Surgery 2, Day 18, Medical Marathon

Standing in front of the no outlet sign at my house
Here I am trapped at home with no outlet. The bump you see on my left abdomen is my hepatic infusion pump, a hockey-puck-sized pump implanted under my skin.

I slept really badly the night before Medical Marathon day, with a persistent buzzing pain in my abdomen at the incision sites, especially where they had been frosted with Dermabond surgical glue. Whenever the benadryl wears off this usually happens, though it’s much less bad now that most of the excess glue has flaked off my skin.

I had to stop eating and drinking at midnight for my 8am flouroscopy and SPECT scan appointments, and pretty much from the stroke of midnight my mouth was dry and I felt like I was dehydrating fast.

I was also worried about what would happen the next day, which didn’t help. Would we decide to do systemic chemo? Is it too soon to start the hepatic artery infusion pump chemo? Is my liver recovering okay?

So I tried to sleep lying flat on my back in the bed until my bones hurt. I am not a natural back-sleeper so sleep does not come easily. At about 3am I moved down to the recliner downstairs, and stared at the ceiling for a good hour until I put some music on the stereo and it helped me relax and drift off into several 20-minute naps. After a while I tried thunder sounds on YouTube and it helped knock me out until my wife woke me up saying it was time to go to the hospital. I took my morning medicines except the blood thinner, which they asked to be held, and I left out the fish oil, and all vitamins to avoid unexpected blood thinning effects. The best part was getting a sip of cool refreshing water with the pills. I was parched!

We left early while dawn was still creeping across the sky, and we had to swerve to avoid a fallen tree in our lane, and every bump and jostle hurts my abdomen for a second or two. We arrived at the hospital, and my wife dropped me off at the hospital entrance and had me wait on a bench until she parked and came back. When she arrived she took a nearby unused wheelchair and I got into it, thinking it would be a great idea since to date, I’ve only been able to walk a maximum of about 200 meters at once before getting tired out. She wheeled me to the radiology clinic, and we checked in. They gave me a fall-risk bracelet since I was in a wheelchair, then we waited. Patients were called, more patients came and were called, and we sat there for 45 minutes before asking reception if we had been forgotten, we have another appointment coming up with nuclear medicine and don’t want to miss it. The receptionist called someone, then said the nuclear medicine appointment is sort of a part 2 of the radiology appointment, so I will not miss it, just wait.

And wait we did, for a total of a bit more than two hours before I was called. I couldn’t bring anyone with me, so I left my phone and effects with my wife and they wheeled me into a familiar-looking room. This is where my port catheter was installed! I remember the metal table that was too skinny to support your arms, and the overhead fluoroscopy unit and its monitor.

They got me up out of the wheelchair and helped me onto the table, gave me a bolster for under my knees for comfort, and to pass the time while we waited for the doctor, they asked me if I live in the area, how long I’ve been here, my favorite restaurants, that sort of thing. Then the doctor came in, got out a huge Intera 3000 access needle, then turned on the fluoroscope to have a look at my hepatic artery infusion pump. The picture that came up was pretty cool, it looks like someone implanted a tiny UFO in my abdomen. From my perspective, not having x-ray vision, it just looks like a perfect hemisphere under my skin, like a little hard boob on my tummy. I wanted the picture for my blog, and they obliged me:

The hepatic artery infusion pump, and attached catheter going off to the left in front of my spinal column.

The HAI pump is located on my left lower abdomen. It has four little loops around the perimeter for being sutured into place. You can see the catheter coming out the back and headed to my right side to merge with my hepatic artery. In this picture you can see the needle having been placed in the lower left quadrant of the access port. If the correct needle is inserted there, and pushed in deeper than the reservoir, then the needle has direct access to the catheter leading to my artery. This is called bolus mode, where things can be injected directly into my liver. The doctor expertly placed the needle using the fluouroscope for guidance, with only a small instant of pain when the needle went into my abdomen. I’m not used to getting shots there, and I was trying to relax and not jump off the table. The only rough part was that after inserting the needle it needs to be pressed deeper into the pump, which involves some pushing on my abdomen. Normally that wouldn’t probably hurt but after surgery everything aches.

Once the artery catheter was accessed, the doctor slowly pushed some sterile saline to make sure the catheter was flushed and clear, and they called for the nuclear medicine folks to bring down a syringe of radioactive marker. Luckily the half-life of this radioactive material is 6 hours, so… not so bad, right? It took a good half hour for Nicole from nuclear medicine to show up, pull the syringe out of a protective cylinder, and push the radioactive marker into the catheter. They pushed more sterile saline to flush the marker out of the catheter, and I was helped back into the wheelchair. Someone went to fetch my wife, who we met up with out in the hallway, and I was wheeled through a maze of corridors, past the emergency department and ambulance bay, through a secure door and into another building of the hospital. After another couple twists and turns we ended up in a windowless waiting area, where I waited for them to get the SPECT (single-photon emission computerized tomography) scan ready. I was collected from the waiting room and taken to the bathroom, where they wanted me to drain my bladder. I said I thought it would be difficult since I was dehydrated not being able to drink since midnight (now about 11 hours ago), but I went into the bathroom and somehow managed it. When I emerged, the tech had a cup full of water for me which was very sweet and I drank as much as I could before getting onto the table for the SPECT+CT scan. I got another bolster to support my knees comfortably, and had to rest my arms above my head on a sort of triangular structure with a strap to hang on to. When I was ready, the table slid further inside the scan machine until the scan plates were above and below my abdomen. The scanner was a sort of U-shaped frame with two square plates, sort of like x-ray plates, one above and one below you. They adjusted closer to my body until the top plate was an inch or so above my chest.

First came a 5-minute scan where I had to hold completely still, though breathing was okay I couldn’t shift myself on the table until the whole set of scans were completed. The 5-minute scan was pretty tolerable, the scanner rotated slowly in a half-circle around me to get a 3-D image. When this was successfully completed, the technician told me to hold completely still for 30 minutes. The scanner rotated in a half-circle again, but this time the scanner wouldn’t move for several minutes, then it would rotate a few degrees, then another wait.

I did pretty well until about 25 minutes went by, and suddenly I think I hit my no-fidgeting limit. I flashed back to my childhood, and all those Sunday masses at the crack of dawn where my parents ordered me to hold still for an excruciating whole hour. I don’t think I ever once successfully managed that, and 25 minutes might be my theoretical maximum stillness limit. Suddenly my legs felt like they were tensing so I tried to relax them without moving. The last few minutes were a huge test of willpower, and I somehow managed it because the technician counted down the last couple minutes and I was free. BUT I couldn’t move quite yet, we had to do the CT scan. So the technician had me put my elbows closer together so I could fit down the narrow little CT tunnel. I looked down at it, it was a bit wider than the MRI tunnel I believe, so I guessed it would be okay. The technician advised me to close my eyes, and advised me that it would only be about 30 seconds after the CT scanner spins up.

The table slid down into the CT tunnel and I obediently closed my eyes and listened to the machine spinning up. Thirty seconds of the table moving in and out went by quite quickly, and at the end I opened one eye to see how narrow the space was. It wasn’t too bad, didn’t cause any feelings of panic, so I had a look around. It was pretty boring, and as the table came back out of the scanner I closed my eyes again so I would seem more compliant.

And then it was over! I got back into the wheelchair and was wheeled back to the waiting room, and my wife wheeled me out of the building and across a street into the cancer center. I was late for my lab appointment, but they took me in pretty quickly and accessed my port, drew several vials of blood, and my understanding was that I might have to go home with some chemo in my HAI pump and maybe 5-fluouroracil in my port as well, so I asked them to keep the port accessed. The port nurse didn’t see any evidence that a port infusion was planned, but she said they can de-access the port in the infusion lab pretty easily if it is not needed.

My next appointment was at 2pm and it was about 12:30pm, so we went to a cafe for lunch. I had an avocado-toast grilled cheese sandwich and ordered a mango-pineapple-yogurt smoothie. I ate half the sandwich (I haven’t been able to hold a full meal in my stomach yet without discomfort and digestion problems), and part of the smoothie. I realized immediately that the smoothie was a mistake, it hit my stomach like a bomb going off and I felt unsettled and nauseous after that, so I stopped it.

We went up to the oncology clinic and checked in early, got brought back to a room before too long, and my oncologist came in a while later while we were playing with the examination table/chair thingy, trying to get it to recline.

The results of the SPECT scan were favorable. The radiotracer showed good complete infusion, with better coverage in the right hepatic lobe, right where we need it to be. Perfusion to the lungs is “only” 5.72%, which my oncologist says is “good” which I guess here means, not all the dangerous liver chemotherapy will end up leaking into my lungs. I admit to being a little alarmed, I had the impression before that the HAI pump chemo was contained only to the liver. But it makes sense there might be a little leakage. After all, whole metastatic cancer tumors leaked from my bowel into my liver, so anything is possible.

My radioactive liver! Note the big chunk that got removed at the left (which is really the right as I’m facing the camera).

My blood tests were also encouraging. My liver numbers are back in the normal range, which seems miraculous. My AST, which should be between 15 and 41, was 37. After the liver resection and ablation surgery, it was an alarming 1156. My ALT, which should be between 15 and 63, was 53. After surgery it was an apocalyptically high 1718. So good job, Mr. Liver, sounds like you’re bouncing back nicely. Here’s an idea, how about we infuse a bunch of poison now, and see if that trend keeps up?

Speaking of which, this is my oncologist’s first HAI pump chemotherapy treatment, so this will be a journey of discovery for both of us. Luckily the team on the whole has a lot of this under their belt so, no worries!

Next I learned that later this month we will restart FOLFIRI + Bevacizumab for 6 more rounds of systemic chemo in case there is still some cancer breaking off and floating around. Mind you, there is a cool test called Signatera by the folks at Natera that uses your cancer tumor to create an individualized blood test for you that can detect one in a million circulating tumor DNA. It is expensive, probably $15k before the price is negotiated down, and my Blue Cross/Blue Shield insurance decided that they won’t cover it. If the test showed no circulating tumor DNA, there would be no need for systemic chemo at all, but since it’s not the routine standard of care (except if you have Medicare), we have to do the 6 rounds of chemo, each costing about $4000. Total cost of chemo = $24,000. Total cost of Natera testing = $15,000. Kind of a no-brainer financially, more especially if you factor in that I’ll be sh*tting fire and blood again for 3 months, not able to hold down food, eat spicy food, or even mint without feeling like the lining of my mouth was scraped out with a spoon. FOLFIRI is some bad-ass chemo.

So, maybe I’m not looking forward to that so much.

After my meeting with the oncologist, I met with the surgeon for follow-up way ahead of schedule. He was pleased with the healing of the incisions, though everyone who sees them winces a little at the big red allergic rashes where the Dermabond was slathered on. I got the okay to drive again!!! I stopped taking the tramadol 3 days earlier to help this happen. The next day I drove my car, which was a big mistake: every bump in the road felt like getting kicked in the nuts. I will just let things heal a little more before I go out again.

After the surgeon’s meeting we found ourselves with a little time before our 5:30pm infusion appointment, and I was flat out knackered without my afternoon nap, so my wife brought the car around and we drove home, which is thankfully only about 10 minutes away. I closed my eyes and suddenly I was a little irritated that I was woken up immediately afterward, but it turned out I had slept about an hour and it was already time to go back.

It’s kind of funny that you aren’t allowed to check in earlier than 30 minutes from your appointment time, so they specifically don’t want to see me before 5:00pm under any circumstances. And yet at 4:45pm the hospital called my cell phone asking if I intended to show up for the infusion appointment. Did they know I was off-campus now? Does that radioactive marker in my liver tattle out my position to the hospital now? It’s not like I hadn’t already confirmed the appointment days ago in MyChart, filled out a survey, supplied my insurance information, re-affirmed my race, gender, and orientation, supplied them with my pronouns, responded to at least 3 different text messages asking to confirm after I already did so in MyChart, and now confirmed verbally on a call that I would be there.

I checked into the infusion clinic at 5:02pm, went back to get my vitals recorded, then went out to the waiting room and watched some lady on HGTV cry for a half hour when a building got a stop work order slapped on it, or some such. Something very weird was happening at the infusion clinic today. There were only 4 people in the waiting room counting the two of us, and usually there were dozens. I presume everyone else was efficiently handled today, and they were all busy getting infused. So it was a bit of a surprise when we found ourselves still waiting at 6:30pm.

Then we got a call from the oncologist. He was at home by now, but due to a SNAFU I wasn’t asked to sign the permission slip to get HAI infusion today. So we would have to reschedule for next week. I was kind of fine with that, so we packed up and went home. The infusion got rescheduled for Thursday, because my pump was installed nearly 3 weeks ago, and the reservoir holds only 2 weeks of liquid plus a little extra for good measure. If the pump goes dry, apparently bad things happen involving freon propellant and my liver.

I got taken into the back so that the charge nurse could flush and de-access my port, and then we were let go for the day. That was the end of Medical Marathon day. I went home and slept for several hours, I was completely spent.

And then on Thursday we returned at 8:45am to the infusion clinic, signed the permission slip, and got an infusion room with a bed. The nurse came in with the intera 3000 needle kit, and then two other nurses showed up to be trained on how to access the HAI pump reservoir. It was a little harder than it sounded, as they have to tilt the needle after inserting it to get the bottom of the reservoir and extract the remaining sterile saline so it can be replaced with the chemotherapy drug. One of the other nurses took my hand to comfort me while the needle was being moved around, it was a sweet gesture and I must have looked pretty uncomfortable.

They had a lot of trouble drawing out more than a few milliliters of sterile saline (likely because 3 weeks had gone by, and it was nearly dry). When the needle was properly in place, they unwrapped the floxuridine + dexamethasone solution (at half-strength), and slowly injected it into the reservoir. Every so often they would stop to make sure there was some back-flow to confirm the pump was still pressurized and working. When the reservoir was filled, we were cut loose and allowed to go home.

Now for 2 weeks I will be constantly infused with the chemo cocktail, then in 2 more weeks the reservoir will be filled with sterile saline for a 2-week break. This will be repeated every month until at least January. This will be in addition to a 2-week cycle of FOLFIRI for the same period.

So that is the plan going forward.

3 thoughts on “Surgery 2, Day 18, Medical Marathon

  1. What grueling day, you are so brave, my dear nephew, proud of your strength to endure the treatments which will save your life. ❤️

  2. I am absolutely spent just reading all this. It is unimaginable what you have been through. God Bless you! I pray you will be healed.❤️❤️

  3. There’s nothing like the corridors, windowless rooms, and skinny, metal tables of major hospitals to make you feel like a slab of meat on a production line. Since they frown on metal and valuables, I have found old paperbacks to be good ways to spend the waiting time in a somewhat sane state of mind.

    Hate to see that you have to go through another round of FOLFIRI, but happy to hear that your liver evidently is super-powered.

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