Chapter 7: Scanxiety

When I had my first set of scans on the day after my diagnosis, I was still in a state of shock. I don’t even remember the details of when and where they were done. I was walking around in a virtual fog.

At the 3 months mark it was entirely different. I had already had brachytherapy for the eye tumor. I settled into a more normal schedule. I went back to work and had gotten past the initial discomforts of having radiation. I suppose I was also past the most intense shock and denial of the diagnosis.

Now it was time for my routine scans to determine if I had metastasis. I can only liken this experience to putting your head in a guillotine and waiting for the blade to fall. If you escape the falling of the blade, you get to move forward knowing that in 90 days or so, you get to do it all over again.

When I arrived for my scans, at General’s outpatient diagnostic building, I was welcomed by the staff at the front desk some of whom knew me from working at the hospital. I have had CT’s before but never an MRI, so it was going to be a new experience. I filled out all the usual forms and have been advised of all the restrictions for an MRI. No metal implants. Check. No history of welding or metal in the eye. Check. No history of reaction to contrast. Check. On and on it went.

I was called back to a different waiting area and then taken to a separate room with chairs for lab draws and starting IV’s. The young lady that was starting my IV recognized me from the hospital as well.

“I am nervous about starting your IV. You’re the supervisor and I am going to be really embarrassed if I don’t get it.” She said.

“No worries,” I smiled and tried to reassure her. “I won’t bite if you miss it. I bet you will do fine.”

After putting the tourniquet on both arms and looking very carefully for the best vein, she prepped the one in my right arm. After taking her time to feel the vein several times she said, “Ok, big stick!”

Went right in. No problem at all. She drew a few ccs of blood for a quick lab test and then taped it down securely.

“Good job, well done,” I praised her good work, while thinking that she had indeed exceeded my expectations.

I know that when you’re nervous about doing something it usually doesn’t go well. This had gone surprisingly well.

“You can have a seat back in the waiting room if you want, or you can wait here.” She said, smiling. I could tell she was quite relieved after the IV start.

I was called back by one of the radiology techs that I knew from working in the hospital. She was very kind and welcomed me. She looked over the orders and then frowned.

“I need to check on something really quick,” she said.

She left for a few minutes and when she returned, she said, “We aren’t going to be able to do the MRI today. The doctor has ordered it with Eovist contrast and that is something we rarely ever use. I called the main hospital, and they don’t have any there either. They have ordered it, but it may not be in for several days.”

“So, I should just go home and wait for them to reschedule?”

“No, we can do the CT scan of your chest today but will need to reschedule the MRI.”

“Ok, let’s get this show on the road,” I said.

She handed me a pair of scrubs and I went into the bathroom to change. When I came back out, she took me to the scanner. I laid down and she put some pillows and foam blocks under my knees and head.

She told me my creatinine, which was the blood test they had done when starting my IV, was 1.1. It was good enough to do the contrast, but she advised me to really push the fluids after the test to protect my kidneys.

The contrast normally used for CT can really do a number on your kidneys. I knew that with the frequency of scans I would be having I needed to really watch that.

“Absolutely will,” I said.

The scan took only a few minutes and is totally painless.

When they do the contrast there is a sensation of getting warm all over followed by the sensation that you are urinating on yourself. I wasn’t. I knew what to expect so it didn’t really worry me. For those of you who are new to the scans it could be a little scary if you weren’t expecting it.

When the scan was complete, she carefully pulled off the tape and removed my IV. She admonished me again about drinking lots, and lots of water. I changed in the dressing room and headed home.

I called David to let him know I was on my way. He asked me if everything was OK.

“Well, there was a little snag, and they didn’t have the right contrast to do my MRI, so it is being rescheduled. I got the CT done though. No results yet.”

I stopped at the convenience store and bought a couple of bottles of water. I started chugging.

I pulled into the garage at home, I had a message pop up that there was new information added to my Healthcare application. I immediately went to the app and checked out the results.

The result started out as follows: “Since the previous examination on March 23, 2022, right axillary lymphadenopathy has developed measuring up to 2 cm. No left axillary or supraclavicular or mediastinal lymphadenopathy is present "lymphadenopathy had my mind whirring.

I didn’t tell David about it. No sense in both of us worrying about it. Might as well just wait until I see Dr. Anthony next week and see where we go from here.

I am sure that if anyone was watching me during that week I looked like Mary Catherine Gallagher, on Saturday Night Live. I was constantly feeling my armpit in an attempt to feel this mysterious lymph node. I couldn’t feel anything but fat.

The following day I got a call that the MRI of the liver had been scheduled for Monday and the contrast was available.

I spent the next 48 hours searching the internet for any mention of a case where Ocular Melanoma had metastasized to the lymph nodes. While most of the time it goes to the liver first there are a few cases in the literature that mention mets to the lymph nodes as a first area of metastasis.

Well, Sheeit! That would suck.

I arrived for my MRI on Monday morning looking like someone who has only slept about 4 hours in the last 3 days. That was probably because I had only had 4 hours of sleep in 3 days. Pretty good observation I would say.

Once again, my IV was started without incident. I filled out and signed the multitude of forms required whenever one has an MRI. I took off all my jewelry and my glasses and locked my things in a locker.

Once in the scanner the tech advised me of what to expect. I would have a series of images without contrast and then they would do the contrast, wait 20 minutes and repeat the scan.

I was given a set of headphones and asked which station I wanted.

“Air One,” which is a Christian radio station that I always listen to in my car.

Mandisa was singing, Overcomer. I thought that was pretty appropriate. “You’re an overcomer!” she belted out.

Even with the radio station blaring there is sufficient noise from the scanner that it sounds like a plumber is banging on metal pipes directly over your head with a metal hammer.

The computerized voice would interrupt the music frequently with the words, “Take a deep breath. Blow it out. Now hold your breath.”

What? Wait. It is supposed to be “Take a deep breath,” followed by “Hold your breath.”

You can’t hold your breath after you exhale, at least not for like a full 30 seconds. Wait a minute.

I pushed the call bell that had been placed in my hand prior to the start of the scan.

“I can’t hold my breath that long after I exhale,” I said. “Hell, I can’t even hold it after I inhale?”

The technician’s voice came through the headphones. “For this test they want you to hold after you exhale. I know it is difficult but just do the best you can. If you have to breathe before it says breathe, just try to make it shallow if possible.”

“Breathe in. Breathe out. Hold your breath.”

I started counting in my head. “One thousand one, one thousand two, one thousand three.” No way was I making it to 40 which was the longest sequence.

I made it through the first half of the test without incident and then she came in to administer the contrast. No sooner had she started the infusion than I had a severe pain in my arm above the IV sight and as I looked over a swelling the size of a golf ball had begun on my arm. I pushed the magic button and then said, “My IV is infiltrated!” Stop the presses.

A few minutes later she had the IV undone and was looking over the area of the infiltration. It hurt, but not terribly. They restarted my IV on the other side and after moving everything to the opposite side of the scanner, we started once again.

The headphones were back on. This time the song was, When the Crazy Kicks In, by Francesca Battiscelli. Yes indeed, that is about right.

The rest of the exam was pretty-much uneventful. I left the scanner thinking I only have 3 months to practice holding my breath on exhalation before we do this again. That’s just peachy.

My lumpy arm from the infiltrated contrast was bandaged with coban and it ached like a toothache.

I arrived home about 30 minutes later and true to form the results were already up on my Healthcare app. How in the world can the radiologist read an exam that takes nearly 2 hours to perform, and has hundreds if not thousands of pictures, have it read in 30 minutes? It read as follows. “The liver is enlarged measuring approximately 19.8 cm. Mild intrahepatic biliary prominence is within normal limits following cholecystectomy. The common bile duct is normal in caliber. No filling defects. Diffuse loss of signal in the liver on opposed phase imaging is consistent with fatty infiltration.” Skip to the end and, “No metastatic disease in the abdomen. Hepatomegaly with fatty infiltration of the liver.”

NED as we call it. No evidence of disease. That would have sufficed. Couldn’t they just say no evidence of disease? Wouldn’t that be better? No not really. If they didn’t put anything else on there I would know they didn’t really read it.

The fatty liver is quite a common finding and I know it was noted on CT several years ago, when I had my gallbladder out. It is also known as NAFLD or non alcoholic fatty liver disease.

Yes, I was still walking around feeling my armpit when no one was looking. I was now alternating that with feeling below my right ribs to see if I could feel my fatty, enlarged, mildly prominent liver.

First set of surveillance scans done. Now on to what to do when your scans have vague, arbitrary findings that would normally be just brushed aside. Since you have a 72% chance of mets within 5 years every time a radiologist reports anything abnormal, which they always do, it will likely require more testing and follow up.

I felt as if I would never again be, “Normal.” Would I always be waiting for the next scan or biopsy to clear up yet another vague imaging finding? Probably!

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