MRI Results are Clean
TLDR: The MRI results say there are no cancer metastases on my liver.
Seriously, this post is way long. You can stop reading here if you want. I’m still NED (no evidence of disease). The rest is so I don’t forget. Or rather, so that I’ll be able to remember after my mind covers the past week with layers of time, denial, and post traumatic amnesia.
The start of 2024 was not easy. The day after Christmas brought the gift that no one wants - Ureter stents.
They left one stent in (from one kidney to my bladder) after my operation in October. The stents only last for about 3 months before they need to be replaced, as they are plastic and therefore an infection risk. The folks in urology decided that due to radiation damage from cancer treatment a few years back, maybe I needed a stent on the other side as well. Plus that kidney looks a little plump. So I went in to get the old one out and have two new ones put in. Luckily, this is a procedure that doesn’t involve making any new holes - They can use one I already have. Even more luckily, due to the small size and extreme sensitivity of that hole, they knock you out ahead of time.
I meet the urology surgeon for the first time as they’re prepping me for the procedure. He references a collection of fluid in my pelvis that was on the last CT scan. Mentions it with a bit of a shrug that clearly says ‘not my fucking problem’. Santa must have brought the doc socks.
We leave the hospital without any post-procedure follow up from urology. The next day consists of pissing razors. This side effect went unmentioned, despite being very much urology’s fucking problem. Anesthesia calls to follow up and gets urology’s earful. Urology, bitter about working on Boxing Day, never calls.
Early January’s post holiday respite slides into mid-January’s cold doldrums, typically the deepest of my year. My GI system isn’t faring well. I can eat on some days. Other days I have endless intestinal gurgling. Loud transfers of liquid, seemingly directionless. No appetite. One x-ray shows a possible obstruction. Another x-ray a week later looks more definitive (not in a good way). A follow up CT at the end of January doesn’t look great, and I’m down to about 140lbs. My liquid diet isn’t keeping any pounds on. Plus the fluid in the pelvis. So I’m admitted to the hospital.
I don’t tell many folks I’m going in - I’m hoping for a quick stay. The first day brings my first experience getting an NG tube shoved up my nose and down my throat while conscious. This is unpleasant, but goes smoother than expected. Then a PICC line inserted the next day (my 5th), so they can give me IV nutrition. On the third day - Remember the fluid in my pelvis? The GI surgery team steps up to own it - So it’s their problem.
To drain this pelvic fluid, you can’t just jam a needle through anywhere. It’s a pelvis. There’s a lot that goes on down there - Pooping and peeing and reproducing and whatnot. As it turns out, the most direct way to this fluid deposit is from the back - Right through the top of my right butt cheek. You know that spot you rub when you have lower back/upper butt pain? That’s where the needle goes.
They bring me down to the CT machine to have the procedure, heavily dosed with the hospital 3rd day prescription cocktail of sleep deprivation and stress. When nurses can’t agree on where to put my TPN IV machine, I helpfully disconnect the TPN line myself and stop the pump. Now instead of two nurses quibbling with one another, there are three focused on admonishing me. ‘You’ve put your procedure at risk, what if your blood sugar drops, we can’t connect that TPN again’. This all sounds like excuses to me - I was on TPN for 14 months with no blood sugar issues on disconnect. You want to keep a CT machine and a doctor idle, that’s on you. A waiting period of ten minutes provides sufficient time to brew my shame. The doctor arrives and I apologize for my actions. I’m obviously not thinking straight. They’re understanding and kind. I’m also nervous about this CT scan guided procedure they’re about to attempt. There are no warnings, and I’ve done no research..
Administered not nearly enough Versed and fentanyl for what’s to follow. While laying on my left side, I can’t see what I perceive to be a 16-penny nail as it is slowly driven through my upper butt cheek and into my pelvis. Intermittent images are taken on the CT to make sure the nail goes to the correct location and to lengthen the entire procedure. Prior to now, Versed has left me feeling ambivalent and even forgetful during procedures. It’s outmatched here, and it isn’t close. They say the nail is a plastic tube, but I know what a nail feels like.
Post procedure, wheeled back to my room, inconsolable. On my side, crying like I’m 7 years old, for an hour. Headphones in, blasting Japandroids, ignoring all nursing staff. Then some morphine. The pelvic pain is so bad, all urinary control is gone. Pee leaks out of me with no notice. This feels very much like a permanent condition. It continues this way until morning, when the nurse’s aid can’t understand how my desire to stay warm is outweighing any concerns about wet bedding and bedwetting.
Luckily, urinary control returns a few hours before urology arrives and tells me not to worry. The new drain is doing its thing. The next few days - island getaway, Mardi Gras and Super Bowl parties - All missed. My obstruction clears, and I’m allowed to eat again. Note that there’s no object that was obstructing - It’s just that my intestines and their associated scar tissue got in a bad spot. My drain fluid tests positive for MRSA. Folks start showing up in yellow gowns, but I’m told it isn’t a big deal. Sent home after 8 days with a drain hanging out of my upper butt cheek and 10 days worth of antibiotics.
Over the next few weeks I try to figure out what I can eat without causing the symptoms of a blockage again. Pizza? No - 2 days of gurgle after only 2-½ pieces. Noodles with beef and sour cream? Nope. Gut probably has nothing left to digest dairy after days of IV and oral antibiotics. Pho? Winner. Pho almost every day (including today). I’ve tried 6 different places. Tip: There’s a robot server and lots of meat at Pho 919 in Cary.
Leap day closes out February, and it’s been one month since my last CT. One nice side effect of all these extra CT scans is that I’m not nervous about them spotting a cancer recurrence. I even mention this at lunch with a friend before my CT. No big deal, just had one a month ago. Get my CT, and head off to grocery shop. My phone dings while I’m in the Compare looking for coconut cream for pina coladas and painkillers - There’s a fresh pineapple at home, and the new blender blades seem up to the task of turning ice into slush. It’s the CT results, but I’ll check them when I get in the car. I forget and don’t even look until I get home.
I’ll just paste some radiology reports here:
- Liver: There is a new 1.0 cm lesion within hepatic segment IVb on series
3 image 45. There is a new 1.1 cm lesion within segment 8 (3/31).
And
Impression:
- New hepatic lesions, suspicious for metastatic disease. Recommend MRI
abdomen with and without contrast for further evaluation.
This is not good. The most common site for colorectal cancer to migrate to is the liver. Once cancer leaves the original location, the complexity of treatment goes up, and the effectiveness goes down. There are still treatments with curative intent, but it’s a hard road that no one wants to be on.
The next few days are difficult. I tell a few people with intimate experience with cancer what’s up. Avoid telling family until the weekend. Duke schedules the MRI for April 4th, a 32 day wait that would, in less dire circumstances, be laughable.
One bright spot - I’m a member of a private Facebook group called Colontown that acts as a support system for colorectal cancer patients and caregivers. The moderator of the LiverLovers sub-group says they are here to help me. Sure, whatever, help me cope, fine. Betsy wants to know where I live and where I’m being treated. Upon hearing Duke, she says I want Dr. Lidsky. And she’s going to text him now. At 8:30PM. A person I’ve never met, who from what I can tell doesn’t even work for a medical facility, is connecting me to the correct liver surgeon at Duke. Over Facebook. I haven’t gotten a call or message from anyone at Duke, but a stranger who’ll never see a co-pay is somehow coordinating my care more effectively than I’ve ever experienced.
My GI surgeon’s assistant calls at mid-day on Friday, and says that evidently ‘someone already has you set up with Dr. Lidsky’s team’. In the days after bad test results, there are few sources of comfort. Having a plan is one. Betsy was not only offering encouragement - She helped to implement a plan. I’m still blown away. You can donate to their nonprofit at https://paltown.org/
My oncologist messages me Friday night, and he’s ‘also very concerned with these scan results’. We need to biopsy one of the liver spots. A liver MRI would also be helpful.
Monday comes, and we’re looking at outside MRI providers. Ask Duke for a referral, but the liver doc prefers internal scans. They move the MRI to the following Tuesday, 3/12. Barely acceptable, but enough for me to stop fantasizing about picketing Duke Hospital with a sign that says ‘Cancer MRI Wait Time: 32 Days DukeIsBroken.org’.
Wednesday brings an appointment to have the drain pulled from my buttocks. It’s not last on my list of priorities, but it’s not near the top. I’m still adjusting to what the next few months will look like. The most likely scenario is some kind of systemic chemo, followed by liver surgery. Not sure if the lesions shown on CT are resectable or not. Maybe an implantable hockey-puck sized chemo pump that delivers straight to the liver is on the table.
There’s some footage of a person in the surf as the 2004 tsunami hits Thailand. He’s just looking at the wave coming toward him. It’s haunting, watching him not turn to seek safety. That’s how it felt, looking at the treatments ahead. Nowhere to run, and no ability to conceive what was to come, apart from knowing it was more than I could bear.
So Wednesday morning arrives, and I don’t have any real work to do nor the mind to do it. With Karen’s blessing, I head over to Duke Radiology and proceed to treat them like a barber shop. Any chance for a no-show? I’m looking for a walk-in MRI. The person at the desk offers me the scheduler’s phone number. I give them a call and explain what I’m looking for. They put me on hold for five minutes. ‘Are you there now?’ ‘Yeah, I’m standing right outside the waiting room.’ ‘Hold on Mr. Hubbell, I’m working on it.’ I’m starting to think maybe this is going to work out. Sure enough, she gets back on the line and has me scheduled for 10:30AM at the Cancer Center, a 5 minute walk from where I’m standing.
Get stuck a couple of times for one IV, and I’m in the machine by 11. Out by 11:30. By now, Karen has used her doctor powers to call the radiology reading room. They say they’ll move my MRI to the top of the stack. We’re thinking it’ll take maybe an hour. So we wait. I come home for lunch, and Karen takes me over to the appointment to remove the drain. The GI team is behind schedule (as is their custom), so we don’t see the GI surgeon until about 3PM for a 1:30PM appointment. Still no MRI results.
Karen’s pulling for something fungal. Maybe the MRSA that was found in the drain fluid did something strange to the liver. Dr. Migaly, the GI surgeon, mentions possibly the contrast used was at some in-between phase. He also mentions that he found the CT results shocking. That said, the mood in the room is not hopeful. I’m trying to not lose focus on what’s likely ahead of me. But the longer the read takes, the more hope creeps in. Maybe it’s taking so long because they can’t square the MRI results with the CT. Maybe.
Drain pulled, we head home. Henry has a basketball award ‘banquet’ (aside from post-assembly cupcakes, there is no food). After that, we’ve got reservations at M Sushi. It’s an attempt to make some positive memories before I’m back on chemo and raw fish goes off-menu.
Sitting in the chairs above the basketball court with the rest of the parents. There’s plenty of seating, so everyone is spaced out. Navy painted seats that fold up. They were once red. I’m in the last row on the corner, languidly clapping for whatever team award is announced. I know precisely 1 kid in this gym. I don’t know what team was up when my phone received an incoming MyChart message from my oncologist. This is what it said:
Dear Ed--
Here is the text of the MRI report (not released yet):
No mass to correlate with the previously indexed hypointensities seen on recent CT. These areas are favored to reflect areas of hepatocyte injury or inflammation, rather than metastatic disease. Redemonstrated benign hepatic hemangiomas, not significantly changed since 2021.
This result from the MRI combined with your negative Signatera in January do not support a diagnosis of recurrent/ metastatic disease.
I look forward to Dr Lidsky's review of the scan, but at this point there is no evidence of recurrent/ metastatic disease.
Best - John Strickler
There are parents of athletes at my kid’s school who are likely still wondering why the guy in the upper corner seat was weeping. Then texting, then more weeping.
Karen is cc’d on all my MyChart messages. I texted her @5:58PM - ‘Read that message.’ Her reply - ‘Best message ever.’ No energy left for exclamation.
I allowed myself (and my shape-shifting liver) a half a beer at dinner, which went from a wake to a full celebration. We all had the nigiri omakase dinner, and it was outstanding. The rest of the night was spent trying to get the good news to folks who had earlier heard the bad news.
On Thursday 3/7, I got a call from Dr. Lidsky. I immediately thanked him, while also expressing my desire not to need to meet him in person. He affirmed radiology’s read of the MRI, and suggested that he didn’t need to waste my time with an in-person appointment. My time? It’s your time that I don’t want to waste. And I thanked him for working so closely with Colontown, and how much of a comfort that was to have a plan in the first 24 hours.
Now I’m left struggling to find a balance. Facing life’s fragility gives a perspective that prioritizes living in the moment, but the weight of that perspective is a tough daily lift. A friend shared a saying that gives some insight - ‘You can’t mow tomorrow’s grass today’. It’s a fight to remember and recall suffering from the past and the perspective in that moment. There’s an instinct to put this all behind me, to move on.
I’ve been to a warzone, but as a journalist or a tourist? I don’t want to go back, and I won’t dare presume to tell what lessons to draw from the experience. That makes me feel like a tourist. With a dash of denial, I get to leave it behind. But I’m trying to write it down, to learn something, to live differently. To be a better friend to those in the warzone. To face life, and death, with intention, maybe?
You’ve read this far, which makes you a friend.
If this was news to you, I’m glad that you didn’t get the full immersion experience. Folks that happened to text me got the news, as I’m pretty shit at keeping mum. Making the call or text that says ‘CT scan says lesions on my liver’ is exhausting. I’m hoping to never do it again.
If this wasn’t news, thanks for the support over the past week. Know that you’re loved, appreciated, and trusted.
And to Karen - You’re the best partner I could hope for. Hoping for better days ahead.
Enjoy your time with friends and family. Hug someone.
~Ed