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

There's really nothing quite like watching a frozen river during a snow storm.  Seeing  massive chunks of ice creep along in front of the Pittsburgh skyline is a very dramatic sight, especially from inside, where it's warm and toasty.  

A few of you received advanced notice that my options have run out and I've decided to take advantage of the services that hospice provides at home.  My last post talked about a few possibilities that I was going to pursue.  These didn't really work out.  The doctor in Virginia who specializes in proton therapy turned out to be a disappointment.  About a week after returning from that very long road trip over the busiest travel weekend of the year (Thanksgiving), my breathing took another dive and I could not walk and breathe at the same time.  I spent about a week in the hospital while the doctors tried to rule out some obvious causes for the problem -- blood clot, infection, collapsed lung, excess fluid, etc.  The verdict was the same as it was when this first became a problem in the summer:  my lungs are shot from progressing cancer and over 30 local treatments to control it over the past 15 years. Any additional radiation or ablations would do more harm than good and I'm not strong enough for more whack-a-mole attempts to stay ahead of this.

I had some tumor samples from the lung surgery in 2012 tested for genetic mutations to see if any experimental drugs might help slow things down.  This also turned out to be a dead end.  Even if there is something that might help prolong the inevitable for a few months, I've had more drugs to fight leukemia from 2009 through 2011 than anyone can expect to withstand in one lifetime.  

We knew this day would come.  I've been lucky to have made it this far with my history of 3 serious cancers.  I'm now on oxygen 24/7 and I can't leave my apartment on my own two feet.  My breathing problems make it difficult to talk, so I've limited my communications to email.  I'm also not the type of person who wants people around when I'm sick, so these factors have led me to request that people not come to visit.  It's easier on me in about a dozen ways, so I thank those of you who have respected these wishes.

I spend my day managing my symptoms, watching DVRd TV shows with Mary, as she works hard at being the world's best caregiver, and petting Sadie as much as she will let me.  Watching the news and the ridiculous political campaigns keep me pondering what kind of world I'm leaving.  I hope I'm around to see Donald Trump go down in flames. Hey, my blog, my opinion, my last wishes!  

Along with Mary's daily visits to keep me sane, the hospice team comes almost everyday too and they are all wonderful.  I wish they didn't have the reputation of call-only-when-the-person's-about-to-croak.  I feel that hospice workers are misunderstood.  They can provide help that no one else can and with experience and compassion.  Knowing I will no longer receive any treatment, I don't have to worry about doctors' appointments, medical tests, or decisions about where to go next.  I'm very grateful for my team here and the care I'm receiving.  The goal of hospice is to make me feel as comfortable as possible.  

It may take several months for my body to call it quits.  Or it may not.  I feel like my body deserves a rest and I'm not at all afraid of dying.  I will leave this life knowing that I have given it my very best shot -- chasing down doctors, medical techniques, research, and advice from the amazing community of ACC patients all over the world.

I know that most people fear everything about death and dying -- even talking about it.  Much more destructive than death, in my opinion, is denial.  Denial will wreck you.  When someone tells you that they've made a decision about how to live or die, don't deny them your support and unconditional love.  Most people, in their grief and anticipated loss, just don't know what to do or say.  It's hard for everyone. But it's mostly hard for the patient.  Here are a few dos and don'ts when it comes to things to say to a cancer patient (or about me):    

1.  "She lost her battle to cancer."  (Read here.) The implication is that I just didn't fight hard enough.  Nothing could be more offensive.
2.  "God never gives you more than you can handle."  This is another annoying cliché.  The God I believe in would never test people to see how much they can handle.  How mean would that be?
3.  "Everything happens for a reason."  Really?  Bullshit.  This is one of the most insulting things a cancer patient can hear.  Classic Blame The Victim.
4.  "What is your prognosis?"  Well, if it's not good, you've just made the person feel like crap having to explain that they're in bad shape.  
And the list goes on....

The problem is that people don't have any good examples of helpful, loving ways to express support instead of these unhelpful blunders.  A better approach would be to ask them what they need and how you can help.  Then listen to what they say and do it, whether you agree with it or not.  It's their illness, not yours.

And now that I've rambled on and on, I can't say for sure if this will be my last blog post or not.  As with everything in life, we should assume that this moment is our last and cherish what we have right now.

As long as I can stay in the present, I can honestly say that I am happy that this will soon be over.  It's hard for my ego not to make a mental wish list for my next lifetime.  My faith is in the Higher Power that resides in all of us, so I'm good with whatever comes next.  I'm hoping that if I end up on Earth again, I'll have better hair and dimples, but who's to say that would make me happy?  For now, I'll watch my DVRd TV shows (suggestions for binge watching are welcome), enjoy Sadie and watch the river just outside my door.  My energy comes and goes, so please forgive me if I take a while, or can't, respond to your messages.  Know that they are received and appreciated.

I want to thank all of you for your love and support when I've been sick and when I've been well.  I'm a very lucky person to have known all of you, even those of you I've never met in person.  Take care of your bodies, take care of each other, take care of the planet.

I love you all.

Kathy

CANcer + HEALth = CAN HEAL

Hello from Pittsburgh!

It's been a while, I know.  This year started out with a bang with the breast cancer diagnosis, the cryoablation to a mystery tumor in my left side, the chaotic recovery that that caused, and the hunt for an apartment in Pittsburgh.  My plan was to post once things settled down after the move, but I'm having some trouble breathing and I had hoped to report a resolution to the problem in that post.  Now we're ending what has been a beautiful summer and I'm still looking for that resolution.

Mary found the perfect apartment complex for all my needs and Sadie and I are enjoying it very much.  It's a small one bedroom, but perfect for us with big windows in each room overlooking the Allegheny River and the Three Rivers Trail about 50 feet below.  Beyond the river is the Pittsburgh downtown skyline and the Convention Center.  Last night there was a massive fireworks show from the Rachel Carson Bridge (what I call "my" bridge), and I only had to walk onto my deck to enjoy it.

   

 

Less than a mile down the trail is PNC Stadium where the Pirates play, and beyond that is Heinz Stadium where the Steelers play. Since my lungs are limiting my physical activity these days, my deck is a great location for people-watching, on and off the river, as people run, bike, kayak, boat, jet ski and walk their dogs.     

Speaking of my lungs, I've seen doctors in Pittsburgh and at Hopkins and I've had every test to determine what is going on.  It seems that this may just be the result of cumulative scarring from the many surgeries, radiation plans and ablations over the past 9 years since I began my battle with metastatic disease.  I suppose it's the price I pay for playing Whack-A-Mole.  I'll see my pulmonologist next week and maybe he can think of a test I haven't had yet or a drug that can help me.  The good news is that I don't have an infection, collapsed lung, blood clot, heart issues or an obstruction.  There's also positive news on the research front. The National Cancer Institute just launched a huge project and both my hospital in Pittsburgh and Hopkins are participating facilities.  My new oncologist is submitting my name and I'm hopeful that I qualify, in spite of all my other cancers.  

The goal is to identify various immunotherapy agents that will jump start the immune system to fight cancer on its own.  You may have heard of some studies where researchers are using viruses such as measles, polio, even HIV, to accomplish this.  There has been enough success with some cancers, that researchers are starting to think that cancer will no longer be identified by the body part where it begins.  It will be identified by the genetic mutation(s) that cause a given cancer.  The first phase of the MATCH program is to genetically test a person's tumors for mutations.  Then the patient is matched with the immunotherapy agent -- which is not chemotherapy -- that will stimulate the immune system to respond and fight the cancer.  If I qualify, I may be in a trial with all sorts of non-ACC cancer patients.  The common denominator will be the genetic mutation, not the "type" or initial location of the cancer. The key to getting accepted into the one of the studies is having a mutation for which there is an agent that is currently being tested.  Now that I have a new immune system, courtesy of my donor, let's see what it can do!

The great thing about this project is that 2,400 facilities are involved, and patients will no longer have to travel several times a month to the trial city to get their medicine.  And since drug costs are covered by the trials, the financial hit that people take is substantially reduced.

My goal is to keep breathing long enough to take advantage of all this new science!  I am impressed and relieved at the care that I've received so far in Pittsburgh.  The doctors here actually read my cover letters and my 4 page Medical Summary, which is a commitment right off the bat.  Generally speaking, people here are extremely nice.  Maybe it's because of all the social and community events going on all the time. July brought Picklesburgh to my bridge, complete with live bands.  Maybe it's the crazy food.  They serve French Fries on salads, sandwiches and even pizza!  

I can tell by the foot traffic on the trail that there's a Pirates game tonight.  I have to say that this is a big improvement over my New Jersey neighborhood in the corner pocket of Maplewood, Newark and Irvington. And having Mary close by is like having a best friend, caregiver and personal assistant all in one thoughtful person. I never could have settled myself in without Mary's help.  And on the New Jersey side of the move, I owe a lot to Jim, Laura and all those who helped me downsize, pack, drive through Pennsylvania and reinvent my material self.  I threw away or donated at least 2/3 of my belongings, and this continued as I unpacked in Pittsburgh. If you ever want to leave a smaller footprint on the world, or just feel productive, call for a donation pick up.  It's a win-win for everyone. 

I hope everyone had a great summer.  Thanks so much to everyone who remembered my birthday.  It was so moving to know that I haven't been forgotten.  Here's to a new season of changes and opportunities.  I promise to do a better job of keeping you updated.

Kathy

CANcer + HEALth = CAN HEAL

Changing Times

Goodbye winter!  I had to laugh as I watched spring roll in after an entire day of slow, steady snow last Friday.  This winter wasn't as brutal and violent as last year, with crushed bones and several trips to the ER, but it was long and cruel.  January blew in with a breast cancer diagnosis and out with one less boob.

February greeted me with tumors in random places that forced my Hopkins doctors to come up with yet more creative treatment plans.  I had a left side tumor in the soft tissue that holds my abdominal organs together that grew under the radar into a rather large monster.  And I had a small right side tumor that was tiny but very painful, close to the surface of the skin, also in the soft tissue.  Dr. Hong performed a cryoablation to the left side monster at the end of February.

March greeted me with uncontrolled pain and swelling after that ablation -- the first time I've had trouble after any of my 11 ablations.  It wasn't a complication of the procedure, it was a complication of me.  I have pretty bad scoliosis and the monster tumor just happened to be in the area where my crooked back was the most crooked.  There was no place for the expected inflammation from the ablation to go and it shocked my abdominal organs into, well, not working.  I eventually ended up in the hospital for a few days of tests and fluids, which got things working again, but I still have a lot of pain in my left hip.  It feels like someone dropped me on the floor, hip first, while I was under sedation in the OR.  Dr. Hong assured me that this did not happen, but who knows what really goes on in those ORs?  On Grey's Anatomy they all just gossip and don't really pay much attention till the patient is coding.  But I believe Dr. Hong.  He would have noticed if someone threw me on the floor.

Last Thursday Dr. Hales gave me a strong dose of radiation to the small pea sized right side tumor, and by the time I got off the table, the pain in that spot was gone.  I'm now free to roam about the cabin till the end of June, when I will have another PET/CT and find out what this crazy, unpredictable cancer has in store for me next.  I'm hoping for a long period of stable lung tumors and no more random tumors outside my organs, where they don't belong!

April will keep me busy preparing for my big move to Pittsburgh.  The date has been set for April 30th and I'm very excited.  Mary found a super great apartment for me in a swanky complex where I'll have covered parking (for the 9 months of snow) and a beautiful view of the Allegheny River and downtown Pittsburgh.

Because of the timing of my move, I will not be able to attend the Adenoid Cystic Carcinoma Research Foundation (ACCRF) survivor events this April in Boston.  I will miss meeting other survivors and caregivers and the research update from the Executive Director of the Foundation, Jeffrey Kaufman.  The organizers decided to go green this year for the fundraising portion of the events.  Instead of their usual fundraising efforts and silent auction, ACCRF is holding a stay-at-home, cyber fundraiser to reach more people in an effort to further their research in finding a cure for this insidious disease.  Rather than me telling you how horribly disfiguring and awful ACC is, I'm just going to ask that you trust me on this.  ACC usually attacks glands in the head and neck and most people suffer tremendously from its slow, cruel assaults.  The more ACC survivors I meet, the more amazed I am at what the human body can endure.  Please consider supporting this effort, and me:  www.accrf.org.  

In the meantime, I thank you all for your continued support over these long 14 years.  Here's wishing you a wonderful spring, full of health and happiness.  Come and visit me sometime in Pittsburgh!

Kathy

CANcer + HEALth = CAN HEAL

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

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

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

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

My Own Version of Fireworks

June came and went as fast as fireworks explode and disappear. It was great to get back to the firm, working again with the people who gave me so much support. When I paused to catch my breath, it was the 4th of July -- a time for family, friends, BBQ and red-white-and-blue cupcakes. Almost as soon as I returned home from a grand fireworks display, I headed out on I95 toward Johns Hopkins to see Dr. Georgiades for another PET/CT scan. I now have a juggling act to maintain, making sure that cancer no. 2, Acute Myeloid Leukemia (AML) doesn't stir up cancer no. 1, Adenoid Cystic Carcinoma of the Breast (ACCB). This was a trip to check on cancer no. 1.

In late April, my last PET scan showed a "hot spot," which did not show up on the CT part of the test. Since there was no good explanation for this discrepancy, we decided to repeat the test in 2 months. I could feel myself getting weary, thinking about having to have another radiofrequency ablation (RFA) so soon after finishing treatment for leukemia. But my spirits were lifted as soon as Dr. Georgiades entered the room. He usually comes in with copies of images from the PET/CT, hot off the radiologist's digital griddle. Or he comes in with drawings of my lungs, showing spots where previous tumors have been killed, along with sites of untreated tumors. This time he was empty handed. The hot spot had disappeared, and nothing was lighting up anywhere! No evidence of cancer -- only the same few little ditzels that haven't changed in the 2 years I've been going to Hopkins. I don't have to go back for another scan until January. I'll always need to be followed because cancer no. 1 grows so slowly. It's been known to show up after decades of dormancy. But I can't complain about that. At least we can see it coming and zap it in its tracks.

Driving back from Baltimore in 105 degree heat, as the fireworks were going off in my head, my heart, and my ex-disease ridden lungs, two things occurred to me: 1. Killing metastatic tumors often results in more tumors growing back, sometimes more aggressively. Cancer finds new pathways when the old ones are destroyed. That hasn't happened to me.  2. Having my bone marrow completely destroyed by tons of chemotherapy may have easily triggered any remaining lung metastasis to become active. Without an immune system, it stands to reason that another lingering cancer that doesn't respond to chemotherapy would have had a field day. That hasn't happened either.

I'm tempted to have a party! Oh, but wait. The last time I had a party to celebrate good PET/CT results, I was diagnosed with leukemia 48 hours later. My next milestone will be next month, when I will have another bone marrow biopsy. Unfortunately, these quarterly stabbings are the only way to confirm remission. Until then, I'll celebrate the simple things in life, like my cat, Sadie, and all her feline antics. And Snowball, the dancing cockatoo. I love Snowball. He dances like there's no tomorrow.  I learned of him on CBS Sunday Morning, and I think he's my new best friend. My favorite performance is Another One Bites the Dust, but he also takes the music of the Backstreet Boys, Lady Gaga and Stevie Nicks to a whole new level.  I wonder what Sadie would think of Snowball.  And another version of fireworks is born...

Kathy

CANcer + HEALth = CAN HEAL

On the One Yard Line

There's always that mix of feelings that creep over me when I go to Johns Hopkins to have a follow up PET/CT scan and a consultation with Dr. Georgiades: anticipation, nervousness, excitement, and the need to take deep breaths. On June 2nd, I received some great news:

Not only have all the ablated tumors shrunk in size, but they are also "dimmer" on the PET/CT, which means that the cancer has been killed and the inflammation caused by the radiofrequency ablations (RFAs) is disappearing. In fact, some of the tumors aren't even "lighting up" on the test at all! One such tumor is the one that was ablated during the last RFA that I had on March 3rd. Because of a small pneumothorax - collapse of the lung - during the procedure, Dr. Georgiades wasn't sure that he got the whole thing, which was one of the main reasons for this follow up appointment. Oh, and there's more: The test also showed that no new tumors have appeared, and the tiny little spots that were too small to characterize haven't grown. To me, this was the best news of all. Because no one knows how my disease spreads, we can't tell if, during these last two years of growth, all the cancer has revealed itself, or if there's more. We still don't know that, but worse case scenario, it looks as though we've stopped the growth. Best case scenario is that maybe, possibly, hopefully, we've killed it all. I'm happy and extremely grateful either way.

The plan is for me to have another PET/CT in September, when we can see if more tumors become even dimmer or stop lighting up due to the healing process. After I left Johns Hopkins that day, I felt that I not only made a touchdown, but that I had won the whole damn game! That's the way it is with cancer, every good report feels like a Super Bowl win. But the reality of metastasis is that we're never really out of the game. The season never ends.

After I got home, I started thinking about this, and I wrote this question to Dr. Georgiades:

I know that the terms, "cancer free," "cured," and "remission" will never be appropriate for someone like me. But do you think that someday I might be able to say that I'm "tumor free?"

Here is what he wrote back:

The problem is that even our best tests are not 100% accurate. We are following your disease with PET/CT, which is indeed the best test in this case, but its accuracy is about 92-95%. If and when one day the PET/CT is entirely negative (and given the way things are going now, there is a good chance it may happen) what we can say is: Based on our best test there is no evidence of viable tumor. Irrespective of that, however, we will need to follow up for life because of the possibility of a new lesion showing up.

That's Dr. Georgiades' diplomatic way of saying, "We really can't ever say 'tumor free' either, but things are looking good." That's ok, "no evidence of viable tumor" is good enough for me.

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

"You Have A Very Rare Cancer"

My story is a bit complicated. The best way to summarize the first 7 years of my journey might be to publish some excerpts from a speech I gave May 2007, at a Relay For Life event.

In 1998 I noticed a dull, constant soreness in my left breast and went for my first mammogram at the age of 38. No mass was found, and I was told that I shouldn’t worry about it because “pain is not a symptom of breast cancer.” A year or so later I noticed a lump in that same area, which was still painful. As it grew, I went for another mammogram, was sent for a biopsy, and was diagnosed with a very rare form of breast cancer called Adenoid Cystic Carcinoma of the Breast, or ACCB. This is a cancer that usually attacks glands in the head and neck, and because there are also glands in the breast, it can occur there too. When it does, it’s very slow growing and the prognosis is excellent. But few doctors have seen ACCB because it only occurs in less than .1% of all breast cancers. It’s even more rare for this disease to metastasize, which “rarely, if ever” happens, according to the articles I found then.

Fast forward 6 years, after a successful lumpectomy, 8 rounds of chemotherapy, 35 radiation treatments and being declared “cancer free,” to October of 2006. I went for my first chest CT scan and was told that I had 10 lung nodules sprayed across both lungs. Most were small, but one was large enough to sound the alarm bell. After a PET/CT scan and a lung biopsy that was inconclusive, I found myself planning to go back on the operating table, this time to remove part of my left lung. When I woke up from the surgery, I was told that it was indeed metastasis from the cancer that I had 6 years ago.

For about a week and a half I felt caught between shock, denial and mental free fall. I felt like I was living inside a Picasso painting – everything that resembled something familiar was distorted and frozen in time. I knew that metastasis meant that chemotherapy would become a way of life for the time that I had left. Then my oncologist called to tell me that, after consulting with several other doctors and reviewing the literature, he learned that my disease doesn’t respond to any known chemotherapy. I could hardly supress my relief. My biggest medical fear has never been cancer, it's been chemotherapy. I started to step out of the Picasso painting. When I asked him about treatment, he said, “there is no treatment – at least that we know of right now.” The painting got closer. He said that if the nodules grow to the point where they obstruct my breathing, we’ll operate again and remove what we can.

So I stopped planning my memorial service and started researching my disease. The largest and most comprehensive study of ACCB reviewed the literature from 1945 to 2002 worldwide, and found only 182 cases. Of those, metastasis occurred in only 14 cases (7.7% of the less than .1%) Instead of falling back into the painting, a new one presented itself – a blank canvas with a great big question mark....

The good news is that my cancer grows very, very slowly, and goes into periods of dormancy. I have never had any symptoms, as this was discovered by accident. The bad news is that no one is researching my disease because there are so few of us to study.... After exhaustive research, I decided to tackle this myself. I set out on a quest for alternative treatments and implemented a number of lifestyle changes. I still have 7 nodules in my lungs, but they haven’t grown since they were discovered, and I have never felt better, physically or mentally.

Cancer brings life into laser sharp focus. Priorities become clear, as well as the realization that the present moment is all we ever have. Every one of us has a blank canvas with a great big question mark on it. As we fill it in, and as it is sometimes filled in for us, we celebrate life, count our blessings, and control what we can....

In May 2008, a year after I wrote that speech, I learned that all of my remaining tumors were growing. Although they were still relatively small, some had doubled in size.

This put me back into research mode, coupled with numerous consultations with medical doctors from both conventional and non-conventional practices. And my journey took a whole new turn.

Kathy

CANcer + HEALth = CAN HEAL