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

Room 207

November is here, and I'm finally coming out of my cocoon, where I unplugged from All Things Cancer for a while.  I finished having 15 radiation treatments at Johns Hopkins on October 28th and raced home to reunite with Sadie.  I missed her terribly, and since returning home I can't keep my hands off her.  She was very happy to see me until she realized I had been gone for a long time.  Then I got the look:  She practically had her paw on her hip, tilted her head and meowed, "Where the f*** have you been?"  

All went well with the radiation treatments.  Since the cryoablation was in the same area 3 weeks earlier, it's hard to tell what soreness was caused by what.  I began to have a hard time swallowing, which was caused by inflammation from radiation near my esophagus.  But that eventually went away.  After I got home, I developed a burning rash at the site of the radiation near my collar bone, which is still annoying me.  Graft vs. Host Disease (GVHD) is starting to kick in, which happens whenever my new immune system takes a hit. And, as predicted, instead of sleeping my usual 10 hours a night, I'm now sleeping about 12.  But I also see signs that the Cone of Cancer I described in my last post has taken a beating.  For a year or more I've had extremely sharp pain in my chest whenever I sneezed or coughed.  I'm very happy to report that this no longer happens.  My left side is still a mess.  I have chronic pain in my left ribs and nerve pain in my left arm from the last lung surgery in August 2012.  It will be awhile until I can wear the shoulder strap of my seat belt across my chest, but I think I might continue to notice less pain in some places.  It's been a long time since I've been able to say that!

I was able to keep myself busy while in Baltimore.  I used my appointments with Dr. Hales to ask about current trends in radiation research, I spoke with several Adenoid Cystic Carcinoma patients who were trying to navigate the choppy waters of treatment options, and I even found the chutzpah to suggest a future research project in which Dr. Hong and Dr. Hales could team up for the benefit of ACC patients around the world.  I met up with Diane and her husband, Rick, when Diane had her first RFA with Dr. Hong.  A few days later, I met up with Len and his sister and brother-in-law as Len also had his first RFA with Dr. Hong.  Since my radiation treatments were managed by Dr. Hales, Dr. Hong was confused as to why I kept showing up in his recovery rooms.  I also got together with Michele, a very brave ACC warrior, and her husband Tom, a very brave Acute Myeloid Leukemia survivor.

Adding to this community of survivorship, I stayed at Hope Lodge, one of the American Cancer Society's free housing sites for patients and their caregivers.  I mentioned in my last post that I happened to be assigned to Room 207, the exact same room I had when I underwent another 15 day radiation plan to the other lung almost two years ago in early 2013.  There is instant acceptance at Hope Lodge because, despite the fear, everyone is hopeful and supportive of everyone's battle against a common enemy.  

Most of us feel like crap, yet everyone finds a way to laugh, tell jokes, share stories and welcome the distractions of a lively game of bingo or a community dinner.  One night I taught an elderly couple how to play Candy Crush, and after the woman retired for the night, I later saw her husband glued to the computer in the library, sitting in the dark, determined to make it past level 5.  Several times a week local medical schools, churches, community groups and past residents of Hope Lodge prepare dinner for everyone, giving us a chance to talk about whatever might be going on while getting a break from meal preparation.  Since most of you know that oatmeal in the morning is the extent of any meal preparation that I engage in, this was a huge benefit that I greatly appreciated.

It's hard not to make new friends at Hope Lodge.  I got together with Jake and Lisa, two friends from when I stayed there the first time, and I hope to stay in touch with my new buddies, including Vern, Patrick and Donna, and others.   The managers, staff and volunteers are truly dedicated to providing support and comfort in any way they can, during very difficult times for many people.  It reminds me of one of my favorite Bruce songs:

Well I will provide for you
And I'll stand by your side
You'll need a good companion now
For this part of your ride
Leave behind your sorrows
Let this day be the last
Tomorrow there'll be sunshine
And all this darkness past (Bruce Springsteen, Land of Hope and Dreams)

As long as I can keep my feet firmly on the ground (I bought cleats to put over my shoes this winter!), I have reason to celebrate the end of a very difficult year.  November 17th is the 4th anniversary of my stem cell transplant -- my second birthday.  I still can't believe I got through that.  And I'm confident that the Cone of Cancer is dead, leaving me able to recover some energy and work on downsizing all things material (and unimportant in the grand scheme of things) in preparation for my move to warm and sunny Pittsburgh.  Thankfully, I have no plans to return to Baltimore before early February, when I'll have another set of scans.  

This holiday season I wish that all those in pain and feeling alone can find their Room 207 -- a place for hope, love and community -- for this part of the ride, and always.  

Kathy

CANcer + HEALth = CAN HEAL

Sports, donuts and a battle against a Cone of Cancer

There seems to be an odd connection between Baltimore's sports teams making it to the playoffs and my radiation visits to this loyal, fan-driven city.  In January/February 2013 I was here for a month having radiation treatments to a stubborn tumor in the hilar region of my right lung -- a very dangerous area -- followed by a cryoablation to a large kidney tumor.  See 2/25/13 post.  It was a very stressful time, but I was distracted by watching the city whip itself into a frenzy with the Ravens going to the Super Bowl.  I'll never forget the sea of purple at Hopkins as I walked in every day to get zapped.  Everyone wore football jerseys and there were purple donuts and balloons everywhere.  I watched the game at Hope Lodge with my new found kindred spirits as we feasted on a spread of football food and, for the night, we all forgot that we had cancer.

Here I am again, back at Hope Lodge during the championship series with Baltimore now in a sea of orange, rooting for the Orioles.  Even more bizarre is that I'm staying in the exact same room I had last time!  The Orioles have to advance to the World Series, just so I can have an orange donut and witness the staff in different sports jerseys.

You may remember in my last post I mentioned that I would have to have radiation to an "area of thickening" that Dr. Hong saw when he performed the cryoablation in the lining (pleura) of my left lung a month ago.  He referred me back to Dr. Hales, my back-up pitcher (couldn't resist) whenever Dr. Hong doesn't feel that ablations are the safest option for whatever is going on.  The top of my left lung, or the apex, is shaped like a cone leading down to the rest of my lung.  This cone starts just 2 cm. down from the top of my shoulder.  This thickened area is like a caking that goes around the top of the cone.  Treating this Cone of Cancer should be done sooner rather than later because the pleura is like a 2 layered slip-and-slide, allowing me to breathe in and out without pain.  If the slip-and-slide gets stuck, well, then there's pain, not to mention cancer getting the upper hand.  

Dr. Hales told me that coming up with a treatment plan that kills the Cone of Cancer while sparing the healthy tissue inside the cone is tricky.  Is there any other way with me?  Sometimes I feel like my purpose is to challenge the medical industry's commitment to innovation.  

There are a lot of different types of radiation.  Some machines treat areas that are diffuse, like this Cone of Cancer.  Some machines are very precise, honing in on a very targeted area.  Both are used for a host of reasons depending on the type of cancer, the area in the body, the size of the target, the ability of the patient to tolerate the treatment, the dose that's required to kill the cancer and a lot of other variables.  The science is overwhelmingly complicated.  Dr. Hales and his team of physicists decided to treat me on a new machine that Hopkins just got last month.  The Versa HD (high dose, not high definition) was just launched by a Swedish company called Elekta in March.  It combines several types of radiation delivery methods so that I get precision and diffuse treatments wherever I need them.  Plus, the beams actually bend to treat areas like this cone, which has a messy shape, while protecting the healthy tissue inside.  I'll have 15 sessions total -- three down, 12 to go -- and I'll be home by the end of the month.

The effort of packing and moving to Baltimore was difficult, especially after last month's cryoablation.  I'm sleeping 10-11 hours a night (I know!).  Fatigue always sets in toward the end and after treatments, so I can't imagine my energy level a month from now.  I'll be sleeping as much as Sadie!  Oh, I miss my kitty.  She's in good hands with my neighbor, Michael, whose sons will hopefully give her a workout every now and then.  As for my pain, time will tell with that too.  Since the cryoablation and the radiation treatments are in the same area of my upper pleura, I can't tell what's causing what and what might be temporary as opposed to ongoing.  I'll just be glad to have the treatments over so that I can regain my energy and strength over the next several months as I slowly downsize for my move to Pittsburgh in the spring.  

For now, I'll keep rooting for the Orioles and stay true to my temporary home.  I'm told that they rally at the last minute, when things look really grim.  Who does that remind you of?  I'm determined that by the time I leave here, I'll have had my orange donut.

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

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