Cancer Warrior Jessica Ishikawa

My cancer story begins in 2002, 13 years before my diagnosis. I’m 21 when my mom is diagnosed with colon cancer and I’m the one who gets to tell her.

For her, it starts with pain that won’t go away after a fall. When the serious opioids they prescribed her don’t touch the pain, more tests are ordered and a mass is discovered in her colon. A biopsy comes back negative, so surgery is scheduled.

As a single parent, there is no husband to take her to surgery. As the eldest child, it falls to me. It felt like she had barely gone into surgery when the doctor was back in the waiting room, telling me that another biopsy of the mass had shown it to be cancerous. They wouldn’t continue with the surgery, as that could make the cancer spread rapidly. The doctor tells me to let my mom know he would have an office visit with her the next day to discuss the options.

Then he leaves, his piece done.

I go into the recovery room to sit and wait until she’s conscious enough to have a conversation.

“The doctor wants to have you come to the office tomorrow.” (Definitely going to start with avoidance.)

“What about the surgery? Did everything go as planned?” (Fuck. That diversion ended quickly)

“Well, they didn’t actually really do the surgery...”

“Wait, what? Why?”

“Well… they did another biopsy while they were in there… and…”

I don’t remember the exact words, but somehow I got it across that cancer was present and beyond that, the doctor would tell her more. Then, she asked me how I was going to tell my younger brother.

Seriously.

Three years go by with numerous treatments and surgeries, until eventually she’s no longer a candidate for chemotherapy anymore. She wasn’t interested anyway.

When she goes on hospice, she tells my brother and I, “They’re just going to help out for the next 6 months or so, and then I’ll be off of it.”

I’m 24. I don’t know a thing about hospice or what it means. But a co-worker does and pulls me aside after I’ve shared this information and tells me, “You need to know what hospice is.” She proceeds to explain.

Ah… that makes way more sense.

My mom is a fighter until the end, insisting she get out of the railed bed that took over our living room to use the restroom or wash up. Eventually, she becomes too weak to do that, so I change her diapers, and clean her as best I can. I play piano for her; it’s next to her bed. The same song every time, Christofori’s Dream by David Lanz.

She’s on a morphine pump by this time. (They don’t care if you get addicted; you’re going to die.) She asks the hospice nurse how to make it go faster and stops eating. It takes seven more days, my brother and I taking shifts to be nearby, just waiting.

I’m on a graveyard shift when I whisper in my mom’s ear, “I love you. You were a wonderful mother. You did such a good job with so many cards stacked against you. You can let go. You can go. We’re going to be okay. Let go.”

Eventually, she does let go. In the eternal protection of my brother and I, she leaves between a shift change. Alone. Like much of how she lived her life. Protecting us. Being alone.

You want the world to stop with you, and take notice of the life that was just lost. But it doesn’t.

 

“In three words I can sum up everything I've learned about life: it goes on.”
- Robert Frost

 

Fast forward. It’s 2015. I am married to the man of my dreams and we are actively trying to expand our family.  

We got married in 2012.

Well, mostly actively.

I’ve started a new job that requires more travel than my previous employer, and many of my business trips occur during the *magic* baby-making time, so we’re not worried when, a year later, we’re still not pregnant. In addition to the new position, I’ve somehow been convinced by my husband that we’ll ride & train together for Levi’s Grand Fondo in Northern California. I agree (admittedly after too many glasses of wine) to do the 110-mile, 10,000’ climb ride.

 

“Always do sober what you said you'd do drunk. That will teach you to keep your mouth shut.”

― Ernest Hemingway

 

We begin training in April for the event, which is held the first weekend of October. It’s an AMAZING ride with beautiful views, incredible support, and I’m proud of the physical achievement. It’s easily one of the hardest things I’ve ever done. I’m in the best shape of my life.

It’s a few weeks after the event when I start noticing pain in my pelvis. I shake it off as gas or indigestion. It happens infrequently and without any real cause that I can spot, so I pay it little mind.

As the weeks pass, the pain keeps returning -- a little more painful, a little more frequent -- until finally, every time it hits, I’m bowed over, stuck wherever I happen to be, until the pain passes. I’m still traveling for work and am preparing to manage the “run of show” at an upcoming gala for a non-profit close to my heart, so I continue to ignore it. (And conveniently forget to mention it to my husband.)

It’ll go away, right?

Wrong.

The previously mentioned gala goes off without a hitch, and my husband is in attendance with me so we can make a weekend of it. Every few hours, I grab my side and try to downplay the shooting pain occurring on the left side of my body. He’s quick to pick up on it though, and forces me to urgent care three days later to get it checked out.

You don’t enter an urgent care thinking, “Someone is going to tell me there’s a really big problem,” and so you’re completely unprepared when they do. I’m alone with the doctor when she tells me there’s a mass, that it’s pretty big, and that I’m being referring to gynecological oncology. She emphasizes it does not mean I have cancer, that it’s just standard procedure, and that I’ll hear from someone in that department soon.

She asks if I have any questions, but she can tell I’m in shock, so when I say, “No,” and stand to leave, she hugs me and tells me it will be okay.

Things are not okay.

I trudge to my husband, in stunned disbelief, and he can immediately tell something is up. I can’t get the words past my lips, “They found a mass…” before I am a puddle of tears he quickly whisks us outside to a quieter location.

From there, it’s a blur of appointments, biopsies, lab work, genetics, and so. much. waiting. Scheduling the surgery is the first hurdle, as we’re only a few weeks before the Christmas holiday. One doctor needs to change his schedule, and suddenly we need a liver specialist. We briefly discuss chemo, but focus first on surgery.

Surgery day is December 21, 2015. The liver specialist comes in on his day off. They will try to preserve fertility if they can, but if there’s any question at all, they’ve been told to take what they need. I sign off on that sentiment, in addition to the surrounding organs like the intestines and bladder, secretly terrified of ending up like my mom -- two bags of poop and piss permanently attached to my body.

The surgery takes longer than expected. There’s no hope to preserve fertility; the tumor on the left ovary has reached around the uterus and latched on to the right ovary as well. A full hysterectomy is performed. The liver ends up being okay, but the gallbladder is shot so that bad boy comes out with the rest. There’s some minute traces of cancer on the intestines, but they are scraped thoroughly and left intact.

Thank goodness for that.

Surgery is only the first phase of the fight. Approximately 6-8 weeks later, I’m back in the hospital, getting a port installed on my rib before the first round of intraperitoneal (IP) chemotherapy is administered. I’ve been told, “you either tolerate it, or you don’t,” and that even if I only get through one round, it will be better than nothing.

Spoiler alert: I get through all 6 rounds.

The port in full effect. Along with my wicked awesome surgery scar. #guysdigscars

When I start losing my hair, I shave a mohawk and throw a wig party, with the only caveat being that attendees cannot buy a new wig. A friend who is into cosplay brings an entire shopping bag full of beautiful wigs. It’s fun to play with the new looks until the summer heat makes it unbearable to willingly wear anything extra. I eventually have to shave the rest of my head.

The cosplay friend let me keep the blue wig. She swears it was meant for me. I also enjoyed the red bob. But mostly, I was bald. My hair never defined me.

I work some, on my “good week,” but mostly I’m confined to our condo and the surrounding vicinity for the two weeks I receive chemo. (Two weeks on, one week off. Lather, rinse, repeat.) The 6th round ends up being my worst, as I’m made to get treatment at the hospital instead of the infusion center. My anti-nausea meds are way off by the time they start chemo (nearly 11pm that night when I was supposed to start at 10am that morning) and I am, in two words, so fucked. Nausea gets taken over by vomiting and there’s very little I can do to keep anything down. All I can do is ride the train of misery until it reaches its end station. They’re some of the worst days I’ve ever known.

I stand by that statement today.

In July 2016, I am declared in remission. We celebrate our victory and life slowly returns to normal. I go back to work full-time and start getting my fitness and health back. Bye, bye cancer. We beat you.

Sidebar: It takes my brain about 3 months to catch up with the trauma I’ve just endured. It happens suddenly, while out to dinner with friends (thankfully another cancer survivor), and I can just barely get the words out, “I’m having a panic attack,” before I start to shut down and take my (always on hand) emergency Ativan. 20 minutes later, the Ativan kicks in. 2 days later, I have an appointment with a psychologist. 5 days after that, I have an appointment a psychiatrist. We get shit locked down with talk therapy and the help of pharmaceuticals. I’m going to need it. We’ve only just begun.

February 2017: Standard procedure, it’s time for a CT. Except, there’s a blip which prompts a PET, which shows some disease activity and two areas available for biopsy. Biopsy #1 comes back negative. Huzzah! Biopsy #2, which is achieved through an endoscopic ultrasound, notsomuch. The surgeon who works on me delivers the news in the recovery room, where I’m still high AF after being in twilight. He nonchalantly says it’s malignant.

And then he leaves.

Surgeons. Seriously. Find some bedside manner.

By the time I’m coherent enough to form thoughts, phone calls are made, and road blocks immediately hit. The results of the biopsy haven’t hit my chart and without them, nothing can be done. I have to wait.

I hate waiting.

I get email confirmation 2 days later and I’m back at it, guns blazing. I’m scheduled to begin chemo within the week -- IV chemo only this time (easy peasy!) -- a combination of carboplatin and gemzar. I wasn’t supposed to lose my hair, but I do. It’s a good thing I have a nice shaped head.

I make it through 4 rounds before I land myself in the hospital with a fever of 104 that won’t go away. I’m poked and prodded while my oncologist and the infectious disease team argue about what is causing the fever. (Oncology votes for tumor fevers; infectious disease is convinced it’s an abscess that’s in my pelvic cavity.) Every possible antibiotic is given to me to beat the mysterious infection. I go neutropenic at one point and am confined to my hospital room.

What else can you do but give thumb’s up? So many IV sites.

This song and dance continues for 13 days, until my fevers are finally under control. We ultimately decided to stop chemo and give my poor body a break. I’m to take 30 days and we’ll come back together to discuss next steps. I’m also to focus on reducing my stress.

For literally the first time in my life, I worry only about myself and my well-being. I really lean into the work to focus on the things I can control (diet, exercise, meditation, yoga) and release the things I cannot (which is to say, everything else and so much easier said than done).

My husband and I go to Kauai, to wash the past months of hell from our brains. The island is busy in July, but we don’t care as we embrace island time.

At the end of those 30 days, we test my blood marker. It’s in a normal range. This is good. We’ll test again in a month.

I take another 30 days before I return to work full-time, something in my previous life I would have never done. The work can wait. For the first time, it can truly wait.

The blessed mundanity of life seeps back in. We finally make the house swap with my husband’s parents that we’ve been talking about for years. We are reminded that moving sucks, but the new space invigorates me, as the memory of our previous home is shadowed by chemotherapy and isolation.

We begin 2018 in our new home and a CT result that definitively states “no evidence of disease.” Anyone in the cancer community knows how an NED feels. But I’m wary this time. We’ve had these results before and 8 months later I was back in treatment. I’ve already been told that this will probably be a chronic condition.

It’s not good news or bad news. It’s just… news. I don’t hold my breath.

It turns out I don’t have to.

The following month, my blood markers are high. High enough that my oncologist wants a PET. Sure enough, the PET shows disease activity, but it’s all mild and none of it can be biopsied. I’m completely asymptomatic, so I choose to wait to begin treatment. We tried the guns blazing approach last time and that nearly killed me. Let’s mix it up with some restraint. My oncologist is supportive of the decision.

The next month, my blood markers are even higher. Higher, in fact, than when I was initially diagnosed. My oncologist says he’d feel comfortable waiting maybe one more month, but after that he’d recommend starting treatment.

Turns out, it doesn’t get easier to hear you have to start cancer treatment, no matter how many times you’ve heard it.

He tells me to take the day to think about it, but if I could let him know by tomorrow that would be great. (Ha.) But I already know in my gut what to do. I email him as soon as I’m home, “Let’s do it.” It’s Thursday.

Friday morning I get a phone call from the infusion center, ready to schedule me. For Monday. The Monday two days from then. I mumble something about having to “check my schedule” (Whoops, sorry! Can’t do that day… I’ve got a thing…) and realize the ridiculousness of my statement as soon as it finishes leaving my mouth. I book my seat for Monday morning.

As soon as I hang up, I break down wailing from the shock of starting so soon and the frustration of having to potentially put my life on hold again. And then I put my big girl panties on, and get on with it.

I spend the weekend doing research on Doxil, the infusion that I’ll get every 4 weeks. It’s supposed to be well-managed, but I’ve heard that before, so I’m skeptical and anxious. We prepare for another battle with the unknown.

As I type this, I’ve recently completed my fourth round of Doxil. It turns out, it is manageable -- to the point where I can continue to work full-time. I work from home, so I’m afforded the flexibility of yoga clothes and pajamas on the days I don’t feel well (okay, and maybe some of the days I do too). I feel the worst on days 5-8, but this worst is so much less than previous worsts. It’s a walk in the park by comparison. I’m back to my “normal” self by day 11, and we fill the days of summer with activities and fun.

Is the Doxil working? Maybe. After round 2, my cancer marker dropped by 50%. After round 3, it went up a few points (my oncologist called it “flat”). We’re testing again next week. Hopefully, the numbers move in the direction we want. If they don’t, we have options.

That’s the real bonus of living with cancer in 2018, versus 2002, when my mom was diagnosed. There are so many more drugs available, and a slew of new ones on the horizon. But we’ll cross that bridge if we get to it.

For now, I focus on the things I can control; I release the things I cannot.

At least, I try.

The complete telling, as well as updates on my diagnoses & life with cancer, exists at cancerisGDbitch.com.

Sara Krish