a follow up PET/CT to check on the two radiofrequency ablations ( RFAs) I had last summer.  I planned to announce in my next post that all was well and I had No Evidence of Disease (NED in Cancer World).  But instead the wrecking ball caught me off guard.  

I mentioned in my August 5, 2012 post that Dr. Georgiades successfully ablated a very tricky tumor in an area of my lung called the hilar region.  Since ablations can’t really be confirmed as successful for 3+ months, I was jumping the gun a little.  Dr. G thought he killed the entire tumor, aiming his magic needle carefully in between two blood vessels in an area that is very congested with vital structures.  He had to accomplish this without causing a “catastrophic event.”  We discussed the risks and the danger of the procedure and decided to go for it, even though the hilar is considered a “no fly zone.”  I asked him to do this because he’s that good and because the only other option was a fourth (and potentially crippling) lung surgery that would have destroyed my quality of life.  

Unfortunately, the December scan showed that this ablation was not entirely successful.  The scan showed active cancer surrounding the ablated area.  In my first formal consultation with  Dr. Hong (Dr. G relocated his practice and family back to Cypress), he told me that the danger of ablating an even bigger area in the hilar region was too great.  “Perhaps radiation is an option for treating the rest of this tumor.”  He referred me to a radiation oncologist, Dr.Russell Hales, for an opinion.

As the word “perhaps” echoed in my brain, he said, “In addition, the scan shows a rather large lesion in your right kidney.”  He said that he “might” be able to ablate this using cryoablation (killing the tumor by freezing it rather that burning it), but a urologist would have to first insert a stent between my kidney and bladder to protect an important tube from collapsing.  The other option would be, you guessed it, more surgery.  Bring on your wrecking ball.  Dr. Hong referred me to a urology oncologist for an opinion as to how to proceed, and said we would talk again after the two consults.  I just sat there, unable to move. 

So hold tight on your anger, hold tight on your anger
Hold tight to your anger, and don't fall to your fears

Just before Christmas I went for both consultations.  Convinced that my good luck in dodging bullets had run out, I braced for the dreaded dialogue that I’ve imagined since 2006:  "You know, Ms. Seeley, for patients like you there comes a time when treatment is just not beneficial anymore."  Thankfully, this was not the day for that conversation. 

Dr. Hales said that the reason the hilar is considered a “no fly zone” is because it’s too dangerous to fly there.  He also said that using conventional radiation (30-40 daily treatments) for my type of cancer has not been terribly successful.  But there is a relatively new technique called Stereotactic Body Radiation Therapy (SBRT), which uses a higher dose of radiation in fewer treatments.  Dr. Hales brought my case before several other doctors from many different cancer disciplines, called a tumor board, and they concluded that going outside the box has worked well for me in the past.  He said that was willing to task his team of physicists to design a treatment plan for me that Hopkins has never done before.  He proposed using SBRT for my rare type of cancer (a first) in the “no fly zone” (another first outside of a clinical trial).  Because there is no scientific data for a case like mine, he couldn’t officially "recommend" this plan, but he said that he would be willing to do it if that's what I wanted.  Since leaving the tumor untreated would greatly accelerate my exit from this planet, the choice seemed obvious.  I decided to give Dr. Hales a shot at writing me up in a journal someday.

A kidney biopsy of the new mystery lesion in early January came back positive for more ACCB.  Bring on your wrecking ball.  After much back and forth, the urologist, my oncologist (Dr. Forte), Dr. Hong and I agreed that the safest way to proceed was Dr. Hong’s initial plan:  have a stent inserted to protect my plumbing, followed the next day with a cryoablation to freeze the tumor in my kidney.

The American Cancer Society has built hotel type lodging in several cities near well known hospitals for cancer patients who need long term treatment.  Thankfully, the Hope Lodge near Hopkins had room for me when I was scheduled to begin all these procedures.  I moved there on January 15^th, and I lived there for almost a month.  I was relieved that I completed radiation without any problems.  I was able to work remotely the whole time, taking an hour each day to go to Hopkins for treatment.  I finished radiation on February 5^th, had the stent placed on the 7^th, and the cryoablation took place on the 8^th.  Cathie helped me move back home on the 10^th, I worked from home on the 11^th, and returned to the office on the 12^th.  Of course this wasn’t as easy as it sounds.  The kidney project involved two consecutive days of anesthesia, which is terribly hard on me, and there were other very painful issues those two days.  But returning home to Sadie made me so happy, it was impossible to dwell on wrecking ball damage. 

My kidney is starting to feel better, but my weight took a hit and the fatigue from radiation caught up with me. I've been sleeping 14-15 hours a day on the weekends, but I’m told this should improve very soon.  I have to give special thanks to Michael P., Cathie, Karen and Mary for all their help during this latest battle.  I can’t do any happy dances till I have the next PET/CT in early June, when I’ll learn if all these treatments worked.  The patients and caregivers I met at Hope Lodge were amazing people with tremendous courage and a fierce will to live.  Their hope was the No Surrender inspiration I needed to reload my weapons in this fight.

So if you got the guts mister, yeah if you've got the balls
If you think it's your time, then step to the line, and bring on your wrecking ball...

It really is a great song.

Kathy

CANcer + HEALth = CAN HEAL

 

Giving Thanks During Stormy Times

Thanksgiving is a loaded holiday for many people this year.  These last weeks have tested our patience, faith, and humanity.  As we come together today, we appreciate more, give more, and love more.

I've been through a few hurricanes since moving to the East Coast in 1999.  But Sandy was like nothing I ever hope to see again.  During those days of no power, living with friends, the gas shortage, the images of massive devastation and loss of life, I grieved for the Jersey Shore, Staten Island, Long Island and other places that are still suffering.  I heard Bruce in my head:

Everything dies baby that's a fact; But maybe everything that dies someday comes back; Put your makeup on fix your hair up pretty and meet me tonight in Atlantic City. (Atlantic City)

My firm provided incredible support, leadership and guidance during this crisis, and I struggled to find a way to help my team.  I shared the only advice I could think of:  Eat the ice cream first!  During this time of barely controlled chaos, we all realized how much we take modern conveniences for granted.  We also saw people come together in ways that we couldn't have imagined.  Call it what you will:  the power of the human spirit, witnessing,  living God's word, or just plain instinct, the world responded and tended to our wounds.

In the meantime, I continue to manage the complications mentioned in my last post from my lung surgery in August, 14 weeks ago. Issue #1: The invisible Ace bandage that felt like it was wrapped too tight around my core is still there. It's better, but not gone. Issue #2: The arm injury from positioning on the OR table is also still there, but also getting better. Issue #3: The burning in my skin has escalated and tests me like no other pain so far. Several experiments with drugs have not worked, but we're tweaking some dosages and I'm learning to balance the pain with the side effects. I have a new appreciation for people with continuous pain, every minute of every day. It can make you nuts. My pain specialist says I have Post Thoracotomy Pain Syndrome, which apparently is common after a major lung surgery. (I didn't technically have a thoracotomy, open lung surgery, but mine was major enough to cause this problem.) The good news is that this will heal on its own, eventually. An upcoming MRI of my back will show if there is nerve damage that may have been caused from the surgery that we can also treat.

As Sandy blasted through our lives, and during these medication experiments, my uncle Vic became gravely ill, his body finally shutting down after 9 years of serious complications from a massive stroke in 2003. (See March 4, 2012 post, What Doesn't Kill You...)  Vic passed away peacefully at home on November 17th, with his wife, Patricia, of 57 years by his side.  He was surrounded during his last days by his three sons, many grandchildren, friends, neighbors and caregivers.  A full military funeral was held yesterday, and Vic was honored as he so graciously deserved. Again, I heard Bruce in my head:

They say you can't take it with you, but I think that they're wrong
'Cause all I know is I woke up this morning, and something big was gone...
 The Mona Lisa, the David, the Sistine Chapel, Jesus, Mary, and Joe
And when they built you, brother, they broke the mold. (Terry's Song)

Ironically, Vic passed away on my second transplant birthday.  It was a day for recognizing the fragility of life and death.

June 2004

And on that note, I ask all of you to send prayers, positive energy, shooting stars, magic lightening bolts, whatever you believe in, to the Universe, God and all that is good in the world for Mya, the 10 year old girl I spoke of in my last post.  After undergoing a third and very difficult bone marrow transplant for AML in September, the transplant has failed and the leukemia is back.  Today, on Thanksgiving, she will receive the first of five days of blasting chemo (the same chemo that, in the past, put her in ICU with triple organ failure) to kill the cancer, after which she will get a lymphocyte injection from her last donor (her mother).  This process can be done a few times, and has worked in the past for some patients.  It's a long shot.  A Hail Mary.  But it's a chance.  Mya has been such a fighter, if she's not giving up, then neither should we.  Again, her story is here.

As we sit together today with family and friends, passing the turkey and gravy,  don't forget to pass around the hugs.  Take a moment to look up in the sky and hug yourself too.  Life is short and amazing.  Gratitude should not be limited to one day of the year.  It should be a way of life.  Happy Thanksgiving everyone.

Kathy
CANcer + HEALth = CAN HEAL 

This time I got to be the donor!

I've never been so glad to see the end of Summer.  This was a tough one. But, like everything in Cancer World, there were positive aspects to all the pain and stress. The lung resection on August 14th was rather brutal and my recovery is ongoing, but I was able to make a contribution to science, and that was important to me. The Adenoid Cystic Carcinoma Research Foundation (ACCRF) works with the University of Virginia in Charlottesville to conduct research on ACC. They have a tumor donation program, and I arranged with Hackensack Hospital to have them send my tumors to U of V for research projects. Since my ACC history is so unique (I am among a few dozen cases ever recorded with my specific condition), I was excited that I could contribute something that might lead to targeted remedies or even a cure for this particular cancer.

I am alive today only because of an anonymous man somewhere in Europe who donated his stem cells to the international registry for blood related transplantation (Be The Match). If there was some way that I could donate too, I was all for it.

As for the surgery, it was very successful, but more complicated than expected.  One of the tumors was close to my heart and my chest wall, which extended the anticipated two hour surgery to closer to five. Because this "minimally invasive" procedure was more extensive, I'm still fairly sore.  It feels like my rib cage has been wrapped in a giant Ace bandage and it's on way too tight.  Six weeks post surgery and I still can't get that damned invisible bandage off!  I'm managing much better, but moving pretty slow. 

Add to this an unexpected arm injury.  To position me correctly on the OR table, the surgical team had to strap my left arm up and over my head.  Prolonged lack of blood flow and stretching beyond anything Gumby would have tolerated, landed me at physical therapy twice a week to recover the use of that arm.  This too, is still sore, but manageable and much improved.

Lastly, the palms of my hands, feet and legs started burning a few weeks ago but with little visible evidence of the cause. It's not like a sunburn, which hurts on the outside. It's an internal burning that is very similar to Graft v. Host Disease of the skin (flashback to the early months of transplant recovery). My transplant team put me on a low dose of steroids to tamp it down, but it didn't work. The current theory is that it may be a type of neuropathy or a misfiring of nerves, brought on by the trauma of the surgery. I'm leaning toward another mystery response by my new immune system, which must be very upset that I put my body through the ringer again. Last year when I had a lung resection on my right lung to remove a transplant related infection, I had all kinds of mystery problems that no one could diagnose. They eventually resolved on their own, and I'm thinking this will too. With a bum left arm and burning hands, I wasn't able to type for any length of time, which is why this post is so overdue.

With all these setbacks impeding my planned recovery, I've been out of work longer than I planned.  But I hope to remedy that soon, since things will only improve from here and I have a busy Fall ahead.  Now that both cancers are under control, I can focus on getting on with life and figuring out ways to contribute more than just tumors.

I am closely following the story of a 10 year old girl named Mya, who is fighting a war at St. Jude Children's Research Hospital in Memphis.  Last week Mya underwent her 3rd transplant and is waiting for the engraftment to take so that her unthinkable pain and complications will subside. You can read Mya's story here.  It's so easy to get wrapped up in our day-to-day worlds and look only at that which demands our immediate attention.  But we owe it to ourselves and to each other to take a step back and give thanks for what we have, never forget that there are others who are far worse off, and look for ways to make a positive impact.  Taking action to improve the human condition is as much a part of our DNA as anything that science can detect.  It's what we do.  Please take a moment and sends prayers and positive thoughts to Mya and so many others like her.

Kathy
CANcer + HEALth = CAN HEAL

"Tomorrow there'll be sunshine and all this darkness past"

How is it that Bruce always know just the right thing to say?  He's my inspiration for getting through this latest medical drama.  He's coming back to NJ in September, then to Pittsburgh in October (Mary and her family have no idea what they're in for) and to Glendale, AZ in December (get ready AZ friends).  There's a lot to do and I don't have time for drama.

In the month since my last post, I've been very busy.  The upshot is that things are going better than I could have hoped for, given the grim choices outlined in my last post.  

Although the biopsy confirmed that the "hot" spots are definitely cancer,  Dr. Georgiades successfully ablated the trickiest tumor of the bunch - the one in the hilar region of the right lung.  Now that that one is out of the way, Dr. Elmann will surgically remove the last two tumors with a VATS resection (a minimally invasive surgery that's done with scopes and a camera) on the left lung on Monday, August 13th.  I should be home in time to get tickets on Friday morning for Bruce's Pittsburgh show.  I'm in much better shape now than I was last summer, so recovery from this surgery should be manageable and relatively short.  Then this nightmare will be over!  

I know everyone was hoping the "hot" spots were a return of the  MAI infection, rather than cancer.  But Dr. G assured me that the tumors are old spots that we've been watching since 2008.  The fact that they grew and went from cold to hot is not a huge surprise.  If they were new spots, then I'd be pissed.  The fact that they're old means that they've probably been there since I first got ACCB in 2000. Knowing this made a HUGE difference in my outlook on all this.  

So, where's the drama?  Between the biopsy on the left lung on July 13th and the ablation on the right on July 20th, both lungs collapsed 25% about a week after each procedure, and I spent the last two weekends in hospitals.  Here are some highlights:

• When I was just about to get sedation for the July 20th ablation at Hopkins, Dr. G told me that I had a pneumothorax (partially collapsed lung) from the biopsy the previous week and that we would have to postpone the procedure.  I put my foot down, which was hard to do because I was already face down on the OR table, strapped in with an oxygen mask on my face.  I took off the mask, looked up at Dr. G and wagged my finger back and forth, saying "No, no, no.  Here's the new plan.  You're going to insert a chest tube to fix this and we're going forward with the ablation."  Resigned, he agreed and we were off to the land of ablations.  The Operative Notes documented my insistence, which I found pretty funny.  The ablation was even trickier than the first one I had in 2008 when Dr. G had to pull a tumor way from my aorta with his magic needle to avoid a "catastrophic event."  The hilar region is a complicated mesh of arteries, veins, ligaments, lymphatic and bronchial vessels, often called the "root of the lung."  Squished in there was the tumor.  Three manufacturers' representatives observed from afar because Dr. G chose to use a new cutting-edge needle to control the burning of the tumor in such a vital area.   Dr. G had to position his needle parallel to and in between two blood vessels in order to successfully ablate the tumor. 

• As he told me about this afterward, he said, "You remember that I told you I'm leaving?"   Dr. G is not one to joke around.  "What?!"  "Yes, I'm moving my family to Cyprus so that we can be closer to the rest of my family."  I felt conflicted between the good news of the ablation and the panic that was rising like an awakened volcano.  "When were you going to tell me?" I asked like a jilted teenager.  "I told you in the OR."  "I was unconscious!"  Typical passive aggressive man, I thought, breaking up at someone's most vulnerable moment.  "There aren't a lot of jobs over there, and it's kind of unstable, isn't it?"  I was trying to selfishly negotiate Dr. G's future.  Turns out the American Medical Center on Cyprus is building an entire surgical suite just for Dr. G.  He's leaving me in the hands of his closest colleague, Dr. Kelvin Hong, who co-wrote the gold standard textbook on ablations with Dr. G.  When someone saves your life, it's easy to become attached.  Dr. G knew this and handled my emotional response with humility and understanding.  I will miss him.  (Did I mention that he came in to ablate this tumor on a vacation day?)  I hope Dr. Hong can handle me.  We met briefly and he's very nice (he provided "technical assistance" during the ablation).  I'll see him for a follow up PET/CT in October.

If all this wasn't enough, I've been fighting a battle with Comcast for the last month.  Apparently, Maplewood has an agreement with Comcast for sole cable rights.  I've had no less than 8 appointments since July 9th and my service is still not fixed.  Here's my advice for all you Comcast victims:  1.  Always ask for a supervisor and get their name, direct phone number and ID; 2.  For billing problems, ask for the Retention Department so that they know you're really mad and about to cancel your account (even if you can't because your city is holding you hostage to a specific cable company); 3.  Always ask for an in-house technician for service calls.  If you don't do this, a contractor, who gets paid by the job and can't wait to leave your house for the next appointment, will make everything worse and drive you insane.

In the midst of all this craziness, I was surprised and grateful to learn that the church I attend, Prospect Presbyterian Church, held an all day prayer vigil for me on August 1st.  I'm not officially a member of this church, but I've been a supporter for a number of years.  I  am so thankful for their support and kindness.  Pastor Rick and Bruce have an equally optimistic view of the future, and I lean on this through good days and bad.  My countless thanks to them and all of you who have been in my corner through this last battle. 

Kathy

CANcer + HEALth = CAN HEAL