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 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.

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.

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 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.

My wife and I hosted our families for Thanksgiving again this year. It’s the fourth year we’ve done so, and while it’s a lot of people (it was 32 this year), and therefore a lot of preparation, we really look forward to it and love doing it.

As Thanksgiving approached, several family members asked us if we were sure we wanted to host this year, what with me going through chemo. Since we knew it was an “off” week for me, we batted aside any assumptions that we’d need to take a break this year and moved forward.

We did enlist additional help moving our furniture around and with some of the cooking (thanks, everyone!), and I took more breaks and rested when I needed to, but it was important to us to be able to host this year, perhaps more so than in the past. It would have felt like we were letting my treatment take something important away if we hadn’t done it.

We’ve seen most of the people who came over the last few months, but there were a few people we hadn’t seen in a while. I heard a lot of exclamations of how wonderful I look. I’m not recommending cancer and chemo to anyone, mind, but it’s good for the ego to hear how great you look all the time.

The interesting thing about the drugs that I’m taking is that they haven’t affected me physically very much. My taste buds and appetite haven’t been hugely affected, so my weight is relatively stable; I haven’t lost my hair; and in general when you look at me, you wouldn’t know that I’m going through chemo.

The one outward physical change, which is very easy for someone to overlook, is some discoloration in my hands. They’ve looked like this for the past few weeks:

It’s a pigmentation change that my oncologist says is totally normal and will fade after my chemo is over. It’s happening on my toes, too.

So, with me otherwise looking normal, and people thinking that chemo = big changes in how you look (weigh loss, hair loss, sallow coloring, etc.), I’m not surprised at people’s reaction of “wow, you look so great”. And, I don’t really mind it, either. I know that it’s basically an expression of “I care about you and was worried, and I’m glad to see that you’re doing well.”

It’s just funny hearing it over a dozen times in the same night.

I was told my my oncologist and nurses that the effects of chemotherapy can be cumulative, and this last round certainly kicked my ass more than the first two rounds. Here’s the details:

Day 1 (Wednesday):
Coming home from the hospital, I felt worse than I had for either of my first two treatments. I had a headache and felt queasy. I was already feeling some tingling in my fingers (not cold related) and my hands felt a little swollen. I made it through the evening just fine and went to bed, but it hit me harder than it had before.

Day 2 (Thursday):
I felt mostly like I have in previous weeks on the day after treatment: not too bad – a mild headache and slightly queasy at times during the day (I found out that one of the anti-nausea meds, Zofran/Ondansetron, has headaches as one of its side effects, so that’s nice). I didn’t take very good care of myself today. I went to work and had lots of back-to-back meetings, so I didn’t eat lunch until around 3. I didn’t get home until about 7:30, and I was wiped. I went to bed around 9:30 (which is early for me) and slept through the night.

Day 3 (Friday):
The general peripheral neuropathy (tingling fingers) didn’t bother me at all, but still plenty of cold sensitivity. I find I need to wait  until the water is warm/hot before washing my hands, and even the air dryer at work is enough to cool my hands enough to feel tingly. I also felt that same not-quite-dry-mouth-but-my-mouth-feels-weird feeling like I did the first time around. Interestingly, I’m not feeling much jaw pain when I start chewing food this time around, which is a good thing. Despite going to bed early last night and getting a full night’s sleep, I hit my normal wall of fatigue between 4-5pm.

Day 4-5 (Saturday and Sunday):
I felt worse this weekend than on any weekend yet following treatment. I was nauseous and exhausted all day. I was achy and sore in my shoulders and in the front of my chest from my collarbone up (basically, the front of my shoulders). I also had a weird feeling in my throat  that just felt like all of the muscles were sore and overworked. I wasn’t having any trouble breathing, but it was uncomfortable when I breathed hard, laughed, or turned my neck too far to the side. It got bad enough that I started looking through my paperwork about what to expect from side effects, and based on what was written there (call right away if you have pain in your shoulders, throat, etc.) I called the doctor on call. They said what I expected, which was to call back if it got worse, but it didn’t sound like I needed to rush into the emergency room. I was uncomfortable and pretty miserable all weekend.

Day 6 (Monday):
I woke up feeling lousy enough today that I decided to work from home (thankfully I have that flexibility). I still was achy in my shoulders and neck/throat, though not as bad as over the weekend. By the end of the day I was a little more sore and achy than at the beginning of the day, and I had a light headache for much of the afternoon. Not being able to drink anything cold really sucks. Mostly it’s mental, but it also means that you just don’t feel very refreshed. I brush my teeth, gargle with mouthwash (alcohol free, so it doesn’t dry out my mouth, which is another possible side effect), chew gum, and use mints more than usual, to try and compensate, but it’s not the same.

Day 7 (Tuesday) through Day 14 (Tuesday):
Overall, things started to feel better during the second week, as usual. By late Tuesday (Day 7) I wasn’t really feeling any more muscle aches and pains, and as the days wore on I felt more normal. By the weekend, I felt good, spent time with my family, and even mowed my own lawn again. I did find myself feeling somewhat queasy throughout the week, and I was trying to pay attention to whether or not it was better or worse at certain times of the day, before or after I ate, etc. I didn’t notice any pattern, and took a prochlorperazine a few times during the week to calm my stomach.

Two other things that were hard to determine whether they were at all related: I had a runny nose all week, but no other cold symptoms. And, it wasn’t even runny to the degree that it normally would be if I had a cold – just really tiny drippiness all week. Second, I had a migraine late in the week. I hadn’t had one in a while, and the migraine med that my primary care doctor has given me worked as usual. Who knows whether that was related to my chemo or not.

I talked a lot about my cancer today.

We went to my nephew’s first birthday party, and most of my extended family was there (hi everyone! most of my blog readers are you right now, so don’t worry, there’s nothing bad about you in this post). I hadn’t seen some of them since before my surgery, and even those that I’d seen more recently I hadn’t seen in several weeks.

So, naturally, everyone was wondering how I was coping with treatment and asked questions, and I talked a lot about how everything was going. I didn’t mind; I’ve gotten used to talking about my cancer, chemo, and such. It’s a big part of my day to day life right now, I never really mind answering questions from people who care about me, and I’ve never exactly been shy about telling long-winded stories.

It’s weird, though, how when you have cancer and are going through chemotherapy, every conversation that you have can feel like it’s about cancer. Whether it’s talking with family, running into a neighbor, or getting my hair cut, I sometimes think, “should I talk about this?”, “is this going to make someone uncomfortable?”, “do I know this person well enough to drag this out?”

I had a really nice time today; I enjoyed visiting with everyone, and I felt a lot of love and support. And I think that talking about my treatment over and over somehow helps it seem more normal, which I guess is good, and also a little strange.