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

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

"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