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.

Screen Shot 2020-10-05 at 6.37.33 PM

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