#Lifer

Pain woke me up in the middle of the night just a few weeks ago. Pain in my right thumb to be exact. At the base, where it connects to my hand, specifically in the ligament. And it was bent at the top joint, as if I’d been pressing a stopwatch for my entire life. Frozen in place, I couldn’t UNbend it… without using my other hand. And when I did that, there was a pop.      Whoa.

So I purposely bent my thumb to test it…you know, just to see if I could bend it without any aide from my other hand.   Just to see if I could do it. And, thank heavens, I could.

But then I couldn’t straighten it out again. Whaaaattttt?

I focused harder. I willed myself to straighten my thumb. I took a deep breath and concentrated really hard, like I used to when I was a kid and thought there was legitimacy to the game of Ouiji.

It didn’t matter how hard I concentrated. I could not straighten my thumb.

I looked at the clock. 3:17 a.m. I briefly debated about waking up hubby since I was so oddly fascinated in a baffled sort of way. But I decided to simply use my other hand to straighten the damn thing out. Another pop. I searched for a cold spot on the pillowcase that would mask the throbbing pain, and then I debated about climbing out of bed to take some Advil. Instead I sighed deeply, prayed this was a bizarre dream that I wouldn’t remember by morning, and I eventually fell back to sleep.

Morning came. My thumb was frozen in a bent position once again. And my other fingers felt… well, they felt peculiar. On both hands, my fingers felt stiff and achy, like they could just as easily get into a locked position as well.

I glanced over at hubby. “Look at this!” I muttered with annoyance. He was barely awake and showed no interest. So I muttered a bit louder. “I cannot unbend my damn thumb.” He turned to glance at it. Then he moved closer to inspect it. Then he straightened it for me. It popped.  “Hmmm,” he said in sympathy.

It can be downright depressing when I dwell too long on my ‘new normal’. I try very hard not to, and for the most part, I’ve been successful and keeping those thoughts at bay. Since I last posted a health update here (three months ago), I’ve lost three women from my life. One was a personal and longtime friend to my mom, whose cancer had returned after a very long  hiatus, like fifteen or twenty years. She and I became close after my diagnosis last year. She reached out on multiple occasions to cheer me on in my own journey and to compare notes. Our paths paralleled for a bit throughout our chemo treatments, which were similar in their drug side effects. She didn’t know anyone else going through this battlefield, and I know it brought her some sense of comfort to be able to express her thoughts about it to me, someone who’d been a comrade of sorts.  But she lost her battle just a month or so ago.

The other two were women that I came to know through an online cancer support site (specific to my bizarre diagnosis). Of those two, the first one was a complete shock, as I’d had no idea how advanced her cancer had become in a very short time. She was one of the first to ‘welcome’ me to this online group, to reassure me that she was there to support me in any way she could. The second one was an even bigger shock, as she received her diagnosis just one month before I received mine. She began her treatments three weeks before I began mine…and it turned out that we had the EXACT same treatment plan. Same four drugs to start with, at the same intervals for the same duration in time, followed by the same amount of radiation over the same number of weeks. Her body did not handle the drugs well, and within weeks of completing her radiation, her cancer spread like wildfire to her brain. So they radiated her brain every day for a month. And then she died shortly after that.

Her death rattled me to my core, and put me in a funk for days. Having never met her in person, we’d shared quite a bit of ourselves with each other through social media. She lived in Kentucky. She was a horse owner, I’d been a horse owner. She was raising a teenage daughter, I’d raised a teenage daughter. She was spunky and encouraging. I was encouraging though not so spunky. She believed deeply in Jesus. I believe less deeply in God. She was a young forty-something and I used to be a young forty-something.

She was a lovely woman. She was a fighter.    And she was far too young to die.

Treating cancer (including early stage) with surgery, even mastectomy, and/or radiation and/or chemo does NOT guarantee a cancer-free future. Cancer has no age restrictions, no rhyme or reason to whom it victimizes. Recent studies have claimed it’s not lifestyle or diet related. It’s not even genetically related.  It’s simply science. And bad luck for those of us navigating this stealthy beast.

A woman named Holley Kitchen has posted a very emotionally moving video to Facebook in an effort to EDUCATE the general population of the world about those little pink ribbons, and it’s gone viral. It’s a concise explanation for those who are clueless (and that would be MOST people) about what ‘metastatic breast cancer’ really means. The net of it is: for those whose breast cancer has marched on to a new location from where it originated…they will never, ever, Ever, EVer, EVER, E V E R …be cured. The odds of an initial breast cancer becoming metastatic are 20-30%, according to the Metastatic Breast Cancer Network.  Metastatic Breast Cancer is an umbrella term for an entire RANGE of unique and incredibly complicated  breast cancer diagnoses. Mine happens to be a diagnosis that involves a gene mutation, which happens in only about 20% of patients.

Metastatic breast cancer is terminal (I keep my focus on the fact that LIFE is terminal). These people (and that would include me) will live for the rest of their lives, whatever time is left for them individually, always fighting the fight, and in need of lifelong medical care. Cancer might go into remission, but the emotional weight of unfathomable worry will never vacate.

Holley Kitchen has coined the term LIFER.  It’s a club for members only, and I wish like hell I weren’t a part of it.  I pray that none of you become a part of it, and if you are, my hope is that you are living life without looking back, and focusing on the joys and comforts that already surround you.

I typed into Google: I can’t straighten out my finger.   It was all over the internet. Trigger Finger. It’s an actual condition CALLED Trigger Finger. Jeez, if I’d known I’d be getting this, I’d have spent more time in recent years at the shooting range. I’m a good shot. Or I used to be when I was at the range. Dad taught me how to shoot when I was a kid. Once he’d figured out I was left eye dominant, he adjusted his instruction accordingly.   It actually saddens me to admit that this trigger finger is from my damn cancer drugs. Nothing to do with my firearm skill set.

So these cardio toxic drugs I get every three weeks, which I refer to as my sniper drugs, have affected my heart. I wrote about that three months ago, in my last post here, titled ‘Don’t Be Scared, Okay?’ I had to skip a round of treatment in hopes my heart muscle would rebound.

It didn’t. But the next follow-up echocardiogram showed that that my heart muscle didn’t get any worse either, so my oncologist resumed my treatments with the approval of my cardiologist. Like clockwork, I go in every 21 days and they hook up Portia with the IV. The nurses there have asked me on three different occasions to speak with other patients who were in need of chest ports. All three were scared and concerned about the surgical procedure, and curious about the placement and comfort. One was a young man in his twenties, another a woman in her seventies, and the last one was a woman in her fifties. I’m always happy to reassure others, but find it difficult when they ask how much longer before I get to have my Portia removed. It’s a question I’ve not yet found a comfortable answer for.

“I’m in it for the long haul,” I say. Their eyes widen, but I don’t offer much explanation aside from the fact that every cancer diagnosis and treatment plan is unique, and not to base the need for a chest port on the prognosis of their diagnosis. It’s solely for ease of access to their arteries while getting drug infusions.

Next week, I’ll get yet another echocardiogram, which will determine if my heart is continuing to hold steady or if the heart muscle has deteriorated further. IF it’s deteriorated further, again treatment will be suspended. Possibly a new treatment plan will be discussed, but I’m hoping not, because the treatment plan I’m on is THE best of the best for my specific and rather unusual diagnosis.

I’m experiencing excessive worry on occasion, but not for myself.   I’ve been so ridiculously busy with house guests, work and other activities that have kept me fairly well distracted, but every now and then, well, okay, DAILY, I am obsessed with tracking (via the use of an online GPS system) the exact location of a 72’ sailboat. It’s called the Sea Dragon, and at this very moment it is literally in the middle of (nowhere) the North Atlantic Ocean…as it sails from Bermuda to the Azore Islands, quite a ways off the coast of Portugal. Picture a single grain of sand floating in the midst of the wide wide wide open sea.

Why am I obsessing over that? Because my daughter is on board, crewing for an organization called Pangaea Explorations. They use the Sea Dragon to take teams of scientists all over the world to study issues that are ocean related.

This current group is studying the issues of plastics in the North Atlantic Trash Gyre (North Atlantic Garbage Patch), using a unique trawl built specifically for this expedition in an effort to determine the depth below the surface of the water where the trash has gotten caught within the ocean gyres. It’s a leading edge technology that’s literally unfolding right at this very moment, and I can only imagine my daughter’s excitement to be so intimately involved in this part of the research process.

But this mother has never experienced anxiety (okay, WORRY) quite like this before. While she’s out there trawling in the middle of… nowhere, I look at the sky and I pick out a star. I wonder if she’s able to see what I see. And I want to be able to text her to say : You see that star up there? Make a wish for me, okay? And then get on home so I can get my arms around you!

Trawling. The sniper drugs, before going in for the kill, trawl for a specific gene mutation which causes my cancer to proliferate. They’re called targeted drugs because they leave the good cells alone but trawl for the deadly mutant ninjas.  Boy, I hope my compromised heart can take it…I don’t want to lose my sniper drugs. I’ll happily deal with trigger finger so long as my sniper drugs can stay on the job.

Ports, Portia and Hoofing It Forward.

Portia was a champ for her inaugural run today!  (For those of you just stepping in to my journey here, ‘Portia’ is the name I’ve given to the chest port that was surgically placed inside me  just two days ago.  Because I will be getting drug infusions for a very long time (‘indefinitely’ according to my oncologist) on a schedule of every three weeks like clockwork, a chest port is necessary because without one, the veins in my arm would become collapsed quite quickly making it very difficult over time to find a vein to use for needle insertion that will deliver the drugs via intravenous drip.  The port itself a triangular shape and thicker than I expected it to be.  It is typically placed beneath the skin just below the collar bone.  Because the port has raised bumps on each of the three corners, once implanted the nurses can feel for those three bumps and know where the center of the port is for insertion of the needle.

At my pre-op appointment with the surgeon, who looked ridiculously young with an over-sized mug of a half downed and likely cold cappuccino sitting on her desk, she explained all of this to me by showing me exactly what the port looked like. She had one handy sitting on her desk.  I could touch it and fiddle with it (right after I picked it up off the floor because I immediately dropped it in my clumsy attempt to hide my shock that it was PLASTIC. Plastic?  Ten years ago after my bi-lateral mastectomy, I opted for no reconstruction because I didn’t want anything foreign in my body.  Good grief.)

“Plastic?” I asked her with an unrecognizable chirpy voice.  She just smiled and said there were ports made of metal, like titanium, but those would prohibit me from getting accurate MRI’s and other scans medically necessary down the road.

Ohhhh. Well, then.  Plastic it is.  And the color purple is nice, a lovely easter shade.  Are there any other color choices? I wanted to ask her, but I decided not to sound stupid after that chirpy voice had just come out of my mouth.

So, instead I asked “Where does it connect inside?”   Given that they stick needles into arm veins when there is no port available, I was curious to know what vein lives inside my chest  that they’d connect this purple plastic thing into.   It was an answer I wasn’t anticipating.

“It goes directly into your heart.”

HOLY SHIT!  MY HEART?     My…. HEART???

Now, if hubby had been with me, I’d have grabbed his arm and likely squeezed it to a size substantially smaller.  But hubby was away on a trip I insisted he not cancel…a reunion of his high school football team that he’d organized and planned for almost two straight years. I knew this reunion was hugely important to him.   Fifty years ago his team went undefeated two years in a row, winning their conference championships both years (they didn’t have state playoffs back then.)  In Ohio, football is a big deal…so he flew back to the little town of Aurora where he grew up and connected with these guys who he’d grown up with.  Some went on to play pro after college.  My hubby went on to become an All American in lacrosse, having never seen a lacrosse stick until he was a freshman at Denison University.  These guys are all hard core athletes…the reunion was a three day event, the high school rolled out the red carpet for them, and teammates came from far and wide to be there.  I desperately wanted hubby to go, and  have a reprieve from this cancer shit…because it affects him in a deeply emotional way  that only devoted hubby’s would understand. So, at my insistence, he went.  Which is why I was solo in the surgeons office that day.

As all physicians do, she began to explain the risks of this surgery and as she went on, the color began to drain from my face.  “It’s a confined space there without much wiggle room.  There’s a possibility that I could puncture your lung. But, don’t worry!  The hole heals up in about an hour or so, and we’d just give you oxygen in the meantime until its closed.”

Once I found that chirpy voice again, I asked about risk of infection.  Overall the risk is low, but she of course had to divulge all risk factors, which she did quite well. Please oh please let Portia not get infected, I prayed to myself.

Then I asked about exact placement.  Turns out I had choices…as long as there was a flat surface behind it, it could really go anywhere.  But I had to keep in mind accessibility and comfort.  Typically just beneath the collar bone, but she could try to move it to where it wouldn’t interfere with my wardrobe necklines.  I made sure she understood that I was only concerned about my golf swing.  “Are you right or left handed?” she wanted to know.  After I told her I was right handed, she was pleased because she didn’t want to put it on the right side anyhow because that’s where my cancer was surgically removed seven weeks ago.  They try to avoid cancer locales.  I stood up and demonstrated my swing in an understated way.  Hmmm, not real sure about placement on the left either…could be in the way.         No matter…my game isn’t great anyhow.  Maybe Portia would balance my swing out better.

Then I asked how long one of these things would really last. That was my very last question, because the answer left me so rattled, I was weepy on my drive home.  “The longest one I’m aware of was over seven years…but the cancer outran the patient by then.  The port was still working great though.”

I left her office only to find all elevators out of service. A medical building with ALL elevators out of service?  Her office was on the sixth floor, so I hoofed it down the stairs trying to find the lobby.  But the door below the 2nd floor was the basement.  Where the hell was the lobby?  The lobby IS the first floor. What the hell?  So, I hoofed it back up a level.  Nope…second floor.  I hoofed it back down a level.  Nope the basement.   God damnit!  I want OUT of this building.  So while I was fuming, the elevator door in the basement suddenly burst open with a crowd inside packed like sardines.  I pushed my way in.  The button for Lobby was illuminated.  When the doors closed and the elevator lurched upward, I prayed.  I’m not a religious person, but I prayed anyhow.  And before I knew it the doors burst open once again, and there was the lobby.  All of us raced out like a stampede at record speed.  I then was focused on finding the machine where I could prepay my ticket for the garage.  I looked everywhere.  Unable to find it, I asked someone nearby.  “Do you know where the prepay machine is for the parking garage?”

“I think its by the elevators inside the garage.” he said.  Great those damn elevators…all broken, including the garage elevator from the lobby. So, I walked outdoors and stepped over the construction barricade that was to have blocked my way to the most direct route to the sidewalk. Once there, I walked briskly to the garage entry where cars drive in.  There was thick tape strung there too with ‘WET PAINT’ signs hanging on it,  blocking my way to the low concrete median that separated incoming and outgoing cars.  I stepped over that and stepped onto the bright fresh yellow paint job.  Then I had to think about the fastest route down to seven levels below me where I parked my car in the space apparently meant for deep subterranean termites.  I got there by using the ramp that cars drive to climb out of the depths of darkness back up to street level…so I was actually hoofing it against traffic.  NOT fun.  Finally I made it all the way to the bottom level and headed to the elevator where two people waiting there instantly asked me if the elevators could possibly be broken. “Yes, they are…happy hiking!”  I glanced around for the prepay ticket machine.  Nothing.  So I asked these annoyed people who’d been waiting too long for an elevator that wasn’t coming if they knew where the machine was.  ‘In the lobby of the medical building behind the pharmacy door,” they said.  Well, SHIT.

I hoofed it back up those damn ramps, leaving them in the dust as they tried to stay with me.  I barreled back across the wet paint, jumped to the sidewalk, leaving yellow footprints as I went, and burst back through the construction zone.  Inside the lobby once more, I was winded.  And ready to cry.  I went to the pharmacy and looked behind their door.  No machine.  I walked up to the register in the back and asked.  “Oh, they moved it just to the left of  the construction barriers  blocking access to the broken elevators.  It’s hard to see, really.”

Back to the broken elevators, I followed the construction wall and peeked around the corner.  BINGO. Got my credit card out, paid for my parking and raced back outside.  Now there were construction GUYS there…so I took the handicap ramp instead to the sidewalk below, ran back through the yellow paint, down the seven ramps of  garage hell, and got into my car.  Where I sat and sobbed.  For about five minutes.

Then I chastised myself and started the engine.  Chevy Tahoes weren’t meant for these stupid old garages…I ducked my head every time I had to drive in one, certain those low concrete ceilings would sheer off the top of my Tahoe (and me). After carefully navigating my way to the exit with the precision of a finely threaded needle, I at last got to the gate where two cars were ahead of me.  I saw the first driver in line put their ticket into the machine that opened the gate immediately…they drove off.  Then the car ahead of me dropped their ticket trying to feed it into the machine.  They had  to open their door and retrieve it.  They tried again.  Success.  But the gate didn’t  open.  The ticket was spit back out.  They inserted it a second time.  The gate didn’t open.

Wide eyed, I sat there staring.  Then I could see the driver lean out further, seemingly talking to no one…so figured there was someone on the intercom inside the kiosk where normally a parking attendant would stand, telling them what the problem might be.  FIFTEEN MINUTES later, I gently honked my horn.  The driver stuck his head back out the window, looking directly to me and demanded I not honk at him.  What’s going on up there? I asked kindly…well, as kindly as I could manage.   Turns out, he couldn’t find the prepay machine, and so the voice on the intercom was running the credit card numbers from some unseen location.  ARGHHHHHH.  Another five minutes later, the gate finally swung up to let the guy drive out.  Adios! 

I drove up, fed my ticket in and the gate swung up immediately.  I left a bit of rubber as my lead foot hit the accelerator.  Traffic in the city was heavy for mid-morning hours, but I cranked up the radio and focused on meditating as I inched along.

But I digress…

The surgery itself was easy…outpatient, and I was given a ‘local’ type of anesthesia, but don’t remember one thing once they started the drip. Next thing I knew, I was in recovery.  No oxygen and  no nausea from anesthesia.  Major relief!

On our way home from the hospital just an hour after I woke up,  hubby and I stopped for a late day breakfast at my favorite spot in Sausalito.  We’ve been regulars there for 16 years. I get the exact same thing EVERY time…the ‘veggie storm’ scramble with fresh fruit instead of hash browns, and an English muffin. Typically I’d get their vanilla latte too, but I’ve walked away from those for awhile…without taste buds, its rather a  frustrating waste on me now. I look forward to that breakfast once a week with great anticipation.  Wonderful local spot, wonderful owners, and simple good food, although I couldn’t vouch for much other than my Veggie Storm.

But, I digress yet again.

So TODAY, Portia (newly installed just a mere 48 hours ago) and I sailed through the infusion process in fine form, just as I did without her three weeks ago.  It was all pretty much the same in terms of the drug line up…first a bag of anti-nausea drugs, followed by the two chemo drugs dripping one after the other, followed by the two gene specific targeting drugs (also administered one after the other), followed by Heparin to prevent blood clots that are a potential risk of infusions.

THEN Portia was released of the IV needle  (pain free, I might add…both going in and going out), and then I was given a shot of Neulasta…which is to ensure I produce more white blood cells over the next two weeks, because all those drugs will cause the white blood cell count to drop very low…as happened after my last infusion three weeks ago.  So low in fact, that they delayed my port surgery pushing it back two days due to high risk of infection.  They quickly got me an injection of Neupogen which boosted my white blood cell count quickly over a matter of days, confirmed by yet another blood draw… and surgery took place at long last. It all worked out just fine, even though it was an unexpected delay.

I’m feeling well, I’m feeling strong, I’m not looking back and I’m thankful I’m in very caring and capable medical hands.  I have the best team.  THE BEST.  My nurse today was delightful, young and actually knows my daughter…from the small world of competitive sailing.  We took a selfie, me in the infusion chair with nurse smiling broadly behind me.  I texted it to my daughter….gotta love this age of instant communication! I’d post it here, but my Portia might scare a few of you in her raw appearance, and quite frankly, next to adorable nurse, I don’t look so hot.  So instead I’ll post a photo of my gypsy-esque attire that I wore on my noggin today.  I get a bit cold sitting in that infusion room for hours on end, so I didn’t want my head to be cold too.  The receptionist was lovely to compliment my new look.  Yup…it’s my new normal.  No biggie.

I GOT THIS.       I SO GOT THIS!

gypsy look