I picked up a package of Breathe Right strips last night. Even before I started chemo, I was a snorer, but it’s gotten worse in the last few weeks.

My nose starts running a lot, especially when I move from warm to cold or vice versa, and I feel like I’ve been wiping or blowing it constantly for about the last two months. As a result, the inside of my nose is always irritated, and so blowing my nose is a mixture of mucus and blood (sorry for the visual). When I wake up in the morning, one of my first tasks is coughing up a mixture of phlegm and blood that’s accumulated in my throat during the night (again, lovely visual, I know).

In the last few weeks especially, despite how much I blow my nose before bed, I end up not being able to breathe through it during the night, and I wake up in the middle of the night and/or in the morning with my mouth feeling like sandpaper in the desert. It’s really uncomfortable.

So, last night on the way home, I went into a Walgreens to pick up some Breathe Right strips, thinking that they might help the situation. Did you know that there are now SIX different types of Breathe Right strips on the market? Ruling out the “Kids” and “Menthol” versions, I was left to choose between Original, Clear, Extra, and Advanced. There’s almost nothing on the boxes to tell you why “Advanced” might be better than “Extra” (you’d think there’d be some kind of chart, but there’s not), and so I was standing in the aisle trying to determine what was different about these products. Even on the company’s web site, it’s not easy to tell what makes one “model” better than the others.

I ended up choosing the “Advanced”. Seemed like it’d be as good as “Extra” and it was fifty cents cheaper.

Bottom line, they worked very well and I had a comfortable night’s sleep. I didn’t wake up during the night, and I woke up in the morning with my mouth closed. So, score one for Breathe Right, even if they do have a totally confusing product line.

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.

After being pushed back a week because of my low platelet count, my next treatment is now scheduled for tomorrow. It’s been really nice to have an extra “good” week off, and it’s been interesting to see how my day-to-day side effects have changed over the last week. In a way, it was a sneak peek at how quickly things might get back to normal once my final treatment is done in February.

So, I can report that:

• The cold sensitivity brought on by the Oxalyplatin is much better. It’s not completely gone yet, but I’ve been able to drink things that are cool (not ice cold yet), which is wonderful progress. I also had frozen yogurt the last two nights, and enjoyed it without any real twinges in my mouth and throat.
• With an extra week off of meds, some of the lingering cuts or scratches on my hands (which had healed, but hadn’t faded) are either completely faded or much improved. Plus, one of the small incisions from my surgery which still hadn’t completely healed is now pretty much completely healed over.
• The discoloration on my fingers and toes has not completely faded away, but it’s much lighter than it has been.
• My nose has not been constantly running (a side effect of the 5FU) and as such I haven’t had a constant bad taste in my mouth, and therefore I haven’t been constantly chewing gum all day, every day.

All in all, it’s been a positive week, and it’s been very heartening to see some of the day-to-day things start to get better. My oncologist has been saying that these side effects would fade once my treatment is over, but there’s always been a nagging “but what if something’s more permanent” worry in the back of my mind. Seeing them actually improve combats a lot of those concerns.

Treatment #10 tomorrow, and then only two more left after that.

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’ve written before about one of the most frustrating day-to-day side effects that I’ve experienced during my treatment: the cold sensitivity brought on by oxalyplatin. Having started my treatment in September, and what with it being a relatively mild fall and early winter, the primary way I experienced this was by reaching into the fridge or drinking something that was too cold.

Well, the past couple of weeks have been more like a Boston winter normally is: some snow, and lots of windy cold. Added to my list for this weekend: buy warmer gloves. Even though I have warm winter gloves, they’re clearly not warm enough. For the past week, whenever I came home, I’d have to run my hands under warm water for a few minutes so that they’d stop tingling.

You see, I take the train into Boston every day, and I leave my car at a parking lot at the commuter rail station. By the time I get back in the evening and get into the car, it’s very cold, and it takes a few minutes to warm up. During that 7-10 minutes of my drive home before the heat really kicks in, my hands and feet start tingling, even with warm socks and warm gloves on. My feet tend to warm up by the time I get home, but my hands are often still tingling. So, clearly, I need warmer gloves.

The other thing I’ve started using that’s getting me all sorts of strange looks is this facemask. It covers my mouth, nose, and ears, and is generally very comfortable and very effective. In the cold weather, I’ve found that my nose goes tingly and numb very quickly, and my throat is even sensitive to breathing in frigid air. However, the mask basically makes me look like a terrorist and/or serial killer.

Spring is just around the corner… right?

When I go into work on a Monday following a treatment, I have a few people who ask me how my weekend went. They’re not asking in a “did you do anything cool this weekend” way; they know that the weekend following a treatment are my toughest days. It’s hard to explain what that weekend is like: for the most part I just feel crappy, somewhat nauseous, and completely sapped of any energy whatsoever.

I was familiar with the idea of “fatigue” as a medical term – something that means more than just “tired” – but I didn’t fully appreciate what it meant until I started chemo. Allow me to explain by outlining the few days that followed my last treatment.

I went in for my infusions on Wednesday, as usual. Like every day that I get home from my infusions, I felt terrible that night. I went to bed around 8pm and didn’t wake up until 7am the next morning when I got up for work.

It’s amazing how different I feel on Thursday mornings compared to Wednesday nights. The sleep helps a lot. I went into work on Thursday with my portable infusion pump attached. Thursdays feel pretty normal, actually. It’s a little weird. However, I still went to bed early (around 10) and slept for about 10 hours.

Friday I worked from home since the nurse comes to disconnect me from the portable pump. About an hour or two after that is when the fatigue really sets in and I hit a wall. So, here’s the sequence of events:

After my nurse disconnected me and left, I took a long shower. Since I can’t take a full shower for two days with my pump attached, this feels amazing. After I got out of the shower, I laid down on my bed, “just for a second”. Still in my towel, I pulled my robe over me and the next thing I knew it was about half an hour later and I was waking up.

At this point, I put on some pajamas and got into bed. Keep in mind that it’s about 3pm at this point. Also keep in mind that it took me about 15 minutes from waking up and thinking “I should put on some pajamas and get into bed, rather than lying on top of it in a wet towel” to actually doing it. This is the key part of fatigue (at least for me). Doing anything takes a long time between realizing that I want to do it and actually making my body move and doing it.

Once I finally got into bed, I slept for about 3-4 hours. I woke up, had something to eat, and spent a couple of hours on the couch. I went to bed around 9pm and slept until about 11am the next day, despite having taken a 3-4 hour nap in the afternoon.

Saturday some friends came to visit in the afternoon. We really enjoyed seeing them, but thankfully they came to us and all I had to do was sit and talk. I wouldn’t have been up for much more. After they left, I laid on the couch and watched movies/TV. To illustrate the point once again, there was a point at which I said to my wife, “I’ll be right back, I need to get up and use the bathroom”. Half an hour later, when I hadn’t moved, she said, “Didn’t you say you needed to get up?” It took another 15 minutes before I actually did. That’s the fatigue again, working against whatever my brain thinks. I went to bed around 10pm on Saturday, and slept until after noon on Sunday.

Sunday I was still draggy, but starting to feel a bit better. The more I sleep, the better I feel, and so I don’t really mind that I slept the morning away. I spent the day not doing very much, and went to bed around 10:30pm.

Normally, I go into work on Mondays after my treatment, but I woke up on Monday morning and still didn’t feel great. Combined with the fact that it was New Year’s Eve day and there weren’t any meetings scheduled, I opted to work from home (thankfully, my work has been very accommodating and flexible where this is concerned). Not having to take the train back and forth to Boston certainly helps me feel less worn down.

By Monday evening/Tuesday morning I was feeling more normal, and I’ll be going into work as usual tomorrow. There were still a few moments today, though, where I was sitting on a chair and told my wife, “I’m going upstairs… I’ll be back in a few minutes”, and then it was 10-15 minutes before I moved.

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…

I recently listened to Tig Notaro’s set where she talks about losing her mom and having cancer. It’s a great set, and you should go get it if you haven’t heard it.

In it, she talks about the fact that her mom had an illness and died in the hospital. Shortly thereafter, her mom received a “how was your stay” survey from the hospital by mail. I got one of these surveys after my surgery, and I happily filled it out. Here’s the thing, though… I was still alive.

Tig talks about the need for a very simple system: two lists. One for the people that are alive, and one for the people who’ve died. Then, you only send the surveys to the people on the first list.

Cut to yesterday afternoon…

I was at work, and my cell phone rang. By now, I’m able to recognize the area code and exchange of “my” hospital, so I pick it up, thinking it’s my doctor’s office calling about an upcoming appointment.

Instead, I spent the next few minutes talking with Brenda. Brenda was very friendly, and had her script very well rehearsed; and Brenda was calling to raise money for the hospital.

I have no doubt that soliciting donations from former patients, people whose lives the hospital has helped save, is a very effective plan. However, here’s another place where two lists are needed.

List 1: People who’ve been treated at the hospital and are now cured.
List 2: People who are still actively being treated by the hospital.

Then, just call the people on list #1.

I awkwardly answered some of Brenda’s questions (awkward since they veered into how/why I had interacted with the hospital), and then politely told her that I’d had a fair number of medical bills this year, even with insurance, and wouldn’t be in a position to make a donation at this time. She completely understood, but did I know that any amount helps, and the number of donors affects their success with grant applications, etc.? Would I be able to participate at any level…?

I finally had to be really blunt, and a little obnoxious, and say, “look, I’m going to have about ten thousand dollars in medical bills this year, so I’m really not in a position to make a donation of any amount to the hospital. Thank you and goodbye.”

Two lists… that’s all I’m saying.

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…