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.

I’ll tell you one thing, kids. Despite what I may have led you to believe, this chemotherapy stuff isn’t all sunshine and rainbows.

I generally try to approach things/life/cancer/chemotherapy with a positive attitude, and I certainly like to write this blog with a bit of humor and positive spin, but there’s no getting around it, this last treatment cycle has sucked.

My oncologist told me that the side effects of the drugs I’m being given can be cumulative, and with last Wednesday being my third treatment, I guess it’s starting to catch up with me.

Things went as expected during my treatment on Wednesday, and as usual I felt pretty normal on Thursday, going to work with my portable pump still attached. Friday I worked from home, which has become my routine on treatment weeks, since the nurse has to come to disconnect the pump that day. Friday afternoon around 4pm is when I hit the fatigue wall, and just get incredibly tired and worn out. I went to bed a bit early on Friday, and that was all in line with what I’d come to expect.

Saturday and Sunday were rough, though. In addition to what I’ve come to view as normal: being really tired and fatigued; having some queasiness and nausea that the medication helps but doesn’t completely eliminate; having some headaches caused by the anti-nausea meds; not being able to touch or drink anything cold; and having some weird jaw pain when I eat, I also had a lot of muscle aches and pains this time around. It started on Saturday as some discomfort in my shoulders and my upper chest (around my collarbone). It was just a persistent ache and discomfort, and made it really uncomfortable all the time.

Starting on Saturday afternoon, I also started feeling what I can only describe as muscle aches in my throat. It was a very strange feeling. I wasn’t having any trouble breathing, but it just felt like my whole throat had been overworked and was sore. If I laughed or breathed hard, it hurt. Then, when I was going to bed and lying down, it was really uncomfortable, almost painful, in my throat when I laid on my right side.

This lasted the whole weekend, and while it didn’t get any worse, it didn’t feel any better either. By Sunday evening I was leafing through the documentation for my chemo meds, which lists side effects and other such info, just to refresh my memory on whether this was expected/normal. That’s when I saw the following statements in a big box labeled “Call your doctor if…”:

Please call your doctor or nurse if you notice any of the following: discomfort in the chest, neck, back, or arms (call 911)

and

Always call 911 for serious problems such as: discomfort or tightness in the throat or jaw that is not related to cold

So… yeah.

At this point I called the hospital. There’s a number to reach the oncologist on call outside of office hours, so I called and asked that doctor to be paged and call me back. Within an hour I was speaking with someone, who after listening to how/what I was feeling said it didn’t sound like I needed to rush into the emergency room, and to call back if things got any worse.

So, our fears of anything seriously wrong being somewhat allayed, I went back to feeling like crap for the rest of the evening.

Monday I woke up feeling slightly better, but still feeling a lot of the same muscle aches, soreness, and discomfort, so I opted to work from home. It helped that it was Columbus Day and most of my clients’ offices were closed, so it was a bit of a slower day at work, anyway. My company’s also been very supportive throughout my diagnosis and treatment and encouraged me to take time off or work from home when I need to.

Now it’s Wednesday, and I’m finally starting to feel close to normal again. I’m still having bouts of queasiness here and there – not predictably enough that I felt I needed to be taking my anti-nausea meds all day every day, but enough that I’m taking them periodically. In previous rounds, I wouldn’t be feeling that any more.

I had trouble getting started writing this post. Like I said, I like to try to be positive, and it’s hard to write about this stuff without feeling like I’m wallowing a bit. And, let’s be clear, I am wallowing a bit. However, part of the point of me writing this blog is also to chronicle my experience, and so in the interests of sharing the bad along with the humorous observations, here we are.

I got disconnected from my portable infusion pump this afternoon, which always feels good since I no longer have a needle in my chest or a long plastic tube dangling from my body. Plus, I can take a full shower, rather than just being able to wash my hair (you’re not supposed to get the pump or the spot on your chest where the needle’s going into the port wet while everything’s hooked up).

The pump runs for 46 hours, and every sixty seconds, it makes a noise that sounds exactly like this (since I recorded it):

The noise is, I believe, a mechanical element within the pump that runs along the plastic tube and forces a small amount of the drug through the tubing and into my body (it’s not gravity-based like IV bags that they hang on poles in the hospital). The pump is set for 3 mL per hour, so there’s not a lot of liquid in the bag; it just goes very slowly over the two days.

Driving home from my first treatment, my wife and I immediately started counting along with the “clicks”: one mississippi, two mississippi…  we’d ignore it for a while and then when the pump clicked one of us would say something like “857 mississippi”.

So, being the person that I am (i.e., a total geek), I did the math today: 46 hours x 60 minutes/hour = 2,760 minutes = 2,760 clicks.

These are the random things you think about when you’re carrying around a pump for two days.

I had my third chemo treatment yesterday, and it was miles better than my second. First, it was scheduled for a little later in the day (I didn’t need to be there until 12:15pm), which meant that I could sleep a little longer, take time to have breakfast, and there was no traffic driving into Boston.

It also meant that by the time we arrived, the waiting room was pretty sparsely populated – a big contrast to the last time I was there, and it made a big difference.

They also decided to do my blood draw from my port, rather than sticking me with a new IV needle. So, this meant that I spent even less time in the waiting room. I was there for about five minutes before my name was called to have my vitals taken (height, weight, temp, blood pressure, and blood oxygen level), and then by the time they sent me back to the waiting room, I was called back to the treatment area.

All of the treatment spaces with chairs were occupied, so they put me in one of the two available spaces with a bed. For future treatment days, I’ll probably ask if one of those spots is available. The physical space is a little bigger, there’s a bedside table, and generally a little more room to spread out. I took my shoes off and raised the back of the bed so that I could sit up, and it was very comfortable.

It was definitely a less busy day than my second treatment, and everything went like clockwork. I was hooked up and getting my first drugs administered just after 1pm, and I was done just after 5. I actually expected to be there until 6, since there’s usually a little bit of a gap between one drug finishing and the next starting, and so it stretches from four hours to close to five, but because it wasn’t as busy, my nurse was right there as soon as one drug was finishing to hang the next bag.

When I first met with my Oncologist, I had some questions about future screenings and prevention that were a little complicated. I, along with many people in my immediate and extended family, have tested positive for a gene mutation named BRCA-1, which is one of the genes they refer to as a “cancer gene”. In women, it’s associated with a much higher risk of breast and ovarian cancer, and in men, it means that you’re at slightly higher risk for breast and prostate cancer (the risk percentages don’t rise for men nearly as much as they do for women). Given this wrinkle and the rest of my family history, my oncologist recommended that I meet with one of the genetic counselors on staff. So, yesterday, while I was sitting in the bed getting various drugs pumped into me, Kristin stopped by and we talked for about an hour.

It was an interesting conversation. It was clear that some people want to talk to her because they’re looking for an explanation for their cancer. They want to know why. That wasn’t really where I was coming from. I accept the fact that there may be no knowing why, but I want to know what I should do in the future in terms of prevention and screenings, and also what the rest of my family should do given my diagnosis.

I found out that there are two types of colon cancer “syndromes” that they look for in families: Lynch Syndrome and Familial Adenomatous Polyposis (FAP). After my surgery, they tested my tumor for signs of Lynch Syndrome, and it was negative, and my family history doesn’t suggest FAP. And while my being positive for the BRCA-1 mutation is interesting, none of the studies have shown any correlation between colon cancer and BRCA-1.

As we went through my family history, there wasn’t really anything “jumping off the page” to explain my cancer, but again, that’s okay. I did get some more information about what the screening recommendations were, and I’ve got a few questions from her to follow up on. Ultimately, she’ll review the case with the larger genetics team and follow up with me in a couple of weeks to see if there are any other tests they’d recommend (probably not, but it’s possible).

I also met with Carla, my PA, yesterday. It was a short meeting just to check in, and she was also able to give me an order for a flu shot, since the hospital had them now and had a separate area screened off right outside the treatment area for patients to get those. I managed to get out of the treatment area in time to get mine before we left. Apparently, there’s no issue with getting the flu shot at the same time that I’m getting drugs that compromise my immune system. I mean, what could possibly go wrong…?

All in all, it was a much better experience than last time, though I was definitely feeling the drugs a little more than either of my past two treatments. When I got home, I was already feeling some of the tingling in my fingers, and I had a headache and some mild nausea all evening. It wasn’t terrible, but it was more quickly present than either of my other treatments.

I’m 25% done, and that’s good.

My side effects for treatment #2 followed pretty much the same path as my first treatment, with a few small differences. Since my oncologist told me that side effects can be cumulative and/or change over time, it’s not a shock that things weren’t exactly the same, but I’m happy that they didn’t get much worse.

Day 1  (Wednesday):
I had much more cold sensitivity in my hands as soon as I got home from treatment. Washing my hands with cool/cold water caused pins and needles all over. I also was feeling some general peripheral neuropathy in my hands and fingertips: no numbness yet, but my hands felt slightly swollen and I had some tingling in my fingertips that wasn’t cold related. I still started feeling cold sensitivity in my mouth and throat and was feeling the jaw pain when I started chewing anything.

Day 2 (Thursday):
I felt pretty normal today, just like last time. I had a slight headache in the middle of the day, but took my ondansetron and didn’t really have any nausea. Now that I knew how things went, I went to work and was fine there all day. I was feeling some more tingling in my fingertips, but it wasn’t painful or even particularly annoying; it mostly just felt a little weird and I found myself flexing my hands every once in a while.

Day 3 (Friday):
I worked from home today because it’s port disconnection day. I felt mostly okay though. I did still feel more cold-based and peripheral neuropathy in my hands – still just tingling in my fingertips. Somewhere around 3-4 PM is where I hit a wall and the fatigue sets in. Rather than take an evening nap and screw up my sleep, this time I managed to keep myself awake until 9 o’clock and then just go to bed super early (for me) and sleep through the night.

Day 4 (Saturday):
Just tired today. I lied on the couch most of the day and napped once. The peripheral neuropathy/fingertip tingling started to fade at this point, but I still had the cold sensitivity and couldn’t eat/drink anything cold. Room temperature liquids get pretty tiresome (hot ones are fine, though).

Day 5 (Sunday):
Pretty much a repeat of Saturday. I learned from the last round, and while I was taking the ondansetron over the last few days, I also took colace. That seemed to prevent any constipation, so that’s a good thing.

Day 6 (Monday) through Day 10 (Friday):
Back to work,  and overall feeling okay. I had some moments early in the week where I had a mild headache or felt a little queasy, but taking an ondansetron or prochlorperazine mid-day seemed to deal with any nausea or queasiness just fine. By midweek, I was okay: jaw pain was gone and any fingertip tingling was gone, too.

Day 11 (Saturday):
We drove to New York on Friday evening to attend our cousin’s wedding on Saturday. Saturday was a day where I felt okay overall, but ended up feeling very queasy and having some diarrhea mid-day (hey… you’re reading this blog because you want all of the details, right?). Took a prochlorperazine and some imodium and felt fine within an hour, but it definitely was inconvenient. Then again, I’m not sure whether I felt how I did because of my chemo treatment, or just because I’d had a long day/night driving the night before. Either way, it worked out okay.

Day 12 (Sunday) through Day 14 (Tuesday):
As with last time, I felt pretty normal these days, as far as side effects go. I’ve still been having some problems sleeping from time to time, and as a result on Monday I felt generally crappy, and worked from home. I’ve also discovered that the cold sensitivity in my mouth and throat finally fades away around Day 12, so I’m able to start drinking cooler drinks (putting some ice into my water – not a lot, but enough so that it’s slightly below room temp) and ice cream is doable on Day 13/14. A trip to one of the local ice cream stands or frozen yogurt places near us on the evening before my treatment is starting to be a tradition…

As people ask me how I’m doing, I keep using the word “manageable”. There’s days where I’m tired or don’t feel 100%, but the rest of my side effects are more annoying or mentally frustrating than they are debilitating. Like I said last time, if this is how things continue to be, then I can manage it. Two rounds down, ten to go.

For those reading this blog who have been lucky enough not to have to deal with a lot of medical bills, here’s how it works. You go to the doctor; weeks or months pass (seriously, I”m amazed at how long it takes for some bills to arrive); the doctor bills your insurance company; the insurance company sends you a “statement of benefits” that outlines what they were billed and what you then owe; and then you get the bill from the doctor/practice/hospital.

This is supposed to increase the transparency to you, the consumer/patient, so that it’s clear what you’re being charged for and what your insurance is covering. An audit trail, if you will. In reality, even the bills that are clear often contain items that are completely incomprehensible to the average person.

Whenever political debates about health care come up, there are people who argue that health care costs are (in part) inflated because consumers don’t know, or, more importantly, care about the actual costs of their care, since insurance covers most of it. If something you want to buy (a car, a house, a frying pan) is too expensive, you look at other options. If you have insurance and the “real” costs of your health care are masked, then there’s no economic forces to make people shop around for cheaper services, or ask if there’s a less expensive treatment option.

While I think this is an interesting argument, and one that I don’t think is completely off base, it misses the fact that “buying” health care isn’t like buying a car or a frying pan. Trying to find out how much something costs in advance of your treatment is often difficult or even impossible.

Before I started my chemotherapy, I had two separate conversations about costs. The first was a comment that my oncologist made in my initial meeting. She told me that 5FU, one of the main drugs in my treatment plan, was not only very effective and well tested, but it was also cheap. She commented that with the cost of many drugs being so high, it was nice to have one that was low cost, highly used, and able to get the job done.

My second conversation was with a hospital employee that I was referred to when I asked the question, “how can I find out what the post-insurance, out of pocket costs of my treatment will be?” “You should talk to Doug,” I was told. He’s the one who knows all about insurance issues. Doug was a very friendly guy, but when I asked him about figuring out what the costs to me would be, he told me that that was an almost impossible question to answer, primarily because every patient is different, and who knows what tests my doctor might order or adjustments to my treatment plan she might make over the course of six months.

I’m sure I could have pushed him a little more: “okay… let’s say everything goes according to plan and nothing needs to be adjusted, how much would it be then?” But, I didn’t. Mostly I didn’t because I already knew the details of my health insurance plan, which told me that I had a $500 annual deductible, after which my insurance would cover 80% of costs while I was responsible for the other 20%, up to an annual maximum of $5,000. Once that annual maximum was reached, insurance would cover 100% of any charges.

This is all a big lead up to the fact that in the last 48 hours, I’ve received the insurance statement and hospital bill for my first chemotherapy treatment (from September 9th). And let me just say… holy fuck.

Interestingly, the 5FU does appear to be pretty cheap. It’s only $7.80 (that’s the amount billed to my insurance company, not the amount I have to pay). The leucovorin, drug #2 in my cocktail, is $271.50. The oxalyplatin, drug #3, is $12,322.85 (!). Total cost for the entire first treatment: $16,119.45. I’m supposed to get twelve treatments. That means the overall cost of my chemotherapy is going to be somewhere in the neighborhood of $195,000.

The part that feels really unfair is that the oxalyplatin is the “worst” of the three when it comes to side effects and how it makes you feel. And yet, it’s the most expensive line item on the bill. It’s adding insult to literal injury.

A few more interesting tidbits from the bill:

• There’s a $17 charge for “routine venipuncture”. That’s how much it costs to draw my blood for lab tests.
• There’s a series of line items that correspond to my infusion routine, basically one line item for each time a new drug is hooked up to the IV. These aren’t the costs of the drugs themselves – that’s covered on other line items – but the charges for switching out the drugs. Each time it’s about $300. I’m not denying that my nurse’s job is important, but $300 for each time a new bag gets hung onto the IV pole seems like a price schedule that’s a little out of whack.
• There are two line items that have a cost of $0.15. I realize that every penny counts, but really?

I recognize that the cost of drugs includes the time and resources that the pharmaceutical company put into research and development, and I realize that a line item may include offsets for other parts of my treatment, but it really looks strange when it’s all printed out and you’re trying to make sense of it.

Continuing to review the bills and see all of these costs listed out makes me very grateful that we have good health insurance coverage through my job. I completely understand how a big medical “event” like this can completely change people’s lives and drive people to bankruptcy. Thankfully, that’s not a risk for us. And, while I know that the Affordable Care Act isn’t perfect, going through all of this definitely reinforces my opinion that everyone should have health insurance, and I’m glad that there’s at least some effort by the government to move towards getting everyone covered.