Some steps forward, some steps back?

The phrase "___ steps forward, ___ steps back" changes for me nearly on a monthly basis.  Last month, with the discovery of breast cancer, I would have said "one giant step back."  But the surgery went well, I was in the hospital only one night, and the pathology results showed that the margins were clear with no sign of lymph node invasion.  

For those of you who speak Breast Cancer, I was triple negative for hormone receptors, meaning that chemotherapy would not give me a leg up on long term survival.  With radiation off the table, I don't need any additional treatment.  In my book, this is the best outcome I could have hoped for.  As I told my ACC friends, one less boob, one less cancer.  A few steps forward.  

Time to turn back to ACC and the ongoing game of whack-a mole.  I had a PET/CT here in NJ as part of my pre-op testing, and sent the scans to Dr.s Hong and Hales at Hopkins for their review. There were some wacky findings in wacky places, making it hard to come up with a clear plan of treatment.  We decided that I should come to Hopkins for consults and physical examinations of these wacky places.  

Both doctors are "happy" with the overall state of my lungs right now.  But their definition of "happy" is not the same as mine.  The "multiple bilateral pleural nodules" numbering anywhere between 8 and 20, depending on the accuracy of the scan, are either stable or growing slowly.  This means that treating them with RFA, cryoablation or radiation is not needed right now.  So is this a step forward or a step back?  I'm not sure where to put my foot.  "Just because a nodule might be big enough to treat doesn't mean we need to treat it now."  This goes completely against my OCD if-you-can-see-it-kill-it mentality.  The truth is, these nodules need to be monitored over time to make sure some aren't inflammation from prior treatment.  Also, I need time to rebuild my stamina between assaults, such as an out-of-nowhere mastectomy.

In the meantime, an area of cancer revealed itself in an area behind my left kidney and under my diaphragm, called the retrocrural space.  Apparently, this is soft tissue that holds the organs in the abdominal area together.  Seriously?  I have more cancer just randomly hanging out in the neighborhood of my diaphragm?  Because I have fairly serious scoliosis, it's hard to get a fix as to the boundaries of this thing.  Some of the area that is not "hot" on the scan could be muscle that is twisting around my spine to compensate for the scoliosis.  Because of this, we decided that Dr. Hong would cryoablate the smaller, more defined part that is clearly cancer, and wait to see how the rest of the area responds over time.  If necessary, Dr. Hales can radiate whatever is left that we can definitely determine is cancer rather than muscle.  Since ACC is a gland cancer, I asked if there are glands back in this area.  Basically, there are glands all over, and scans just can't illuminate if this is in a gland or not.  Metastatic disease sometimes shows up in lymph nodes in the retrocrural space.  Bottom line:  it's lighting up, it's growing faster than anything in my lungs, and it needs to be killed before it gets too big to ablate.  Is this many steps back or a small step forward if it turns out to be a smaller, treatable area?  

And if this isn't enough, I noticed a very sore area several months ago over my right kidney.  Eventually, a small bump appeared that is super duper sore.  This is the classic pattern of ACC if it's close enough to the surface to feel.  My radar went off because this is the place where I had a cryoablation for a kidney tumor two years ago.  When I showed the lump to Dr. Hales and Dr. Hong, they were perplexed.  It's exactly over the spot of the 2013 cryoablation.  It's hard to see on the scans, but it's there.  Sometimes there is a very small risk of cancer cells escaping when a biopsy is done or with a procedure that uses a needle to pierce a tumor.  It's called seeding.

This is a controversial topic in research circles.  Biopsies are a standard part of diagnostic medicine and the benefits far outweigh the risks.  But it happens every so often.  Because it's so unusual, Dr. Hong was reluctant to conclude that this lump is the result of seeding.  "How many ablations have you had and you've never had seeding?" he asked me.  "True, I've had 10 ablations, but they killed 25+ tumors.  If one tumor seeded, I wouldn't be shocked.  Plus, the kidney tumor was 5 cm. and took 4 needles to ablate."  There is no data on the rare occurrence of seeding on a rare disease like ACC, so we can't draw any conclusions.  Maybe it's just a random tumor in random tissue, like the mystery cancer near the left side of my diaphragm.  Who the hell knows?  

The question now is how to treat it.  Since this lump is so close to the surface, both RFA and cryoablation are too dangerous (several steps back).  So, Dr. Hong passed the ball to Dr. Hales and I'll be having a one shot dose of radiation to kill this wayward tumor using electrons rather than the usual photons, which is somehow safer.  Some steps forward, as long as it works.

We couldn't have come up with a plan for all this without me going to Baltimore on Friday to talk it out between the three of us.  It was pretty instructive to bounce theories off both doctors and talk about the pros and cons of each option as we went through the scans from head to thigh.  I'll be having the cryoablation to the weird space near my diaphragm on February 27th.  The one shot dose of radiation over my right kidney will be around March 9th.

Less than 3 weeks since the mastectomy, I'm pretty sore all over and wiped out.  I slept 13.5 hours yesterday and 11 last night.  As I hunker down till this freezing weather passes, it's hard to say whether or not I'm moving forward, backward or just treading water.  I just know that I'm happy to have a plan in place, that the breast cancer is under control and that I will still be able to move to Pittsburgh in the spring.  The most important thing right now is knowing that I'm in good hands -- from my medical team to my local and long distance friends to Mary, who is acting as my apartment scout in Pittsburgh.  Rather than looking from month to month, it seems I'm making progress from year to year.  The key is to face forward and hang on tight.  My feet will land where they are meant to land, even if there's a step back every now and then.

Kathy   
CANcer + HEALth = CAN HEAL

10th Ablation and No Free T-Shirt!

One would think that with my 10th ablation I would get something -- a free T-shirt, car wash, crock pot, something.  But no.  Just one less tumor, trying to take over my beaten up left lung.  That's actually quite a lot.  I did get a free overnight stay in a private room on the 11th floor of the Zayed building overlooking the Baltimore City Juvenile Justice Center.  Hey, it was a nice view.  But before I get to that, I have to again apologize for another rerun of previous posts you may have received if you follow this blog by email.  I enlarged the font for several past posts for us "seasoned readers" who can't see crap anymore, and blammo.  Blogspot spit out a couple of updates as if they were written yesterday.  Not so.  Sorry for the confusion.

I had a pretty busy week, starting on Wednesday, September 10th.  I took the train to Pittsburgh for a working vacation.  On Thursday, Mary and I drove around the city looking at potential apartments and neighborhoods for my relocation next Spring.  That was very productive.  On Friday, I went for a consult with a potential local oncologist whom I hoped would meet my rather rigorous standards.  He didn't; it was a big waste of time that could have been avoided had he actually read the letter I wrote him about my needs.  The day was redeemed when we spent way too long at the T-Mobile store upgrading my phone.  I'm pretty happy with my new toy, thanks to Sarah's savvy assistance.  Everyone needs a 16 year old for such life altering events.

Saturday was an Adenoid Cystic Carcinoma Organization International (ACCOI) patient meeting, where five ACC survivors and their family members met over lunch.  It was an amazing group of incredible fighters.  We shared our very diverse stories, treatments, doctor recommendations and tips for navigating the treacherous waters of an unpredictable and brutal cancer.  There was humor, hope and priceless information, not to mention newly made friendships.

 

On Sunday, I took the train to Baltimore and met up with an extraordinary ACC survivor, Michelle, whose feisty strength and grace was contagious and humbling.  I reported to Hopkins at six a.m. Monday morning for a cryoablation (using freezing gas instead of radioactive heat, as with RFA) on a left tumor in my pleura (the lining of my lung).  Everything was going swimmingly, as I shared my preferences for anesthesia drugs and settled onto the familiar OR table.  The next thing I remember is waking up very nauseous, demanding a vomit bin and a hit of dissolvable Zofran.  Then there's a gap.  I woke up again, feeling much better and was told that Dr. Hong was going to admit me due to a complication that occurred in the OR and because I "looked awful."  I forgave him and asked about the complication.  Apparently, I bled into my lung, which can be hard to control, serious and just not good.  I went into a coughing fit, under sedation, and coughed up most of the blood.  I assume I wasn't getting zapped at that particular moment.  Whatever I swallowed came up during the gap in my memory while in recovery.  The only evidence I had of any of this was my already chronically sore ribs were very painful from coughing.  How I avoided a pneumothorax (collapsed lung) during this drama is beyond me.  Thank God I was at Hopkins, is all I have to say.

Bleeding is an extremely low risk for these procedures.  They happen so rarely, patients aren't even quoted a percentage when being told of the risks.  Truth be told, I may have brought this on myself.  You know when the pre-op nurses call to tell you to stop taking any NSAID or asprin products 7 days prior to surgery to avoid bleeding?  Well, I kind of forgot about that until 2 days prior to surgery.  Note to self!!

The ablation itself was successful, notwithstanding the added adventure.  I was discharged the next morning, took the shuttle to my hotel, packed my stuff and caught the 2:46 train to Newark.  Pretty productive week, right?  Because the pleura is a hotbed of nerves, avoiding nerve damage is nearly impossible.  I feel pretty sore and since the ablation site is just above my heart, I will be tucking my seat belt under my left arm for a while.  And, of course, my left rib cage is very unhappy.  Could be worse, lots worse.

So what's next?  My right lung seems to be behaving.  My left lung is the problem child.  Near the site of this ablation, cancer is causing a thickening of the pleural space such that an ablation isn't the best option for treatment.  Radiation would be able to treat the area all at once.  So I'm waiting for Dr. Hales to call with a treatment plan.  Assuming Hope Lodge has room for me, I'll be spending some time in Baltimore, probably next month.  Aside from the obvious frustration that another battle is in sight, I'm just hoping that the net nerve pain at the end of it all is not worse than it already is.  Now that I don't work anymore, I have way too much to do with ACCOI and planning my move to Pittsburgh.  

Keeping my eye on the big picture, today is yet another milestone for me.  I was first diagnosed with ACC 14 years ago today, about a year after moving to New Jersey.  Just like ablations, there is no prize for surviving another year.  The reward is staying alive to fight with others for knowledge and a possible way to turn this cancer off.  In between the battles, there are fun times to be had, friendships to forge, and bridges to cross.  It's not like I need another T-shirt anyway.  

Kathy

CANcer + HEALth = CAN HEAL

More New Beginnings

On November 17, 2010, when my new bone marrow came to live with me, one of my transplant doctors wished me, "New beginnings!"  (See December 5, 2010 post).  New beginnings it certainly was -- new chances, new opportunities, a new future.  Now that it's been almost 5 years since my Acute Myeloid Leukemia adventure began, my attention for the last few years returned to my 14 year battle with metastatic Adenoid Cystic Carcinoma (ACC).

The radiofrequency ablation (RFA) to a left lung tumor on June 2, 2014 was an easy one.  Two days off from work and I could barely tell anything had been done at all.  As long as ablations take place in the lung tissue, away from any vital structures like major airways, the chest wall, the heart, etc., this whac-a-mole approach to killing metastatic tumors is pretty easy to manage.  But when cancer cells creep into the lining of the lungs, called the pleura, that's when things get complicated.

The pleura is like a slip-and-slide, providing lubrication between the lungs and the ribs to allow for expansion within the chest.  Once cancer cells start slipping and sliding in the pleura, they can take up residence anywhere, and nodules/spots/tumors are very hard to detect and contain.  Another problem is that the pleura contains lots and lots of nerves, which is why it's safer to kill tumors there by freezing them (cryoablation) rather than cooking them with RFA.  Even with cryoablation, it is difficult to avoid nerve damage to the really big nerves that run all along the spine (intercostal nerves).  A third problem is that ACC travels along nerves, making tumors in the pleura a really big pain, literally.

My current situation is that all the nodules/spots/tumors that now show up on my CT scans are in the pleura of both lungs.  We don't call them tumors until we can see over time that they're growing, but we're at that point now with some of the spots we've been watching, so it's time for a couple more trips to Baltimore.  This may sound like terrible news, but it's actually nothing all that new.  The new issue is that instead of having the simple RFAs that I've had in the past, I now need cryoablations that are likely to result in a 2-6 month recovery period for each one.

The plan is to first have 2 tumors in the left lung cryoablated (killed with freezing gas); this is tentatively scheduled for September 15th.  When I have recovered from that, I'll have 1 tumor in the right lung cryoablated.  As long as the remaining lung spots stay put and don't grow, that should do it for awhile.  Thankfully, I have a slow growing form of this very slow growing cancer.  I had a cryoablation in my right pleural last October, and it cause nerve pain for a few months.  This time, it will be on my left lung, where I already have chronic nerve pain from the last lung surgery 2 years ago.  This will be my 10th ablation to tumors 24 and 25, so as most of you know, this is not my first rodeo.  (I actively look for chances to say that!)  Looking at the big picture, things could be worse.  A lot worse.

The real news here is a different kind of new beginning:  I finally had to accept the fact that I'm no longer able to manage this illness full time while working full time.  With the ablations coming up, disability is a given.  The fractured wrist injury in February really set me back and triggered several long term pain syndromes that I thought were somewhat under control.  Now that they're back, I have no choice but to focus on getting as strong as I can for what lies ahead.

I've worked in the Litigation Department at Lowenstein Sandler for 15 years.  The firm has been the closest thing to a family I've had my entire adult life.  It's hard to process the fact that I'm leaving to go out on disability again.  I don't think anyone can find a more understanding, supportive, go-the-extra-mile, generous company, anywhere.  I'll have to put off my thoughts about this for another post, when it becomes real.

Several people have asked me if I'll be bored or what I will spend my time doing.  Well, since disability is not retirement, and pain is never boring, I'll be spending quite a bit of energy recovering from cancer procedures and coping with their side effects.  But I refuse to throw pity parties or become a daytime TV junkie -- well, maybe a little bit.  As I'm able, I will build my health as much as possible and contribute to patient advocacy projects with the Adenoid Cystic Carcinoma Organization International (ACCOI).  I just returned from an ACCOI event for survivors in the heart of California's wine country.  You didn't know that cancer can bring such good times, did you?  I learned that I have some things to contribute and that my experiences can help others who are battling this really monstrous disease.  More on that in another post too.

My beautiful cousin, Niki, gave me an Easter lily a few years ago, which I planted outside my condo.  When the flowers fell off, the landscapers for my condo association cut it down.  I mourned in anger and eventually forgot about it.  About a month ago, I discovered that the lily had grown back and was in full bloom, bent and worn down from rough times, but still alive and thriving.  I thought to myself, "That lily is kind of like me.  Bent and worn down, but still here and determined to survive the rough times ahead."  This morning I realized that the landscapers came and cut down the lily again.  "No worries, it will be back," I thought.  This time I didn't get angry or sad.  I just smiled to myself.  The spirit of life has a way of breaking through.

Kathy
CANcer + HEALth = CAN HEAL

Monkey Mind

Have you ever tried really hard to relax?  How about concentrating on reaching a meditative state?  It's impossible by definition.  I've tried sending everything to my mental trash folder, and it never seems to work for me.  I have terrible Monkey Mind. 

Buddha described the human mind as being filled with drunken monkeys, jumping around, screeching, chattering, carrying on endlessly. We all have monkey minds, Buddha said, with dozens of monkeys all clamoring for attention. Fear is an especially loud monkey, sounding the alarm incessantly, pointing out all the things we should be wary of and everything that could go wrong.    (Huffington Post Blog, BJ Gallagher)

If only there was a drug for this affliction; I'd be the first in line.  I went to Hopkins on June 2nd for a Radiofrequency Ablation (RFA) to an upper left lung tumor.  The procedure went great.  Easy peasy.  Dr. Hong was all smiles afterward and once my chest x-rays showed that all was well, I left with Karen the same day.  I drove home the next day and worked from home the day after. 

I did notice that I had two little red marks at the site on my upper back, and thought, "Hmmm, one tumor, two needle marks?  Oh, well."  When I called for a copy of the operative report later that week, I was stunned at a something I read.  It described the prep for the surgery, and then this:  "At this time a 25% pneumothorax was identified on the left side," followed by a chest tube placement.  Whaaa?  I had a collapsed lung before the RFA even started?  How long have I been walking around with that?  The monkeys were going crazy.  As I speed dialed Dr. Hong, I thought, "Um.  Dr. Hong?  Excuse me, but WTF?  Did I walk in with this?  Did you forget to mention something?"  Of course I had to leave a message and wait with the monkeys till he called me back.  "Oh no," he said.  "If you had a 25% collapse, you would have known it."  He then proceeded to advise me not to read the reports.  To this I replied, "Dr. Hong, have you met me?"  We both just laughed as my blood pressure receded.  Yes, I had a small pneumothorax from having my lung pierced by the needle, but it resolved itself before I woke up so I never even knew about it.  It was such a non-event, he never thought to mention it.  Hence the two little marks -- one from the needle, the other from the tiny chest tube.

In Cancer World, it's very hard to shake off Monkey Mind.  We assume that every new symptom of anything is a sign of more cancer.  A headache must be a brain tumor.  A new age spot must be skin cancer.  A chest cold means that lung metastasis has taken over.  It's exhausting.  The monkeys take up residence and refuse to leave. 

In mid May, during the busiest, most stressful time of my entire year at work, I got a call from my urologist.  The stent that was placed between my bladder and kidney last year, part of a cryoablation procedure to kill a large tumor in my kidney, left lingering symptoms.  My doctor called to tell me that he ran a FISH test and it came back positive.  A FISH test is a marker for cancer.  He wanted me to have an immediate procedure to see what was going on.  The subtext of the call was, "You probably have bladder cancer." 

There were three possibilities:  1.  The FISH test was a false positive and I'm fine.  Yeah, right.  2.  Metastasis has spread to my bladder.  3.  I have a new bladder cancer, caused by the tons of chemotherapy drugs and other toxic medicines I've poisoned my body with over the last 14 years.  It was a very long two weeks and the monkeys were relentless.  The answer was behind Door Number 1:  The test was a false positive.  No sign of cancer.  Relief  and surprise don't come close to describing how happy I was, or the beat down I gave those monkeys.

The problem is, Monkey Mind is a constant state of being unless we actively work to control it and keep it at bay.  I'm having a hard time healing from the carpel tunnel release that was done when I fractured my wrist in February.  This injury was pretty traumatic for my new immune system and it's working overtime to heal me.  Unfortunately, it's also fighting me again, causing all kinds of pain issues to resurface.  Is it any wonder that I self induced a sinus cold last week?  Damn monkeys!

I know that deep breathing exercises and meditation would make a huge difference, so I've started doing both.  I hope to get back to doing gentle yoga again soon, which was something I enjoyed before I fell. Thankfully, I won't have to spend my summer making trips to Hopkins.  There are two more ablations on the horizon.  I'll go in early September for a cryoablation to kill two more tumors in my left lung, and after that we'll schedule another one to kill a right lung tumor.  Next month I'm going to Sonoma Valley in California for a meeting with other ACC patients, and I'll spend a couple of days visiting San Francisco.  Meeting other survivors is enormously helpful when fighting a rare disease that no one has ever heard of.  Having the meeting at a winery is even better!

The first step to conquering Monkey Mind is to recognize the reason the monkeys are screeching.  It's usually fear.  Then we can use the tools we know we should be using -- meditation, prayer, etc. -- to escort them out the door.  Monkeys are fascinating animals.  They just don't belong in our heads. 

Happy Father's Day to all fathers everywhere!

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

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.

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

Wrecking Ball

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

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

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

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

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

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

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

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

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

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

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

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

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

It really is a great song.

Kathy

CANcer + HEALth = CAN HEAL

 

"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