It was immediately apparent to me, just by the look on my oncologist’s face, that ‘remission’ was not a word she would be using this time around. Instead, she used a word I hadn’t expected to hear when summarizing what the CT scan results showed with regards to the progression of my metastatic cancer: uncertainty.
So, a PET scan was next and rather than have it done immediately, we decided to wait another four weeks. If suspicious areas on the CT scan were too small to decipher, than imagery on the PET would be equally small. By waiting a few more weeks it would be clear by then whether or not cancer was still on the move.
It was unsettling to wait but hubby and I stayed busy with our daily routines, neither one of us talking much about what might or might not be. But the unspoken anxiety for both of us was palpable.
We hosted a barbecue for his golf buddies the last weekend prior to the PET scan. Hubby had been looking forward to this for some time…he’d laid out a 9 hole course that meandered around our property, and he even had a cheap trophy engraved with ‘ANNUAL OAK KNOLL YARD CLASSIC’ that he was going to award to the winner. We expected guests to begin arriving around 3:30 or so. Hubby got started early that day, working in the hot sun setting pin flags in place, lining fairway boundaries. Then with just about 45 minutes to spare, he finally raced inside to shower. I heard the water turn on and knew the shower wouldn’t last too long, because he still had to run out and purchase some bags of ice for the ‘beverage cart’ – a wagon he’d attached to the back of our riding lawn mower (not that we have any grass to mow…the drought has left us with a parched field)
I was busy myself with last minute food prep, so when hubby suddenly rushed by me after his shower to announce he was going out for the ice, I never looked up. But I heard the gravel spin from beneath the tires as he peeled out of our driveway.
And here is where I can only tell you what hubby told me (between fits of laughter) upon his arrival back home: hubby had arrived at the convenience store in record time, and in an effort to hustle even more, he asked the attendant behind the register where the bags of ice were. Rather than responding, the attendant just stared. So hubby repeated the question, probably in that tone of annoyance I’ve heard just a few times over the past 39 years. The attendant blinked a few times and then very calmly asked, “Do you know you have a Q-tip sticking out of your ear?”
I can picture hubby’s hand shooting up to his ear to retrieve the forgotten Q-tip. But I have to hand it to him. He had a quick comeback: “My wife usually looks me over before I’m allowed to leave the house.”
And to that, the attendant quietly noted “I’ve never seen that before…” (Apparently he’d really thought he’d seen it all.)
Well, hubby hadn’t bought enough bags of ice. It was a blazing hot day, and we were clearly going to need more ice than the six bags he came home with. So I jumped into the Jeep and peeled out of the driveway, leaving him with the first guest who’d already arrived. In my absence they were going to load up the wagon with beers, water bottles and those first six bags of ice.
I arrived at the same convenience store where he’d just been. I approached the register.
“Hi. I’m the wife of the guy who came in with a Q-tip in his ear,” I blurted out. “Do you have any more ice?” Immediately I heard laughter from guys I couldn’t even see. Phantom employees. Hubby likely had made their list of ‘the dumbest things customers do’. And, in that moment, it became clear to me that the stress of the past weeks had a very silent grip on hubby.
Waiting for the PET results was excruciating. After two days, I finally reached out to my fabulous internist to see if she could shake the results loose. And within hours, my oncologist called me mid-afternoon. I immediately sensed the news wasn’t going to be good. Normally my oncologist waits until after 5 p.m. to make her calls.
Cancer is on the move. Those drugs that I’ve been getting every three weeks for over a year have failed me.
So now we’re on to Plan B. It’s a brand new drug (FDA approved in 2014) that’s even more finely honed than those other two sniper drugs. But it was ONLY approved for use in patients when those other drugs failed (the very same I’d been getting).
And, while those other drugs were considered the BIG GUNS, this one is the freakin’ GODZILLA of BIG GUNS. The medical name of the drug even sounds like Godzilla. So I take that as a good sign.
Godzilla carries a double punch in the form of two components: there’s the carrier drug (component #1) which hones in solely on the HER2 gene mutation that causes the cancer cells to proliferate so quickly, and then there’s the chemo drug (component #2) that’s piggy-backed onto the carrier and then penetrates those cancer cells to kill from within. BA BAM! A ONE-TWO SNIPER PUNCH.
I just had my first round of it two weeks ago, and it was already a day of high anxiety which then got compounded by an unexpected delay, due to an administrative error made on the paperwork submitted to receive the drug. Which meant they didn’t HAVE the drug to give me.
I tried to remain calm. I didn’t care how long the delay was, just as long as I didn’t go home without getting my drug. But hubby was visibly agitated and I could see his patience was wearing thin. Eventually, with some encouragement from me, he just opened up his laptop and refocused while the clock continued to tick and I continued to simply wait.
Finally, finally the good news came. The private practice on the floor above had the drug and they were willing to send it down for me. GODZILLA WAS IN THE HOUSE.
So after a very stressful three hours of waiting, I was given some Tylenol, then my Portia was activated and connected to the IV. The first bag to drip was a bag of anti-nausea drugs. Fifteen minutes for that. When that bag emptied, Godzilla was presented with great care. The nurse handling the bag bent down and showed me the label on it, which had my name and birth date, the name of the drug, and the dosage.
She hooked Godzilla up to Portia, and I noticed there was an added piece of apparatus attached that I wasn’t familiar with.
“What’s that?” I asked. Turns out it was a filter, apparently required to ensure a safe drip on this drug.
The nurse explained that for this first time around (and again the next time), the drip would be administered over a ninety minute period of time due to risk of a dangerous reaction, but normally it would take just 30 minutes. So today I would be observed closely throughout, and even after the infusion was completed, I would have to stay another ninety minutes for observation.
I hadn’t expected that news. I glanced at my watch and realized that by the time this was all done, I’d be hanging out with the janitors cleaning up for the night. And the unlucky nurse assigned to observe me. Whatever, let’s just get on with it already.
Because I wasn’t in a chair that was in a direct line of vision from the nurse’s station, a small desk bell was placed beside me, and I was told to press the bell immediately if I felt any reaction to the drug whatsoever, because the drip would need to be stopped right away if I experienced any adverse reactions. And no one had to explain to me what THAT would mean…adverse reactions mean the drug is no longer an option.
“What kind of reaction would I ring the bell for?” I asked the nurse. There was a whole list of things. “Difficulty breathing and/or shortness of breath, if you feel your air passages closing up, you know…your throat closing up, or if you experience the onset of feeling flushed, or light headed. And one more thing: if you feel a sense of impending doom.” Those last two words were said in a lower tone of voice.
Whoa whoa WHOA.
“Impending doom? What’s that mean exactly?” I could feel my composure beginning to crack.
She explained. Apparently it’s not uncommon to get a sense of impending doom just prior to something physically catastrophic happening.
Hubby abruptly stood up and took that exact moment to announce that he was heading out to the lobby to return a few business calls. Speechless, I looked at him. You’re going to leave NOW? But I only articulated that inside my head. Then it occurred to me… the stress must have become too much for him. Either that, or he was completely and inexplicably clueless. But I like to think he was just overly stressed.
So I put on my best ‘I got this!’ face and calmly said “Okey doke, I’ll be right here!” And with that, he took his cell phone and left, leaving his computer for safe keeping with me. I watched his departure, his walk for important phone calls. If I’m dead when you return, I hope you’ll know that I still loved you even though you chose THIS MOMENT to leave my side.
The nurse began the Godzilla drip, but immediately the machine beeped. Something wasn’t right. The drip wasn’t dripping. Hmmm. The nurse checked the IV line for any bubbles, crimps. Nothing. She started the drip again…and again a BEEP.
“Maybe it’s the filter?” She went to get another one and came back to replace it. OK. Here we go.
BEEP. Nope. Hmmmm. She disconnected Godzilla from Portia, took the whole bag, lines, everything and went to speak to the pharmacist right around the corner. She returned with yet another filter attached…a different style this time. Okay now. Lets try this one more time. She hung the bag back up, reconnected Portia, activated the drip…success!
She apologized for the difficulty and delay, and I knew she felt badly that this day had not gone well. She reiterated, in a stern voice, that I was to immediately punch that bell should I feel at all weird.
Stop the drip? NO GOD DAMNED WAY.
Okay, I will, I told her.
I watched as the first drops worked their way out of the bag hanging above me and glanced down at where the line fed into my Portia. The nurse watched me watch. Then I shrugged, smiled at her and said “Alrighty then. Here we go!”
She returned to the nurse’s station where the other nurses tend to congregate in between patient needs.
Within moments, I felt a restriction forming at the base of my throat. Not too unlike when I get heartburn, or whatever causes that bubble sensation when I eat certain foods. But this was much more intense. It was startling actually and for a quick moment I could sense my heart beginning to race. Anxiety, right?
Don’t press that bell. Do NOT press that bell. I closed my eyes and feigned dozing. Through my nose, I took in as deep a breath as I could. –Still breathing; check.
But the restriction, or heartburn, whatever it was…it was gaining intensity. I’d eaten half a turkey sandwich while I’d been tapping my toes hours earlier. It had to be heartburn. But turkey sandwiches don’t normally cause me heartburn. It must be the turkey they used in the cafeteria. That must have something in it…right?
Don’t press that damned bell! DON’T PRESS THAT BELL!
I tried to relax, I tried to meditate. I wiggled my fingers on both hands, and then wiggled my toes, my nose, flexed my leg muscles. BODY, DO NOT LET ME DOWN. STAY FOCUSED. Damn it. I casually and subtly positioned my hand so that it hovered above the bell. Is this what a sense of sudden doom feels like?
What the hell does a sudden sense of doom feel like, anyhow?
I took another deep breath. No change. I kept my hand positioned over the bell and peeked to see if the nurse was watching me. She wasn’t. I decided to activate my iPhone music, since my ear buds were already draped around my neck. I chose a playlist I created and named UPBEAT. A song by Family of the Year, called Hero, began to play. It’s not upbeat. As I got swept into the melody and lyrics, my eyes got teary and overwhelming emotion began to squeeze my heart.
Knock it OFF. You are fine. You are JUST FINE.
Suddenly, like out of left field, I became aware of the fact that my throat was no longer constricted and I felt completely normal. Whaaaat? I opened my eyes, glanced around, watched the lady in the infusion chair just a few feet away to my left…she was knitting and didn’t look so hot. Frailty had stolen her healthy appearance. I wiped a rogue tear from my cheek.
I glanced over at the nurses all gathered around their station. “How are you doing?” one asked me. I gave her a big thumbs up and a smile of sheer confidence.
Hubby returned an hour or so later, and sat patiently with me as my infusion proceeded. “How’s it going?” he asked.
By the time we finally left to go home, it was down to me, two nurses and the janitors…just as I’d thought.
So, now, two weeks have already gone by. During that time, I’ve flown to Chicago to see my Mom for five days, then on to Ohio to watch proudly as hubby was inducted into his high school’s Athletic Hall of Fame. I even played a few holes of golf, sat in the pouring rain to watch the Homecoming halftime announcement of inductees, and marveled the following night at some late evening snow flakes that fell upon me. But returning home to Marin County never felt so good. Life goes on for us.
My second infusion is scheduled for this Friday. And this time I might just take a page from hubby’s playbook by showing up with a Q-tip sticking out of my ear. Once they turn Godzilla loose to hunt down the bad guys, that Q-tip can serve as a sense of impending stupidity… and maybe it will help to keep my hand away from that god damned bell!