Unremarkable

Celebrating two years clear and my six-year cancerversary

On Monday, September 9^th I had clear scans—officially marking NED for over two years, the point at which my risk of recurrence drops dramatically.

Two days later, we celebrated my six-year cancerversary, without really celebrating it at all, in a way that makes me feel more curious than sad, as if not feeling like we had to make a big deal of it was a victory onto itself.

Unremarkable is the word I can’t shake when I try to describe how I’m feeling as I wrap up this year: my second year of all clear, the year after my year of recovery after four of active treatment.

And though it may sound negative, anyone who’s had cancer knows the relief of its clarity on a scan:

Findings:

Spleen – unremarkable

Pancreas – unremarkable

Adrenal gland – unremarkable

Abdominal nodes – no adenopathy

Etc.

After a year of reflecting and writing about my cancer treatment twice a week for Strive for Five, I’ve spent a year returning to ordinary time—and I’ll admit that I’ve gone back and forth about the role writing plays in it. I missed the positive impact writing has had on my mental health, and I’m frustrated to acknowledge that this alone hasn’t been motivation enough to sustain the practice.

Lately it just seems like there is too much to do, mostly for other people—and not enough energy left for something that feels optional or for myself.

It was a hands-on year with the kids, getting Evelyn to her freshman year of college (Auburn, which she’s loving despite the football season) and the twins through 7^th grade. Thus far, my personal experience suggests that 7^th grade is rough for everyone, but it was very hard for me to not feel responsible for any emotional eruption after so many years of the kids having to hold it together. It’s as if suddenly everyone felt safe having—and voicing—their own needs, and it was an adjustment for me to shift back into mothering and stepmothering.

Getting Evelyn to Auburn

I found some comfort in taking on Evelyn’s Auburn rush wardrobe needs, which put me into a familiar space: a list, a budget, a spreadsheet; hunting for bargains and exchanging links of possibilities via text. What the twins needed was less predictable, more time-intensive, and usually, ran directly counter to my desire to SOLVE versus just listen (when they were willing to talk) and/or just be with them (when they weren’t).

I got better at this sort of caregiving over time; and more than once, I found myself grateful to have the stamina and energy required to sustain it.

Past 7th grade! The first day of 8th

It feels like everyone has now settled into their respective school years, and now I’m focused on taking care of some delayed maintenance for myself, with so many doctors’ appointments sprinkled across the weeks that one of my colleagues asks me if I’m ok.

I’m fine, mostly.

My gynecologist tells me I don’t have to worry about the fibroids a radiologist thought was a problem that would eventually require my attention.

My vascular specialist wants to keep me on the twice-a-day blood thinner, probably forever.

I had a clear colonoscopy, the first since my diagnosis.

A podiatrist schedules an appointment to “pop off” the toenail on the toe that has been painful and on-and-off infected for three years, since chemo initially made it vulnerable to paronychia.

My primary care doctor wants me to see a dermatologist about a similarly regularly infected fingernail, which I’m secretly hoping clears itself up before I face losing that nail as well.

Less straightforward is the cause behind my on-going fatigue, bad enough that I struggle to make it through a workday without a nap. At first, I attributed my fatigue to chemo, and when it didn’t go away, I wondered if it was a function of menopause. I started exercising more and changed the way I ate and quit TikTok and eventually asked my doctor if I just needed to make peace with this new reality.

“Is this just the way life is now?”

“No!” she said, emphatically; and thus began a series of blood tests, of which we are currently in the midst, with a plan to try a few things over the next few months to see what might help.

Until then, I’m trying to be gentle with myself—which includes trying not to feel guilty about all the things I feel like I should do, even if (especially if) they are good for me.

So, you’ll hear from me here, occasionally—and when you aren’t hearing from me, you can safely assume my life is continuing to be “unremarkable”.

My next scans will be in mid-January—beginning a pace of being scanned every four versus every three months, until I graduate to every six. Hopefully by then, I’ll have figured out how to curb my fatigue, and my nails will be growing back. And whether with ten nails or not, my fingers are crossed that by the time I share that update, I’ll also be in position to start writing again more regularly about our increasingly unremarkable life.

The good life: pizza, Wisconsin old fashioneds, cuddles

21-month scan: lymph limbo

Trusting my gut (literally and figuratively)

It’s probably nothing, but it could be something.

We went into my 21-month scans on Monday feeling as secure and optimistic as we ever have. Our pulmonary embolism adventure the week prior included a CT scan which confirmed my PE diagnosis while also showing a clear liver.

I was feeling so confident that I wasn’t even too bothered when Per took a look at the scan results in the portal and seemed stressed. I breezed through the report looking for danger: metastases, activity in the liver. Seeing none, I relaxed; so much so that I was caught well off guard by my oncologist’s concern when we met with her.

Per and I have a varying recollection of what she said after mentioning the lighting up of the lymph nodes: he thinks she was talking about 8 vs 12 cycles of chemo, I thought she was referencing how soon I should return for a scan. But we both snapped into focus the moment he asked, “Wait, you think it’s cancer?”

“Well, yes, I think it very well could be,” she replied gently in her lilting Irish accent.

No.

Whether it was instinct or denial, I felt a mental wall go down.

The activity was in my lymph nodes, not in the liver where my previous recurrences had always been. I had been feeling better since starting on blood thinners. And what brought me to urgent care the day prior to my ER visit was GI issues that had persisted for more than 4 days; during which I had felt too sick to eat. 

I had asked twice if maybe I shouldn’t do a stool sample to confirm a bacterial infection but let the medical staff dissuade me: what good would that do, they reasoned. I wasn’t bleeding, nor did I have a fever—so even if they were able to confirm a diagnosis, they wouldn’t treat it. I couldn’t really argue with their logic (and honestly, who really wants to do a stool sample they aren’t forced to do?), so I reluctantly dropped it in spite of the nagging feeling that it might be a good idea.

“Has my CEA come back yet?” I asked.

No, not yet; and we agreed that as a previously reliable indicator, we would wait for those results before making any conclusions. She also wanted to see the CT scans from the week prior and compare them against the PET and MRI they had completed; and speak with my surgeon for his perspective and to discuss the possibility of a biopsy.

A plan formed: depending on the CEA and the surgical consult, I’d either come back to rescan in 8 weeks or schedule an immediate biopsy to determine if this was a recurrence. At some point during the discussion it dawned on me: neither of these paths offered what I was ultimately hoping to receive: the “all clear” which would grant me a sense of certainty for a few weeks until uncertainty crept back in.

I skipped scan day Raoul's but not the glass of sparkling rose

This is what I reminded myself the following day, as the hours ticked by, awaiting my doctor’s call. By then, my CEA had come back, and it was stable: we breathed a sigh of relief. We had also Googled our way into the knowledge that activity in iliac lymph nodes was so rare in cases of colon cancer that somebody wrote a paper about the single patient in whom it had manifested.

I checked my dominant emotional state: not scared, but frustrated; an assessment that got upgraded to “pissed” in the retelling of the whole experience to my therapist a few days later. I was frankly uncomfortable with my anger, having fought against it in a quest for peace about my diagnosis and all it entailed. And I took some comfort in the fact that something inarguably scary wasn’t leaving me more unsettled than I felt.

My therapist helped me to see my anger as protective: How dare you try to tell me about my body? 

The implicit “you don’t know me” I felt over five years ago came back to me; and in this case, I reasoned it was actually true: this was only my third visit with this new oncologist, and she’s only ever seen me after clear scans. She hasn’t lived through my clinical history; she hasn’t been on the receiving end of my growing chemo reluctance, as recurrences chipped away at my confidence in its ability to have long-term impact on any micro disease; she’s not been watching the interaction of CEA and activity for years. She really does NOT know me; and as an MSK doctor and Dr. Kemeny’s protege, she’s also expected to be aggressive. I really cannot blame her for coming into the exam room swinging. Would I have wanted anything less?

In the end, though, I find myself coming back to my gut (both literally and figuratively) and its reliability. I realize I must hold two things as true:

1. Intuitively, I do not think this is a recurrence, and

2. I could be wrong.

Ultimately, she calls me back Tuesday afternoon after speaking with my surgeon. Like us, he points out that activity in this particular area would be a highly unusual path for cancer to take. He also notes it’s not an easy area to biopsy. They’ve agreed a rescan in 8 weeks makes sense; then we negotiate exact timing based on her travel and mine (and the best possible time for scanxiety to hit). I’ll return in 7 weeks, just prior to my birthday and our family trip to Norway.

Hopefully, on that visit I’ll get the gift of a few weeks of certainty; and until then I’ll just keep trying to trust my gut.

Pulmonary Embolism

Trusting my intuition (April 7, 2024)

An update from Per:

Last weekend, we got back from a wonderful spring break with the kids in Hawaii. Gina was feeling pretty jet-lagged…or so we thought. But by Wednesday night, her bad belly and fatigue were joined by dizziness, and sharp pain in her right shoulder and neck.

Knowing that area is where referred pain from liver issues presents, we got the twins ready for school and headed to the ER on Thursday morning.

We spent the day there, running Gina through all manner of tests and scans. The good news was that it wasn’t a recurrence of cancer (PHEW), the bad news was that Gina had a pulmonary embolism (PE) in her right lung—the other organ that can lead to referred pain in the right shoulder.

With an Rx for blood thinners in hand and instructions to rest, we headed back home.

Overnight, the pain moved to Gina’s head. It was so severe that it had her in tears. By morning, she just wasn’t herself: dizzy, nauseous, and couldn’t get her eyes to work in unison. So we returned to the ER. After a ton of questions and physical exams by several doctors, they put Gina on a stroke protocol.

For the record, while we knew something definitely wasn’t right, we also didn’t believe that Gina had or was having a stroke. After 6 different scans, EKGs, and an echocardiogram, and an overnight in the hospital; the stroke team and neurologists came to agree with us.

Their conclusion was that the previous day’s PE had triggered a much bigger reaction in her body than is typical—including a massive migraine (her first ever) which accounted for many of the other symptoms.

While it’s not Gina’s first blood clot since her cancer treatment began—more like her fourth—it’s the only one not directly related to a surgery. And it’s annoying, as her chances of having future migraines and strokes unfortunately just went up.

Bring on the blood thinners and compression socks.

The Silver Lining:

We’re headed to MSK next weekend to get scans and meet with Gina’s oncology team—and we’re doing so with a great sense of optimism, with eight different scans over the past few days giving us a sneak preview of what we hope is good news to come.

Getting (un)pumped for the rest of my life

Reflections on World Cancer Day 2024

Today is World Cancer Day, 2024.

A little over a week ago, I had a scan that confirmed I had been NED—no evidence of disease—for 18 months.

So, four days ago, I had surgery to remove the pump that delivered targeted chemotherapy directly to my liver. It’s been in my abdomen for almost five years, placed there by the surgeon at Memorial Sloan Kettering who told me that it held the promise of “years and years and years” when other oncologists were telling me they were hoping to keep me alive for a year or two.

The same surgeon who placed my pump removed it.

One of his residents stopped by beforehand to explain the procedure, describing how the catheters would be “dunked” (dunked?) back into my abdomen once they were detached from the pump. He told us the pump would go straight to pathology, which disappointed my husband, Per, who had hoped to get it back.

“Oh, I guess that means no Christmas ornament,” he said, resigned.

The resident, who had been following a (mostly) professionally rote script until then broke for a moment. “Whoa, no—it would be too gnarly.”

Strolling back to the OR

Then, before I had even stopped to consider the momentousness of the pump being removed, I was being walked back to the OR by the anesthesiologist. I recall telling him about by job leading the Working with Cancer initiative.

“Actually, there’s this commercial that’s really famous at MSK,” he started to say.

Already on a dose of something, I was excited to interrupt and tell him that’s the one, that was us, then struggled and ultimately failed to explain my connection as the anesthesia took over.

Waking up in recovery an hour or so later, I was surprised to feel the pain of the incision. Somehow, in not thinking too much about the surgery, I had also not expected much aftermath from it, despite the fact that it would require a four-inch incision.

Ouch.

When I was finally ready to stand and go to the bathroom, I became conscious of the strength of my core—newly obvious as I felt it separate and distinct from the wound, which really hurt. I pulled myself to sitting position almost on my own.  “That’s new,” I thought to myself.

It wasn’t until after I returned to the bed that I allowed myself to touch my abdomen, below the incision and where the metal pump had been, and the impact of my own touch shocked me as my belly yielded to my own touch.

“I feel like myself again!”

Feeling like myself after surgery

The words formed in my head almost before I had a moment to be conscious of them, and it occurred to me that I’m not sure I had totally understood how much I had not felt like myself when I had the pump. After I became used to it, it didn’t bother me—until it did. And once it started to bother me, it felt like an increasingly tangible anchor, growing heavier and more taught with each step I tried to take away from my former self.

Suddenly, it got in the way of everything: from bear planks and belted dress pants to sleeping and sex.

“We usually wait for 18 months to 2 years to remove the pump, as that is when the risk of recurrence is decreased, but ultimately the patient knows best,” said two different doctors, each gently if clearly encouraging me to consider holding out for another six months.

“Great,” I replied. “I feel strongly that it is time for the pump to come out now.”

“Ok, well, that is why it’s a patient’s choice.”

“Yep! I’ve made it!” I responded cheerily, unmoved by this line of discussion (and also aware that the old me would have gladly delayed the procedure for another six months at the slightest whiff of a physician’s disapproval).

My traditional post-surgical bran muffin was so happy to see me

I left the hospital a few hours after the procedure, wincing as our cab hit every single pothole en route to our hotel. True to form, I felt reasonably ok the following day, and we caught a 5 pm flight back to Chicago. Also true to form, I felt a lot worse by the time I woke up on Friday: nauseated, foggy, and in pain. I still honored a few standing meetings knowing that it was the final lead up to World Cancer Day this weekend—and a moment to recognize what the Working with Cancer Initiative has become in the year since we launched it: with over 1,300 companies which have now taken the pledge, including a full 25% of the Fortune 500, impacting millions of people and countless individuals who have reached out to tell me exactly what their company’s pledge meant to them.

Healing in NY (with a view from the hotel's rooftop, a few blocks from work)

I gave some official head nods and direction, knowing both that I wasn’t at my best and that everything would be OK despite that. The most rewarding part of my job has long been assembling a team of people with the talent and skillsets to extend and elevate any vision I could imagine, and Working with Cancer has offered exactly that kind of privilege.

I’ve closed so many chapters over the past few months: my five-year cancerversary, the completion of my Strive for Five series; my one-year clear scans and then my 18-month clear scans; the first anniversary of Working with Cancer, and now the removal of my chemo pump, which feels more like anything to date like the closing of one part of my life and the start of another.

There’s something bittersweet about moving forward, knowing that beginning a new chapter means closing the previous one—and maybe it’s especially nuanced when you aren’t completely sure what will come next. But whatever awaits me, I feel a certainty in my heart: I am strong, I am healthy, I am stepping firmly and joyfully back into my whole true self.

Whatever comes next, I am ready.

18 months clear!

And one more week with the pump

Yesterday was a whirlwind day - beginning bright and early with an MRI, then a PET scan that ran a few hours behind (thanks to the breaking down of the fancy dosing machine that forced everyone to get their injection the old-fashioned way, via syringe), an Uber to another building where I was 30 minutes late for blood tests, a pre-surgical consult with the surgeon who had missed the memo about a possible pump removal on his schedule the following day, and finally a chat with my oncologist, who gave us a “wet read” of the PET scan result which had yet to hit my portal.

By then, the surgeon had scheduled me for a pump removal procedure next week, so we were glad to hear her say, relatively confidently, that the PET scan looked good to her.

Cheering to unofficially clear scans

We went to Raoul’s for dinner, and cautiously toasted the clear scans as per our tradition: with a glass of bubbly rose and a plate of steak frites (plus roasted chicken with truffle risotto, which was so good we were half-angry we hadn’t ordered it previously). It wasn’t until we were back at the hotel that the last official scan result hit my portal: NED.

We came home today, a day early, with my pump still in tow as well as a few dozen bagels in our luggage.

Ess-a-Bagels and cream cheese in our checked baggage

I’ll head back to New York next Monday for a Tuesday morning pre-op, the pump removal procedure Wednesday, and a day to recover on Thursday before boarding a return flight home. I’m looking forward to spending some with colleagues in our New York office while I’m there and trying to figure out if I can make it back to Raoul’s with one of them. Debating whether I should try to sneak in an appointment at Peachy for a little Botox; it feels a little… uh… off to be worried about facial aesthetics when I should probably simply be celebrating my actual health but note that this hasn’t stopped my consideration of same.

Once we are back in town, I’ll be a few pounds lighter, and Per will have a new Christmas ornament he can hang with the Star Wars collection on the back of our tree.

And it’s right in time, as I just heard this weekend about a close friend who is dealing with her own new cancer diagnosis. This is part of what made it all feel so urgent to be able to close one chapter and begin another; and please know that all the stars you send to me will be received, magnified, and reflected to her as she begins her journey. If she and her family experience even a fraction of the love I have received over the years, I know their lives will be changed profoundly, and beautifully.

Thank you, as always, for your incredible support.