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.

Yesterday was my last chemo treatment. The strange thing about yesterday was that with everything starting to feel so regular and predictable from round to round, yesterday held some surprises.

My appointment was for 11am, and we ended up arriving a little after 10:30. Even a few days after winter storm Nemo, traffic going into Boston was still somewhat unpredictable. Also because of the storm, the office was really crowded and busy. Thankfully, we got taken pretty quickly, and went back to the treatment area.

As I wrote the other day, one of the side effects that hasn’t really been a problem for me, but that I’ve been warned about multiple times and they ask about every time I see a doctor or nurse, is general peripheral neuropathy. It’s a tingling (usually) in the hands and feet that can get bad enough to interfere with your day-to-day activities (being unsteady on your feet, having trouble with fine motor skills like buttoning buttons, etc.).

Until about two weeks ago, this was a symptom that I was lucky enough not to be experiencing. Then, that changed and I was feeling it in my fingers and feet all the time. It wasn’t nearly bad enough to be interfering with anything, but it was just a low level, always there sensation. It’s hard to describe, and really strange to feel. It bothered me more in my feet – they always felt like they were cold and tingling because of it.

The intensity of what I was feeling didn’t raise any red flags with my oncologist or nurse in terms of medication dosage, especially since it was my last treatment. Plus, we’d already reduced the dosage slightly when my platelets got low. So, after my blood counts were checked and looked good, I got hooked up and we moved forward with my last day.

Initially, everything was going okay and feeling normal. I even made some crack to my nurse that things felt kind of anti-climactic. I got my pre-meds infused and then they hung the main chemo drugs: the Leucovorin and Oxalyplatin. I was eating my lunch and just sitting in the chair. A few minutes went by, and I just started to feel like something was wrong. My hands were tingling a lot and feeling almost painful, and my stomach was roiling a bit. I had to go to the bathroom, so I decided to do that first, and then if I was still feeling the same in another 5 minutes, I’d grab my nurse.

While I was in the bathroom, I was feeling hot, and after a few minutes, I had to throw up. Thankfully I managed to use a trash can and not make a huge mess. When I got up to wash my hands, my palms were bright red, and when I looked in the mirror, my face and neck were red and splotchy.

My first reaction was that something just wasn’t right. I knew that they’d cross-checked the labels on all of my meds against my name, birthdate, and patient number, but I was wondering if it was possible that a bag had been mis-labeled in the lab before the meds got sent up. I just felt totally “wrong”, and given how predictable each treatment day is, that had me very concerned. I wasn’t having trouble breathing or any chest pains, so I wasn’t scared, exactly, but I knew something wasn’t right.

On my way back to my chair, I stopped at the nurses’ desk. My nurse was with another patient, but one of the other ones asked me what I needed. I started to tell them that I’d thrown up in the bathroom trash and they might want to have someone change the bag, and also request that my nurse come over soon, but before I could get the whole sentence out, two nurses looked up at me, asked me if I was feeling okay, and started to escort me back to my seat. They stopped the infusion pumps, called my nurse over, and paged my oncologist.

One of the things I was then reminded about was that some people can have an allergic type reaction to Oxalyplatin, and that was presumably what was happening here. They immediately gave me some benadryl via IV and a small additional dose of dexamethasone (a steroid).

By that time, my oncologist arrived and confirmed that this looked like an allergic reaction, and that they wouldn’t be giving me any more of the Oxalyplatin. She said that it was more typical to see people have these reactions around treatment five or six, but that it wasn’t unusual to see it later on… side effects can be cumulative, etc. etc.

At this point, the whole situation just felt weird. There were two nurses and my oncologist who were just standing around and looking at me. I had a blood pressure cuff on my arm and they took my pressure every 15 minutes or so. As time went by, I started to feel better and look better. They waited about 45 minutes total, and then they continued my infusion (just the Leucovorin).

I will say, the scary part wasn’t so much me feeling “off” or seeing my red face in the mirror. It was the swarm of nurses and doctors once they saw me. It was comforting that everyone reacted so quickly, but it’s overwhelming when that many people swarm around you talking and doing things so quickly. I know that my wife was freaked out, but she kept it together.

The other thing is that IV benadryl works FAST. I immediately felt a little lightheaded and very tired. Even as the doctor and nurses were standing around watching me, I had to close my eyes. Once they re-started the infusion, I pretty much fell asleep for the next couple of hours.

By the time I woke up, I felt pretty normal, looked normal (from what everyone told me) and have since then. My nurse called me this afternoon to check in and I was able to tell her that I hadn’t had any other allergy-type symptoms and that I felt normal all day.

So, a little bit of excitement for my last treatment, but ultimately everything worked out fine. I guess that’s what I get for thinking that my last day was going to be anticlimactic…

Tomorrow is my last chemo treatment: twelve out of twelve. It’s strange to think that I started this back in September, and that time has gone by as quickly as it has.

I’m definitely looking forward to being done. I’ve got one more crappy weekend to get through, and then hopefully it’s all improvements from here: side effects fading and feeling normal again. I figure that it’ll take about 4-6 weeks for that to happen, but the worst part will be over after this weekend.

In the past couple of weeks, I have begun to feel the general peripheral neuropathy that the doctors and nurses warned me about: tingling in my hands (fingers, mostly) and feet, even when I’m not cold. It’s odd to say the least. It’s not so bad that it’s getting in the way of my daily functioning: I can zip zippers, button buttons, and type without a problem; I’m not tripping because my feet are that numb. It’s just a little uncomfortable. I’m told that this will fade once my treatment’s over, but it’s one of the things that they ask about every time I go in, and watch carefully.

I figured that I was done experiencing anything “new” related to my treatments, but apparently things continue to develop even into the last couple of weeks… fun.

Anyway… just one more to go. Victory.

I had my second-to-last chemo treatment this past Wednesday. I’ve pretty much had all of the energy sapped out of me since then, so this is the first opportunity I’ve had to write down my thoughts on the day.

I had the earliest appointment yet at the hospital: an 8am appointment with the oncologist followed by a 9am infusion appointment. That meant I needed to be at the hospital at 7:30 so that they could do a blood draw first. We left ourselves plenty of time to get to the hospital, especially considering the early hour, but I forgot to factor in the fact that it was raining, which apparently meant that I should have left my house around 2am. Driving in and around Boston is all of the joy and wonder that you’ve heard it is, trust me.

I ended up arriving around 8:15. Once again, here’s a tip… if you’re a few minutes late, don’t panic. You’re the one with cancer, and they’re not going to turn you away. My doctor was running a little behind, anyway, so it all worked out.

My conversation with my oncologist was fairly brief. Given that this was the last time I’d be seeing her during treatment, we mostly talked about logistics once my chemo is done: I’ll go in about 4 weeks after my last treatment for a check-in appointment; then I’ll go in about six weeks after that. Following those, I’ll start going in once every 10-12 weeks for blood work, have a CAT scan once a year, and we’ll keep our fingers crossed that nothing pops up.

I’ll also need a colonoscopy sometime around June or July. They like to do one approximately one year from when I was first diagnosed. After that, I’ll need to get one every 2-3 years, depending on the gastroenterologist’s recommendation.

My port will stay in for 2-3 months. Basically, it’s a lot easier to take out than to put in, so they like to make sure I’ve gone through my first couple of post-treatment visits before I get it taken out.

After waiting an extra week for my 10th treatment, my oncologist had also reduced the dosage on my chemo drugs that week. It meant that the intensity of my side effects was a little more reduced during my last round, and the meds will stay at that lower dosage for my last two treatments. Hopefully that means that things will continue to be a little easier as I finish things out.

That said, the last few days definitely kicked my ass – especially fatigue-wise. After my treatment on Wednesday, I crashed early in the evening and slept through the night. On Thursday, I fell asleep around 8:30pm and didn’t wake up until 8am the next morning. I slept late on both Saturday and Sunday; and I’m just now (on Sunday evening) feeling like I have a little bit of energy.

Thankfully, I don’t care at all about the Superbowl, so I don’t have to waste any energy cheering.

One more to go. Still not fun while it’s happening, but I can definitely get through one more.

It snowed in Boston last night and this morning, so the drive to the hospital was not much fun. I left my house at 7am and arrived at the hospital at 9:20. I figured it would take about that long, and therefore I was on time for my 10am infusion appointment (which means I’m supposed to get there around 9:15). The drive was slow, but uneventful; people were handling the snow well.

Boston’s also declared a state of emergency a couple of weeks ago because of high flu infection rates. So things at the hospital were a little different. Walking into the waiting room, everyone had a hot pink sticker on their shirt that declared that they’d been “flu screened”, which essentially means they were asked how they were feeling and whether they’d been around anyone else with symptoms.

There are a few holes in the system, though… when I arrived and checked in, no one asked me any flu screening questions. Instead of my blood being drawn by the phlebotomist, I was sent directly back to the treatment area and had my blood drawn from my port. My nurse asked if I’d been screened, and I said no. She (loosely) asked me the screening questions and then said, “I’m not sure if I need to get to a sticker, let me check”; and that was the last I heard of it, and there was no sticker on my shirt for the rest of the day. For all anyone knew, I was a highly contagious, dangerous person. Especially with my scary face mask. Bwa-ha-ha.

What with the snow storm, things were running a little behind schedule, especially at the lab, so I didn’t actually start my infusions until just after 11am, since we were waiting for my test results. Apparently the extra week off was successful, as my platelet count was back up to 155. My white blood cell count was a little low (especially my neutrophil count), but still just above the cutoff line and so I was deemed safe to treat. My medications were also adjusted a bit, so I’m getting slightly less Oxalyplatin and Leucovorin than in previous weeks. Again… all totally normal, so my doctor and nurse tell me, and nothing to be concerned about.

Once I was hooked up, everything proceeded as usual and I was done in about four hours. Now that it’s a few hours later, I’m still really wiped out, which is normal for an evening following treatment, but interestingly some of the immediate side effects aren’t as bad. My nausea isn’t nearly as bad, and the cold sensitivity is much better than usual. I’ve been drinking room temperature water all evening, and normally on the first couple of days after treatment I need to have warm/hot liquids only. I’m not sure if it’s the extra time my body had to recover, or the slightly reduced dosage, but here’s hoping that things are a little easier this round.

Two more treatments, and then this is all over. Light at the end of the tunnel, here I come.

Today was supposed to be my 10th chemo treatment. I got to the hospital as usual in the morning, and they drew my blood to get the standard panel of tests. I waited about 40 minutes and then was called back to the treatment area.

My oncologist and chemo nurse both informed me that my blood counts were too low for me to be treated today. A normal platelet count is 150 (150,000), and mine was at 67. Once you go below 75, they consider it too risky to do additional treatment. What they’re ultimately worried about is making my count so low that I’d start spontaneously bleeding (that apparently happens when your platelet count gets down to around 25).

This was not a shock, nor was it upsetting. My counts have been trending downwards for the past 3-4 treatments; last time it was at 87. I’d been warned by my doctor and nurse that this could happen, and that it’s totally normal. At this point, I need to go back in a week, and by then my counts will probably have rebounded enough for them to treat me. They’ll also probably adjust my medication dosage slightly.

It’ll be interesting to see how much the day-to-day side effects that I’m dealing with (like the cold sensitivity) fade over the next week. Usually they fade some over my two week cycle, but they never completely go away. So, this should help give me a sense of timing to really recover and feel back to normal once my treatment’s completely over.

Plus, I might be able to have a cold drink this week, which would be indescribably sublime.

I had my ninth  (out of twelve) chemo treatment on Wednesday. It was pretty standard – no big news or events to report. Things continue to be pretty routine.

I did have my first meeting with my new oncologist yesterday; prior to this, I’d just met her long enough to shake hands. We went over my case history, how I’m reacting to treatment, and I asked a few questions to get some clarification about the schedule of things once my treatments are over in February.

Once my chemo’s done, I go into a monitoring routine, which ultimately lasts five years. For the first few years, I come in four times a year. At those appointments, they’ll take some blood and monitor a couple of values that are markers for tumors/cancer and check in on how I’m feeling. After the first 2-3 years, I’ll switch to coming in twice a year instead of four times.

I’ll have a CT scan annually, and at least for the first year or two, will probably have a colonoscopy annually. After that, I’ll need to get one roughly every three years.

If I hit five years with no recurrences of any kind, then they consider me cured, and I’m really done.

The other thing that she mentioned that was a little different from what I’d heard before was about my port. She said that they usually like to leave it in for 4-6 months after my treatment is done, just in case any immediate post-op tests show that we need to take additional treatment action. I’d previously heard that it’d come out about a month after my treatment is over, so I’ll be asking about this again as my chemo ends and I have the first one or two follow up visits.

The only other semi-interesting part of this treatment was that I finally decided to take some action to make one part of the process a little more comfortable. I have a pretty hairy chest, and that means that every time I get disconnected from my port, there’s the whole adhesive + chest hair = an undesired, free, poorly-done waxing on one four-inch square of my chest.

So, armed with a shaver, I took my fate into my own hands and shaved part of my chest so that it’ll hopefully be more comfortable as I’m moving around (no pulling of hair as I twist and turn) and when the needle ultimately gets removed on Friday. We’ll see how it goes. In the meantime, I also got to take a pitcure of what my port looks like, for anyone who’s interested (the pic at the top of this post).

Other than that, things were pretty normal. My blood counts continue to drop slightly. My platelets are down to 87 – normal is 150, and my white blood cell counts are also low, so my oncologist warned me to keep Purell nearby and not get any head wounds (which translated into no skiing or skateboarding, but it sounded weird at first).

I actually slept through most of my infusions. For some reason I hadn’t slept very well the night before, and we had to be at the hospital at 8:15, so I was tired. Add a couple of warm blankets that they have available and I dozed off for most of the time I was there.

75% done. Only three more to go…

Sadly (or perhaps happily), dear readers, I have nothing exciting to share with you about my latest chemo treatment this past Wednesday. It was number 8 out of 12, so I’m now 2/3 of the way through. One more in December; two more in January; and one more in February, and then I’m done. I’m definitely seeing the light at the end of the tunnel, but I wish it was over already.

Overall, things went pretty smoothly this time around. My blood counts were “borderline” enough that my nurse had to check with the oncologist as to whether or not it was okay to proceed (my platelets continued to trend downward – down to 92 this time), but once we got the okay everything went pretty normally. I was done in a little over four hours, which is normal, and headed home.

I slept a lot this past weekend. Despite this being my eighth treatment, I still feel like I’m trying to figure out what combination of medication works best for me. I find that the more I sleep, the better I feel, even on my bad days. And my body pretty much wants to sleep, so it’s not hard to do.

Case in point: Friday I got disconnected from my portable pump at 2pm. I signed off from work around 4pm and napped between 6-8pm. Then, I went to bed around 10:30 and slept until after 1pm on Saturday. Saturday night I went to bed between 10-11 and slept until around noon on Sunday.

So, not a very productive weekend, but I felt better, and on Sunday had much less nausea and discomfort than I normally have.

Four more to go…