High Hopes

Happy New Year, everyone!  I hope that you all started 2014 with laughter, gratitude and health.  I have high hopes for this year and beyond.  Last year was bittersweet.  A year ago last month I learned that so much cancer had emerged, my doctors at Johns Hopkins had a hard time determining which organ to treat first.  After a tough January/February in Baltimore and more radiation in late June, I was pretty sure my luck was running out.  Then, by late summer, the tumors in my lungs were inexplicably stabilizing, shrinking, or falling off the radar all together.

I find it wonderfully helpful that Bruce Springsteen unknowingly follows my ups and downs with the release of his albums.  Wrecking Ball was timed perfectly with the wrecking ball that hit me last winter (see my Feb. 25, 2013 post).  This month Bruce released High Hopes, just as I try to manage my scan-xiety over the next set of scans at Johns Hopkins on February 7th.

My high hopes for 2014 are not just for me, but for all my Adenoid Cystic Carcinoma (ACC) brothers and sisters.  As many of you know, ACC is a slow growing, persistent cancer that can either go to sleep, hide or grow aggressively at any time.  For those of us who have experienced all three, we live life in the present, from one scan to the next.  I'm cautiously optimistic that my unique status as a bone marrow transplant recipient will prove my theory as to why things turned around for me (see my Sept. 14, 2013 post, N=1).  But for other ACC patients, this is not an option.

Since ACC is so rare, it is vastly underfunded.  The fastest, most effective way to stop this unrelenting disease (people commonly fight for decades) is money.  Well, it just so happens that the Adenoid Cystic Carcinoma Research Foundation, ACCRF is holding its annual fundraiser in the Boston area on March 8, 2014.  ACCRF is making incredible strides toward finding a cure.  They are working with the NIH, building scientific research boards and establishing global research agendas.  The event will be one for the record books and I'm really looking forward to it.  Please visit my fundraising page to learn more about the event and make a donation. 

Last year I joined an online discussion site through the Adenoid Cystic Carcinoma Organization International (ACCOI) -- sister organization of ACCRF -- an all volunteer group that sponsors a global community of ACC patients who share information and support.  Before joining this group, I found very few ACCers on my own.  I didn't really know about the experiences of having ACC first appear in the head/neck, where cancer can start in any gland in the face, neck or throat and travel from there.

Some of the people I've met online have gone through, or are currently managing, unthinkable obstacles.  (Since my cancer started in the breast, I was spared a lot.)  I've never seen a group of people hold each other up, push each other forward, and offer advice and experience that cannot be found anywhere in the medical community.  From Malaysia to Switzerland, China, Australia and all over the US, these people are wise beyond words, inspiring and unthinkably brave. Prior to the fundraiser there will be a patient meeting, where everyone can meet each other and learn of the latest research.  After 13 years, I will finally attend a meeting with others who understand the issues I've faced battling a cancer that few doctors have even heard of. 

I'm very hopeful about this year.  We're getting close to finding a cure, I can feel it. The ACCRF is making incredible alliances with researchers all over the world and I'm excited to see what comes of the exploding world of genomics in medicine.  I was not so hopeful this time last year.  I was nervous about living alone, upcoming treatments with unknown side effects, and my failing attempts to train my cat to be my personal assistant.  That last one hasn't changed, but today at least, I'm in a good place.  Signing up for satellite radio with the 24 hour Springsteen channel -- E Street Radio -- was also good for my psyche.

Looking forward to all good things.

Kathy 
CANcer + HEALth = CAN HEAL

Milestones

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.



Kathy
CANcer + HEALth = CAN HEAL

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.

Kathy
CANcer + HEALth = CAN HEAL

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.

Kathy
CANcer + HEALth = CAN HEAL

Whac-A-Mole

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.

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

I did NOT see this coming.

“To be fully alive, fully human, and completely awake is to be continually thrown out of the nest.” Pema Chödrön  (Thanks, Georgette, for the amazing quote.)

I must be fully alive, fully human, and completely awake all right, because in the last two weeks, I was tossed out of the nest, again. I thought I was used to crashing and burning, eating dirt, and having to triage my wounds. But you never get used to it.

On a blistering June 20th, I drove down to Baltimore to ready myself for a follow up PET/CT (a combination of two scans) with Dr. Georgiades at Johns Hopkins Hospital. After the test, Dr. G. gently informed me that there were four new "hot spots" that now need to be treated. "Hot" usually equals cancer. "We need to make a plan," he said, seeing me deflate before his eyes. "Yes, a plan," I echoed. I did not see this nest-tossing-splat-on-the-ground coming. 

Let's recap: Before the days of leukemia, you may remember that my fight was limited to a head and neck cancer that appeared in a gland in my breast in 2000 (the treatment for which gave me leukemia nine years later), called Adenoid Cystic Carcinoma of the Breast (ACCB). Ten metastatic tumors were found in my lungs in October 2006 and after one left lung surgery and four radiofrequency ablations (RFA), they were all either removed or killed. I was back in the nest for awhile.

Fast forward to today:  We had been watching one left lung lesion that grew a little since 2008, so I scheduled another RFA for the day after my tests, just in case something sketchy appeared. With this new "hot spot" news, Dr. G. ablated one of the spots the next day, and I drove home the day after without so much as a band-aid. It was the easiest surgery ever. But because two of the remaining three are in dangerous locations, he felt RFA was too unsafe, and he wanted me to consult with my surgeon. I negotiated hard, but he stuck to his guns and used the 'ol "it's for your own safety" argument. 

Crushed, I sent my reports and images to my surgeon, Dr. Elmann, and pretty much spun out of control last week waiting for an appointment to make a new plan. Assuming this may require two surgeries, one on the left lung and one on the right, I braced myself for another medical leave from work and months of pain and crankiness.

Today, yes Sunday, I finally met with my Dr. Elmann, and he threw me a curve ball. Last summer, because my immune system had been destroyed and I couldn't fight off infections, I developed a whopping lung infection called MAI (also MAC). Dr. Elmann removed a large mass in September (not the easiest surgery ever), but I couldn't have the super extreme oral medications that some people get because I was too weak, underweight, and my GI track was shot. Dr. Elmann now thinks these "hot spots" are a return of the MAI infection. Cancer and MAI both show up as "hot" on a PET/CT scan and they look the same. They may not be cancer at all!

Finally, a plan:  Biopsy at least two of the hot spots in the left lung to see what we're dealing with.  If the biopsy comes back as MAI, I will begin the super extreme drug regimen (with lots of possible creepy side effects) for 10-12 months with repeat CTs to make sure the spots are going away.

If the biopsy comes back as cancer, I'll have another laparoscopic surgery on the left lung to remove the spots that are in bad locations, and return to Dr. G. for an ablation on the last tricky spot in the right lung. Dr. Elmann actually thinks RFA may be the safer option (I know Dr. G. can do it!), even though it's tricky, because surgery on this lesion would mean removing an entire lobe of my right lung with a gut-me-like-a-fish procedure that I can't even bring myself to describe. That's not going to happen. Trust me on this.  Although Dr. Elmann made me wait a week for an appointment, he's the first surgeon who ever recommended surgery as a last resort. 

I doubt that Pema Chödrön had infection v. cancer in mind when she wrote about being "fully alive, fully human, and completely awake."  Now able to move beyond my imagined injuries resulting from this latest tossing from the nest, I have once again returned from the Dark Side.  The rest of 2012 may suck a little, but at least there's a good chance that these dramas will soon end and I can climb back into the nest for awhile.

Kathy

CANcer + HEALth = CAN HEAL

Forms of Pain and Hope

Here we are, ten years after the 9/11 attacks on the World Trade Center, on our country.  For the past week, two themes emerge in the news coverage every time we look up: pain and hope.  Embedded in these emotions are resilience, survivorship and faith in better times ahead.  These concepts hit pretty close to home for me as I watch the coverage of the 10 year anniversary while recovering from a more extensive lung surgery than I had anticipated.

Because my lungs and medical history are so complicated, my surgeon proposed a lung resection (cutting out the entire mass), rather than an open lung biopsy, as I mentioned in my last post.  This would allow the pathologists to rule out leukemia, the first cancer (ACCB), the CMV virus I had twice, Graft vs. Host Disease which I finally fought off after 4 rounds, and figure out which of the several dozen possible infections had taken over my right lung.

I am so glad to have been scheduled for Friday, September 2nd, rather than Tuesday, September 6th.  I was released from Hackensack University Medical Center that Tuesday, and now I'm that much further from the long days of my Labor Day weekend.  If there is one constant in the universe, it's that nothing is ever simple with me.  Because my 7 a.m. surgery was delayed till about 4 p.m., Mary was able to make it from Pittsburgh in time to tell me, as I woke up in recovery, that all went well and my surgeon was very happy.  After removing the entire mass, which was the size of an orange (!), he reported that no cancer was found and it was definitely an infection.  We were all pretty sure that this wasn't cancer, but still, no cancer!  The events that followed only make for a good story, in light of the big picture.  But a story is still a story. 

I was doing so well after the surgery, I was sent to a room rather than the ICU.  The next morning when the nurse helped me into a chair, things went south.  Now, some of you know that I have fairly low blood pressure, and I faint easily.  I warned the nurse that I was getting dizzy and nauseous and down I went.  I fainted twice, and at some point, my heart stopped for 3 seconds.  I woke up to 10+ people working on me, and a high speed dash to the ICU, during which, as warned, I tossed my cookies. I felt as though I was living a scene from Grey's Anatomy.  After receiving all kinds of treatments, tests and machinery hook ups, the "episode" as it came to be called, was topped off with having the giant sticky pads slapped onto my chest "just in case they needed to use the paddles."  Of course I was fine within an hour or two, but I had sealed my fate.  I was confined to a small ICU room for the next three days, unable to get out of bed without a massive production of machinery management.

In the meantime, I struggled to deal with pain of the surgery and the chest tube that was sewn into my side for three days.  These problems were somehow worse than the left lung resection I had in 2006 to remove three of the ten masses that were found to have metastasized from the first cancer, ACCB.  (Ah, you forgot that this is all a repeat performance, didn't you?)  In 2006 I was a lot stronger, had a normal immune system and weighed at least 20 pounds more that I do now.  I suppose that explains it. 

The other issue was the puzzle to diagnose this infection.  Ruling bad things out provides tremendous relief, but there are so many possibilities as to what the mass actually contained, I now have to wait for more tests to come back and cultures to grow.  While in the hospital, precautions were taken, on the very small chance I may have something infectious, and as Betty noted, "this is turning into an episode of House."  Best case scenario:  I have something that requires no more treatment, and the surgery removed the problem completely.  Worst case scenario:  I have something that may require a bunch of medications for 6 months - 2 years before this is finally over.  In any case, treatment is not urgent, especially since the mass was first detected in May, so I'm just concentrating on healing from the surgery.  (Honestly, I have little choice in that regard.)

As I tend to the wounds from my latest battle, I am humbled by the courage and strength of those still struggling with the pain of 9/11.  Pain and hope come in many forms and we are all warriors at one time or another.  My heart goes out to all those whose lives were destroyed by the attacks 10 years ago -- those who survived, those who lost loved ones, and those first responders now dying of cancer who have become invisible to politicians refusing to protect their medical needs, insulting their sacrifice and their faith in a system they served with loyalty and dedication.

Perhaps we can take this weekend's lessons to celebrate the good that comes from tragedy (as it always does) and pledge to right the injustices that still linger.  Pain and hope.  There's no escaping them.  Thankfully, we have control over how we respond to them.  I marvel at the human spirit that binds us as a people to protect each other in times of crisis.  Here's to that spirit. 

Kathy

P.S.  Don't forget to sign up or donate to the Lowenstein Lights the Night team or my personal homepage.  Thank you for all who have done so already!

CANcer + HEALth = CAN HEAL

Change of Plans

At the beginning of my last post, I posed the question,

If you have to deal with not so good news, is it better to find out about it and take action when things are  "back to normal" or when things are kind of better but not so great?

The plan for ablating the newly discovered lesion in my right lung on June 15th has been put on hold for three months.  It appears that taking action when I'm stronger and things are, well, closer to "back to normal," is a better way to go.

I took my reports from Johns Hopkins to Dr. Rowley, who reminded me that three things can "light up" on a PET/CT: inflammation, infection and cancer.  Dr. Rowley suspects that the lesion might actually be an infection rather than a tumor, which would be great news!  (I never thought I'd be hoping for a lung infection.)  He also told me that inflammation from a radiofrequency ablation may trigger GVHD.  That would not be good.  Ablating an infection instead of a tumor would also not be good.  He consulted with Dr. Georgiades and they decided that, since ACCB grows so slowly, it's better to ablate when we are able to confirm that the lesion really is a tumor and when I'm not at risk for triggering GVHD.  The plan now is to have a chest CT in two weeks to see, what, if any changes appear.  Because I haven't had any symptoms of infection, I suspect that the new lesion is a tumor, and if it is, I'm off in September for RFA #5 to ablate tumor #8.  In any event, that lesion shouldn't get too comfortable....

Other aspects of my recovery are status quo:  I'm still having trouble eating, my appetite is pitiful, the tremors are coming back as I taper off the steroids for the third time, and I'm still hovering around 93 pounds.  On the upside, I feel like I'm getting stronger, I'm able to do more, and I'm seeing more friends and extended family than I have for the last nine months.  Because my blood counts are so good, it's safe for me to resume some of the things I used to do (like going to church, taking walks, etc.) and this keeps me sane.  I've also been going to support groups, through which I've been able to network with other survivors and learn about projects, research and events relating to blood cancers.

Although my days are busy when I'm feeling well, I'm antsy to get on with it.  Enough with this recovery stuff.  I never imagined that I'd measure my progress by the seasons.  Transplants are hard on people with Type A personalities.  I've never been a very patient patient.  But that's how it is, and I'll get there eventually.  The most important thing is that I'm in remission and I'm getting stronger.  If only someone would tell my tummy!  For now, I have three immediate goals:  recover enough to return to work, get rid of this lung lesion one way or another, and get medical clearance for a glass of pinot noir!  That's not too much to ask, is it?

Cheers!
Kathy

CANcer + HEALth = CAN HEAL

Being One for the Records

If you have to deal with not so good news, is it better to find out about it and take action when things are  "back to normal" or when things are kind of better but not so great? I didn't have much of a choice this week. I received some not so great news on Thursday when I had a PET/CT scan at Johns Hopkins. I learned that I have a new tumor in my right lung. I was surprised and disappointed, but as I've been telling people, one new tumor is better than twelve. I know this sounds strange, but in the grand scheme of things, one metastatic lung tumor, for me, is not really that big of a deal. I know what it is and what to do.

As you may remember (it seems so long ago), 10 tumors were discovered in my lungs in October of 2006. Three were removed surgically, and when the pathology confirmed metastatic disease from Adenoid Cystic Carcinoma of the Breast (ACCB) --  the first cancer diagnoses in 2000 -- the remaining seven were killed with radiofrequency ablation (RFA) at Johns Hopkins in Baltimore by Dr. Georgiades.  (See November 2008 posts.)

When I got my first negative PET/CT report showing "no detectable cancer" in September 2009, you may also remember that I threw myself a Negative PET Scan Party in October to celebrate. Two days after the party I became very ill and drove myself to the ER. The next morning I was told that I had an aggressive form of leukemia (AML) and was given a very grim prognosis. And the games began for cancer #2.  (See 10/22/09 post, Nothing Like a Good Party Before a Storm.)

When Dr. Georgiades showed me an image of the tumor from the scan on Thursday, I asked him why this happened. It was a stupid question. He could have said, "because it's cancer, dummy." But he knew what I meant. If cancer were to show up again, I thought it would be the 2 or 3 little tiny spots that he calls ditzels that we've been watching for the past 3 years and are too small to ablate. Where did this new one come from? He suspects that if I had a cancer seed, which otherwise may have just sat there forever, that seed may have grown into a tumor because I trashed my immune system. It popped up before my new immune system kicked in. It makes sense given the last 1 1/2 years (minus the 5 months I was in remission before the relapse) of being treated with an alarming amount of toxic medicines and chemotherapy, the last of which destroyed my bone marrow permanently.

Here's the positive spin on this new tumor situation: When I asked about the ditzels, Dr. Georgiades told me that they've actually gotten smaller. If I grew a new lung tumor, wouldn't you think that a weak immune system would have allowed the ditzels to grow too? Maybe that means that the ditzels aren't cancer after all. As I've said before, we all have spots on our lungs because our world has become filthy and our lungs are filters, like sponges. A lot of different kinds of junk gets stored up in a sponge over time. Only the spots that light up on a PET scan and grow over time are likely to be cancer.

Plus, I only have one tumor. If I had lots of dormant seeds it stands to reason, like the ditzels, that they would have grown too. Yes, I was pretty bummed out driving home from Baltimore. But mainly, I was upset about having to go through another procedure to deal with cancer, especially now. But knowing what's going on is better than not knowing what's going on. And the tumor isn't going away. Let's just kill the killer and get on with it.

Needing to exert as much control as possible, I called one of Dr. Gerogiades' nurses from the hospital lobby and tentatively scheduled the RFA for June 15th. It's a same day procedure, which I've had four times before, so I don't expect much drama. I'll stay with my cousin, Karen, who graciously puts me up every time I make the trek to Hopkins. A week after the RFA I probably won't have a single physical sign that anything was done -- not even a band-aid at the site. It's a pretty amazing procedure (see 11/2/08 post, Radiofrequency Ablation - RFA).  Anyone new to this blog who is curious about this 10 minute treatment can click here to watch a short video, filmed for the documentary that led me to Dr. Georgiades in the first place.

After all my pre-transplant tests were completed last October, I met with Dr. Rowley, my transplant doctor. He said, "the only thing I'm slightly concerned about is the cancer that was found to have spread to your lungs." "Oh, that" I said, dismissing him with a wave of my hand. "That's completely under control. It grows very slowly, can remain dormant for decades, and everything that's been identified as cancer has been killed. Because ACCB is so rare, you won't find much about it. It only occurs in <.1% of all breast cancer patients and of those it metastasizes in about 6% of the cases. There's only a few of us, maybe a couple of dozen at most since the 1940s." "Yes," he said. "And of those few, how many have had transplants?" "Oh, right. Probably none," I realized, feeling again, like the only one on the planet with my ridiculously rare medical circumstances.  Oh wait.  I probably am the only one on the planet....

Several people have suggested that I write a book.  Who would believe it?  I have a hard time believing it myself.  Being "one for the records" can be a scary thing.  But at a certain point, it also becomes humorous -- one of those "oh, paleez" situations.  I'm determined to win this prolonged battle and use my unique misfortune to contribute somehow to the landscape of knowledge on two very different diseases.  But before I can do that, I need to get off this rickety and dangerous roller coaster once and for all.  On June 15th, I'll be one step closer.

Kathy
CANcer + HEALth = CAN HEAL

Good News Among World Tragedy

My heart grows heavier every day as I watch the events unfold in Japan.  Relief efforts become more and more difficult because of the radiation exposure, and people can't get the supplies and medical attention they need.  The younger generations face a significant risk in years to come of thyroid cancer and, you guessed it, leukemia.  My prayers are with all the people of Japan, but especially the 50 nuclear power plant workers who are trying to prevent further disaster.  They are the martyrs in this tragedy. 

It's hard to celebrate happy things when so many people are suffering.   But I do have reason to celebrate.  My bone marrow biopsy showed "no evidence of residual leukemia," and the chromosome analysis (cytogenetics) shows "a normal male donor" in all cells analyzed.  This means that I am in complete remission and the report could not have been better!  My relief is indescribable.  When I was first diagnosed, my biopsies revealed an abnormal chromosome, the inversion 16 or 16i.  This was seen as a "favorable" marker because people with AML who had 16i did well long term, once in remission.  I was an exception, as usual, and I relapsed.  But when any abnormalities show up, they indicate the presence of leukemia.  I was very happy to read on the report, "no consistent numerical or structural chromosome abnormalities were observed."  Also, another test, called a Chimerism, showed that in the two of the ten blood lines where leukemia shows up (the white cells and the lymphocytes) my bone marrow is 99% converted to a male donor. 

As with any transplant patient with an unrelated donor, I will be at highest risk for relapse for the first two years, then my chances of being completely cured will go way up.  It's possible that some rogue leukemia cells escaped the chemotherapy and radiation, and that my new stem cells don't find them to kill them.  But because I've had two bouts of GVHD (graft v. host disease), and we know that the stem cells are fighting me, we can assume that graph v. tumor is also taking place, and that my new immune system would also kill any leukemia cells it finds. 

My other good news is that the CMV virus, for which I've been treated since late December, seems to be under control, finally.  All medications for this virus are very intense and have terrible side effects (blasting headaches, kidney damage, etc.), but I'm now on pills that I'm tolerating and are working.  In fact, since I don't need long IV infusions of these creepy drugs, the PICC line was taken out of my arm and I no longer have a central line for the first time since November.  I'm free!  This makes me feel less like a cancer patient and more like a regular person.

I'll be completely off the steroids, and hopefully through with the CMV pills, by the beginning of April and by mid April I should feel physically stronger and able to gain some weight.  The progress that most transplant patients experience by three months will take me about five, but with the overall transplant a success so far, I am grateful to be here and to be turning a corner.  I'm looking forward to the next phase of recovery -- physical therapy to regain my muscles, eating non-stop to achieve a three digit weight, taking walks, and building my stamina to return to work.

Cancer is a tough war to fight.  This has been an especially tough tour of duty and it's not over yet.  The battle fatigue is difficult for an impatient person like me.  Sometimes, when I think of all the phases of fighting I've faced over the past ten years, I am reminded of the soldiers who found themselves under the stop-loss policy in the Iraq and Afghanistan wars [the involuntary extension of a soldier's active duty in order to send them back to the front lines over and over again].  I don't mean to compare the two experiences, but the concept struck a nerve.

Overall, I'm optimistic about my future.  I've seen enough of the front lines.  Yes, technically I will always have metastasized breast cancer, although ACCB is not really breast cancer.  But with Dr. Georgiades at Johns Hopkins and his radiofrequency ablation magic, we'll handle that if necessary.  No problem.  I'm committed to living a very long life and dying of something other than cancer. 

I send my thoughts and prayers out to those in Japan fighting their own horrible war.  They too are on the front lines, battle fatigued and scared.  I find comfort, gratitude and respect for the good samaritans there are helping people they don't even know in any way that they can.  I'm also glad to see relief pouring in from so many counties.  Now is the time, as with many times in the recent past, for generosity, compassion and recognition of all the good things we take for granted.

In love and faith,
Kathy

CANcer + HEALth = CAN HEAL

Sometimes we don't really notice just how good it can get.

Rob Thomas' lyrics to the song Someday express the relief and gratitude I've been feeling in the last week or so. My March Madness finally came to an end when I was finally released from Englewood Hospital on March 29th. Yes, all my blood counts, including those stubborn neutrophils, finally came back and are now showing off as normal. That was almost as much of a relief as my next bit of news: The results of the April 16th bone marrow biopsy showed a complete molecular remission - no sign of leukemia or leukemia markers (like the inversion 16 chromosome) at the genetic level! No more chemo! It looks like I'll be able to keep the Gold Medal that the Universe loaned to me when I had my first molecular remission in December. I am happy beyond words and once again feel as though I've been spared a terrible fate. I have also come to appreciate how happy news like this is for Dr. Forte and other committed doctors who work in cancer fields. He told me that outcomes like this are why he is an oncologist.

We agreed that, to be sure of this remission, I should have another bone marrow biopsy in 5 weeks (scheduled for May 20th), after which I can resume my pre-leukemia life. Of course, nothing will be completely the same after such an ordeal. But feeling good, not anticipating illness, and getting back to work will do wonders for my psyche, which, by the way, has survived the wounds of battle and is happy for each new day. That's the scoop for cancer no. 2.

As for cancer no. 1, the Adenoid Cystic Carcinoma of the breast, ACCB, with lung metastasis, I'm doing pretty well there too. I went to Johns Hopkins for a PET/CT this week and there is only one questionable lesion that needs to be watched. One "hot spot" in my right lung lit up on the PET scan, but didn't light up on the CT scan. This is unusual, as CTs are more detailed than PETs, and the area on the CT is vague and undefined. It would be tricky for Dr. Georgiades to ablate with radiofrequency ablation (RFA) because the procedure is CT guided and he needs clearly defined margins to get the entire lesion. We decided to repeat the tests in June to see if there is any change. The other possibility, although remote, is that it's leftover pneumonia from my chemo complications in January. The suspected lesion isn't growing, so there's no harm in making sure it's really cancer before ablating.

[The PET actually showed a second hot spot on my lowest left rib. This was a total mystery because it also did not show up on the CT. Dr. Georgiades thought that this might be inflammation from a cracked a rib because I was sore from working out for the first time in 6 months. This made sense since chemotherapy weakens bones. It turns out that a tiny drop of the radioactive isotope that is injected before the PET/CT somehow got on my skin and showed up as another lesion. Because it was so odd, given my history, Dr. Georgiades investigated the finding with the PET radiologists and discovered that the isotope was outside my body, not inside. He called me today to tell me that this hot spot has been re-designated as "contamination," and not to worry. He's awesome.]

The bottom line is that one small lesion, whether it's new or residual from a previous ablation, is not that big of a deal. It could be a lot worse. Although this was not a totally clean PET/CT, I'm not really concerned. I've reached the point where having to have a tumor burned out of my chest presents more of a scheduling challenge than it does fear of additional cancer. Funny how that attitude has evolved. The leukemia adventure presented so many potentially life threatening challenges that somehow I was able to overcome, I started imagining myself as Jack Bauer on 24. That guy just keeps getting up. With the help of my medical team, I've been able to make it to the end of the day.

Sometimes we don't really notice just how good it can get. At this point in my life, believe me, I've noticed.

Kathy

CANcer + HEALth = CAN HEAL

How Did This Happen? Some Theories

The question, "How the hell did I get leukemia after beating a completely different cancer twice?" bounces around in my brain on a daily basis. Now that I've lived with this diagnosis for 3 months, I've settled in on a few possible explanations.

Theory No. 1
The obvious question is whether the first cancer, Adenoid Cystic Carcinoma of the Breast (ACCB) is related to the second, Acute Myeloid Leukemia (AML).

On October 13, 2009, the same day that Dr. Forte found something terribly wrong with my routine blood tests, and only 6 days before I was diagnosed with AML, I received an announcement about a huge research breakthrough from the Adenoid Cystic Carcinoma Research Foundation (ACCRF). A new cancer gene was found by researchers at the Sahlgrenska Academy in Sweden:

The gene causes an insidious form of glandular cancer usually in the head and neck and in women also in the breast. The discovery could lead to quicker and better diagnosis and more effective treatment....

The research group can now show that the gene is found in 100% of these tumours, which means that a genetic test can easily be used to make a correct diagnosis.

“Now that we know what the cancer is down to, we can also develop new and more effective treatments... says professor Göran Stenman, who heads the research group at the Lundberg Laboratory for Cancer Research at the Sahlgrenska Academy. “One possibility might be to develop a drug that quite simply turns off this gene.”

The newly discovered cancer gene is what is known as a fusion gene, created when two healthy genes join together as a result of a chromosome change.

“Previously it was thought that fusion genes pretty much only caused leukaemia, but our group can now show that this type of cancer gene is also common in glandular cancer,” says Stenman.

That last point didn't seem as relevant to me on October 13th as it was on October 19th when I was told that I have leukemia. In fact, Dr. Forte told me after my first bone marrow biopsy that my cytogenetic tests contained fused leukemia cells. Maybe it's a coincidence, but I'm willing to consider the possibility that there's a connection between two seemingly unrelated cancers that are caused by fused chromosomes.

Theory No. 2
A simple review of the ACCB literature clearly demonstrates that chemotherapy is not recommended because ACCB grows too slowly to respond to chemotherapy. My first oncologist didn't take the time to research ACCB, and relied instead on a well known "expert on breast cancer" for my treatment plan. Together, they decided to treat my cancer "like any other invasive breast cancer," regardless of the fact that this was not typical breast cancer, but rather a glandular cancer. I was given 8 rounds of CMF, a cocktail of three drugs. One of these drugs, Cytoxan, is known to cause secondary cancers, the most common of which is AML. According to the American Cancer Society,

The cancer most often linked to chemotherapy as the cause is a type of leukemia called acute myelogenous leukemia (AML).... Studies of patients treated in the 1970s and 1980s have shown an increased risk of AML after certain types of chemotherapy drugs called alkylating agents were used to treat cancers like Hodgkin disease, non-Hodgkin lymphoma (NHL), ovarian, lung, and breast cancer.

Alkylating agents known to cause leukemia include:
cyclophosphamide (Cytoxan®)....

That "expert," when questioned in 2006 about the bad advice he gave my first oncologist in 2000, predictably denied ever recommending CMF. Needless to say, I switched oncologists and started going to Dr. Forte, who understood the nature of ACCB because he made time to do the necessary research. This is an example of why it's so important that we participate in the research process and not rely on one or even two doctors to decide something as life altering as cancer treatment.

Theory No. 3
From 1957 to 1975, Motorola Inc. used the degreasing agent trichlorethylene (TCE) to clean electronic parts made in its south Scottsdale, Arizona, plant. In early 1975, a significant amount of TCE had been dumped into the area around the plant and TCE had contaminated the groundwater. The area was identified as a Superfund site in 1983. My family moved to south Scottsdale, to the middle of the Superfund site, in 1967 when I was 7 years old. I lived there till I was 18. My mother, also a cancer survivor, still lives in that house. I'm told that the number of cancer cases in that area over the last several decades is staggering. (No liability was found in either the personal injury or the property damage class action suits.)

Research shows that AML can be caused by exposure to benzene, and there are plenty of lawsuits to back that up. Benzene finds its way into many Superfund sites because it's used in the manufacturing process of so many products. Who knows if growing up in the middle of the south Scottsdale Superfund site had anything to do with either of the chromosomal fusion-based cancers I've been fighting? It certainly didn't help.

Theory No. 4
All of the above.

Theory No. 5
None of the above.

The question, "How did I get cancer?" is one that haunts all cancer survivors. We wonder if there was something we did wrong, something we should have seen earlier. The fact is, cancer is random. It doesn't discriminate. All I can do at this point is focus on Theory No. 1 -- the new gene discovery that holds the most promise, hope for future answers and possible treatments for the cancers I've been dealt. In the meantime, we are obligated, whenever possible, to share our knowledge, our mistakes, and the resources we've stumbled across in our attempt to navigate these scary waters. Such is our task, as we put aside the question "Why?" and try to discover the good that can come from something so evil.

Kathy

CANcer + HEALth = CAN HEAL

Every Team Needs A Captain

One of the many things I am grateful for, this Thanksgiving season and every day, is the relationship I have with my oncologist, Dr. Francis Forte from Englewood, New Jersey. I met Dr. Forte in the Fall of 2004. My previous oncologist stopped accepting Aetna and I had to find someone new. Finding a new cancer doctor when you have been diagnosed with an extremely rare disease is like looking for a parent. The fit has to be a good one. I met an amazing woman at my support group who spoke of her oncologist as though he were a member of her family. Phyllis and I met toward the end of her battle with breast cancer, but she made an incredible impact on me. (To this day I sometimes ask myself, “What would Phyllis do?”) By the time Phyllis was diagnosed with breast cancer, she had already broken a bone from metastatic disease. Most thought that she has a very short time to live. Under the care of Dr. Forte she lived for 6 ½ more years. I consider Dr. Forte to be a gift from Phyllis.

In October of 2006, when 10 nodules were found in both of my lungs, I had part of my left lung removed (a lung resection). When I was told that my cancer has spread and was now officially incurable - Dr. Forte understood the shock, fear and panic that took over me. But he went to work. He said that we wanted me to go to Memorial Sloan Kettering Cancer Center in New York to confirm the diagnosis. And he asked me for a little time to research how best to treat me. When he called a few days later to say that ACCB doesn’t respond to chemotherapy, he described the research that I later found in my own search for answers. Because it grows so slowly, by the time the cancer cells divide and grow, any presence of chemotherapy has already left the body. Dr. Forte said that if my tumors grew too much, additional surgery would be the next step, although we didn’t think that this would be necessary for many years, if at all.

To prepare for my consultation at Sloan, I made a binder of my research and I gave a copy to Dr. Forte. Since then we have become partners, in a sense. He’s still the Captain. I don’t make a move without his blessing. But he understands my need to understand my cancer – however little information there is about it. He read the binder, and with his 40+ years of experience, explains things to me that help me to feel in control.

When I learned 6 months ago that my tumors were growing, I was devastated. I was doing everything that Sloan recommended, eating right, exercising, taking alternative treatments and supplements recommended by my biochemist and nutritionist, and was convinced that the tumors were at bay. Dr. Forte saw my face as I looked at the CT report, and immediately said, “Didn’t you see something on TV about a technique that burns the tumors out one by one?” Thus began my voyage into the land of RFA.

Having snapped me back into Take Action mode, I did more research, this time on alternative cancer treatments. I made another binder and again, I gave a copy to Dr. Forte. This time the binder contained research that was pretty far out of the box. I thought that I’d have to make a pitch for his approval to try some of the treatments. Instead, he did not object to anything, as long as it didn’t hurt me or damage my immune system. I found myself saying, “Are you sure?”

Oncology is the science of cancer drugs. I can’t take cancer drugs. Dr. Forte could have done what some doctors have done to me. He could have wished me the best of luck. But instead he develops strategies with me. He listens. He asks me how things are going in the rest of my life. He tells me that I'm doing a good job. A few months ago he said, “I have learned a lot from you. I only hope that I can be of some benefit to you too.” Can you imagine a doctor saying that to a patient? Who could ask for a better Captain?

Kathy

CANcer + HEALth = CAN HEAL

Radiofrequency Ablation - RFA

When I met with my oncologist this past May and he showed me the CT report describing the growth of my lung tumors, he reminded me that I told him of a technique last year that kills tumors one by one. “Maybe it’s time to pursue that,” he said, just before panic set in. I went through my DVR recordings and found the Discovery Channel special, Living With Cancer, that I mentioned in my October 26th post. Leroy Sievers had a procedure called a radiofrequency ablation, or RFA, performed on camera, and that procedure has influenced my cancer status dramatically. There is quite a lot of information about this procedure online (a basic Google search will bring up volumes), but few patients know about it, and were it not for Leroy, I wouldn’t know about it either.

I researched and found the doctor that performed three ablations on Leroy, and I went to see him. His name is Dr. Christos Georgiades and he is at Johns Hopkins Hospital in Baltimore. At our consultation, Dr. Georgiades said that he could ablate all 8 of my tumors. My relief was indescribable. Although it may be uncommon to ablate as many as 8 tumors in any one location, he recognized that, because Adenoid Cystic Carcinoma of the Breast (ACCB) grows so slowly, RFA could be of tremendous benefit to me. The doctor I saw on TV was telling me, basically, that he could save my life – or at least prolong it for a really long time.

There was just one problem. Although most of the lesions were on the periphery of my lungs, one was right next to my aortic arch – the superhighway of my heart. In his interview with Ted Koppel, Dr. Georgiades said, “There are limitations. For example, if a part of a tumor is too close to a critical structure like the heart or a major blood vessel, we may not be able to perform this procedure.” After consulting with thoracic surgeons from two hospitals, I was told, for different reasons, that surgery to remove this tumor was not an option. And since surgeons don’t want to operate if all the cancer can’t be removed, they wished me the best of luck. But Dr. Georgiades saw a way to safely perform the ablation without risking a “catastrophic complication” with the superhighway.

On August 28th, I had my first RFA procedure. Dr. Georgiades ablated the tumor by my aorta and another one in my right lung. This was done under a live CT machine with a needle that carries very high frequency electricity and essentially burns away the tumors along with a small margin of tissue. I was under conscious sedation and I was in no pain. I was sore for a few days, but I was able to return to work quickly with almost no discomfort. It takes several months for the inflammation to recede completely, but I’m confident that this procedure was successful. On November 4th, I returned for a second procedure to kill the two remaining tumors in my right lung. Again, I was feeling almost 100% recovered after a few days, and I can’t even find the marks where the ablations occurred. I’m scheduled for a third RFA, this time on my left lung, on November 18th, after which I will only have two tumors left.

Here is what I learned since pursuing RFA as a treatment option: Interventional Radiology (IR) is a new field of cancer treatment that offers RFA for tumors in the lungs, liver, bones and kidneys, as long as they are smaller than 3 or 4 cm. This procedure can be a life saving option, especially for patients who cannot have surgery. In addition to RFA, interventional radiology offers a number of minimally invasive techniques that have the potential to change the face of cancer treatment in the next few decades. It’s important to find an interventional radiologist who has done this a lot and knows the techniques well. Often these doctors are not marketed by their hospitals very well, so patients may need to do some research to find them. Some insurance companies may not cover IR techniques because they are still relatively new. But I am lucky that my health insurance covers RFA procedures and that Johns Hopkins accepts my insurance, which is Aetna.

After many tests and scans, I’ve been told that the lung tumors are the only detectable cancer in my body. But eliminating them doesn't eliminate metastatic disease. I still have to figure out how to curtail the metastasis and send it into dormancy. No one really knows how my cancer spreads, so this is a big project. At first I thought it was arrogant to think that I could rein in metastatic disease when my cancer only occurs in a handful of people worldwide. But as I stumbled upon various medical practitioners and scientists who not only offer their expertise, but actually listen to what I have to say and respect my choices, it doesn’t seem so crazy anymore. Dr. Georgiades is one of those people, and I’m very grateful to him and his staff.

Kathy

CANcer + HEALth = CAN HEAL