Saturday, November 2, 2013


As I watch the leaves turn bright autumn colors, I can't believe it's November.  This time of year marks a series of milestones for me.  Since 2000, it seems that September and October are the biggest months for cancer diagnoses, relapses and other really bad news.  In the last year or so I went through a downward spiral involving my original diagnosis, Adenoid Cystic Carcinoma of the Breast (ACCB).  A few weeks ago I went to Hopkins for a cryoablation on a growing metastatic lung tumor, which I spoke of in my last post.  Cryoablation differs from radiofrequency ablation in that it uses gas to form a ball of ice that freezes the tumor rather than burning it.  The procedure went great, but since the pleura is made up of lots of nerve endings, I have varying amounts of pain in my right shoulder, wrapping around to my chest.  It's very similar to the pain I still have on my left side from the lung surgery in August 2012, so at least I'm balanced!

Aside from this one tumor, I received unexpected good news in mid July:  Somehow, several more tumors in the pleura slowed to a crawl, leaving me with a surprising case of cancer-roller-coaster-whiplash.  Now, with the cryoablation out of the way, I have a reprieve from any more medical drama until the next set of scans in mid January. 

This luxury allows me to reflect on the biggest milestone of all. November 17th is the third anniversary of my stem cell transplant for Acute Myeloid Leukemia (AML) and the birth of my new immune system (and if my theory is correct, the reason for the recent slow down of ACCB).  I remember the Thanksgivings I spent in hospitals, the setbacks, the delays for returning back to work, the life threatening infections and brutal medications.  But now that I'm able to experience the beauty of this season as an AML survivor in remission, it seems like a lifetime ago. 

Every Saturday, as I speed my way through Maplewood trying to get to the recycle center before it closes, I pass the Fire Department with a sign on the lawn that says, "It's In Their Blood."  It's such a great double message; I would always smile to myself and make a mental note to stop there one day to explain why.  Today I stopped and rang the front door.  It is well documented that many men and women in civil service professions such as firefighters, police officers and the military are donors for stem cell transplants (also referred to as bone marrow transplants since stem cells create bone marrow) through the Be The Match registry.  The two men who opened the door were no exception.  After thanking them and their fellow firefighters for joining the registry, they said that it's just part of what they do.  I said that because what they do is "in their blood," it's now in my blood too, quite literally.  Since I have never received a response from the letters I wrote to my donor, it felt good to share a little gratitude with others whose generosity may someday save someone's life.

Since my season of milestones is also the season for giving thanks, I've been thinking about the many things we take for granted and how easy it is to forget to be grateful for the basics.  I do it all the time.  I'm so happy about the big picture, I often forget about the much smaller picture -- getting one's body to do what it's told to complete the simplest of tasks.  I just finished reading an amazing book, which I learned about from Jon Stewart (I never miss The Daily Show on Comedy Central).  It's called The Reason I Jump:  The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida, published in 2007, translated from Japanese this year.  This is one of the most profound books I've ever read.  Barely over a hundred pages, this 13 year old boy made me think about every aspect of life in a new way.  His pain, love and purity of heart stopped me in my tracks.  The book explores a series of questions to help the world understand what it is like to be autistic:  "Why do you ask the same questions over and over?"  "Why don't you make eye contact when you're talking?"  "What is the worst thing about having autism?"  and "What's the reason you jump?"

During this amazing season of nature's transitions, one question seemed especially relevant:  "Why do you enjoy going out for walks so much?"
When we look at nature, we receive a sort of permission to be alive in this world, and our entire bodies get recharged.  However often we're ignored and pushed away by other people, nature will always give us a good big hug, here inside our hearts.
I don't have any kids.  I don't even know anyone with an autistic child.  But I don't have to in order to appreciate the magnitude of this boy's challenges and wisdom.  As we move through this time of gratitude and Thanksgiving, let's all celebrate the milestones and give each other a good big hug.


Saturday, September 14, 2013

N=1 When Science Meets Faith

I've never been good with math.  Algebra and geometry were dreaded subjects.  I picked my college major based on how few math and science classes I needed to graduate (sociology).  When I got to graduate school, there was no avoiding statistics.  I honestly thought I had gone to hell.

You may recall in a recent post I described how, after a year of bad news after bad news, an RFA procedure that was scheduled for July 17th was cancelled at the very last minute.  The numerous lung tumors, old and new, that were detected on a scan in early June were either shrinking or no longer active, and Dr. Hong felt that there was nothing problematic enough to treat.  This was a mind-blower, to say the least.  The prior seven months had been a race to keep up with the increasing speed of the Whac-A-Mole treatment plan my team and I put into place.  Since then I have been straining my non-scientific brain to come up with how this reversal of fortune could have happened.  I was thrilled, grateful and confused all at once.

Several people told me not to question what seemed to be a miracle.  I'm of the mind that the word "miracle" is overused, and I wasn't quite ready for that conclusion.  One thing I've learned is to expect the unexpected.  Another bad scan and there goes the miracle.  But those that said it was the hand of God had a point.  I knew that a lot of people have been praying for me for a very long time.  I've been praying quite a bit too, believing strongly in this power.  How can I not, after everything I've been through?  But something told me that there's more to it.

I looked for something that would clinically explain how the cancer not only slowed down, but took an about face.  I decided to wait for the next scan to test my long shot theory, and yesterday I got the confirmation I had been hoping for.  The PET/CT showed only one "hot" spot in my upper right lung, and nothing else that looks like cancer!  I went over my list of body parts that have been treated since January:
  • right hilar lung tumor in a very dangerous spot, treated with RFA and later with radiation -- check!
  • right kidney tumor, treated with cryoablation -- check!
  • left rib tumor, treated with one big dose of radiation -- check!
  • a bunch of new and old lung tumors, growing in the lining of both lungs (planned to treat with RFA) -- except for the one hot spot, all stable, shrinking or no longer active!
Dr. Hong actually said I was "nearly disease free."  My cousin, Karen, was there as a witness.  I told him of my long shot theory and he agreed that it made sense.  Here it is:

I've written a lot about graft vs. host disease, or GVHD -- the rejection process that occurs when someone gets a stem cell or bone marrow transplant from a donor.  GVHD hit me hard almost immediately after my transplant and kept knocking me down for 1.5 years.  The good news is that having my new immune system fight me, the host, meant that it was also fighting the leukemia, a process called graft vs. tumor.  So far, science has shown that getting a transplant for a blood cancer usually never works for also treating a solid mass cancer in the same person.  Usually never.  My theory is that graft vs. tumor is giving both leukemia and ACC a smack-down.  This is the only clinical explanation for what is happening. 

Adenoid Cystic Carcinoma is a very rare cancer, afflicting only 1,200 people a year.   Leaving aside the very few patients like me, who have this initially appear in the breast, I haven't found anyone with ACC who has also had a stem cell transplant from a donor.  N=1. 

On the other hand, why did this smack-down only start this summer when my transplant was 2.5 years ago?  I was on steroids and other immunosuppressants for the first 1.5 years to treat GVHD.  My immune system couldn't even ramp up to normal until these drugs completely left my system.  Plus, ever since the transplant, I take a really long time to heal.  I'm still suffering from Post Thoracotomy Pain Syndrome from the lung surgery I had 13 months ago.

Yes, the scan yesterday wasn't totally clean, but I'm a long way from where I was earlier this year.  (I'll have a cryoablation on the hot spot sometime before the end of the year.  There's no urgency.)  Even if graft vs. tumor doesn't shut down Whac-A-Mole long term, my experience still shows a smack-down.  The evidence supports the theory, regardless of what happens in the future, and I plan to share it with the researchers of the ACC clinical trials and anyone else who will listen.  I'm convinced that there is a connection between ACC and treatment(s) for Acute Myeloid Leukemia.  Maybe this connection will lead to something, anything, that might contribute toward a treatment for a group of people and their families who are going through unthinkable suffering.

Although my doctors all agree with my theory, none of us saw this coming.  Not with my history.  Enter, the power of prayer.  I believe that prayer allowed graft vs. tumor to fight the huge amount of cancer that was found over the last year.  Science and faith are not mutually exclusive.

N=1 is not as lonely as it sounds.  It's actually simple but powerful math, inspired by simple but powerful prayers.


Saturday, August 31, 2013

Modern Medicine = Science Fiction?

Ever since my stem cell transplant in late 2010, I've thought of medicine as science fiction.  These days, it's hard to even fathom what is taking place.  I still can't believe that my blood and bone marrow belongs to someone else, and that my donor's DNA is coursing through my veins.  That entire experience still blows my mind.

But, as we all know, I'm now fighting on a different battle field.  For the last 14 months I've returned to Cancer World, circa 2000, when I was first diagnosed with a rare head and neck cancer that appeared in a gland in my breast (Adenoid Cystic Carcinoma of the Breast or ACCB).  My latest battles began in June 2012 with more tumors in my lungs, kidney and a rib, with treatments ranging from surgery, radiofrequency ablation (RFA), cryoablation and radiation.  Then, in July, I had an about-face and a CT scan revealed that several lung tumors were shrinking or just going away.  I'm trying not to obsess on the results of the next PET/CT on September 13th, but I'm sure you can guess how that's going. 

In the meantime, I've been continuing my quest for answers.  The Human Genome Project began 10 years ago, and the research to predict a person's predisposition for illnesses based on genetics has exploded.
The last decade has revealed the transformative power of using genomic information for the diagnosis and treatment of cancer....  Determining the presence of specific genomic variants also avoids the implementation of ineffective treatments.
 In 2009, just before I was diagnosed with leukemia, a Swedish study found that a fusion of the MYB and the NFIB genes cause ACC (regardless of whether is occurs in the head/neck or the breast).  Since then, targeted therapies have been developed and several more are in the pipeline.  Targeted therapies are not chemotherapy.  They are agents that attach to receptors on cancer cells and turn off the growth, some even kill the cells.  A few clinical trials have emerged for these drugs to treat metastatic ACC, but participation can mean significant travel expenses and harsh side effects, making travel even harder.  It's a huge commitment to receive treatment with a study drug that is so new (no trials for ACC are more than two years old) and unproven.

Enter: Tumor Profiling.  Because of the advances of the Human Genome Project, the price of genetic testing has been driven down.  Cancer patients can now submit slides of their tumors (made during surgery when the pathologist determines a diagnosis) to an outside company to be tested for genetic abnormalities.  The results not only tell people what cancers they are predisposed to, but what clinical trials are available for those particular cancers.  A person can then decide which trial is likely to work, rather than just hoping that they choose the trial with the right drug that might save them.

As a friend recently told me, "Forget everything we knew about cancer treatment and research prior to ten years ago.  Everything will now be based on a person's specific genetics.  This is the future of medical science."  He's right.  The research I did on private companies identified by the Adenoid Cystic Carcinoma Research Foundation (ACCRF) does not pertain just to ACC patients, but to ALL cancer patients:

Foundation One -- They test for 236 known cancer genes.  The cost is $5,800.

Personal Genome Diagnostics: They have two tests. One tests for 120 cancer genes. This test is $4,800. The other test is for 20,766 cancer genes and is $12,500. They are associated with Johns Hopkins in Baltimore.

Oncopath: They test for 159 genes.  They wanted me to tell them which genes to test for, after which they would give me a quote.

Since research on genetics is happening so fast, I decided to wait to have my tumors profiled so that the test I choose will capture as many cancer genes as possible.  It only takes a few weeks to get the results from these companies.  All three have very nice staff and offer assistance with insurance coverage.  For many cancers, genetic testing is covered.  But the latest research on ACC and the need for genetic testing is so new, my best outcome would be to try and have this expense covered with out of network benefits.

Another newly discovered resource in my world is an online support group associated with the Adenoid Cystic Carcinoma Organization International, ACCOI. This all volunteer organization is incredibly helpful for ACC patients.  Over 1,400 people have joined the patient website, sharing their experiences, support and suggestions.  ACC is horrific because it is so rare and misunderstood.  It doesn't behave like most head/neck cancers and for me, it's not classic breast cancer either.  It's its own beast and because no known chemotherapy works, it's incredibly hard to find doctors who understand what it is, especially in remote parts of the world.  This group is to me what Facebook is to so many others.  I've "met" people from around the world and learned a wealth of information.  I even learned of four other people who have metastatic ACCB.  (You may not think that's a lot, but it is.)  I also learned of some very interesting connections between ACC and the Acute Myeloid Leukemia I had.  I'll save that for another post.  I have yet to find anyone on the site who has had a stem cell transplant.  As far as I know, I still hold the world record on that one.

As I face this next set of tests, I'm somehow comforted with all this new and overwhelming information. I feel like I have more tools, more weapons and more soldiers who are fighting at my side.  I think that the old paradigm of taking decades to bring drugs to market has changed.  This is hopeful for all patients with serious illnesses who are running out of time.

Genetic testing is no longer limited to familial connections.  It goes way beyond baldness and eye color.  No matter how much it looks like science fiction, genetics is providing a road map for survival, a road map for cures. It's all in the genes.


Saturday, July 20, 2013

The heat is down, and Whac-A-Mole is on hold.

I have a confession to make:  I really don't like the summer.  I blame the desert.  Growing up in Arizona, one grows to dread the seven months of summer, April - October.  Now that I've fled to New Jersey, I get cranky when a seven day heat wave blankets half of the country, leaving us all collectively miserable.  Nonetheless, my spirits are high, not only because I'm listening to thunder usher in cooler temperatures.

The roller coaster of Cancer World took an unexpected turn last week.  As I headed out of town last Tuesday, in 100+ degree heat with 70+% humidity, I headed to the Baltimore airport to pick up Mary, who was flying in from Pittsburgh to be with me for one of an estimated three RFA procedures this summer.  I wasn't sure exactly which tumor Dr. Hong would go after, or even which lung would be invaded.  It didn't really matter because I knew that I had several tumors to Whac in this never ending game of Whac-A-Mole.

We arrived at Johns Hopkins Hospital on Wednesday at 7 a.m.  By 9:15 I was finally rolled into the OR and prepped for surgery.   Dr. Hong, ordered a CT to see just how things were looking and I waited to find out the plan.  He appeared out of nowhere and said, "I don't see anything to treat!"  Wondering if I was in an anesthetic stupor, I just stared.  "How is that possible?"  Dr. Hong said that several of the "hot" spots on the PET scan, only six weeks ago, have become smaller and some have disappeared.  He said that there are still two spots in my right lung that he's watching, but the other spots were probably either scarring or inflammation from prior ablations or radiation treatments.  He literally said the words, "Things look great!"  This, of course, doesn't mean "disease free," but I'll take it.  "Does this mean I can eat breakfast and go back to bed?"  We agreed that I should return in September for another set of scans.  I practically ran out of there and Mary and I celebrated over waffles.

We drove back to Karen's house, always Command Central for my Hopkins visits, packed up our bags, I dropped Mary at BWI where she took an early flight back to Pittsburgh, and I drove back home.  Whether it was the heat or relief/gratitude/shock, I've been sleeping 10-13 hours a night since I got back.

What about that tumor on my rib I mentioned in my last post?  A few weeks ago Dr. Hales called me and said that he decided I should only have one big radiation treatment to the rib instead of 4-5 smaller ones.  This would be less risky if I need to have more radiation in the future.  He had a last minute opening the next day, so on June 28th I did a same day round trip to Baltimore and got a blasting dose of radiation to kill the rib tumor.  Thankfully, there were no side effects. 

With a reprieve, however long it lasts, from the game of Whac-A-Mole, along with cooler temperatures, I guess I'm going to have to rethink my feelings about summer.  Also, my friend Jim is doing great after his stem cell transplant.  At the tender age of 70, he will soon reach his 100 day milestone and in Transplant World, that's a big deal.  He started Maplewoodstock 10 years ago, a two day music bash in Maplewood in the spirit of Woodstock.  Jim is an unstoppable bass player and I was so happy to see him at this year's celebration.  Plus, another friend who had a PET scan the same day as my non-ablation, received a clean bill of health -- another huge relief.  For those of us who live from PET scan to PET scan, or blood test to blood test, having a break in the action is everything.  It's like a cool rain after a heat wave.


Sunday, June 23, 2013


You've played the game before.  The one at all the county fairs where you whack the gopher-like mole that pops up randomly with a big rubber mallet.  As the game goes on, the mole pops up faster and faster and you have to keep whacking it down before it appears somewhere else.  By definition Whac-A-Mole is a repetitious and futile game.  "After a designated time limit, the game ends, regardless of the skill of the player."  Such is the game I've been playing as I try to stay ahead of the tumors of the original cancer, Adenoid Cystic Carcinoma of the Breast (ACCB).  [ACC is a glandular head and neck cancer, but sometimes, very rarely, it will appear in breast glands, as it did with me.  ACC grows so slowly, chemotherapy doesn't work.]

I had a PET/CT in early June to answer a number of questions.  The outcome was mixed:  1.  Did the radiation I had last winter on the hilar tumor (the super dangerous spot) in my right lung work?  Answer:  From what we can tell, yes.  Yeah!  2.  Did the cryoablation I had last winter on the kidney tumor work?  Answer:  From what we can tell, yes.  Yeah!  3.  How fast are the five or six tumors in my lower right lung that have not yet been treated growing?  Let me pause for a moment to admit that this is the first time I'm mentioning this.  I didn't mention it in the Wrecking Ball post of February 25th because it just seemed too overwhelming.   There's only so much bad news a person can take, and problems 1. and 2. were more urgent than problem 3.  We didn't rush to treat these spots because they were relatively small, and we wanted to give me a chance to recover from this last year of treatments (surgery, radiation and ablations).  So, what's the status of these spots?  Answer:  Gone!  What?  Yep, they apparently were either a slight infection or inflammation or both.  That's the confusing thing about PET/CTs.  They show anything that "lights up" from the nuclear injection, which  can be cancer, infection or inflammation.

So far, so great!  I couldn't believe that the planets were aligning. Well, some were and some weren't.  PET/CTs don't pick up everything, especially if spots are small, and the last question was a big one.  4.  Is there anything new?  Answer:  Yes. There are several tumors (at least six) in the lining of my lungs, called the pleura, that were too small to declare as cancer with the last set of scans in December, and some that are being seen for the first time.

Given the history of this game of Whac-A-Mole that I've been playing since the lung tumors first showed up in 2006, my doctors believe that there are more tumors in between those picked up on the scans.  I'm forced to admit that this logic makes sense when I think about what happened with the lung surgery I had last August.  My surgeon planned to remove two tumors that we could see on the scans.  When he went in, he found eight more that we didn't know about. Instead of removing two tumors, he removed ten.  And yes, I failed to mention that before now too.  It just seemed, when I said it out loud, that people would think that I was one step away from hospice, and I knew I had a lot more Whac-A-Mole left to play. 

However, the game is getting faster.  Over the last month or so, I've been feeling pressure in one spot in my chest over my heart.  The pressure turned to soreness and then increasing pain.  It turns out that I have a tumor in my first rib.  When the game itself moves, it's harder to keep up.

What's the plan?  Well, I'll be using two mallets to keep whacking at the moles over the next couple of months.  The rib tumor is best treated with radiation, while the pleural tumors in my lungs are best treated with radiofrequency ablation (RFA).  After two trips to Johns Hopkins and several discussions with my doctors here and there, the plan is for me to start radiation to the rib on July 12th for 5-7 treatments (business days) and to have an ablation (a same day procedure) on one of the biggest lung tumors on July 17th.  Once I get through that, we'll figure out the other ablations that we think need to be done now (not all of the six we know about are big enough yet to ablate).  I'm hoping that Hope Lodge will have room for me again, where I can work remotely while getting these treatments.  The side effects will be almost none.  I'll be very tired a couple of weeks after the radiation, but the pain in my chest will be gone and my seat belt will no longer be uncomfortable.  The RFA will only slow me down for a couple of days.  I might get a temporary cough later, but it's a small price to pay for killing a lung tumor. 

That's the short term plan:  Keep playing Whac-A-Mole.  The long term outcome may appear grim, but maybe not.  A few years ago a Swedish study (we'll get to the Swedes later) found a gene fusion that was determined to cause ACC.  It involves the MYB oncogene that was found to be altered in most ACC patients.  Knowing what causes ACC allows researchers to try to target ways to "turn off" that gene so that tumors stop growing and new ones can't develop.  The Adenoid Cystic Carcinoma Research Foundation describes several clinical trials that are testing new drugs to do just that.  Since ACC doesn't respond to chemotherapy, these "targeted agents" are the best shot at controlling this cancer systemically, instead of wearing patients down with the never ending Whac-A-Mole game.

My long term plan is to stay ahead of the game long enough for something to come down the pipeline that turns off the MYB gene alteration.  The clinical trials going on now are still too dangerous for someone like me (a transplant patient) and the side effects are very toxic.  Thankfully, the doctors at Hopkins understand all this and are willing to keep treating me, one tumor at a time.  Given that this is my third recurrence in a year and that my total tumor count is 25+ in my lungs, one in my kidney and now one in my bones, most doctors would give up on me.  Most employers would too, for that matter.  But my doctors and my firm are amazing and they have seen for themselves that I'm pretty lucky with Whac-A-Mole.  It has nothing to do with skill.  It's all timing.

I have to believe that there's a reason there was so much good news in these latest scans mixed in with the bad.  If it was all bad, the game would be over, which is unacceptable now that I have new introduce-Springsteen-to-my-family goals to achieve.  In addition to bringing Mary's family to a Pittsburgh concert, I now have obtained consent to bring my Swedish relatives, the Lundbergs, to a Stockholm concert.  Distantly related in ways I never remember, this lovely family promised to come with me when Bruce plays Stockholm on his next tour.  Every few years Catarina, Joël, Benjamin and this year, David, visit their US relatives and see a bit of the States.  At dinner the other night, they were so intelligently optimistic, with faith, compassion and a complete lack of fear for my future, I decided that in my next lifetime, I want to come back as a member of that family.  They reminded me that assuming good things will take place in the future is the best way to cope with a seemingly endless game of Whac-A-Mole.  If I can just slow it down, maybe more Swedish scientists will find a way to pull the plug on the machine all together.  They were smart enough to find the cause of ACC, after all.  And let's not forget about the invention of Swedish pancakes.


Sunday, April 28, 2013

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.



Monday, February 25, 2013

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 7th, 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 15th, 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 5th, had the stent placed on the 7th, and the cryoablation took place on the 8th.  Cathie helped me move back home on the 10th, I worked from home on the 11th, and returned to the office on the 12th.  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.