One year ago tomorrow, I had surgery to remove the tumor on my pancreas. It seems not that long ago. I remember almost everything, from the sleepless night before, and the post-surgery morphine haze, to the rogue visit with Matt to other hospital floors, and the week of unrelenting day and night visits from nurses to check vitals and take blood. And the boredom; good God the hours and days in that hospital room dragged on and on and on.
This week, I underwent my latest CT scan to check for cancer recurrence. And as if to deny me a simple milestone celebration, Kaiser made me wait two full days for the results. Two. Full. Days.
Then, the results…when they finally came, they said: “known evidence of recurrent or metastatic disease in the abdomen and pelvis.” Layman’s terms: your cancer is back.
Wait a second. That’s the summary; the detailed report shows no such evidence. I know this because I’ve read at least half a dozen of these reports before, and I scoured this one 67 times trying to understand the disconnect.
I furiously email my oncologist: WTF is going on?
Realizing my freak-out level, Dr. E. (who rarely calls) phoned seven hours later to reassure me: There was a dictation error and they dropped a word. It should have read: “no known evidence of recurrent or metastatic disease in the abdomen and pelvis.” They dropped the Most Important Word in the Whole Sentence.
Good grief. And phew.
So now, yes, we celebrate a big-deal one year of cancer freedom.
One of the biggest struggles during this cancer ordeal has been my relationship with faith. Not faith in a higher power. But faith in my doctors.
It’s been especially challenging since my surgery nine months ago. I am in “surveillance” mode now. Every three months, I get a CT scan that looks for visual evidence of tumors, and a blood test that looks for evidence of CA19, a protein that can indicate whether my body is developing new tumors. Together, they tell the story of what’s happening inside.
With my tests in May, the first after my surgery, my CT scan was clear, but my tumor marker number was higher than normal. Not super high as with some cancer patients. But higher than it had been even at my sickest.
Wait. What? Why?
My oncologist said not to worry. The CT scan is the most important test (true), and there are good reasons why the CA19 might be high so soon after surgery. Three months later, same result: an above-normal CA19 number, but clean CT scan. Grrr. Now the CA19 is giving me fits. Is it picking up something that the CT scan can’t see?
My oncologist says, again, not to worry. We are looking for trends, up or down. Stasis is OK. Hmm. Dr. Google says one thing, she says another. Who to believe? For the sake of my mental health, I tuck it in the back of my mind and don’t think about it (and pat my neurotic self on the back for my maturity).
Fast forward to last month. This time the number has shot up even higher, and it’s caught the attention of my oncologist. In a late-night message, she doesn’t sugarcoat anything. She’s concerned enough that she orders a second CA19 test and moves up my scheduled CT scan.
Even with the reschedule, I am forced to wait two weeks for the tests. Two weeks of sleep-deprived nights and the encroaching worry about mortality—again. I seek relief in morning meditation and try to keep everything in perspective. We don’t know what we don’t know.
But I’m angry. Why did my doctor dismiss the first two CA19 results? Now her indifference is coming home to roost. Something is growing inside, I tell myself, and we should’ve caught it earlier.
I keep this development to myself. No need to draw attention or worry anyone else. I even decide that if the worst comes to pass and I go back for treatment, I won’t tell anyone right away.
On the morning of November 6, I go in for my scan on just one hour of sleep. I’m tired and hungry, which helps suppress my anxiety. As I lie prone staring at the Nemo decals on the ceiling, they drape my body in a heated blanket, inject the contrast dye into my left arm and slide me into the loud, whirring cylinder. The familiar disembodied voice tells me when I can and cannot breathe. It’s a reminder that, for now, I’m still a cancer patient.
The test results come back almost right away. I stare for a long time at my patient portal, afraid to click open…
A friend recently gave me a packet of five little booklets that she picked up from a cancer survivor in Joshua Tree. Jillian’s booklets are about being NERD, a medical acronym for “no evidence of recurrent disease.”
Being NERD, which I am, is a good thing.
It also means carrying around worry of becoming not NERD should the nasty cancer cells come back.
As Jillian writes, being in surveillance mode “means measuring one’s life into three-month or six-month blocks.”
For about two weeks approaching my quarterly tests, generalized anxiety takes hold. I don’t talk about the background worry because of my foolish attachment to stoicism, and because…what’s the point? There’s nothing anyone can say to relieve the anxiety. It comes with the territory—and will for the next five years.
Outwardly, we say what we think people want to hear and what we want to believe about ourselves: that anxiety and uncertainty helps us appreciate life and live in the present.
But a lot of times, Jillian writes, the actual reality is:
“I put my fear into a neat box so no one, including myself, has to touch or feel it.”
Until it doesn’t hold…
I finally open the test results.
First the CA19 level. It’s dropped dramatically almost down to normal. Wow.
Now the scans:
Overall stable appearance of the chest. No evidence for metastatic disease. Overall stable appearance of the abdomen and pelvis. No evidence for recurrent or metastatic disease.
Relief washes over me. I exhale for the first time in two weeks. I want to flee the office, go to the beach, watch the waves and deeply breathe in the salty sea air.
“I am grateful for being NERD,” Jillian writes. “Most days, I accept the uncertainty and find it clarifying. It really does help me appreciate life and be in the present. And some days, I’m scared, which is clarifying in its own way.”
So, what did I learn about faith in my doctor? This time, everything turned out OK. My trust is renewed. But what if it hadn’t worked out? Would I resent her for not taking action when those first alarm bells went off in my head?
I can’t worry about the what-ifs or dwell in negativity. I’d drive myself crazy. I’m determined to live life as worry-free as possible and refuse to let the specter of cancer paralyze me with fear.
Again, I turn to joy and daily gratitude for being here, alive and healthy. All I can do is put one step in front of the other, remember to breathe, and have faith that my body and my doctors—and maybe even a higher power—will look out for me.
[PS:The CA19 number is a blessing and a curse. It can point to problems. But so many things can drive it up and down that it sometimes ceases to be useful and provokes unwarranted anxiety. In my case, my oncologist says “it’s anyone’s guess” as to why it jumped around. I resolve not to put too much weight on it in the future.]
We had a work retreat recently, and one of the activities involved writing ten characteristics of yourself on ten stickers and tacking them to the front of your shirt. Then we mingled with colleagues, discussed each other’s attributes, removed a couple of stickers with each conversation, and mingled more until we were down to one sticker.
One of my ten chosen characteristics was “survivor,” and it’s the one I left stuck to my shirt till the very end. Some colleagues knew what it meant; newer ones did not. It felt radical to call attention to it.
Technically, in medical parlance, I am a cancer survivor, meaning I had cancer, but am currently cancer-free. But I am not “cancer-cured.”
The only way I can get a “cured” designation is by undergoing regular CT-scans and blood tests with clean results for five years. Yesterday was a scan day. The scans themselves are relatively quick and easy, especially now that I have more than half a dozen under my belt. But the days leading up to scans, and the hours afterward are nail-biting. I try to be Zen. I have no control over the outcome. But still, it’s a judgment day. What has my body been up to over the past three months?
It’s a reminder that survivorship is a journey.
Calling yourself a survivor is a nice post-treatment perk if you can achieve it. But I’m tentative with the word, even as colleagues, friends and family cheer me on and remark on my recovery. I know the risks of this cancer, and though I am hugely relieved to be alive and in good health, one eye peers anxiously at what might lurk around the corner. I don’t want to jinx anything by boasting about my survivorship.
This thinking must be common, and I assume it will subside over time. Maybe, though, instead of waiting, I should decide myself to control those anxious thoughts.
As I walked past the oncology department yesterday, I recalled my mornings in the chemotherapy infusion clinic—the near constant worry about whether the treatment was working, if my blood levels were up or down, and my vulnerability to infections. The medication smell, the nausea, the insanely annoying beeping of the universally despised (and frequently malfunctioning) pump machines. Everyone in that infusion clinic right now would do anything to be in my shoes. To be called a “cancer survivor.”
I need to honor the struggle, and my accomplishment and milestone. It’s time to fully, proudly and unreservedly own the word SURVIVOR and all it stands for. I worked hard, and I freaking beat cancer, and I will keep beating it day after day, week after week, year after year.
I guess I’m going to need some more stickers.
Update: Yup, still beating cancer this morning. The latest CT-scan came back clear. “No evidence of recurrent or metastatic disease within the chest or abdomen.” Six months down.
Those close to me know that I’m not given to excitement. Happy, yes. Content, of course. Blissful, I can do that. But today, I was smiling ear-to-ear after meeting with my oncologist.
As I mentioned in the last post, I came out of surgery with a clean pathology report. But I never really understood what that means. Isn’t that the goal of surgery, to vanquish the cancer? Well, it turns out that rarely happens, at least with pancreatic cancer. My oncologist said fewer than 10 percent of pancreatic cancer patients get this kind of news.
This could be big news for my future health. Pancreatic cancer, the beast that it is, usually comes back, and it comes back quickly and hard. It’s been my biggest fear, the worry that has kept my emotions in check, even after a successful surgery.
But the pathology report suggests my prognosis for a cancer-free future is good. My doctor was obviously happy to be able to share the news. She was actually smiling as we talked; I’ve only seen her smile one other time in the eight months we’ve known each other.
Good news begets good news. A clean pathology report means I don’t need to do any more chemo. This was not a given since they often do “clean-up” chemo after surgery. No need in my case.
I’ve been on a chemo break for seven weeks. Today’s news means I get to keep the returning color in my skin that everyone is mentioning, and the wisps of grey hair that are re-emerging on my head, and my eyebrows, and my energy and all those things that normal people get to take for granted. I don’t have to visit that dreaded infusion clinic or have my blood drawn once a week and worry about whether my red blood cell count or neutrophils are high enough.
No more chemo is a huge win.
As a newly minted “cancer survivor,” I now go into “surveillance” mode with CT scans every three months and watchful eyes on my tumor marker to make sure it doesn’t trend upward. Other than that, I may not need to visit 3701 Broadway for a long while.
I went to bed last night bemoaning my nagging post-surgery side effects. Today, I just don’t care. It’s sunny outside today, and it’s even sunnier inside.
The surgery went well. Fairly quickly without any surprises or complications. Biggest drawback was me trying to have conversations with people in a cloud of anesthesia. Well, and I guess the giant scar down the middle of my abdomen. I am already done with pain narcotics. Seems I might actually get ice chips today. The quest for French toast continues. Need to pick up my walking game as there seems to be competition from one of the spry olds on my floor.
I had my last chemo treatment (for the time being) a couple of weeks ago. And let me just say, I’d be dancing on a lush green hilltop too if my feet and legs weren’t so swollen from…the chemo.
After going into it with gritted teeth and a strong determination to vanquish the bastard tumor, my chemo run ended with a whimper, with me dragging my body late to infusion appointments because I just couldn’t take the idea of needles and nausea and the horrible smell of that antibacterial swab they use on me. So happy to have that behind me for now.
The reason I am on a prolonged chemo break is because it’s time for surgery. The reason I know this is because I asked my doctors, “Isn’t it time for surgery?” And they said, “Well, look at that. It IS time for surgery.” (That’s really how it happened.)
So this coming Thursday, I will check myself into the Kaiser Oakland hospital and let them dig around my insides.
It’s a complicated six- to eight-hour surgery (you can Google “Whipple procedure”) done by a Kaiser surgeon who I knew very little about until recently. I’ve met him twice and talked two other times, and let’s just say he won’t be reading me a bedtime story as I drift off to sleep before surgery. His terse demeanor is well-known on the hospital second floor. I’m prone to light banter when nervous; he has little time for pleasantries. All of this, along with my aversion to needles and scalpels and long bouts of unconsciousness, has left me on edge (terrified?) about the procedure in recent weeks.
But it turns out, after talking to peers, that Dr. K is also known for something else: being one of the best pancreas doctors in the East Bay. It also turns out, after getting to know him a little, that he is no-nonsense and no-bullshit, but not unfriendly. Just a little bored, perhaps, by having to explain a procedure he has done dozens, if not hundreds of times. If someone is going to extract a tumor from my pancreas and re-pipe my digestive system, it may as well be him. (Dr. K trivia: His daughter was Miss America once. The Miss America.)
I’ll spend a week in the hospital in recovery (assuming no complications) sucking on ice chips and apple juice out of kid-sized boxes, and then at least three weeks at home—not at work, not biking, not kayaking, not doing anything fun.
But…but…after a month of follow-up, clean-up chemo, I will allegedly be cancer-free for the time being. Imagine that.
People keep asking me whether I’m excited by the surgery and finally getting the tumor removed. I’m trying to come around to that. But mostly I’m just looking forward to when it’s over.