Tom spent the Fourth of July posting photos from his wedding last October to Facebook. I liked a photo of Mimi and me together on that happy day, so I made it my profile photo. More than 200 people “liked” it and another 20-plus commented, all encouraging messages. Several noted that I looked good. I was tempted to note that the photo was from last October. But I got some similar comments about looking good when I posted some photos from the road that same day on the way to Houston.
I do look good. I don’t say that boastfully, but kind of ruefully. I look (and feel) better than my news: I was at the MD Anderson Cancer Center last week getting my third major cancer diagnosis. This time I have pancreatic cancer.
I was honored and uplifted by how many people encouraged me during last year’s treatment for mantle-cell lymphoma. If you were heartened in some way by my kicking-cancer’s-ass narrative, please know that I did kick that cancer’s ass. My lymph nodes look great, and they’ve gotten a close look the last three-plus months in a PET scan, an MRI, two CT scans, two endoscopic ultrasounds and lots of lab tests as doctors have tried to figure out what the hell was going on in my pancreas.
This is another cancer entirely, not a return of the lymphoma. Those heavy-duty chemicals injected into my veins last year killed a lot of stuff, and all of the lymphoma. But, as my pancreas specialist, Dr. Matthew Katz, explained, the chemotherapy that kills mantle-cell lymphoma isn’t what you need to treat pancreatic cancer. Maybe the pancreatic tumor was there all along, a couple of doctors have theorized, undetected amid all the lymphoma tumors surrounding the pancreas in 2014 when I was diagnosed. My chemo might have held the pancreatic cancer at bay last year, but it resumed growing enough when the chemo stopped to be noticed as something in my follow-up scan this April. All those other tests followed that scan, trying to figure out what that something was. We finally got the answer last week on my second biopsy.
I spent four nights in Houston, two hospitalized and two in the attached hotel. I had doctor’s appointments, lots of lab tests and that biopsy.
There are no good types of pancreas tumors, but mine is the worst type. Pancreatic cancers do not have good survival rates, even when caught early.
We don’t know yet whether my tumor was discovered early. Medical oncologist Dr. Robert Wolff explained that I might have Stage I pancreatic cancer, which would be bad. Or Stage II, which would be worse. It’s not Stage III, but I might have Stage IV, which would be the worst.
On scans, my tumor appears confined to the pancreas, or localized, which would be the best of the bad news. That would mean we might be able to treat this successfully with chemotherapy and surgery.
But the tumor markers in my blood are much higher than you normally see with that localized Stage I pancreatic cancer. That probably means cancer seedlings too tiny to be seen on the scans have spread outside the pancreas, perhaps to the lining of the stomach or my liver. I’ll be returning to Houston next week for a laparoscopic examination. Last week’s endoscopic examination went through my esophagus to look inside my stomach and intestine. This time the camera will go through an incision in my abdomen and look around outside those organs, where Dr. Katz should be able to see if the cancer has spread. And he’ll take a third biopsy, this one from my liver.
If my cancer is at Stage II or IV, chemotherapy can impede its growth, but we would basically be playing defense until that becomes pointless.
(Apologies to any friends or family confused if this contradicts anything we’ve told you earlier. We learned more as the week unfolded, and timetables and details have changed.)
I had lots of time last week to wait for appointments and results and to read news reports about the bizarre developments in the presidential race and about the horrific violence from and against police, starting with a shooting in the city where I live. I couldn’t look away from the news and yet, I couldn’t really focus on it. Often big stories trigger the reporter instinct, an urge to rush out and cover the story (or at least blog about it from afar or read and watch the news insatiably). But when you’re hooked up to an IV or awaiting pathology results, even that instinct turns numb.
Some friends and family have expressed anger at my facing another type of cancer so soon after finishing my last round of lymphoma treatment. I won’t say I haven’t been angry or sorrowful myself. But I was called from the waiting room to get my CT scan July 1 along with a boy who looked like he was 7 or 8, accompanied by his mother and a brother who looked as frightened as the patient. Let’s save our anger and sorrow for them and other children facing these awful illnesses. (From our hotel room in Houston, we could see Texas Children’s Hospital, which looks like it’s about 15-20 stories tall, every floor filled with stories sadder than mine.) I lost a nephew at 16, another at 19 and a great nephew at age 7. I’m not going to whine (much) if I’m running out of time in my 60s.
I’ve lived a good life, and I can handle whatever Cancer 3.0 deals. But I’m angry about children facing this mystifying disease that this old man can’t understand, about children who won’t get all the opportunities I’ve already had.
I’m angry as well about the people grieving after last week’s violence. However much time I have left, I’ll get a chance to say goodbye to the people I love.
Whatever next week’s surgery shows, we have absolute confirmation of my observation from 2014, when I reported my lymphoma diagnosis: I am fertile ground for growing lumps, especially in the abdomen. I had a cancerous colon tumor removed in 1999, plus some polyps since and that trifling 2005 round with basal cell skin cancer (that was up on my neck). And the lymphoma diagnosed in 2014 caused lumps from my jaw to my crotch.
I may undergo some sort of genetic testing that may help identify whether my problem goes beyond bad luck, in hopes of providing early help for any of my sons if I have passed those genes on.
The sons and Mimi have been great through this all. Mike flew down to Houston as soon as he learned of my diagnosis. Tom flew in Saturday to spend a few days with us at home. Joe is on deck, ready to come whenever we need him. All three have been here for us several times since Cancer 2.0 started and will again. I could not ask for better support from family and friends.
I have grown weary of cancer testing and treatment. I don’t know what the doctors’ next recommendations will be, nor whether I will follow them.
Since I feel great, I’m not canceling any upcoming travel plans yet. If I have to undergo chemo, it will be outpatient chemo and pretty mild compared to what I endured last year. My immature bone marrow wouldn’t be able to handle anything heavy-duty.
At this point, I plan to keep commitments to speak on panels at the Association for Education in Journalism and Mass Communication in August, at the Online News Association and Excellence in Journalism conferences in September and at a Washington & Lee University Ethics Symposium in November. But I’ll write the organizers of all those events, sending them this link, and I’ll understand if they want to substitute someone else now, rather than at the last minute. I’m scheduled to teach a class this fall at LSU, and will be discussing with the dean and associate dean whether to proceed and what Plan B will be if I need to back out during the semester.
Whatever happens, I remain as grateful as I was in 2014 for all the time and wonderful experiences I’ve had since my first round with cancer in 1999. And since then you can add Tom’s wedding, last month’s Royals weekend with our sons, celebrating last year’s Royals World Series win by long-distance with the sons, a swamp tour with Mimi and lots of other special family moments. Hell, we enjoyed some good Texas barbecue in Houston with Mike during all last week’s waiting and worrying.
I’ll admit to some frustration and the weariness I already mentioned, but I’ve had too much joy to feel sorry for myself. Whenever my end comes, if cancer is the cause, do not say I lost a battle with cancer. I won a game with life, but the game eventually ends.
I don’t know whether I will write as much about Cancer 3.0 as I wrote last year. I loved the connection to family, friends and strangers who became friends through sharing my 2.0 journey and journal and my updates on social media, and I thank you profoundly for that. But at the moment, I don’t have much more to say. When I do write, I may spend my time on private letters to Mimi, my sons, other family or friends. I don’t think I’ll be going silent here or on CaringBridge. I’ll still post major medical developments there, and Mimi may when I can’t. But I may not be as chatty about treatment there or journalism here.
Or maybe chatty Steve will return before long. I’ve been surprised too many times in the past couple of years to predict what comes next.