Hard times come, and hard times go... Yeah just to come again

I'm a nester.  It's all about comfort for me.  My massage therapist, Marty, begins each session telling me to imagine a place that makes me happy.  He suggests a beach, the mountains, a favorite vacation spot.  I imagine lying on my new couch, with the softest throw ever made and Sadie sleeping on my lap.  It's the best Happy Place I could ever hope for.  Comfort is serving an important role in my life these days.  It buffers what most would see as bad news.

I received the Hopkins interpretation of the scans I had earlier this month in Pittsburgh.  They show new areas of cancer in my lungs, some old areas that have grown, and some that have stayed the same.  The most dangerous tumor in the hilar region that has already been ablated and radiated seems to be stable.  But because it is still active, it's still very dangerous.  Also, it was reported that some tumors in the lining of my lungs (the pleura) are infiltrating my chest wall.  Other scary things are described to the point of being overwhelming. However, everything that's growing isn't growing super fast and nothing is measuring too big to treat. The problem is that there is too much to treat.  

I can't really say that this is a surprise.  I've had bad scans before and somehow my doctors have managed to address everything one crisis at a time.  But now that I have such trouble breathing, the risk benefit analysis of continuing with the Whack-A-Mole approach becomes questionable, as Dr. Georgiades wrote to me.  Every ablation requires a 1 cm. margin that kills healthy tissue to ensure the ablation is successful.  Every radiation plan also kills some healthy tissue and creates scarring as the beams travel to and from the targeted area. Considering all my past procedures, my remaining lung mass needs to be preserved as much as possible (I lost about 30% over 3 surgeries).  

With the shortness of breath and wheezing I now have, I have to consider the impact on the quality of life that more Whack-A-Mole would have.  I'm reminded of Joe Biden.  If I'm going to be in this race, I need to decide if I have what it takes before my window of opportunity closes.  Time for more opinions.  Many ACC patients go to radiation oncologists who offer proton beam radiation. Standard radiation is with photons.  One is just as precise as the other, but proton therapy is a newer technique that eliminates the "exit path" of the beam. "Higher doses of radiation can be used to control and manage cancer while significantly reducing damage to healthy tissue and vital organs."  Hopkins is building a proton center, but it won't be ready until 2017.  There are 15 proton centers in the US and a couple of them have seem many, many ACC patients.  Looks like I'll have a road trip or two to talk to the doctors who have treated so many of my ACC brothers and sisters.

In the meantime, I am having my tumors genetically profiled by two separate labs to determine if I have any cancer mutations.  If I do, there may be a clinical trial open that targets that particular mutation.  I should know the results of these tests in a month or two.  Having one or more mutations doesn't give me more options per se. But it would get me closer to the possibility of finding a drug that might stop my tumors from growing -- or, best case scenario, shrinking them -- for awhile.  Most trial results so far only show that the drug works until ACC finds a way around it.  This disease is a monster.  But it's still a hopeful time for us.  Science is moving so fast, cancer is being redefined by genetic research.  Since there's a lot of money to be made from this, innovation is moving at warp speed.

Back to Marty.  When I shared my news with him, he asked me how I'm coping with it all and if I'm okay.  I really am, for two reasons.  1.  I'm getting used to this roller coaster.  My stomach still lurches as I plunge downward.  But I don't puke with fear like I used to.  I think this is because I have recovered from circumstances that appeared hopeless. Statistically, I never should have lived through leukemia in 2009 or the many ACC battles since then.  2.  I'm focusing on comfort.  My nesting nature is in high gear.  As I slowly taper off steroids (given to see if they help my breathing), my mind spins with ideas for increasing comfort.  I decided to buy an adjustable bed. I often have to prop myself up in the middle of the night to help me breathe, so it made sense. And since I was headed for a hospital bed at some point in the future, why not get a plush, super comfy memory foam bed now, while I can enjoy it? Normal people are getting them, according to the commercials, so I don't feel like a cancer-patient-hospital-bed person.  My new Happy Place, with all its bells and whistles, was delivered on Friday, it fits perfectly in my bed frame, it is beautiful, and my sleep is amazing!  With a wireless remote to control the head, feet and massage features, I'm too happy to be depressed.  Sadie was very suspicious.  I watched with evil curiosity to see if, upon raising the feet, she was cat-a-pulted as a projectile to the top of the bed!  (Thanks, Laura, for the pun.  I'm sure Cheryl will appreciate it.)  

I've found that Retail Therapy is good for my psyche.  Comfort through consumerism.  As I look forward to Thanksgiving with Mary and her family in Pittsburgh for the first time, I can't be anything other than grateful for my new life, regardless of what the next chapter reveals.  As much as people deny it, we're all living on borrowed time.  I just have a little more information on the time I have left than most people do.  Make every day Thanksgiving. Find comfort in your life.  Buy an adjustable bed.

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

This is f*cked up.

No wonder I'm not really into the Holidays.  For the past several years they've coincided with medical nightmares.  I thought that this year would be different.  Oh, so close.

It was time for my yearly breast ultrasound, which I stagger with a yearly mammogram on a 6 month rolling basis.  I scheduled this for last Thursday, just before my monthly visit with Dr. Forte -- the greatest oncologist on the planet.  I could tell by watching the technician's face that it was going to be a bad day.  A mass was found in my left breast, the same breast where ACC was found in 2000.  After a painful fine needle aspiration and an even more painful core needle biopsy, the radiologist confirmed that it was indeed cancer.  My stomach dropped.  Again.  I've never known Adenoid Cystic Carcinoma of the Breast (ACCB) to reoccur in the original site after treatment.  My head was spinning.

By the time I got to my appointment with Dr. Forte, the slides had been read and he told me that this is a completely different cancer from ACC.  A totally new cancer diagnosis!  We both sat there for a minute, speechless.  All I could say was, "This is f*cked up."  I'm pretty sure I said that several times during that appointment.  He said that the pathologist thinks it's just run-of-the-mill invasive ductal carcinoma, IDC.  Up to 80% of all breast cancers are IDC.  Although it's a very common cancer, and I don't have to seek out specialists this time, it's a whole new ballgame.  It's a whole new everything.  Starting over.

Driving home that night I felt like my body has been turned into one big medical torture chamber.  I turned up the radio as my long time friend read my mind.

Hell's brewing, dark sun's on the rise
This storm will blow through, by and by
House is on fire, vipers in the grass
Little revenge and this too shall pass

This too shall pass, yeah I'm gonna pray
Right now, all I got's this lonesome day

                                       Bruce Springsteen, Lonesome Day

The details of the plan have yet to be determined.  But here's what I know so far:  I'm in very good hands at Englewood Hospital and Medical Center.  Dr. Forte has treated this kind of cancer hundreds of times.  He has always been invested in my care and was very upset with this development.  He's practically a family member.  He said he was probably going to go home and cry.  I was oddly comforted by that.  Dr. V. Merle McIntosh is the Chief of Breast Surgery and is the best at what she does.  I will meet with her on Thursday to schedule a date for surgery.  She said that, with my medical history, we need to be super careful not to be too aggressive.  The driving questions will be whether we can get clean margins and if the cancer has already spread to any lymph nodes.  This will determine the stage and where to go from there.  

Dr. McIntosh told me to bring my "folder of test results."  I'm very OCD when is comes to keeping organized.  I have four levels of medical records:  1. My four page Medical Summary and List of Medications for my purse; 2.  My portable 5x7 notebook with all my lists and blank paper for taking notes at appointments; 3.  My files for each doctor; and 4. the Big Kahuna -- my 4" binder of all my test results, divided by types of tests.  I'll have to use my backpack on wheels on Thursday.  The Big Kahuna is just too heavy.

So far, 2015 kind of sucks.  From all I learned about breast cancer during my first six years of survivorship -- when I erroneously thought that ACC of the breast was a type of breast cancer -- this shouldn't be as steep a roller coaster as ACC has been.  Hopefully, this won't set my plans for moving back too far.  I need a change of scenery, that's for sure.

Armed with my Kindle, Apple iTV, Amazon Fire Stick, Fresh Direct grocery delivery and take-out menus, Sadie and I will settle into an all-too-familiar routine.  It's all in a day's work.

Kathy
CANcer + HEALth = CAN HEAL