metastatic breast cancer

10/05/2020

Risk vs Benefit

I see it’s been two years since my last health update.  I know that some of you are aware that something is up.  So here we go.

Six weeks ago, I went to the hospital for my 86th round of Godzilla chemo.  It was a very full day for me.  By 8 a.m. I was at UCSF Oncology having my vitals taken. Then my Portia got hooked up and my lab work was drawn. Always 3 tubes worth. Then my Portia was disconnected but still accessed…so we hustled over to the other side of the hospital for my scans, with Portia’s lines taped to my chest so they wouldn’t drag.  This was going to be a long scan session because instead of just CT scans, I was also going to have PET scans too.  An anomaly adjacent to my spleen had appeared on my prior CT scan, so we were going to take a closer look via PET to see what was there.    For PET scans, they inject a radioactive tracer into my bloodstream. Since Portia was already accessed, they injected it directly.  Portia (for those of you who don’t know, is a surgically implanted chest port, that feeds into a vein above the right side of my heart).  It takes an hour for the radioactive tracer to thoroughly work its way in and accumulate, so it can give off energy in the form of gamma rays.  Too much info?  Probably.  

OK, so after the injection I stayed isolated to glow in a private room (seriously, who the hell wants to hang with someone radioactive?!)  I remained comfy in a reclining chair.  The room was small, and the chair was situated quite close to a large wall mural: a very realistic view of a beach in Hawaii. How do I know it was Hawaii?  I can’t recall how I know…maybe it was on the mural itself?  Or maybe it was in Bali.  Who really cares…I whipped out my camera phone to get a picture of it to share with my friends.

I had plenty of time to stare at that mural and after some scrutiny, it really started to bug me that the beach was completely deserted.  There was not a single sign of human life, not even a footprint in the sand.  Nothing.   Staring at that mural made me realize what is unlikely to be in my future.   I finally had to look away, so I glanced to the door which had been left ajar just enough that I could see a large yellow and red warning sign tacked to the wall across the hall.

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When the male nurse, a really nice guy from Cleveland, finally returned to collect me for the scan room, I followed along quietly.  During the 90 minute scanning process, laying motionless and flat while the equipment slid me into the narrow dark tunnel of technology,   I simply closed my eyes and pretended to be on a very busy beach watching my own young kiddos play in the sand and run in the waves.  It was a 30 year flashback. But it was MY flashback. I tried hard NOT to fall asleep…one little unexpected movement on my part would skew the entire imagery and we’d have to start all over again.

By the time I returned to oncology for chemo, which was the last appointment for my day, it was 3 p.m.  I was tired, hungry and ready to get on with it.  The oncology nurse brought me into the infusion area, where I was socially distanced from other patients there.  She connected Portia to the IV lines.  Portia was getting a workout today. I love my Portia.  She never complains.

The nurse went to retrieve the anti-nausea drug that I get prior to Godzilla.  When she returned, she was empty handed. She said there was an issue with my lab results and they needed to speak with my oncologist to seek approval before proceeding.

Huh? An issue? I never have an issue…it’s been almost 5 years with Godzilla…no issues.  NO issues.

I quickly grabbed my very very smart phone and pulled up my lab results (already uploaded to the online patient portal records).  The first thing I looked at was the liver enzymes, which have slowly increased because it’s a gift of Godzilla which can potentially be toxic to the liver.  BUT it’s a very small percentage of patients who end up with liver toxicity due to Godzilla.  And the liver enzymes weren’t any more elevated than they’d been the chemo before.  So…nope, that couldn’t be an issue.

So, then I continued looking to see what other red flags there might be.  Platelets still quite low, but not dangerously so.  Hematocrit…also quite low but not dangerously so.  Nothing we’ve not seen before.

Then Bilirubin.  HOLY CRAP.  A 50% spike.  It’s never spiked in all these years.  RED FLAG WARNING.

I wondered if my oncologist would still proceed with Godzilla.  If not, should I be alarmed? Probably.  I don’t want to be alarmed…I’ve been cruising for a while now…I really, really don’t want to be alarmed.

More than an hour of waiting went by.  The place was emptying out and it was going to be me and the janitors at this rate.  When the nurse finally returned, she had the approval of my oncologist to proceed.  I felt immediate relief.  Let’s get this show on the road. But now I still had to wait for the pharmacy to mix the cocktail and send it on up. 

Eventually Godzilla infusion #86 proceeded.  And by the time the last drips disappeared into Portia who let it flow right into that vein near my heart, it was just me, my nurse, and the janitor. I apologized for keeping her so late.  Oncology nurses are a special breed…they don’t complain to their patients about the unexpected long shifts.  Their compassion is hUGE.  (It IS an election year, right?)

I texted my husband who had been working (read: napping) in the cafeteria all these hours. The COVID protocols were in place, and even I was surprised he was allowed into the hospital…but they did screen him first. So thankfully he was allowed in, otherwise he’d have had to drive home and return for me.  That’s a whole lot of driving.  The parking valet was of course long gone as well for the night.  Hubby and I had to hoof it in search of our car.  And pay to get out of the lot.  We began our long drive home, me worried about my Shadow and if she was okay at home alone for so long. (She’s a trooper…no issues at all, just happy to see us).

Two days later, a message alert popped up on my phone while I just happened to be talking with my bff long distance. I looked to see.  The scan results were in!  The nurse attached a message telling me “Scans look GREAT!  NO evidence of disease!”

WOW!   Wait, what?!?  There’s NOTHING at all to see on these images?  NO signs of minuscule cancer, even if old cancer, lurking… anywhere?!

With my bff still on the line, I opened up the actual results to see for myself and quickly scanned through them, sharing with her as I went.  On the last page, the very first summary statement said No evidence of hyperbolic or metastatic disease.  

Every cancer patient dreams of this result, even knowing that it isn’t a WIN against Metastatic Breast Cancer.  There is no win when it comes to MBC…it’s a terminal gig.  It’ll be back…the question is when and where?

There was a second summary statement that followed that fabulous first one.  And even as I quickly read it out loud, I was still processing that first statement.  It felt surreal. Almost euphoric.  That 2nd summary statement? I had no idea what it actually meant. Lots of unfamiliar words. I scrolled back and again glanced at all the individual organ notations. Each organ was noted to be ‘unremarkable’…which means my organs look exactly as they should look.  Liver, pancreas, adrenal glands.  All unremarkable.  The only thing that wasn’t ‘unremarkable’ was the spleen.  That notation said it was ‘slightly enlarged’.  Nothing further for the spleen. The anomaly which was noted on the prior scan, adjacent to the spleen, was no longer even visible.  It was the whole reason we did the PET scans to begin with.

Well, hells bells, no red flags there.  Surely the nurse would not have released the results if there were any issues of concern.  She’d have sent them on to my oncologist to take a look first.

My bff and I rejoiced in the results.  Phenomenal really.

Five days later while my pup was resting her beautiful German Shepherd noggin in my lap, I started thinking about Shadow’s noticeable focus on me in recent months.  Dogs are intuitive creatures…and she is absolutely no exception. She’s always pretty much glued to my hip, or to hubby’s…but lately she’s nudging my elbow when I fall asleep, or quietly putting her nose to my face so I feel only her whiskers, checking I guess to see if I am in fact asleep.  Hmmm.  What might she sense that I don’t? I began to think about my fabulous scan results, wondering if my oncologist had actually seen them for herself yet. 

I decided to print the detailed results out for my own files, because…well anyone who knows me knows that I keep paper copies of all things important.  After printing them I took a closer look at that 2nd summary sentence.  I decided to research it, there were a lot of words completely foreign to me.

My research led me to focus on the liver. But the scan results revealed my liver was ‘unremarkable’.  So, what the heck? 

I again looked at the scan report.  What does the spleen do again? 

The spleen plays multiple supporting roles in the body. It acts as a filter for blood as part of the immune system. Old red blood cells are recycled in the spleen, and platelets and white blood cells are stored there.

Hmmm.  Okay. I looked up enlarged spleen (aka ‘splenomegaly’…one of those unfamiliar words in that 2nd summary statement).  Lots of things can cause this, but one in particular caught my attention: ‘Cirrhosis and other diseases affecting the liver’. 

And that’s when some dots began to connect…the sudden and unexpected elevated bilirubin count in my bloodwork started to make more sense. Red flags began waving wildly in my imagination.

I began to look up diseases affecting the liver. And that’s when I came across Nodular Regenerative Hyperplasia. According to the website for the National Institutes of Health, under the section titled Rare Diseases: NRH is a rare liver disease. The cause of NRH is not well-understood.[5] It is thought that the liver’s blood vessels somehow become damaged or inflamed, impairing blood flow to parts of the liver. This in turn may cause cells in adjacent parts to “overcompensate” and replicate more than they should, leading to NRH.[2][5] While some people with NRH have no known underlying health problems, NRH is often associated with (blah blah blah disorders, NONE of which I have); or exposure to certain medications or toxins.

Jeezus. What are the freakin’ odds? I frantically typed into the Google search looking for a direct connection from Godzilla to NRH.   And, by God, there it was.

RARE INDEED.  Only a handful of cases, just six globally according to the study I stumbled upon.  And of those 6 cases, it seems most of those patients DIED.  Granted, all were being treated with active cancer progression.  BUT all 6 had been treated with Godzilla when NRH stealthily snuck in.  And there were no other (blah blah blah) contributing factors to have brought on this very rare disease, according to what I was able to decipher anyhow.

Well, SHIT.

I wondered again if my oncologist had read my scan results…and assumed that since the nurse took it upon herself to release the results to me based solely on the ‘No Evidence of Disease’ statement, it was more than likely that my doctor had NOT in fact read the results herself yet.  (I say ‘yet’, because I’d like to believe she’d have eventually gotten to that). 

I stewed over what to do.  I’m a bookkeeper, I am not a physician.  Maybe this is inconsequential,  you know, all things considered.  I should just relax. Chill and think of the big picture.  I’m a stage 4 cancer patient.  Cancer has just been kicked off the proverbial radar scanner.  Who knows for how long, but hey…shouldn’t I simply be celebrating?  

But on the other hand, maybe this RARE DISEASE is actually worthy of serious consideration.  Because according to my completely obsessive search of what the hell all those clues actually mean, it seems all roads lead to NRH.  (Don’t ya just love folks who self-diagnose?!?  LOL) 

NRH.  NRH.  Sounds a lot like        NRA.  Hey…now that might be a good sign.  I might be better mentally equipped to deal with NRH if I think of it as NRA.  Don’t tell ME what I need to do to protect myself.  This could require the BIG GUNS yet again, right?  I’m mentally overloaded with my self-diagnosis. So now what? 

As it happened, I had a Zoom meeting with my oncologist scheduled for the following week to review scan results which we’d assumed would be STABLE.  But just days before I went to the hospital for scans and my Godzilla infusion,  I’d had a call from her office, asking if I’d be agreeable to Zoom instead with a Nurse Practitioner.  My oncologist is in high demand, and sees 60 patients a week as it is. COVID lockdown has caused tremendous burden on her precious time.  So I happily agreed to forfeit my time with my oncologist, and instead speak to her NP, knowing that other patients were more in need than I was.  

Lordy…will her NP have a clue what NRH is?  Will she understand my concerns? And that call is still days away yet.

OR do I send my doc an email through the online patient portal? That is the recommended method of non-urgent communication. I know she doesn’t personally field those messages. Others do that on her behalf. 

Maybe I call her office and ask her admin assistant to have her call me back.  All the admin support peeps work from home because of our global pandemic, so as I thought about that option, I knew that the odds of my message getting to her in a timely basis, and with any sense of the urgency that I was certainly feeling were iffy at best. 

Do I email her directly? She did give me her direct email at our very first consultation meeting way back in 2016 when I made it clear I was coming to be under HER close watch as a top tier research oncologist…not her Resident, not her Fellow and not her NP.  I wanted a direct line to HER, and I promised I’d not abuse it.  (And I haven’t.)

I was working myself into a tizzy when I just couldn’t stand it anymore. I fired off an email to her personal email address.  I titled it “What’s this mean?” 

In the body of the email, I copied and pasted the second statement from the summary of my scan reports, and then asked simply if the elevated bilirubin and slightly enlarged spleen might be connected in some way.  The email was brief, by design.  She’s a busy woman.

Less than four hours later, at 4:45 as I was attempting to disappear into a nap, her assistant called and asked if I was available for a Zoom meeting in the next few minutes.   YES…that would be an absolute YES. 

Five minutes later, there was my wonderful research oncologist alone in a room, and on my computer screen.  I apologized for sending the email, explaining that I just wasn’t sure if her nurse would be the right one to address my concerns.  She immediately said I did the absolute right thing by emailing her directly…this is way outside the box of even the most capable nurse practitioner.    

She proceeded to ask me questions.  Any unusual fatigue?  (Yes, chemo does that.  And with COVID lockdown, I’m less active than I’d been…the more sedentary I am the more tired I get).  Do I have itchy skin?  (Yes, itch increasing over recent weeks…assumed dryness of weather, smoky air from all the fires, and allergy season starting). Any digestive issues?  (Yes, chemo tends to cause that…some infusions exacerbate it more than others, lately much worse).  Any blood when I cough?  (what?! NO!) Any changes in appetite?  (No, most everything tastes crummy).  Any bloating?  (Um…well, doesn’t that happen to all of us as we age up?  She laughed) Any change in your neuropathy?  (still numb feet, fingers becoming increasingly worse, working down towards my palms now…figure its cumulative effects of Godzilla). 

Most of these questions (though not all) are asked routinely at every single chemo session, which has been every 3 weeks for the past 6+ years.   I’m not a crybaby, so I don’t complain about the same shit every time.  I just say…no changes, all side effects still there, some infusions they seem to be worse than others.  Pretty sure the pharmacist has this chemo cocktail memorized, like a salad dressing recipe, and maybe has splashed an extra droplet or so here and there while mixing it up…which accounts for why some infusions are rougher than others.  Hey…could happen, right?  I mean, who’s watching THEM? (insert: shoulder shrug and eye roll)

With the Q & A behind us, the doc did some research of her own while I watched from the comfort of my own desk…and when she began to read some of her own findings, I began to quietly finish her sentences…she was reading what I’d already read for myself.  When she came to the specifics of NRH she was quiet for a moment and then said “There’s only 6 documented cases globally directly linked to this very drug.” I wanted to say “I KNOW!”   But of course I didn’t let on that I’d already researched like a lunatic and read the very same thing she was now reading.

Godzilla was a newly approved drug at the time I was put on it. I’d already had several cancer progressions on other drugs.  Very little is known about the long term efficacy of Godzilla.  And the 6 documented cases linking it to NRH?  Those patients didn’t even have the long run on this drug I’ve had.  They never had a break from cancer progression…that beast was ALWAYS on the march for them, even with Godzilla cracking the whip in an effort to beat it back.

After 45 minutes on Zoom, it was clear I was no longer going to be getting Godzilla, the drug that has literally saved me.   “I’m completely OFF of it permanently?    What about when cancer returns?!?”    We cross that bridge when we get to it.  Uncharted waters once again it seems.

She’d speak to a liver specialist and put in a referral for me. From a liver specialists’ perspective, this ‘rare liver disease’ typically involves cirrhosis…but of course my case has nothing to do with cirrhosis. I’ve never been a drinker, drug user, I’m just boring as hell.  So she’d connect beforehand to explain what Godzilla actually IS, review my lab work history with them, as well as my scan imagery from the last 12 months. 

We had a plan in place. A floatation device was in the pool with me now.   

Three weeks went by.  NO call from the liver specialist. And it was once again time for my regularly scheduled blood work and chemosabe time with Godzilla, which of course my doc had already cancelled.   I was alerted that the bloodwork location was now to be at the hospital campus where my oncologist’s office actually is, rather than the campus closer to me where she no longer goes to see any patients.  I was also alerted that while there, an appointment had been added to actually meet with her in person, mask to mask.   After a 45 minute wait in the exam room, a new face came in and introduced herself… a Fellow who came out of Harvard Medical School (I asked…I like to know where they went to school. This didn’t disappoint). Even from just the nose up, she was an uncanny younger version of my oncologist.  Almost oddly so.  And she already had the lab results in hand from the blood work I’d literally just had.  She researched NRH as well and was able to find a few more cases of it directly linked to Godzilla, bringing the global total to a whopping 11.  Hubby suggested maybe I’ll be number 12? They nodded in agreement…maybe so. (Insert: eyeroll here once again).  Then, she did her own Q and A about how I was feeling, did a pretty thorough physical exam for any palpable tumors that I would have somehow never noticed myself and finally stepped back out into the hall to see if my oncologist was ready to join us yet.  Fifteen minutes later, there they both were, behind their masks. My oncologist explained exactly how the spleen works, what portal hypertension means (who knew?!?), what varices suggest, and how all that works with the liver.  And she then put in another referral for a liver specialist (aka ‘hepatologist”), and this time marked it URGENT.  We wrapped up our meeting with some newly scheduled scans for 4 months from now, a plan for continued blood draws spread out  to very 6 weeks instead of every 3 weeks, and finally some eye smiles and reminders to let her know which hepatologist I’d be getting scheduled to see so she could get in touch with them first to explain the situation herself.  (Better her than me).

After they left the exam room they suddenly popped back in and asked if I’d had a flu shot yet this season.  Ummmmm…not yet.  Moments later, the NP I never did Zoom with a few weeks prior, suddenly appeared in her own mask, and we chatted casually for a while.  She lives so close to where we’d lived for years…so we enjoyed a bit of neighborhood chatter.  Then I had a needle in my arm.  The flu?!?  Ha…don’t make me laugh out loud.

Two days later with a mildly sore arm from the flu injection, I had a call from the scheduler for the office of the hepatologists. A Zoom appointment was scheduled with a hepatologist for two days out.

I got up at 6:30 am to get ready for my 8 am Zoom appointment.  (Needed that lead time to shower, dress and actually put my makeup on.  I wasn’t about to Zoom, with a doc I’ve never met, in my jammies…though it was tempting as hell.)

The first face to appear wasn’t him…it was another Fellow… but a ‘hepatologist’ Fellow.  Nice guy.  Asked a bunch of medical history questions, all of which were in my records that he already had before him.  Then he reviewed what were to be the likely next steps to sleuth out what was actually going on. I questioned the logic of every single one of them (with the exception of the very last thing he mentioned which was an endoscopy), given that the scans I’d just had would surely have revealed what they’d be looking for.  I sure as hell wouldn’t want unnecessary tests and scans that are unlikely to reveal anything different than what we already know. 

He placed me back into the Zoom waiting room.  THIRTY minutes later, two faces suddenly appeared on my computer monitor.  Here was the Fellow once again, and the actual guy I was referred to in the first place. I’d looked him up.  He supervises everyone else there, including the liver transplant team.  He’s heavy into liver cancer as well.  He started out by saying he was just stopping by to say hello…the Fellow had already filled him in.  (wha? That’s IT?)

But then he must have decided to proceed just a bit more…and said that all those things the Fellow thought would be first steps towards sleuthing out the real issue were actually unnecessary.  The only next step was an endoscopy. An endoscopy would determine if there was any bleeding from the “paraesophageal varices”.  (Don’t I sound all medical like??)

And if there’s bleeding? They would need to be banded. Do they do that while they’re in there?  Yes they do.   I’d not yet researched what banding meant, but assumed it wasn’t a big deal.  

Then in great detail he explained portal hypertension with splenomegaly and paraesophageal and perigastric varices. All words used in that 2nd statement in my summary report.  All of which, when combined with elevated bilirubin and mildly elevated liver enzymes, clearly point to Nodular Regenerative Hyperplasia.  “A very rare liver disease”. 

I did brightly ask if by halting Godzilla this would simply clear up on its own.  He dodged that question and said his focus was to prevent further damage.  He said I should not ever be on Godzilla going forward.  He hoped there were other drug options for my cancer.  I reassured him that I’m still taking a daily aromatase inhibitor…that too is supposed to help mitigate progression of disease.   But who the hell really knows for sure?  It’s all a crap shoot in the end.  I also cheerfully stated that there were zero signs of visible cancer on any of my scans.  GREAT news, yes?  Absolutely…but there was not a celebratory tenor in his reply.

We wrapped up when he said he was sorry I’d have to manage ‘yet another difficult health issue’.  I responded with an upbeat “Hey, when you have stage 4 already, what’s one more difficult health issue?” I meant it the way I said it.   He smiled and laughed quietly. 

He’s going to put in orders for more comprehensive bloodwork specific to liver, and he’s going to schedule the endoscopy in the coming weeks (or by year end).   I’ve since researched the banding thing.  I should have just let it alone.  So now I am praying that the endoscopy will reveal there is NO bleeding, thus no need for banding.  I may have to become religious over this one.

For me personally, my objective has always been QUALITY of time, not quantity of time.

Which comes to risk vs benefit. When it’s time to square off with our own mortality, the lens becomes very focused.  Little stuff fades away.  Priorities take shape real fast.   Trying to find the right combination of drugs to keep aggressive cancer from progressing, without doing irreparable harm to the other organs of the body, has its obvious risks.  Was Godzilla (‘Special K’ as another patient refers to it) worth the risks?  Absolutely. Not too many patients have had the success and long run I’ve had on this drug.

Last week I was taken aback to learn about the death of someone near and dear to my heart. She and I worked closely together for over 4 years, as facilitators for international adoptions.  It’d been about 18 months since we’d last connected by phone.  She’d been living in Hawaii for the past 14 years. Our last lengthy conversation was about her diagnosis of early stage breast cancer.  She hated the chemo and didn’t complete her full treatment plan.  Instead she was living a healthy lifestyle and going with holistic options.  She was back to feeling well and a recent check up with her medical team was all good news. That was 18 months ago.

 A strange voice answered when I called last week. As soon as I identified myself, she said “I hate to have to tell you this over the phone…”    My heart dropped.    

She lived with her adult son, who’d not known who to notify here in the states,  and her wishes were to keep it within her local circle (in Hawaii).  No funeral, not even an obituary.  She died of breast cancer. 

My heart is still so very heavy. Oh how I wish she’d called and told me her cancer was back.  It wouldn’t have changed anything in terms of her refusal of treatment, that didn’t surprise me and I’d have supported her in that decision.  Her death hit me hard because I really didn’t see it coming.  Just 18 months ago she was well, early stage (2) cancer had not returned.  She was supposed to be in the 70% club…those whose early stage cancers never return as stage 4 (aka Metastatic Breast Cancer).

She published a book of stories and poems, pushing hard to get it completed just before she died, and it arrived in the mail yesterday.  She was a gifted writer and it is because of her that I began this very blog.

I don’t know what the future holds, but I know that if there’s a Hail Mary for me somewhere, I’m likely to jump for it.  Because that’s my choice and mine alone.  The true gift of cancer is clarity.  Letting others who are NOT dealt a diagnosis of terminal illness dictate how you choose to proceed is just BSC.  In cancer lingo: BAT SHIT CRAZY.

So, there you have it.  I am again in uncharted waters, diligently using my flotation device and still swimming while continuing to #livethedash. 

Thanks to all of you for your encouragement, your concern and your unwavering friendship. 

XO

03/08/2019

Yes, and

Did you know that by the age of 85 (if you’re lucky enough to live that long), the odds of getting Alzheimer’s are shockingly high? Statistics say that one out of every TWO people will hit the jackpot.   Whoa. Say WHAT?!

Until last night, I’d assumed odds were very slim of being diagnosed with this insidious disease if there was no prior family history.  But then again, if I’d taken the time to actually THINK about it, I’d surely have known better. (Right? Surely I would have, right?!?)

Because, back in the BC (read: Before Cancer) days, I also thought the odds of ever getting breast cancer, with no prior family history, were  very slim. Turns out that was complete baloney.

Last evening hubby and I attended our monthly lecture series and the speaker was Dr. Lisa Genova. I have to admit, I had no clue who she was until I read the brief bio about her in the series brochure. So, assuming you don’t know who she is either, I’ll tell you.

She’s the neuroscientist (Ph.D. from Harvard, no less) who wrote the book ‘Still Alice’. It’s a novel about a woman in her early 50’s, who has a full and busy life until she gets upended by a diagnosis of early onset Alzheimer’s.

Dr. Genova’s manuscript was initially rejected by dozens of agents. (I think she said close to 100). The general consensus, if it wasn’t a standard reject letter of 2 sentences, basically came down to: No one wants to read a depressing story about a woman with Alzheimer’s.

So she decided to self-publish and sold copies from the trunk of her car, for several years. Finally a personal connection offered her an introduction to speak with another book agent, who agreed to read the manuscript. Although the odds of wide publication were still dauntingly slim, he decided to take a flyer on it and find a publisher.

The rest is history…a best-seller, ‘Still Alice’ was translated into 37 languages, and a few years later it became an Academy Award winning film.

Not only was Dr. Genova’s lecture last evening about Alzheimer’s Disease educational and highly enlightening, it was also engaging in the most unexpected ways.   The audience was captivated for the full hour. Afterwards, the 30 minute Q & A left us all with much to think about and personally I was so impressed with her innate ability to not only convey complex science to a broad audience in a way that was easy to follow, but to also ensure we were fully engaged with what she presented.

We learned that Alzheimer’s begins in the hippocampus area of the brain, where emotions are regulated, particularly memory. Slowly over the course of several years, the disease atrophies the hippocampus, stealing memories both old and new. Because it can take years for Alzheimer’s symptoms to surface, it’s rarely detected prior to the changes in memory behavior that become noticeably unusual.

At very late stages of the disease patients will have lost the ability to swallow, because their memory of even the most basic functions are wiped out.

Dr. Genova decided to write a novel about Alzheimer’s after watching her beloved grandmother rapidly decline with the disease. Frustrated over lack of understanding, she decided to delve into heavy research. Rather than pursue the science of it, she went after the reality of it…the human experience.

Having sympathy for someone does not bring you enlightenment or understanding, even if you think you can relate in some way. And quite often, when it comes to Alzheimer’s (and this applies to late stage cancer as well), a stigma comes along with it. Alzheimer’s (and cancer) are scary subjects. People are afraid of what they don’t understand, so rather than truly engaging with someone diagnosed with a terminal illness, they tend to back away. They express sympathy, but don’t have the empathy to step up and truly engage in a meaningful way.

Dr. Genova spent 18 months speaking with dozens of Alzheimer’s patients, and maintained ongoing conversations with them as their disease progressed. During that time, she began to write the novel ‘Still Alice’ (at Starbucks!) with the intent of shedding much needed light on a difficult subject matter.

By creating a fictional character to personally narrate their own story and the ensuing odyssey of coping with initially subtle symptoms of confusion, then more advanced symptoms that became impossible to ignore, the character she creates brings us along to hear the stunning diagnosis of early onset Alzheimer’s, and the aftermath of it’s impact on those she loves the most; her family.

Dr. Cordova envelops the reader as she exposes them to the shocking realities of what it truly means to become diagnosed with Alzheimer’s Disease. Decline of the mind can be slow, but it’s always relentless as it continues to march towards ultimate death.

Though advanced stage Alzheimer patients will lose the ability to recall the names of their loved ones, and often revert to their earliest childhood memories until those too vanish, it is important to remember that they can still experience emotion such as joy, sadness, anger and even love.

Sadly, it’s not uncommon for people to walk away from their own family members who’ve been diagnosed with Alzheimer’s. It’s scary, so they back away from what they don’t understand.

“My mom has no clue who I am anyhow. She keeps telling me she’s waiting for her mommy to pick her up from school. I had to tell her, ‘Your mother has been dead for 50 years! She’s not coming for you.’  So, I just stopped going to visit, it’s pointless.”

But, is it?

The next key talking point of the lecture was a concept that Dr. Genova calls: Yes, and

It’s actually pretty simple.     It’s not about you!  So instead of finding fault or correcting what they’ve said, try saying “Yes and… “

“Yes and while we wait for your mommy, shall we have a cup of tea together?” This was the very example Dr. Genova used.  Just play along.  Step into their reality and experience the emotions with them.  Even if you disagree, the dialogue can continue rather than end in a frustrating disconnect.  When you experience someone else’s reality,  you can actually gain empathy and that in turn brings compassion.

Yes and can apply to every situation in life.  Every single one.  It’s how we find common ground.

So, I’ve been thinking today about all the many things folks have said to me over the past almost five years…in their effort to be supportive of my own health situation. One of the most memorable comments made to me was when a woman who used to work with me blurted out one day that “coffee enemas can “cure” your cancer.”

I looked at her with probably a bit too much intensity before I finally said “And you know this how?”

Turns out her sister was “cured” using coffee enemas, which she began after completing chemo and radiation first for her early stage breast cancer.  In hindsight, I now realize what I should have said:

“Yes, and did you know that if you brew a fresh cup of Folgers, pour it into your left ear canal, it will trick your brain into thinking you’re a kangaroo in the Australian Outback?”

*for those readers taking offense to this notion that coffee enema’s don’t in fact cure cancer, I suggest you just keep on doing your own enemas. Seriously, whatever floats your boat. Go for it!

So, what’s The GOOD News when it comes to Alzheimer’s? The gene risk: whether you carry a genetic component for Alzheimer’s or even if your parents both are/were gene carriers, this is not a guarantee you’ll in fact develop Alzheimer’s yourself.

There are in fact some things we can all do to lower our risk of Alzheimer’s (aside from making sure we die before we’re 85).

  • Stay away from alcohol and smoking (do I sound like your mother?) Both are known risks for Alzheimer’s. Both literally reduce the health of your brain, not to mention the rest of your body at large.
  • Stay cardio fit.
  • Mediterranean diets are apparently proven helpful to reduce risk of Alzheimer’s. Who knew? or…did I…… just forget?

But if you just can’t manage any of those things…there’s still a glimmer of hope.

  • Learn NEW things. Because the brain benefits from learning NEW things. Here’s some examples we were given:
    • learn a new language,
    • learn a new sport,
    • read a new book,
    • see a new movie,
    • take up a new hobby,
    • go on a new adventure.

All these new things help to restore some critically important brain cells that might have otherwise been lost for good to Alzheimer’s.

STOP DOING CROSSWORD PUZZLES! You are recalling things you already know. So just stop it, okay?

So, I came home last night and thought about my own life.

  • I quit those silly crossword puzzles long ago when I realized I had no idea who the Hollywood hotshots were anymore,
  • I’ve taken up a new hobby (watercolor and acrylics) that I am enjoying,
  • I’m reading books of fiction and memoirs regularly,
  • I’ve brought a German Shepherd into my home that simply needed consistent and clear direction (so that’s basically an ongoing devotional between this dog and her adoring humans), and
  • I’m balancing my busy work life while also managing my never-ending schedule of cancer care. In that department, I have carved out time to become a volunteer for a wonderful organization in NYC called SHARE…they educate and empower women affected by breast or ovarian cancer by providing a multitude of support services.

Just this past week, a client remarked how well I looked, and she followed that up with “you must be doing really well.” I couldn’t think fast enough, so I simply smiled appreciatively and re-engaged with the task at hand, which was showing her the monthly financial reports.

But in hindsight, I should have replied with “Yes and thank you!”

Because I am doing really well. Godzilla and Portia both have my back. I’m blessed to have an oncologist who is in dogged pursuit of a breakthrough for Metastatic Breast Cancer. Do I understand the actual realities of this disease? Yes, and although I am living with them every day, I am still just so very grateful to still be living in the here and now.

Blessings to you all, dear friends.  xo

#LiveTheDash

 

 

 

10/29/2018

Trick or Treat?

Thank God October is almost over. If you believe all the media hype coming from those pink campaigns, you’d be convinced that in this day and age no one dies from breast cancer anymore…unless they simply didn’t take care of themselves. Sure, they lose their hair, they get chemo and radiation and then… they re-emerge from the darkness to live full and long lives.

These campaigns spotlight survivors everywhere, celebrating the end of their “cancer journeys”… living their lives with relief that they had “the strength and personal empowerment to beat cancer!”

That’s all complete crap.

Because the fact of the matter is, no one dies from breast cancer. They die from METASTATIC BREAST CANCER. And all those jubilant survivors? Thirty percent of them, no matter how clean they’ve lived their lives, thirty percent of them will be diagnosed again, maybe just months or maybe years later, with stage 4…metastatic breast cancer.

This cancer doesn’t care how old you are, what the color of your skin is, what language you speak, or what country you were born in, and it doesn’t care about the foods you eat (or don’t). It doesn’t care what gender or religion you are.

It doesn’t discriminate. Period. NO ONE is immune from getting breast cancer or even metastatic breast cancer. It’s all a complete crap shoot.

The five year survival rate of metastatic breast cancer? Just 22%. You don’t need to be a math whiz to know those odds stink.

Can YOU imagine? What would you change in your life if you were handed that diagnosis? Would you cut through the noise to insist on hearing the narrative?

Would you decide who does and does not bring joy to your life? Would you choose to take on new hobbies as you watch the old hobbies take a back seat to your disease? Would you be willing to take daily chemo pills and/or attach yourself to an IV every three weeks, like clockwork, that drips cancer-fighting drugs into your body in an effort to stop the charge of an insidious disease…the same disease that garners a paltry 7% of all dollars raised in an effort to ‘find the cure’? Nancy Pelosi would call that “breadcrumbs”. Of all the billions of dollars raised, funding towards research to find a cure for the only stage of breast cancer that kills gets measly breadcrumbs. Sounds like a very cruel trick to me…but well, hey.

Tomorrow I meet with my oncologist to discuss results of my recent scans. A nurse told me the scans looked great…BUT.   It seems there was something new… ground glass, seen on one of the CTs.

Huh? Is this a TRICK?  Ground glass isn’t a medical term I’m familiar with and although Google tells me what it often refers to, I’d like confirmation from my oncologist that, in my particular case, it’s nothing cancer-related.  It may in fact only be the ghost of my nagging cough that struggles to go away due to damage left in my lungs by radiation.

Yet, it still sort of feels like a TRICK…but I’m hoping not. Because I really want to do that happy dance…but not until I hear my doc declare that I’m STILL STABLE.

Please oh please oh please.   My TREAT? Godzilla #55 will be tee’d up for me tomorrow. #BringIt

08/06/2018

Who Knows Best?

So today, while Godzilla was kicking cancers ass, the woman in the chemo chair next to mine decided that she, not her oncologist, was better informed on the manner in which to treat her severe dehydration. Her nausea was bad, and she was complaining about her inability to stay hydrated. Apparently, she then tried to light up a joint (privacy curtain was pulled between us, I couldn’t see her) and when the nurse told her she couldn’t light up on hospital property, she went on this rant about how UCSF is in the dark ages and that her doctors in Alaska (!) know far more about how to treat cancer than the clueless f-ing doctors here at UC f-ing SF. And with that, she dialed her “bro” from her cell phone, told him to come back for her. “I am NOT wasting a full f-ing hour here getting NOTHING but saline!” she barked into the phone. The nurse offered to call her oncologist right on the spot. That woman was already out of the chair, and preparing to head directly out the door.
I couldn’t help myself…I leaned forward and peered around the privacy curtain. I’d assumed this was a younger woman, but nope…she looked about like me, but with no hair and sporting a rad chemo beanie. Probably made in Alaska. Her face looked so drawn and fatigued, I couldn’t be sure but I’m guessing she’s not early stage. But either way, I’d say her emotional rope, whatever remains of it, was quite thin.
Ya can’t make this stuff up….and that movie line just keeps on playing over and over again in my head. You know the one. “Help ME help YOU.    HELP ME….HELP Y O U !!!”
That woman’s got a rough rodeo in front of her. Hope she’s got some good strong weed…she’s gonna need it.

Soooo… Godzilla #51 is in the books. Wonder what #52 will be like. I’ve got three weeks to ponder the possibilities.

05/17/2017

Efficacy: It’s the Elephant in the Room

I’ve never been a risk taker by nature. I’ve always preferred to play it safe (maybe to the extreme), but I do know my limitations and what my personal triggers are for debilitating fear. Even hubby can attest to that. Decades ago, hubby and I were skiing at Beaver Creek in Colorado. It was quite new at the time, so the terrain was unfamiliar to us. Much of it most of it was more challenging than I’d normally ski.

We were on the slopes early that day. Although we did stop briefly for lunch, by mid afternoon I could feel the fatigue coming on. And as all skiers (and snowboarders) know, it’s never good to ski when fatigued. That’s when stupid shit happens.

Hubby, on the other hand, is like the Energizer Bunny. He only stops skiing when the chair lifts stop running. So at 2:30, he still had another hour and a half before he’d be forced to pack it in.

We pulled out the trail map and examined it together.

“You want the fastest way down or the easiest way down?” I was surprised he had to ask. But for an instant I actually did consider both options. The fastest way down was incredibly appealing.

“I want the easiest way down.” Okay then.

He studied the map for another moment and then pointed out which trails I had to get to that would lead me to the easier stuff…and ultimately to the lure of hot-spiced wine and comfortable chairs. He pointed to a cut-off run that was important not to miss. I pulled off my sunglasses and looked at the map carefully to be sure I knew where it was. Then he folded the map back up and handed it to me. I stuffed it into my pocket.

“You think you got it okay?” he asked.

Yup, I got it. And I couldn’t wait to unbuckle my ski boots and free up my feet. We hugged it out and parted ways. Adios, Jean Claude! (For you young ‘uns, Jean Claude Killy was a French World Cup Alpine Ski Racer, and hubby had skills so far beyond my own that I got in the habit of calling him Jean Claude on the slopes).

Skiing solo now, I cruised along in fine form being careful to follow the route we’d mapped out. I got to the cut off area, clearly marked, and proceeded. Within two minutes or so, I noticed that this slope was getting steeper and substantially more challenging. Down below it was a lot more narrow. I tried to slow my rhythmic pace, not wanting to gain any more speed than I already had.

I could feel the first subtle signs of uncertainty, the feeling of being in over my head. My heart began to thump louder, my legs began to feel clumsy and weak. I decided to stop and ‘regroup’ (read: get my shit together). The one skill I’d gotten really good at was halting.

Smack dab in the middle of this unexpectedly steep run, I adjusted my sunglasses to look for a better line, thinking maybe I should just traverse more…but I don’t really like traversing …its hard to find any rhythm that way. So I looked down slope. I could see there was a left turn down there, where it would take me to the easy stuff. I’d noticed it on the map, but didn’t expect it to be more than an easy swing to the left, where the trail cut through the trees to dump me out onto an easier run…the easier way down.

Shadows were beginning to get really long, so I removed my sunglasses to really study that turn.

Damn it. It was actually a stiff 90 degree bend. The steep approach made me extremely nervous. I’m not the sharpest crayon in the box, but I am smart enough to know that if I picked up too much speed and couldn’t make that hard turn…then I’d be going right off the edge to the great beyond. Earth literally ended there. Nothing but sky beyond that edge. No tree tops, no nothing.

My heart began to race like a drunken jackrabbit. I pulled the map back out, and opened it up. What a waste of time that was. So instead I assessed the steepness of the slope that was behind me, the stuff I’d already skied. Good grief…stop being such a baby! You’ve already skied down THAT for Gods sake!

I surely had options, so I began to go through them. I pondered taking my skis off, but dismissed the idea because of the steepness of the slope. Knowing me, I’d trip over my own ski boots and fall anyhow. Then I’d for sure tumble all the way down there and right off that cliff into the vast expanse of nothingness. I decided taking my skis off wasn’t wise.

So I stood frozen, chastising myself. Just get on with it already! Do it! Go! Damn it, GO!

No no no no no! I’ll gain too much speed! What if I won’t be able to slow it down? I literally could ski RIGHT OFF THAT CLIFF! (Mind you, I had just recently watched the movie ‘On the Other Side of the Mountain’. It was very fresh in my mind. It’s the true story about Jill Kinmont, the National Women’s Slalom Champion ski racer. If you love to ski but haven’t seen this movie…don’t. JUST DON’T, okay?)

So I did what any smart woman would do. I went with Option B: I sat down.

I listened hard for sounds of any other human activity. Couldn’t hear much beyond the pounding of my own heart. I mumbled to myself, berated myself, and inhaled the mountain air deeply. Then I heard…well, nothing. Nada. Silence, except for the sound of the chilly wind whispering through the pines. Clearly, there were no skiers coming down this run. Apparently everyone but ME knew to stay off this lousy slope.

My mind wandered for a while, wondering if I’d left out any other options in my thinking. I felt a chill. I glanced at my watch. 3:45. JEEZ….I’d been sitting there for… what? Almost an hour? Daylight was running out. I could see a chairlift way off in the distance, through the tops of those pine trees. I caught glimpses of riders, though there weren’t a whole lot. And it was far enough away that I couldn’t hear their voices. So I continued to sit.

The long sunlit shadows quickly disappeared completely giving way to the approach of winters early twilight. I looked at the sky. Clouds were bunching up, and I wondered about the moon. Soon it would be dark. Seriously dark. And I actually thought to myself this bizarre notion: Well, I guess they’ll dig me out at spring thaw.

 I glanced again at that chair lift. No more riders. The chairs weren’t even moving now. I wondered if hubby would be the one to alert ski patrol, and how long it would take him to realize I’d never made it off the mountain. Would they send up snow cats with huge headlights to find me before I froze to death?

It’s an extremely thin line between insanely idiotic and absolute stupidity. On that particular day, insanely idiotic clearly got the best of me, but absolute stupidity got some pretty good shots in as well. I knew time was running out. And I began having conversations with myself. Just suck it up and DO IT! DO IT! STAND UP AND JUST DO IT!

I was so startled by a whoosh above me, that I twisted around in a panic to see what or who it was. OMG! It’s Jean Claude!

He came to an impressively abrupt halt, just inches above my head, spraying snow all over me.  He’d been clearly startled to see me sitting there. With a very red face he yelled “What the HELL are you doing here?!” I made note that he was not concerned for my safety…no ‘Oh Honey!!! Are you okay?’ I guess he knew my look for debilitating fear better than I’d realized.

So I replied (not so nicely): “What the hell do you THINK I am doing?!” And I pointed angrily towards the steep stretch below where that cliff was waiting to hurl me over the edge. For clarity, I yelled the obvious; “THAT CANNOT POSSIBLY BE THE EASIEST WAY DOWN!”

He was a bit slow on the uptake that day, but the tears slipping down my frozen cheeks must have clued him in. His voice was a tad kinder when he asked if I’d been sitting in the middle of the slope the entire time.    DUH.      I had no words…only the emotion of someone balanced precariously between the insanely idiotic and the real desperation of absurd stupidity.  To his credit, he said nothing further, but suddenly skied around me and stopped about 10 feet below. At first I thought he was ditching his lunatic wife. But, nope. He turned his skis horizontally and turned his upper body towards me, then extended his ski pole like a fencing sword.

“Grab on,” he said calmly.

Huh?

“Just do it!’ he said in a voice that sounded somewhat miffed, but probably wasn’t really meant that way…maybe it was meant to be more like; oh for crying out loud!

So I grabbed on, and he skied (are you ready for this?) HE SKIED BACKWARDS down this shitty steep slope while towing me…a petrified little baby. I knew then that I was safe. Jean Claude had come to my rescue.

As he towed me closer to where I could clearly see the hard turn we’d have to make, I released his pole and whizzed right on past him. “Thank you!” I yelled out, my voice still choked in emotion. I careened around that ominous turn to the catwalk trail and took only a brief glance at the cliff I might have gone over. It wasn’t quite the drop off I’d envisioned…but it wasn’t a slope I’d have had the nerve to try except in my dreams.

We skied the narrow trail through the trees for a short distance and suddenly it opened up to a wide expanse of much kinder terrain. I literally FLEW from there, all the way down to the bottom, barely beating Jean Claude to the finish (he’d slowed it down to keep track of Miss Paranoid).

Later, when I asked Jean Claude how he’d ended up on that very same run himself, he told me he’d simply wanted to see what those slopes were really like that he’d mapped out for me.

…So, I told you about that day because it illustrates what was probably my finest example of debilitating fear. Debilitating fear is exhausting, like running on a hamster wheel. The more you run, the more worked up you get. And it’s irrational. You can’t get off the wheel until you stop running. Which brings me to this…sometimes in life, there simply are no easy ways to jump off the hamster wheel. Our choices will always have consequences, but until we actually act upon our decisions, we can’t know with any real certainty what the result will yield.

When it comes to my health, living with an aggressive form of metastatic cancer, there’s no standard of care, not really…because the science of cancer is different in each one of us, given our own unique DNA and cellular structure. Drugs that work for some don’t work for others, even with the exact same pathology results. Cancer continues to be truly the ‘Emperor of All Maladies’ (boy, how fine a title was that for the book that details the history of cancer?)

These past almost 12 months, I’ve not been writing much. I’ve thought about it…wondering how to express what’s really going on in my heart and in my head. But it’s been rather a rough time emotionally, with the unexpected twists in life, which included the unexpected death of a longtime friend close to my heart, as well as the passing of our beloved dog, Charlie.

Distracted by a sadness that I cannot adequately articulate, I simply walked away from the writing for a while. But people have been asking. How am I doing? Are my treatments finally over? I’m looking well, so it makes sense that they’d assume the worst is behind me. I wish it were true. But that’s just not the case with metastatic breast cancer. It’s never going to be behind me, until all treatments stop working and I transition to whatever is in front of me, in the great beyond.

The good news is: last scans in February showed that my cancer hasn’t spread beyond where it already dwells. I continue to get chemo every three weeks, and I get scans as well as an echo-cardiogram every three months. I get blood draws one hour prior to my chemo infusions checking to be sure my counts are not dangerously low (or high), and they also monitor my liver enzymes closely to be sure my liver function isn’t suffering. (Godzilla can cause liver failure and it’s cardio-toxic as well). Because of yet another oral chemo I’ve been on for these past two years, my bone density has been compromised. So now my bones are at high risk for fracture.

My oncologist has ordered bone-strengthening injections that I’d get just twice a year. Potential and most worrisome side effect of these injections is something known as jawbone necrosis (yup, it’s as bad as it sounds). However, my insurance denied approval for the injections. My oncologist has appealed their decision to deny this drug, and is insistent she will in fact get their approval. So presumably I’ll be getting this injection at some time in the not too distant future, unless Obamacare refuses to accept the treatment advice from my oncologist, one of the leading research oncologists in the country at one of the top ten cancer research centers in the nation.

In the meantime, I was advised to get any pending dental work done before they start with the injections. Because, well…we sure don’t want my jawbone to die off before I do.

Side affects from Godzilla have slowly been building in their intensity over recent months, and have begun to take a toll on my quality of life. I discussed this with my oncologist. We spoke about the options to alleviate some of these side effects, the worst of which is peripheral neuropathy in my feet and hands. I can’t walk the distance of a nine hole round of golf, I can’t grip the club head with much strength, and my tingling achy fingers tend to stiffen up so much, I can’t unbend them without using my other hand to do so. These symptoms distract me now at work as well.

She suggested a prescription drug called Gabapentin, known to be very helpful for neuropathy, but it’s one of those that I’ve seen advertised on TV with a litany of potential side effect warnings that include “THOUGHTS OF SUICIDE OR EVEN DEATH”.

Ummm, NO thank you. Why would I take a drug to alleviate side effects that would simply add more side effects of its own? We also discussed skipping one round of chemo (my idea). I figured six weeks between infusions instead of three weeks would be like a gift to myself. I could enjoy some relief and maybe one or two rounds of golf, or just a good long walk. Then I’d return to the party.

My oncologist looked at me as if assessing whether or not I was insanely idiotic or just incredibly stupid. “These drugs are keeping you alive! So why wouldn’t you take the Gabapentin to manage side effects? If that doesn’t work, we just stop and look for another alternative.”

The idea of one more drug in my body is so unappealing to me. And she must have noticed my hesitation to respond. So she then suggested a reduced dosage of Godzilla, but just for two or three rounds, to see if there was any difference in my side effects. “BUT”, she declared, “We don’t know what the efficacy will be. Right?” (As in: comprende?)

So.  Efficacy. That’s a word I don’t hear real often.

“Let’s reduce the dosage 20% and see how that works”, she continued. “Then, after just two rounds you let me know if you get any relief, and if not we’ll crank it back up to full dosage.”

I negotiated for only a 10% reduction, but she didn’t think that would be enough for any favorable relief. So forty minutes later, Portia got plugged in and Godzilla got hooked up…at 80% of my usual dosage. But still the nurse took full precautions. She broke out her long protective coat, face mask, and gloves before handling the bag of liquid drugs; no one wants Godzilla exposure. Seeing the nurse in this attire is a constant reminder that in order for me to live in the here and now, it comes at a price… not just to me, but to my caregivers as well. These people are truly angels on this earth.

The very next morning after my infusion, I woke up quite surprised that the neuropathy in my hands was noticeably improved. None of my fingers felt stiff. Same in my feet…the feeling of swelling, burning sensation and tingling had definitely improved.

So, now I can actually walk greater distances with less pain, and I can actually knit without my finger joints stiffening up to the point where I have to use my other hand to unbend the fingers into neutral position once again. (It’s quite bizarre, really). I no longer get distracted at work with my feet or my hands. But it has come with a price.

After two weeks of enjoying this newfound relief, I emailed my oncologist because I’ve literally been losing sleep over this efficacy thing. “Good news!” I wrote. “Noticeable improvement! But I’ve been thinking about what you said about not knowing the efficacy of this reduced dosage. So I would like to crank it back up to full dosage next week and just try the Gabapentin instead.”

 Within minutes, she replied. “Very glad to hear about the improvement in your neuropathy. I would recommend that we stay at this dose for the next two or three cycles. Then we can go back up and see if the neuropathy comes back. Sound reasonable?”

Life is just so unpredictable.

My next round of tests and scans is in six days. I’m trying not to think about it, because the efficacy of this reduced dosage will be revealed within the results of these tests. But I am proud to say I am certainly not frozen in fear, because knowledge is POWER. And there is no finer truth than the knowledge that life is just incredibly unpredictable. Anything can happen. To anyone. At anytime.

I have Jean Claude by my side. The road ahead may be limited in its distance to my final destination, but the timeline I’m on is my own. I’m not interested in the fastest way forward, or even the easiest way forward. I’m just navigating the slopes as best I can. And if I have to take a breather to regroup, without apology I will sit right down until I know for certain that I can navigate that next turn on my own terms.

#gonebutnotforgotten #livethedash

06/02/2016

What Call?

Balance. It’s critical to so much in life.

Early in May, I had another round of tests and scans, all in one very long day. I had an echocardiogram to see if my chemo (Godzilla), has negatively affected my heart since it is cardiotoxic. Then I had a PET scan, followed by a CT scan.

I had to advocate for myself in order to get those scans, because my oncologist preferred to make the assumption that I’m ‘stable’. She wanted to simply continue with Godzilla infusions every three weeks and change nothing until I ‘feel symptoms’. Huh?

“So, how will you monitor me without scans? How will we know if cancer is progressing or not? You want to wait until I can’t breathe? Until I begin to cough? Or feel crushing bone pain?” I tried hard not to sound stunned, but even more than that, I tried hard not to sound pissed.

She’d be monitoring my tumor markers instead, she told me. You mean the blood tests that have consistently shown that my tumor markers are all within normal range? THOSE tumor markers? ….seriously?

I got a shoulder shrug and a demure smile in response. I glanced at my husband. He was as baffled as I was. BUT…I’m quite sure she’s the smartest in the room when it comes to cancer.

As if she was new to my case, I reviewed it with her. I’ve never felt symptoms in all this time, aside from the side effects of chemo. From the beginning I’d been getting scans every three months, as is protocol for active stage four cancer. And scans are the only way to find out if my cancer has actually progressed. I know this as fact, because late last year my PET scan showed ‘extensive progression of disease’…and she promptly upended my entire treatment plan. Godzilla was brought in to replace those two sniper drugs I’d been getting.

So, do I want to wait around now until cancer pain rears its ugly head? That would be a resounding NO. But my oncologist reiterated that I should just wait and see, as she would not be ordering scans.

I stewed for two weeks over it. Then at my scheduled appointment with an oncology nurse, I pressed her about it. “Isn’t it time I get scanned again?”   She glanced at her computer screen and immediately said “Yes! It’s been over four months. I’ll get the scans ordered for you.”

I told her what the doctor had told me…about holding off on scans until I had physical symptoms of cancer. Bless her heart, she didn’t hesitate and said she’d put a call in to the doctor herself and get them ordered. MY HERO! And, true to her word, the following week I had my scans. All in one day.

But the last thing I was expecting was a call the very morning AFTER my scans. Caller ID displayed the number of my oncologist’s office. Odd, I thought. I never get results this fast.

But the voice wasn’t the voice of my oncologist or any of her staff. It was a voice only vaguely familiar to me. He identified himself as one of the partners in her office, explaining that he was calling to deliver my test results since she was away for the week. Whoa, I thought. Results so soon?

His voice was somber and flat. I could picture him. I knew him only by sight, sometimes he passed through the reception room, unsmiling, unfriendly. But I wasn’t his patient, so what did I care?

He got right to it. drawing out the first syllable for emphasis apparently.   “Unnnnfortunately…”

WHAT THE HELL KIND OF WAY IS THAT TO START A CONVERSATION WITH A STAGE 4 CANCER PATIENT YOU DON’T EVEN KNOW?

It went downhill from there. For me anyhow. The conversation was short and awkward, primarily because I immediately retreated inside my own head. I really strained to stay ‘present’…in an effort to hear him out. But I was already in some far distant place, so my ears and his words weren’t exactly compatible for optimal effectiveness. But I did catch his last sentence clearly…the one about my own doctor returning next week and likely having other drugs to try. His delivery tone wasn’t any more upbeat with that news either, unnnnnfortunately.

For the first time in my life, I thought I might actually hyperventilate. And I knew I had to make a really quick decision. Fall completely apart or find my balance.

Easy choice for me.

Hubby was getting ready for his day, so while he was turned away from me, I angrily blurted the test results. Immediately he stepped close to wrap me in his strong arms, and I could see the sheer pain or maybe fear in his eyes….but I stepped away. I just couldn’t. If I let him get those arms around me, the tears would be an absolute flood and impossible to stop…clearly for both of us.

So, I did the only thing I knew to do. I simply chose to pretend I never got that call. (What call?)

I marched into my day, getting ready to leave for work with record speed. I walked out the door within minutes, and pulled away from the house. What call?

I cranked up the radio determined to stop thinking about anything at all. I let the music just carry me away. And then it became suddenly talk radio. They were discussing the idiots who pay upwards of $29,000 for some other idiot to pick out the perfect baby name. The radio folks had my undivided attention. I kid you not. It’s really no joke: http://www.goodhousekeeping.com/life/news/a37971/professional-baby-namers/

The next thing I knew I was parking my car almost 20 miles from home. No recollection of how heavy the highway rush hour traffic was or wasn’t. All I know is I found myself pulling into that familiar parking spot some forty five minutes later. A tear suddenly escaped as I thought of my hubby, left to fend with this news on his own. But truly, I just couldn’t go there and realized only then that I probably shouldn’t have said anything at all to him. But, too late.

It was a very busy and full day at work. I was completely absorbed in financial software, spreadsheets and bank statements. It could not have been more perfect. And by the time I left the office to return to my car, I felt almost like a normal person, still thinking about those complete imbeciles who pay over $29,000 for some complete stranger to come up with the perfect baby name. Damnit. Why didn’t I think of that?

My next scheduled appointment with my oncologist was still ten days away. I thought that maybe she’d call me, just to go over the results prior to my appointment. (But nope… that didn’t happen).

So I became immersed in the evening hours of the subsequent passing days by doing my own research on chemo options and drug combinations. On clinical trials. On revolutionary medical equipment and technology. On cancer research institutions around the country seeking out the best of the best. Turns out two of the top ten are right in my own backyard.

Now, more than ever, it just seemed to be a good time to seek out another medical opinion. Get a second set of eyes on my case.

And I came up with two names, both highly skilled oncologists heavily involved with clinical trials specifically studying cancers like mine. One doctor at Stanford and one doctor at UCSF.

I alerted my amazing and wonderful Internist as to my intent. (She bird-dogs everything for me. There isn’t enough gratitude in the world for her).

I told her I’d reached out to the guy at Stanford first. (My daughter went to Stanford. I thought maybe that would play in my favor…LOL). The good news: I could get an appointment, but the earliest appointment I could get was six weeks out. The bad news: it would not be with the doctor I wanted to see. I’d only be able to see the one guy they have who offers consultations and second opinions for their cancer center. And if I’m going to see that guy, I may as well go to any guy at all. Because that guy is NOT the guy I specifically want to see. So, never mind.

Then I called UCSF. Turns out my internist had just greased the wheels for me there. I got an appointment the very next week with the very doctor I did want to see. And it was scheduled just a few days AFTER I’d be meeting with my own oncologist anyhow. Perfect.

I was a bit nervous going in. I already had the news but did she know I already had the news? And if she did, why the hell did she make me wait ten full days, KNOWING I had this crappy news? Would her tone be more encouraging than the other guy from her office who called me so early that morning?

Nope. She began with the exact same word: “Unfortunately…”

It’s very clear to me that there needs to be a refresher course for oncologists on how to deliver news no patient wants to hear. I have a few suggestions. How about this:

  • (in an upbeat tone of voice) So, your scan results are in! As I look at these, they give me a clearer picture of what our next steps should be. Not the results we’d hoped for, but not to worry! We have other options. OR
  • (in an upbeat tone of voice) well, it seems that Godzilla has taken a break on this round, so let’s try something different to see if we can’t improve things here. OR
  • (in an upbeat tone of voice) Here’s your results. Lets go over them together so I can explain what they reveal. It’s not doom and gloom time yet, but let’s discuss next options. OR
  • (in an upbeat tone of voice). So, talk to me. How are you feeling? (I reply that I’m feeling quite well, actually, all things considered). Well, that’s just incredible! You are one amazing study on how to just push forward with this nasty disease in tow. So let me tell you what the scans reveal so we can think about the best way to proceed here. And when we’re done, you and your husband should go enjoy a nice dinner with a glass of wine (just this once) to celebrate that you are doing so incredibly well, in spite of what this scan report says.

After a sobering discussion (but not all that wordy since she is a woman of very few words herself), I asked a ton of questions and offered thoughts of my own about next, or alternate, or additional drug options (“Now that’s intriguing…” she said after I mentioned one new drug in particular), she concluded that I should simply stay the course with Godzilla.

Didn’t see that coming. She said that although there’s progression of disease, it seems that Godzilla is still the best option at this time. Not too happy, I managed to convince her to add another drug as well, one of those sniper drugs I’d had last year…it had worked for 13 months before she traded it out.   Maybe Godzilla just needed one additional sniper on his team. “If I can get your insurance to cover it,” she replied.

Hubby sat up straight and leaned in. With the directness of a skilled senior level Manager of All Things Complicated, he asked if insurance played a role in her decision to not do scans.

Bingo. The elephant in the room suddenly appeared. Insurance companies dictate much of medicine today. They have the power to deny treatment, scans, whatevers. And clearly my doctor found that battling with my lovely Obamacare insurance wizards was quite stressful.

So, can you guess how that made me feel?

At the very end of the appointment, I told her I was getting another set of eyes on my case in the form of a consult at UCSF. If she was surprised, it was only momentarily. She said it’s always wise to seek another opinion. She also said UCSF offers many clinical trials that could be of use to me down the road (I already knew this from my hours and hours of research). We stood up to leave and as she came around her desk, I gave her a quick hug. Awkward for her…she’s not much of a people person…she’s more of a DOCTOR person, if you get my drift.

UCSF: We arrived a full hour early, because I wanted to be sure we could find parking. I knew Clinton was coming to San Francisco that day, and I had no idea where the event was, but I didn’t want to take any chances with parking. Hubby humored me and we left the house at 2 p.m. for a 4:30 p.m. appointment (stop snickering all you peeps who KNOW exactly how far we are from the city!)

All my medical records had been sent ahead of time, but I hand carried my pathology slides from 2014. I was fully armed…with two pages of carefully crafted and researched questions. Lots of them, very specific to my scan results, my pathology, even my options when ‘the end’ was well within sight.

Side note: No, I don’t dwell on dying. We’re all dying. You. Me. Those guys. Them. All of us. But as long as I pretty much know HOW I’ll be dying, I like to plan ahead. For my loved ones, I want it to be a calm peaceful experience, not a horrific or terrifying one. So yes. I needed to know what this doctor at this cancer research institution thinks about that too.

So, with four duplicate sets of questions, all collated and stapled neatly, I was more than well prepared. Since we’d arrived so early, I actually started to worry that I might become distracted completely just by sitting around mindlessly. I didn’t want to lose any focus on the purpose of this mission, so I debated about how to STAY focused with all this time on my hands.

We weren’t in the reception room five minutes, when my name was called. WOW! Getting here early paid off!

A nurse took all my vitals. Hubby came into the exam room with me, where I was told to get into an exam gown. Lovely. Then we waited for well over an hour before anyone else came in. I wondered why I had to be in an exam gown. JEEZUS. You can’t SEE it. But trust me. It’s there. PET and CT scans don’t lie. Wasn’t it obvious I have cancer? And who f-ing cares what my temperature is? I have stage 4 cancer! WHAT DIFFERENCE NOW DOES IT REALLY MAKE? (…wait, where have I heard that before?)

It was a very small, windowless and claustrophobic exam room. Hubby napped in an uncomfortable looking chair, while I took pictures of him and sent them via text to our daughter.

Look! Dad’s so bored he’s taking a nap! She worries about me from thousands of miles away.

I sat on the exam table, swinging my feet to and fro…until my back began to get tired, and then I moved over to the desk chair clearly reserved for the doctor, since it was perched in front of a desktop computer, with a monitor flashing instructions on how to detect a stroke, of all things.

Hubby continued to snore and I listened intently for sounds from the outside world. For a big medical center, it seemed damned quiet out there, unless folks were skulking around silently. The door was closed, so I couldn’t be sure. I glanced at my watch. 5:15. Just us and the janitors now. The clock kept ticking.

FINALLY…footsteps. Hubby snapped to attention.

Two people swept into the room with white coats and stethoscopes. A ‘Resident’ and a ‘Fellow’. (It’s a teaching hospital, after all). I vacated my seat in front of the computer. The Resident never uttered one word after her brief intro, but she quickly sat in a small side chair pushed back into the corner. From there she sat directly behind the Fellow who positioned herself at the computer. I went to climb up on the exam table, but was told to take a seat in the chair next to the desk. It was already piled high with my purse, my glass water bottle carefully propped within my clothes, and the file folder holding my multitude of questions along with additional sets to hand out. Oh…and the large puffy mailing envelope that held the pathology slides I was told to bring along (and had to pick up from yet another location in the city where pathology slides are apparently stored).  So I pushed it all off the chair and down to the floor. I took my seat beside the desk.

The Fellow was already clicking away on the computer, and she launched into my medical history. I kept staring at her hands…she typed faster than the speed of light. I’ve never seen anyone type that fast…with any accuracy. It made me nervous. She typed like a crazy woman… even between questions which only required a YES or a NO answer. Wow. Typing. Just typing and typing and more typing. Clickety clickety clickety…

What the hell is she typing…a manuscript? I wondered. I leaned over and peered around to see what the computer monitor looked like…she had three different windows open…all side by side. Good grief. Seriously? Wish my vision was sharper…what the hell is she typing?

I’d spent ninety minutes myself just a few nights earlier, answering all the online health history questions that UCSF preregistration required before they’d confirm my appointment. And I can tell you, it did not require too much typing. Just going page by page by page…set up for those who never work on computers…with instructions like: When you completed this page, click here to proceed to the next question, or click here to return to the previous screen.

Clearly those ninety minutes were a complete waste of my time, I realize now. Because she’s still typing, typing, typing maybe reinventing the wheel.

Abruptly, she glanced up at me, smiled. Reminiscent of that scene in Meet The Parents, where Ben Stiller goes to the airport to fly home and the lady behind the ticket desk types endlessly without a word. Endlessly.

Finally, “Feel free to ask me any questions you might have.” Her fingers never slowed down. Clickety clickety clickety…

I told her I have lots of questions. I reached down for my folder and pulled out a copy for her. Her eyes got wide as she took a quick look. While still typing.

OMG…C’MON! WHAT THE HELL COULD YOU POSSIBLY BE TYPING?

I was on the verge of getting slap happy, so I blurted out instructions. “You can give these to the doctor, this copy is for her,” I said.   At long last, silence. She took a very quick glance at page one and then turned to page two. And handed the questions back to me. Well, then. She’d be sure to give them to the doctor ahead of time, but for now she wanted to examine me.

I hopped up on the table. She put on purple latex gloves (stylish) and her exam took about two minutes. Yup. Told ya. You can’t SEE the cancer. Or FEEL it. Just read the god damned scans, ok?

When she was done, she pulled off the latex and then voiced her opinion about my cancer in general, by starting off with; “In my experience…”, which, as everyone in the room knew, was quite limited. Her ‘experience’ told her that my pathology from 2014 was clearly showing a new primary cancer, not a recurrence of my 2003 cancer (there has been lots of speculation over that point.) And, this opinion of hers was based on the histology of the two pathology samples, which were very different from each other. The very different histologies are what brought her to the conclusion that it was not the same cancer from 2003 recurring again in 2014.

I didn’t question her at all. I was an obedient patient. BUT, my own research shows clearly that she was incorrect. There could be multiple lesions in one patient of the same type of cancer, and some of them might have different histologies. One lesion might have a gene mutation, the other not. One might be estrogen receptor positive, the other not. Yet both lesions are the same type of cancer (breast, lung, etc). So I quickly discounted her opinion, based on my own limited research experience. But I didn’t harbor any ill feelings towards her…this is a teaching institution after all.

She then stood and gave reassurance that the doctor would be coming soon. As she exited the room, I smiled at the mute Resident who followed her out. “I hope you’ve learned to type REALLY fast!” I said.   She busted a big smile, and in heavily accented English she said she was still in training.

Hubby and I were alone once again.

Another eternity ticked by. I reminded hubby to be ready to record the conversation with the doc. Before he’d nodded off on his nap earlier, I’d shown him the app on his iPhone that would allow him to do this (FYI: it’s in the Utilities folder, and called Voice Memo).

I figured our conversation with the doc had potential to get really science-y…and I might become like a deer in the headlights. I wanted the ability to go home and re-listen to her explanation/comments again and again… if need be.

It was sometime just after 6 p.m. when the doctor came in (followed only by the Fellow with Flying Fingers) and it was close to 7 p.m. when she left us. She had already reviewed my 2003 pathology report, in great detail and had compared it to my 2014 pathology report. I handed her my lab slides and she said she’d be sure to get them under a microscope for further assessment. And immediately, she expressed her opinion that my 2014 cancer is very VERY likely a recurrence of my 2003 cancer, which in her mind was ‘quite probably’ NOT assessed accurately to begin with, due to the testing methods they were using back in 2003.

Nowadays, testing techniques are vastly more sophisticated, and in today’s lab, that cancer from 2003 would likely be much more aligned with the histology of my 2014 slide, which had the unexpected gene mutation. So NO. This was not a new primary cancer. It was the same cancer from 2003 that was very early stage one, rearing it’s ugly head all these years later as stage four.

I slyly glanced over at Flying Fingers. You’ve still got a lot to learn, kiddo.

And then she immediately addressed my list of questions, starting at the very top. She spoke concisely, yet with depth and perspective I’d not ever heard. It was the best medical meeting I’ve ever had. She readily spoke about how she’d approach my treatment plan going forward and with specifics. She expressed a clear objective for me… to keep me asymptomatic for as long as possible with the best quality of life possible.

She actually concurs with staying on Kadcyla for the next several months, and without the other sniper drug I wanted. She said studies have already shown there is no benefit of those two drugs used in combo, only more side effects.

So, in summary, the scan results raised alarm bells. Yes, there is progression of disease. BUT she says the progression is actually miniscule! Love that word. MINISCULE. She explained to me that it’s NOT the amount of uptake of scan dye that is crucial (how much you light up). Because other things can cause that dye uptake, not just cancer.

It’s the GROWTH of the lesions or nodules that we care about. And those changes were

 MINISCULE!

Rush hour was long over by the time we left the city. We stopped for dinner on the way home, and I had a glass of wine. Enjoyed every last drop.

I have listened to that audio recording multiple times already, because the discussion indeed got very science-y. The part I am most happy about comes at the end, when I asked if she’d consider taking me into her fold at UCSF.   “I’ve learned more from you in forty five minutes, than I’ve learned in two years,” I told her. “I feel SO much…. LIGHTER.”

Friday I had my last chemo at CPMC and said goodbye to the lovely oncology nurses and staff there that welcomed me so warmly each and every time. And I left a handwritten letter for my oncologist explaining that I’d made the decision to transfer my care over to UCSF.

So my next chemo will be right on schedule (still every three weeks) without skipping a beat. BRING IT.   And I’ll be at one of the very best cancer research hospitals in the country. I just hope the unending parade of Residents and Fellows will take the time to type less and talk more. I’ve been assured that the doctor will in fact be monitoring my case closely…they’ve scheduled me to see her personally EACH and EVERY infusion day. And did I mention that she works closely with the guy at Stanford that I couldn’t even get in to see?   SCORE.

The prognosis doesn’t change…but the perspective sure does. And it just feels so much better.

Thanks for following along, for all your well wishes, notes and encouragement. I treasure each one.  For those who SEE me routinely, you know I’m doing well just living my life. One day at a time.

Don’t forget to #LiveTheDash