I had my second chemo treatment today. The actual treatment was uneventful and ran pretty much exactly like the first treatment, but some of the initial parts of the day got me a little worked up.

My appointment was for 11 am, which means that I’m supposed to show up at 10:15 so that there’s enough time to do a blood draw and get the results back before I go back for treatment (since the amounts of drugs that I get can vary based on blood counts, etc.). We got to the hospital at 10:15, and walked into the office at about 10:25 (finding a space in the parking garage took longer than usual. Boston drivers suck in general, and they really suck when you put them into small, enclosed spaces).

I checked in, and sat down to wait. While I’m used to doctors’ offices sometimes running behind, it was 11am before they drew my blood, and then 12pm before I was cleared to go back to the treatment area. Once I was back there, things ran really smoothly: I was hooked up at 12:25 and done with my last infusion around 4:30. Knowing what to expect made me much more comfortable, and I was able to use my laptop throughout the afternoon, getting some work done and working on a couple of posts (like this one).

That extra hour in the waiting room was hard to deal with. It was packed, very loud (despite signs asking people not to use their cell phones, people do), and very cramped. While my doctor and all of the nurses I’ve met have been wonderful, my opinion so far is that the front desk staff leave much to be desired. They’re borderline rude, don’t explain anything, and are loud (which wouldn’t be a problem per se, except for the sign where you wait in line that says something like “for your privacy and the privacy of other patients, please wait here”. That’s kind of a joke when they’re yelling every question at people).

Except, they’re not loud when it counts, like when they’re calling someone’s (mispronounced) name to come into the lab room to have blood drawn, or to go back to the treatment area. The waiting room is filled with older and elderly patients who don’t always hear very well (which maybe helps explain part of the reason why questions at the desk are yelled) and can’t jump up out of their chairs to respond. But it feels like the admin staff is unaware of this.

After we were waiting for an hour, my wife turned to me to whisper some observation about the room, and I just stopped her and said something like “please don’t even talk about that right now.” She told me in the car on the way home that she hadn’t realized how much it was getting to me until then, but that I seemed like I was ready to lose it. That was when I got up and went outside into the hall for a couple of minutes. Part of it was the cramped quarters and the noise, but it was also continually hearing the front desk deal with patients who were signing in and checking out, and hearing the loud, rude voices of those interactions. Add to that the general frustration of things running behind (which was annoying, but not really that big a deal) and I just needed a couple of minutes to decompress.

When I was scheduling my next couple of treatments, I did ask my nurse whether or not today was particularly busy, or whether this was normal. She said that it was definitely a busy day and they were even a little short staffed. So, hopefully next time won’t be a repeat of today. We also have some flexibility of when the appointments get scheduled, so perhaps choosing an early morning or afternoon appointment will be better. We’ll see.

I have my second chemo treatment tomorrow, and so in the interests of being anal-retentively detailed (and in the hopes that this blog might be useful to someone else going through treatment in the future), here’s what I’ve been experiencing side effects-wise over the last two weeks.

Day 1 (Wednesday):
After getting home from my first treatment, I went over to the refrigerator and got some water out of the dispenser on the door. It doesn’t dispense cold water, but it is cooler than room temperature (about 50 degrees Fahrenheit… I had to measure it. Like I said, anal retentive). At the first sip, I had my first experience with the sensitivity to cold I’d been warned about (I already talked about this at the end of this post, so I won’t bore you repeating the details).

The second thing I experienced was some pain in my jaw when I started eating. This one just felt weird and uncomfortable. Upon chewing the first bite I took of any meal, whether it was something hard or soft, I felt a pretty significant pain right at the hinge of my jaw. After thirty seconds or so, it’d go away and I’d be fine for the rest of the meal. I didn’t feel it at all any other part of the day.

Day 2 (Thursday):
Pretty much the same as Wednesday. I was given two different meds to manage any nausea, and was okay eating and holding food down.

Day 3 (Friday):
Still sensitive to cold and having the jaw pain when eating. Even with the anti-nausea medication, I still had a mild headache and general level of queasiness pretty much all day. It didn’t incapacitate me or anything, but it made me uncomfortable and generally just feel lousy.

Day 4 (Saturday):
Felt more or less the same as Friday. Since this is my first time through a treatment, I’m testing out how quickly things change. I tried drinking some cooler water today (no ice yet) and was okay. When I tried some ice cream I was still feeling twinges in my mouth. Felt really tired during the day, and when I went to lay down “for a few minutes” I ended up sleeping for 4 hours.

Day 5 (Sunday):
I had a mild headache when waking up. but no queasiness. As the day wore on, I felt slightly queasy, but it was better than the last few days (at this point, I’d stopped taking the anti-nausea meds on a regular schedule, and was only taking them if I felt I needed to). Still had jaw pain when starting to eat something.

Day 6 (Monday – the over-sharing part of our program):
I had some constipation at night and in the early morning, which is a possible effect of the ondansetron (one of the anti-nausea meds). Once the constipation passed, I had a bout of diarrhea, which is a possible side effect of the fluorouracil, took some imodium and felt okay after that. It was really quite a day. Cold sensitivity… check. Jaw pain when chewing… check.

Day 7 (Tuesday):
Overall, I felt pretty good: no nausea and the jaw pain was starting to subside. I started feeling some “dry mouth” symptoms, which just felt very… odd.  The inside of my mouth felt extra textured: not dry exactly, but like all of the pores were standing on end. My tongue felt a little swollen and had that same extra sensitive/extra textured feeling.

I was still having trouble falling asleep. Even with the lorazepam that my doctor prescribed, I found myself staring at the ceiling for a while before drifting off.

Day 8 (Wednesday):
I felt mostly normal today. I still had some dry mouth, but it was better than yesterday, and I had no nausea or achiness.

Day 9 (Thursday):
Some slight dry mouth. Otherwise, I felt pretty normal today.

Day 10  (Friday):
I slept well last night and felt like myself today.

Day 11 (Saturday):
Today was a good day. I felt normal. I even had had some frozen yogurt in the evening with no cold sensitivity at all.

Day 12 (Sunday) through Day 14 (Tuesday):
Good days all. I felt normal and even mowed my lawn.

Overall, I felt like the first two weeks were manageable. There were days when I was tired, days when I didn’t feel 100%, days when I really got fed up at drinking things at room temperature; but after two weeks, I mostly feel like if this is what the experience is going to be, I can manage this. I know that symptoms and side effects can change over time, but hopefully things stay pretty stable. We’ll see how things go after treatment #2 tomorrow.

I mowed my lawn this weekend. This shouldn’t seem like a big announcement, but I haven’t done it since mid-July. My surgery was on July 26th, and after that I was told by my doctors to take it easy for several weeks. Then I started chemo a week and a half ago and was told by my doctors to take it easy and see how I was feeling after my first treatment. So, my dad and sister have been coming to my house and mowing my lawn for the past two months.

This weekend is an “off” weekend for me in terms of treatment, though, which is how my wife and I have come to refer to the weekends that fall on a week where I don’t have chemo. For the first week after my first treatment, I had some level of side effects, fatigue, etc., just like my doctor said I would. However, in the off week I’ve started feeling pretty good – pretty normal, actually, also just like my doctor said I would – and so this weekend I mowed my own lawn.

I also had one of those weird moments that I’ve been having with a number of people in my life. It went something like this:

I was working out in the yard when my neighbor came walking over, and asked if I could help him lift something into the back of his truck. No problem, I said, happy to help. It took all of 30 seconds, and we were done.

“I haven’t seen you at the gym lately,” he said.

“Yeah, I had to put things on hold for a little while,” I said.

And here’s the part that feels strange, because internally, I’m thinking, do I tell him I have cancer? Do I tell him I’m going through chemotherapy? These are often conversation stoppers, and ones that yield awkward moments where people don’t know what to say, especially when I’m feeling good and looking normal and just helped you lift a piece of heavy yard equipment into your truck. It’s one thing when I’m talking with friends or family, but when it’s people that I don’t know very well or talk to that often, I’m not sure exactly what to say.

In the end, I told him that I had surgery, and why, and that I’m going through chemo now but should be done and hopefully in the clear in a six months. Turns out his uncle had colon cancer, and I tell him I feel pretty lucky, since they caught it early and I should be okay after the chemo’s done. My blog title edges into my everyday speech once again…

I finally got my first bill and insurance statement for my surgery today. It only includes the surgical costs, and not the hospital stay after the surgery or the anesthesiology costs. However, I finally got some insight into what gets billed. Also, I’m again fascinated by the lack of ability for the average person to understand what they’re being billed for. Here’s how it breaks out on the invoice:

• Colectomy, Partial: $4,722.00
• Ins Mark ABD/PEL for RT (I have no idea what this means): $1,376.00
• Laparoscopy: $576.00
• Robotic Surgical System: $1200.00
• Inpatient Labs: $512.00

Total cost: $8,386.00

I’m fortunate enough to have medical insurance, so thankfully I’m not paying anywhere close to that amount.

We just finished the last episode of The West Wing. Since we hadn’t watched it while it was on the air, and I’ve enjoyed every other show that Aaron Sorkin has done (Sports Night is one of my favorite shows ever), we started watching it just before my surgery and all through my recovery. I won’t be melodramatic and say that it “got me through” it all – that’d be a bit much. But, it helped fill a lot of hours recuperating on the couch, and I enjoyed it tremendously. After watching seven seasons of it in a row, I feel a little lost that there aren’t any more episodes.

One of the little things that I’ve been told to do is to flush my toilet twice whenever I go to the bathroom in the first few days after a treatment, since the chemo drugs are toxic. It was communicated as a “just to be safe” type of thing.

Ignoring for a moment the whole toxic chemicals passing from my body into the water system, my toilet uses 1.6 gallons of water per flush. Let’s say I go to the bathroom 3 times a day. That means I’m now using 4.8 more gallons of water per day that I was before.

4.8 gallons x 10 days per month x 6 months = 288 excess gallons of water used just by me.

I’m having a hard time finding the answer to what I thought would be a simple question for Google: how many people in the US receive chemotherapy each year? Since all of the drugs are tracked and controlled, I assumed that this sort of information would be publicly aggregated somehow, but apparently it isn’t. All I can find is people complaining about the data not being available.

However, at only 3,500 people (and I’d assume that there’s way more people than that going through chemo a year), that’s a million gallons of water.

I realize that there’s all sorts of problems with my math and assumptions here (not everyone has the same kind of toilet, same length of chemo, same frequency of elimination), but it does feel like there’s an unintended consequence here that I certainly never considered before.

I got disconnected from the portable infusion pump this afternoon, so I’m officially done with the first chemo treatment. The nurse came to the house and the whole thing took about 5 minutes. Unhook the bag… flush the line with saline and heparin… and then out comes the needle. The most uncomfortable part was the adhesive holding the needle in place pulling out a few more chest hairs (this is something I’ve gotten used to over the last couple of months).

It feels good to be able to walk around unencumbered. The portable pump isn’t terrible, but it’s a bit awkward. They hook it up so that there’s about five feet of tubing going from my chest to the pump, and then everything’s contained in this small bag that you can sling over your shoulder or wear around your waist like a fanny pack. You then just have to be careful not to forget that it’s hanging over the back of your chair when you get up to walk away (which I managed to only do once).

At the suggestion of one of the nurses I spoke to before my treatment began, I picked up something called a Poppy Pocket, which is a combination elastic band and pouch. You wear it around your chest and then the pump and bag go in the two pockets that hang down. Then, everything’s contained underneath your shirt/clothes. I tried it out yesterday and today, and it works well, though it still takes a little getting used to. Ultimately, though, it let me move around without having wires hanging everywhere.

I worked from home yesterday and today since I wasn’t sure what to expect with treatment #1. I think that we’ve figured out that Fridays during a treatment week will probably have to be a day I work from home, since lugging all the necessary equipment that’s needed for the disconnect (gloves, saline and heparin syringes, a sharps container, etc.) into work isn’t exactly convenient. However, I’ll probably be able to go into work on Thursdays if future weeks are anything like the last couple of days.

As far as side effects go, things are still pretty mild. I felt a little more queasy today than I did yesterday, but it wasn’t bad and I didn’t have any problems eating or keeping food down. Between 6 and 7pm I got extremely tired and ended up taking a nap for a few hours. While sleeping that much in the evening normally keep me up all night, I’m still feeling like I won’t have much difficulty falling asleep.

Day one of chemotherapy treatment is technically over, though I’m still hooked up to my portable infusion pump which will dose me with 5FU (fluorouracil) for the next forty-six hours (well, forty-two at this point).

I had a lot of anxiety going into today. I didn’t sleep well the past couple of nights, even with the lorazepam that my doctor had prescribed for the insomnia I started experiencing after my surgery. I know what the list of possible chemo side effects is, but, understandably, no one can tell me exactly how this is all going to affect me. Am I going to sail through treatment with relatively few side effects, or are they all going to hit me hard? There’s no way to tell.

My wife tells me that I was a little scattered when we met with my oncologist this morning. I’m thinking they’ve probably seen that a lot.

So, here was my day:

My appointment was scheduled for 12:30pm. We got to the hospital a little early, just after noon. The waiting area was much busier than my first appointment (when we met the oncologist and talked through treatment options), and my nurse later mentioned that any week following a long weekend is a little hectic. I was easily the youngest patient in the waiting room by 20 years, if not more.

After a few minutes, the phlebotomy nurse called my name and I went into a small exam room. Despite having this handy port installed last week, she did a finger stick, and then slowly… squeezed… twenty… drops… of… blood… out… of… my… finger… one… at… a… time. It didn’t hurt very much, but it was uncomfortable, and the whole time I just kept thinking, “it seems like there would be a better way to do this”.

Back to the waiting room, and after a few more minutes my name was called again and I was brought back to have my vitals taken. I got used to this when I was in the hospital recovering from surgery: blood pressure cuff, finger monitor to check the oxygen saturation in my blood, and temperature. They also add height and weight, which I learned was because the chemo drugs are titrated based on those measurements. I also learned that I’ve shrunk by half an inch. Either that, or I was slouching…

My wife and I then met with my oncologist for about half an hour. We went through the list of side effects one more time, mostly because of my anxiety about them, and I wanted to hear about the range of problems one more time. I like my oncologist. She explains things clearly and is easy to talk to.

Back to the waiting room, and a few minutes later I was called back to the treatment room. Here’s where the fun began.

The treatment room is a large open room with a lot of individual areas that can have a curtain pulled around them. In each small curtained area is a comfortable chair that reclines, a chair for someone who’s there with you, a TV, an IV pole, and a cabinet/station for the nurse to work from.

We got settled and met my nurse.  I say “my nurse” because she’ll be the one I see every time I come in for treatment. I like that they handle it that way. I’ll be going through treatments every two weeks for six months; it’ll be nice to see a familiar face and build a relationship with someone.

We went through some orientation paperwork (and a large box of home care supplies) and then everything got started. My treatment regimen is a pretty standard one for my type and stage of cancer. It’s a trio of drugs commonly referred to as FOLFOX: fluorouracil (also called 5FU), leucovorin, and oxaliplatin. All of them are administered via IV.

Here’s the rundown of my afternoon:

• A small needle gets stuck into my port and hooked up to the IV drip (all of the medications get infused with a dextrose-based (D5W) solution, instead of a saline drip (at least this time).
• 2:05pm: the nurse starts an infusion of a small dose of dexamethasone, a steroid that’s supposed to help counteract some of the side effects.
• 2:20pm: dexamethasone infusion is done, and an infusion of ondansetron (Zofran), an anti-nausea med, begins.  Another proactive treatment against side effects.
• 2:33pm: ondansetron infusion is complete, and we start an infusion of calcium and magnesium, another effort to counteract some of the possible side effects (mostly the peripheral neuropathy that can be caused by the oxaliplatin).
• 3:04pm: ondansetron is done infusing, and now we start the big doses: both the leucovorin and oxaliplatin are hooked up and start dripping into me.
• 4:11pm: a nurse stops by to check my vital signs. I’m still breathing.
• 5:07pm: the leucovorin and oxaliplatin infusions are done. The nurse hangs another bag of calcium and magnesium.
• 5:35pm: calcium and magesium infusion is done. There’s now a syringe with a bolus of 5FU that gets injected into the IV.
• 5:42pm: 5FU bolus is done injecting. The nurse disconnects the main IV pole and hooks up the additional dose of 5FU that’s attached to the portable infusion pump that I’ll be taking home. This dose gets administered over 46 hours, and then a nurse comes out to my home/work to disconnect it on Friday.

And then we went home.

Sitting in the chair all day, I felt… okay. I didn’t feel sick or nauseous. My head was aching a little bit, but wasn’t painful. It felt more like how you feel when you don’t get enough sleep, which, let’s face it, is the case with me over the last couple of days. With all the fluids being pumped into me, I also had to get up and go to the bathroom about five times.

Now that I’ve been home for a few hours, I’m still feeling okay. I’ve got instructions for which anti-nausea meds to take over the next few days (since that’s a predicable and hopefully preventable side effect), and eating a light dinner wasn’t a problem.

I’ve already noticed one side effect that I was warned about: cold-induced neuropathy – basically a sensitivity to cold. I haven’t felt it in my hands yet, but when we got home I poured some water from the dispenser on our fridge, and took a sip.  The sensations are hard to describe, but here’s the best I can do: my lips felt tingly, almost like I was drinking something carbonated; the inside of my mouth felt like it was getting a mild shock; and the back of my throat felt like it was closing up (it wasn’t. I could still swallow). I grabbed a thermometer from the kitchen drawer. The water was 50 degrees, so, not super cold. I guess no ice cream for me for the next few days.

So, at this point I’ve got the portable infusion pump connected to me via a long tube, and we’ll see how it goes sleeping with it in. Friday I get disconnected, and then it’s wait a week and a half until my next treatment. Onward and upward.

I had my port (officially called a Port-a-Cath) put in today. It’s a small titanium button-looking thing gets installed underneath the skin right below my collarbone. Then, a small tube connects from it into my vein. That way, when they need to give me all of the IV chemo drugs every couple of weeks, they just stick a small needle into the port, rather than having to do a new IV into my arm every time. Plus, they can also draw blood from it for blood tests. Very handy.

The procedure was simple, in that it was a lot of waiting around after which I remember nothing, since they sedated me. Right now it’s covered by a bandage that I can’t remove until Monday, and it’s painful enough that I need to take tylenol pretty regularly. The doctors tell me it’ll feel better in a couple of days and that I’ll barely notice it after a week or so.

I am now the perfect fusion of man and machine…

Photo Credit

Photo by Tristanb and used in accordance with the Wikimedia Commons license.