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.

In February, 2012, several months before I was diagnosed with colon cancer, I was pulled over by a police officer for running a red light at an intersection a few miles from my home. At the time, I was very surprised, because I was sure that I hadn’t run the light. However, I didn’t argue with the officer at the scene (I’ve never thought that arguing with an officer is very productive), and I filed the paperwork to contest the ticket and request a hearing.

My first hearing date was not only scheduled for a date that was during my chemotherapy cycle, but it was actually scheduled for a chemo infusion day. When I got the notice, I called the court clerk’s office and asked what I could do to reschedule. They informed me that I needed a letter from my doctor, and that once they received it they’d be happy to reschedule. They also told me that if I was going through a long-term treatment, my doctor could specify the dates and they’d schedule it for a time when my treatment was completely over.

I asked my doctor to write the letter; she did; and the date was rescheduled.

Fast forward to today, and I’m sitting outside the courtroom waiting for my name to be called.

I didn’t have a lot that I planned to say, but I mainly intended to tell the magistrate that I felt very strongly that there was a mistake made and that I wasn’t guilty of running the light; that I had a pretty clean driving record and on the day in question I was on my way to get a haircut and was hardly in a rush. I also planned to point out that about 6 years ago I’d been pulled over for running a light, and I’d paid that ticket because I was in the wrong (I was stupid and tried to push through a yellow light that I had no business going through), and that since then I’ve tried to be a lot more careful.

I walked into the courtroom and sat down. The police officer read off the details of the alleged infraction, and then the magistrate, shuffling through my paperwork, which included the postponement request from my doctor, asked me what I had to say.

I had barely gotten 10 words of my prepared “speech” out of my mouth when he said, “How about if we just let you go on this one?”

I said that sounded great to me, and as he was filling out the relevant form he asked, “How are you feeling?”

I smiled and said that I was feeling well, thanks. “That’s what we like to hear,” he said. “Sometimes, traffic tickets just don’t seem that important, right?”

“Right,” I said. “Thank you very much.”

So, while I’m not recommending that anyone get cancer as a way of beating a traffic ticket, it certainly worked for me.

I’ve always depended on the kindness of strangers…

For about the last two years, my wife and I have been trying to have a baby. In December of 2011, a small white stick told us that she was pregnant, and we were ecstatic. We started reading books, making plans, talking a lot… all of the things you do the first time “you’re” pregnant. In January of 2012, at a routine doctor’s appointment to see the first ultrasound, we found out that the fetus had stopped developing very early and that there was no heartbeat. We’d had a miscarriage.

We both knew that this wasn’t our fault, and that a pregnancy terminating this early in the first trimester probably meant that there was something wrong with the fetus. We knew that intellectually, but when you’re in the midst of it, the intellectual part doesn’t seem as relevant. We were heartbroken. It was unfair. We started over.¹

And then I got diagnosed with a malignant tumor in June.

Right around the time that I had one of my first meetings with a surgeon to talk about the surgery and my prognosis, another small white stick told us that my wife was pregnant again. I can’t tell you how relieved I felt. I had been worried that having and recovering from my surgery was going to make it hard to try to get pregnant again, and that it would get in the way of our plans. It was a huge relief to think that it definitely wasn’t going to be a problem.

And then, another miscarriage, right after I got out of the hospital.

Because I was recovering from surgery and home for less than a week, my wife went by herself to the first ultrasound at the OB’s office. She called me crying from the hospital, because the ultrasound showed the same thing as the first pregnancy: no heartbeat; the fetus has stopped developing early. I can’t even express how helpless I felt. I was supposed to be there. I knew that I couldn’t make everything okay, or even better, but I should have been there. Except that I couldn’t be there, because at the time I couldn’t really stand up for more than ten minutes.

My wife chose to have a D&C, since the doctor explained that they’d be able to test the fetus to see if they could determine a cause for the miscarraige. Despite hearing all sorts of stories about how people go through multiple miscarraiges and then having a healthy child, we wanted to know if there was something that would predict more problems in the future.

When we got the test results back, we found out that there was a chromosomal anomaly in the fetus. Nothing that predicted potential future problems, but exactly the kind of serious defect that causes an early first trimester miscarraige. And again, while that was helpful to know intellectually, it didn’t help make anything better.

And then things got complicated.

A week or so into my recovery, I got the news that my doctor was recommending a course of chemotherapy and that I needed to meet with an oncologist. Immediately, we wondered whether this was going to have an impact on our ability to or likelihood of getting pregnant and having a healthy child. When we met with the oncolgist, it was one of the first questions we asked.

We were told that it was generally not deemed safe to try to get pregnant naturally while undergoing chemotherapy, and it’s not advised for up to a year to eighteen months afterward.

So, now, on top of dealing with cancer and chemotherapy, we make an appointment to meet with a fertility specialist. He tells us that our case is very interesting… thanks, I guess? Most people visiting a fertility doctor are doing so because they have trouble getting pregnant, whereas we were just having trouble staying pregnant and were now being told that we shouldn’t try to get pregnant the old fashioned way.

At the suggestion of my oncologist and the fertility doctor, I went to a cryobank before I started chemo and put some sperm on ice. It’s not worth going into details, but it was definitely an odd experience. And, can someone explain to me why every person working at the cryobank was female?

Once we (well, mostly my wife) had gone through the initial tests and assessments that the fertility clinic required, we were presented with two options: IUI (intrauterine insemination, aka artifical insemination) and IVF (in vitro fertilization).

IVF generally has a higher rate of success, but IUI is less invasive. After talking with the doctor, we decided to try up to two rounds of IUI before considering IVF. So, over the course of a few months in the late fall/early winter, that’s what we did.

Unfortunately, neither round was successful. Now we were left with the decision of whether to proceed with IVF. It was something that my wife had previously ruled out when we had discussed hypotheticals, but based on how far we’d come, was willing to try.

And so, for the last several weeks, my wife’s been injecting herself with various hormones and going to the doctor’s office for ultrasounds and bloodwork. This past Saturday was “egg retrieval” day and sometime in the next few days we’ll have a couple of embryos to transfer. Then, we wait and see what happens.

Some people have asked me if we’re excited. At this point, I think we’re just cautiously optimistic and taking things one step at a time. There’s a part of me that’s also just scared – scared that the IVF is going to be successful, but that it’ll end in another miscarriage. And there’s a completely irrational part of me that feels guilty, like if I hadn’t gotten cancer, this wouldn’t be happening, as if that were something that I could have controlled (I suppose I could have eaten more kale, but who knows if that would have worked).

I’m also incredibly proud of my wife for dealing with this whole process. While I’ve gone to appointments, helped organize the large box of medication and supplies shipped from the pharmacy, and generally tried to be helpful, this is something that is primarily affecting her, and she’s been handling it all.

There’s so many things that people are scared of when the word “cancer” gets raised, but I’ve learned that it complicates your life in ways that you couldn’t even imagine. I suppose if this is all successful, then we’ll have quite a story to tell our kid when they’re older.

¹Side note: once we started telling people about our miscarriages (which took a little while), I was astounded at how many people said something like “I/my wife/my sister/my friend went through the same thing.” While I knew that miscarriages were common, it’s something that no one seems to talk about (granted, it’s very personal), and I’m not sure that’s a good thing. It’s something that’s often kept in the dark, and that everyone goes through mostly alone. I hold out hope that that changes eventually, because I think it would ease the pain for a lot of people.

It’s been about a week and a half since my last chemotherapy treatment, and for the most part, many of the day to day side effects are starting to get better. My cold sensitivity hasn’t completely faded, but I have been able to eat ice cream over the last few days, which is better than it’s been in quite a while. My nose is also finally starting to not  run all the time, which is a big relief.

The one thing that’s still sticking with me is the general peripheral neuropathy that didn’t start until my last couple of treatments. My fingers and feet are pretty much tingling constantly, and it’s a bit disconcerting. In my fingers, it’s mostly just my fingertips, and it’s not getting in the way of much, but it feels uncomfortable all the time.

In my feet, it’s the whole bottom of my feet and toes that feel like they’re tingling all the time. It means that they always feel cold, even when they’re not; and the weirdest part is that the normal tactile feedback that you get when your feet are in contact with the floor isn’t there. So, every once in a while, I feel a little unsteady on my feet. So far, it hasn’t been a big problem, but it’s awkward.

Given that this was the one side effect that all of my doctors and nurses kept asking about (since it can have some permanent effects if it gets too strong), I’m trying not to let myself get too worried and just give myself some more time for things to fade. However, I did call my doctor late last week and will hopefully talk with her tomorrow. Since this is a new side effect for me, I’m just not sure what to expect in terms of how long it’ll take to fade. I’m hoping the answer is “about a week”. That’d be good.

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.