This past weekend, I went to the hospital for a follow up MRI. The procedure itself was uneventful, though going to the hospital on a Saturday afternoon is eerie. No one’s in the elevators or the waiting rooms, and it’s incredibly, even strangely, calm and quiet. It’s not the first time I’ve noticed it, but for some reason I was struck by it this time, more than usual.

This morning, I got a call from a nurse. She apologized for bothering me and assured me her call wasn’t about my health or recent test. I thought at first that it might be a fundraising call.

She told me that there was an “exposure issue” during my MRI. Apparently, when my IV was removed, there was some blood spatter that had gone into someone’s eye. No one reacted at the time, so I’m not sure if it was during the removal or afterwards as things were being moved around and disposed of. However, I was being called to find out if I’d be willing to come into the hospital and have some blood drawn so they could test me for HIV and Hepatitis. While I know that I don’t have these, they obviously can’t just take my word for it.

I immediately said yes. I can’t imagine the stress that that sort of incident causes a health care worker, and while it’s a minor inconvenience for me, if it helps settle another person’s fears (and means that they don’t have to take a bunch of meds for several weeks), then I’m happy to do it.

The nurse was really enthusiastic with her thanks, and it sounded like she sometimes has to make these calls and hears people say no. Which made me think, do people really say no when this question comes up? Besides people who might not be able to go back to the hospital and miss more work, find more childcare, etc., do people really refuse this request?

I’m off to the hospital in the morning. I figure I’ve had enough needles stuck in my arms and enough blood drawn… what’s one more time?

Cancer and uncertainty are a bad combination.

I had my surgery in the summer of 2012. That means that every summer for my “anniversary” I have a CT as part of my annual follow up. So far, that hasn’t meant much more than once a year I have one extra drive to the hospital and some less-than-appetizing stuff to drink prior to a quick scan. The scans have come back normal, and life has continued.

This year, things went a little differently.

In July, I had my CT scan as usual, and a couple of weeks later I had my appointment with my oncologist. My bloodwork all looked normal, but the radiologist who’d reviewed my CT had noticed something that looked off with my liver.

Talking through it with my oncologist, they agreed that the problem area on the scan was probably an area of regeneration: my liver continuing to recover from the effects of the oxaliplatin. However, they wanted to have me get an MRI in three months. The MRI would allow things to be viewed with higher clarity, and the time would allow for comparison against current size.

Enter the first round of waiting and wondering. You try really hard to let the “it’s probably nothing” angel on your shoulder win out over the “what if it is something” devil whispering in your other ear. I’ll confess that I’ve largely been able to keep a positive, non-worrying attitude as time’s passed, but there are moments of mild unease.

So, along comes November and I get an MRI. At my oncologist’s office the following week, I’m informed that more areas on my liver “lit up” with the MRI. The hypothesis is still that these are areas of regeneration and healing, but given my history, a biopsy to be sure is probably the best course of action. Another appointment is made, and I’m scheduled for a liver biopsy in early December.

They first do an ultrasound to make sure that they can see what they need to biopsy. This time around, they couldn’t. The spots were too small and too inconveniently positioned for them to be able to be sure they were biopsying the right spot. So I was sent home without having a need puncture my side.

Now we’re down to fewer options. They could go in surgically, look around, and take a biopsy, but given my history and what this likely is, that seems like overkill. So, after speaking with my oncologist again, we agree to do another MRI in January to see whether or not the spots have changed at all. If they haven’t, then it’s a good indication that indeed, these are areas of regeneration and there’s truly nothing to worry about.

This isn’t a huge deal. However, consider the fact that I went for my annual follow up in July. It’s now almost January and I still don’t have a solid, clear answer of what’s going on. Not that I want it to be serious, but at least when I needed surgery, there was conclusive evidence to go on.

This is one of several posts that I began writing while the events were occurring, but never posted. They’ve been on my mind lately, so I’ve gone back and finished them.

I don’t know if it’s this way for everyone who’s been through a serious illness, but once I stopped dealing with treatment and recovery day to day, it started to fade into the past pretty quickly.

This came to mind yesterday at an appointment with my oncologist. While I’ve been seeing her every three months, this was my big annual appointment. I’d had a CT scan a couple of weeks ago and we were meeting to talk through my status.

In talking through my CT and blood work, there was a question that arose about how long it had been since my surgery (it’s been two years), and I could not remember. I had one of those moments where I stammered “I think 3 years…? No, wait… maybe two…?”

She looked at the computer (the exact timing had slipped her mind, too), and we were set straight. But, it was pleasantly odd to think that this thing that had consumed so much of my life for over a year was starting to fade a little.

This is one of several posts that I began writing while the events were occurring, but never posted. They’ve been on my mind lately, so I’ve gone back and finished them.

For the record, that’s the second Silence of the Lambs reference in the last year…

I had my one year follow up tests back in July: a colonoscopy and a CT scan. And, at the very end of July, I had an appointment to review all of the results with my oncologist. I had more blood drawn the morning of the appointment, but we talked through everything else.

The good news was that my CT scan was clear (my spleen was slightly enlarged, but not dangerously so, and that’s somewhat to be expected since chemo drugs can affect the liver slightly, which makes the spleen work harder) and my colonoscopy was clear. My oncologist gave me a “clean” bill of health (as much as you can have after finishing chemotherapy) and confirmed that I can start coming in every three months for monitoring. And, I could get my port out. All good things.

Then my phone rang the next morning and things got a little more complicated.

It was my oncologist, telling me that there were a few things about my blood work that she wanted to go over with me. You see, any time I go in and meet with her, they draw some blood and do a basic work up, but not all of the results always come back before I leave the office. The previous day, most of them were done in time for our meeting, but a few were still yet to come.

The good news was that my CEA level (the test that’s supposed to be a marker for colon cancer) was a 1.0 (normal is less than 5), so that was a good result. I was still somewhat anemic, and my white counts and platelets were a little low, but none of that was concerning, and they were trending up – just not in the normal range quite yet. Interestingly, my iron counts were very low, and I was told to start taking an iron supplement – an easy adjustment.

Based on some of the test results, they’d run some additional tests for liver function, and those were far off from where they should be. My oncologist said that it was likely that it was related to the chemo, but since it was now almost August and I’d finished chemo in mid-February, she couldn’t comfortably/definitively say that that was the cause. As a result, she wanted me to go see one of the liver specialists (a hepatologist) to have him do a workup/diagnosis.

Appointments were made, and off I went to yet another doctor.

What followed was a series of appointments and tests, all to hopefully prove that everything was fine. There’s a stange cognitive dissonance that happens in this situation. Over the course of weeks, my mind had some combination of the following thoughts:

• Am I going to get sick again?
• No, they said that it was probably nothing.
• Great… now I need to have another appointment/test/thing.
• I guess I need to take another day off of work (as does my wife since I’m not allowed to drive after that test).
• What if I get sick again…?
• This is such a pain in the ass… since it’s probably nothing.

I went to my first appointment with the hepatologist, which felt like a waste of time. As a patient, initial consultations feel like they’re only necessary because the doctors don’t talk to each other. I went there so that he could review the case with me and tell me what tests needed to happen. Great. Thanks. We couldn’t have done this over the phone…?

Ultimately, he said that I probably had Nodular Regenerative Hyperplasia (http://www.livertox.nih.gov/Phenotypes_nodular.html) caused by the Oxaliplatin. It’s not a super-common side effect of the drug, but it was one that he’d seen often enough that he wasn’t surprised by the correlation. However, just to be safe and to rule out anything worse, he wanted me to get a liver ultrasound, a liver biopsy, a fibroscan, and an endoscopy.

I had the ultrasound and biopsy first, about a week later. For something that only takes a few minutes, it takes the whole day. I showed up at the hospital in the morning, checked in, and waited. After getting changed, I first got brought into an ultrasound room. For a few minutes, I got to experience what pregnant women experience all the time: some gel got squirted on my side, and an ultrasound probe was rubbed around. They took some pictures, and then I laid down on the gurney and waited again.

Eventually, I was brought into a small procedure room. They use an ultrasound again to guide where the biopsy is being taken from. So, more gel, more probe against the side. I was given some drugs which made me very sleepy, but did remain awake. That was a little weird, since there’s someone taking a large, long needle and puncturing you in the side with it. However, it wasn’t that painful in the moment. The procedure itself took less than half an hour.

They make you wait about three hours after the procedure in recovery, to make sure that the drugs are wearing off and that there’s no internal bleeding, and then I was sent home. I was a little sore the next day, but that was about it.

I did the Fibroscan a week later. It was fast and easy, but required yet another visit to the hepatologist’s office – the machine is just sort of shoved in the corner. I didn’t have to get undressed. I just had to pull up my shirt and they held a probe against my side, very much like an ultrasound. The main difference is that when the probe touches you, it feels like someone’s tapping or thumping on your side. But it’s not painful or invasive in any way.

A couple of weeks after that I had the endoscopy. Process-wise, it’s a lot like a colonoscopy, except the probe is going down your throat. And as a patient, it’s a very similar experience: go in, change into a johnny, get an IV put in, and then some drugs get pumped in that make you go to sleep and forget everything, and then wake up in recovery.

After going through all of these tests, it was confirmed that indeed, I’ve got NRH. The treatment? Stop taking oxaliplatin. Since my chemo ended six months ago, that’s not a problem.

The good news is that the liver tends to heal over time, so this should go away. I need to keep having my liver levels tested every three months to make sure that they’re trending up, and as long as they do, there’s no need for further regular tests.

However, I also need to have a follow up endoscopy in a year. They did find one varix (https://en.wikipedia.org/wiki/Esophageal_varices) that they want to monitor and make sure it doesn’t get any worse.

While I’m glad that everything’s “fine”, the process of proving that everything is fine was wearing and sometimes felt overly complicated. “It’s probably nothing” is meant, I think, to be comforting, but the unknown is stressful even if the odds are good.

It’s now been almost a year since my surgery, and almost six months since I finished chemotherapy (I can’t believe it’s been that long already), so my oncologist has ordered some follow-up tests. I had a colonoscopy this past Monday, and I have a CT scan this weekend. Then, I meet with my oncologist at the end of the month, and if all of the results are good, then we can schedule my port to come out, and the so-called “monitoring phase” can begin, at which point I’ll go in quarterly for blood tests and check-ins.

If you’ve never had a colonoscopy, go read Dave Barry’s column from 2009. It’s hysterical, and it’s actually a pretty good description of what happens. The procedure itself is easy, since you’re basically unconscious for the whole thing. The prep, as they say, is the worst part. However, even that isn’t terrible. You have to drink a bunch of stuff and then go to the bathroom a lot. It’s uncomfortable, but it’s not horrible. CT scans, on the other hand, are a cakewalk. You can’t eat or drink for a few hours before hand, but otherwise, you just lay on a table that moves in and out of a large donut-shaped scanner. The whole thing takes about 15 minutes and then you’re done.

I’ve been worried about these tests. Based on all the statistics of cases similar to mine, without the chemotherapy, the rate of recurrence was 30%. With the chemo, it’s 15%. While it’s great that it’s cut in half, 15% is still much too high a number for me to feel completely “safe”, regardless of how optimistic my doctors have been. Conversely, I’d take an 85% bet almost any day, but that doesn’t help me feel much better. I’ve been trying not to let it get to me too much, but I’ve been a little bit on edge for the last couple of weeks, and I’ve been having a lot of discomfiting stress dreams.

My colonoscopy went fine. The doctor didn’t see anything wrong: no polyps, no tumors. He took some biopsies at the site where things were spliced back together after the surgery, which I’m told is standard procedure, and I’ll get the results of those in a couple of days, but based on what he saw, there’s no reason to think that those biopsies will be cancerous.

I’m actually more concerned about my CT scan. According to my oncologist, it’s less common for colon cancer to recur in the colon and more common for it to spread somewhere else. While I haven’t had any symptoms that would lead me to believe that there’s something wrong, I’m not exactly feeling like the odds have been in my favor lately when it comes to my health.

So… fingers crossed and all that. I’ll know more at the end of the month.

Photo Credit

Photo courtesy of Dave Barry and the Miami Herald.

Last weekend was my niece’s bat mitzvah, and on the same weekend in 2012 we celebrated my nephew’s bar mitzvah. Last year, after the service and the party, I went back to my aunt and uncle’s house and, since everyone was in from out of town, told half of my family that I had cancer and was going to need surgery.

A lot can happen in a year.

I knew that I’d been ignoring this blog, but I was surprised to see when I went back and looked that the last time I posted was in March. I’d intentionally not thought much about posting, partially because there wasn’t a lot of news or big events once my treatment stopped, and mostly because I needed to feel like my life could return to being about other things.

That said, here’s a brief update:

Overall, I feel good. I still have some tingling and numbness in my hands and feet from the neuropathy, but I’m dealing with it. It’s somewhat better in my hands, though I can still feel it there, and it’s still reasonably strong in my feet. My oncologist has told me more than once that it could take somewhere between 6-12 months for it to fade completely, so for now I’m just sticking with it. Besides that, any and all other side effects are completely gone, and my energy and general “how I feel” day to day are normal.

My last appointment with my oncologist was at the beginning of May, and everything looked good. My general blood work (red/white/platelet counts) were all trending back up, and my CEA level was 1.2, which is also good (below 5 is normal).

Later this month I have some follow up tests: a CT scan and a colonoscopy. Then, I’ll meet with my oncologist, and if everything looks good, then we get to schedule the removal of my port.

It’s hard to describe what it’s been like to get back to normal. Since I was working during my treatment and, with the exception of the first few days of each cycle, I wasn’t incapacitated, there’s a lot of day-to-day life that didn’t change. Plus, the neuropathy and still having my port in (and the requisite trips to the hospital every six weeks to have it flushed) continue to remind me that things aren’t “over” yet. It took me a good two to three months before I felt like I could really breathe again (figuratively speaking).

So now, here I am holding my breath again, just trying to get past this month’s tests and keeping my fingers crossed for good news. By the time I see my oncologist at the end of the month, it’ll be just over a year from when I had surgery to take out the tumor in my colon. And as we’ve established…

A lot can happen in a year.