The Red Devil

Thursday, March 20, 2014

Disclaimer: I decided to post some pictures along with my story about my first four rounds of chemotherapy and my port placement. They aren't too bad but I did put a picture of what my port looked like the day I got the procedure, so just wanted to give you a fair warning!

I don't really know why it's taken me so long to blog about what life has been like over the past couple of months. I was actually shocked when I looked back on our blog to see that my last post was from back in December! I had all intentions of posting about each round of chemo because I thought that I didn't want forget what it was like. I didn't want to forget how Round 1 was different then Round 2, which was different then Round 3 and then finally Round 4. Turns out, that although your reaction and side effects to chemo can be pretty predictable, your emotional state sure can't from week to week. And just couldn't bring myself to go back "there" each week, until I saw the light at the end of the tunnel.

The treatment weeks seemed hard enough to get through, physically and emotionally. The little bit of energy that I would have on those weeks I spent on my family. The following week after treatment was often "back to normal", or at least back to what our new normal was. I felt much better physically and emotionally on those weeks, which I thought would be the perfect time to document our story. But nope. In all honesty, I didn't want anything to do with blogging those weeks. I didn't want anything to do with cancer. I didn't want anything to do with chemotherapy. I didn't want to rehash or relive how I felt the week before. Once I got through those treatment weeks, I didn't want to go back. All I could do was look forward, not backwards.

Having said all of that though, and now that we have made it through the big four treatments of the Red Devil, I finally feel ready to share. There are probably a lot of things that I thought about sharing over the weeks that I now forgot, but here goes nothing.

I had heard the term "Red Devil" maybe a handful of times before starting my AC treatment but I was so overwhelmed that I didn't really think too much of it. People were very careful about what they told me about going through AC. The doctors were very open and honest, but careful in their delivery of the news. People who had gone through it would tell me that it was hard, but that I would come through the other side. They would always focus more on positive (and rightfully so). But after treatment number one, it was very clear to me why the called Adriamycin the Red Devil. My treatment plan was pretty standard for my type of breast cancer, and we kicked things off just after the holidays with getting port placed on January 7th, followed by round one of AC on January 13th.

Port Placement: This is probably one area where I wished I blogged about the procedure before now, because it seems like it was so long ago and I already don't remember a lot of what it was like. But before getting my port, I noticed there wasn't a lot of information online about what the procedure was like, how you felt afterwards, etc, so it was something I wanted to document. I actually wasn't too nervous about the procedure because I really didn't know much about it. Basically, a port is a little medical device that is placed under the skin to help eliminate the number of IVs that would be needed to go through weeks of chemotherapy treatment. There is a risk, especially with AC, when using an IV and since you also need bloodwork at every treatment, for me, that would have meant thirty two IVs only in my right arm (they can't use my left arm because of the lymph node removal) over the span of treatment. That pretty much would have destroyed all my veins in my right arm, so the decision to get a port placed was a pretty easy one. With the port, it's accessed only one time each treatment and allows for safer chemo delivery, as well as drawing of blood samples, all with one prick.

The port is placed in your upper chest, right below the collar bone. It's basically a cylinder with a hollow space inside that is sealed by a soft top. It connects to a small catheter that is run to one of the large central veins that delivers blood to your heart (close to your neck - ick). The procedure wasn't actually that bad. The worst past was that the hospital was running late so we had to wait around for about three extra hours before the procedure, but what can you do. You are put under a twilight medicine so there really wasn't any pain at all for me. Although you are "awake" and you can talk and answer questions, you aren't exactly "with it". I remember lying on the bed and having the surgeon talk to me, but I could have sworn that the procedure took a whopping 15 minutes, but apparently it was more like an hour and a half. Here is where my disclaimer comes into play. Here is a picture of what my port looked like coming home from the hospital the day it was placed, a picture of what it looks like today, and what it looks like during treatment when its all hooked up to the IV. It's kind of hard to tell from the pictures how far it sticks up under my skin, but there is a definite bump. I already can't wait to get this thing out of me.

I was back to work the next day, although that morning was a bit rough and I wasn't feeling so hot. By the afternoon I perked up a bit and even made it to the kids light festival at school. Although I clearly knew when I had enough and home we went, and Mommy went right to bed.

The Red Devil: I got my port placed on a Tuesday, and the following Monday was my first AC treatment. For now, I'll try to stick to just the physical aspect of treatment and get to the emotional ups and downs another day. Partly because that could make this the longest post known to man.

Once we got signed in a the oncology office for round one, the first thing was to get my vitals taken. You go over all your medications, pain levels, blood pressure, temperature, weight, etc. They base your chemo concoction on your weight, so it ends up being pretty important to keep an eye on your weight. If you end up changing by 10%, your concoction has to be adjusted. Next we headed back to the treatment room, which is basically one large room, separated by smaller treatment "rooms" (no doors, some are divided just by curtains, some have three walls with one curtain, etc) all surrounding a main nurse area. I have to say, that where I go, they really do try to make you as comfortable as possible. Some rooms have TVs with DVD players, they all have reclining chairs, and they provide heated blankets, and drinks and snacks to the patients. Next it was time to get blood drawn. I was a little nervous about what it felt like to get my port accessed, mostly because it was still a little sore from the procedure. But all in all it really wasn't that bad. It was much easier then getting an IV in your hand, one prick and I was done. It was pretty gnarly getting blood drawn out of your neck, but I try not to think about that part too often. :)

After getting blood drawn, you have to wait for the results before they will even mix your concoction. During this time though they start your regular IV drip and start to pump the nausea meds and steroids. I can't even remember all the meds that they give you before actually getting the chemo. I know one of the nausea meds was EMEND, which stays in your system for three days (come to find out, that's why often you will  hear day 3 of treatment is the worst, because that's when the EMEND wears off). I think I also got Decadron (steroids) and Aloxi. The steroids helps prevent allergic reactions for the chemo drugs and I was also told can help "soften" your body's overall reaction to chemo. It would take probably almost an hour to get all those medications done. I'm guessing it was the EMEND, but I got sleepy during the first round, kind of loopy. This part ended up getting hard to deal with for the following rounds, because after knowing how bad I was going to feel, my body started to anticipate it. So although the first round of getting the treatment was easier, it got harder. As soon as I walked into the office, I started to feel sick. Like the kind of sick that you know its in your head, but your body doesn't think so and there's no getting it out of your head. So for the follow on treatments, I ended up getting sick during the actual treatment. No matter what I tried.

After my bag of goodies, came the actual chemo treatments. During the first treatment, I had the Adriamycin first (sometimes in later treatments I had the Cytoxan first - it depended on what time it was and my nurses schedule). The Adriamycin is the Red Devil. Literally, it's red. It comes in three large syringes that are pushed into your IV over a course of about 15 minutes. The nurse would come in, make herself comfy and inject it one after another. After you get the Red Devil, you will actually pee orange or red for the next few days (depending on how hydrated your are). The scariest part of this whole thing was watching my nurse get prepped at her nurses station. When pushing the Adriamycin, she would come in with a mask, gloves and protective clothing over her scrubs. All I could think was that if the nurse didn't want it to touch her hands or her clothes, she shouldn't be injecting this into my body. If its that gnarly that you shouldn't touch it, its too gnarly to be in my body. If I have to double flush after using the bathroom to be sure, use a separate toilet from the kids for the first couple of days, wash my clothes separate, etc, it shouldn't be being injected into my neck. Point blank.

I didn't really feel any different immediately, other then still being a little sleepy from the nausea meds. So next up was the Cytoxan. This part comes in an IV bag and ran over about 45 minutes. I had the choice to run it over 30 or 45 minutes but since it was my first go around, we picked 45 minutes since it can cause some headaches and sinus pressure (as if you are breathing in really cold air through your nose). Luckily I didn't have much of that for the first go around, but it did start to show up more around Rounds 2 and 3 later on. One of the hardest parts of round one was just not knowing when it was going to hit you. You know its going to hit you. There's no question about that. You just don't know how bad or when.

After getting all 467 bags of my concoction, the last part, which ultimately ended up being the worst part of the actual treatment itself was getting the final saline flush of my port. They do this at the end to clear the line and flush out the port. It only takes a minute, but its gnarly. You end up being able to "taste" the saline as its being flushed, and when you are already feeling sick, that doesn't go over well. After that, its a quick injection into the port of Heparin, which keeps your blood from clotting in and around the port.

After treatment, I was sent home with basically six Zofran (anti-nausea) pills, one every twelve hours for the first three days after treatment, alone with six Decadron (steroids) pills, two each morning for the first three days after treatment. I also got some 'breakthrough" anti-nausea meds (Ativan) that is also an anti-anxiety pill, but that one come to find out didn't really do it for me. After the first round, we asked for something different and got Compazine added to the mix. That finally did the trick!

The following day after each treatment it was back to the oncologist office to get an injection of Neulasta to boost my white blood cell count. The shot was pretty painful, and it tended to burn when going in, but nothing too awful. The worst part of this whole process was that I had to pull myself out of bed, get into a moving car, drive 20 minutes, wait in the waiting room, then back in the car, all while trying to not throw up all over the place.

Now this part is where I might skimp on the details a bit here and there. There were a lot of different side effects from the AC treatment, and its hard for me to go back there mentally and emotionally. So I'll try to describe what I can, but some days I was just in a dark place, and I just don't want to ever go back there. Even if its to just talk about what it was like. 

I quickly learned that for me, my worst days were going to be right after treatment, and then each day got a little bit better. For the most part, each of the four treatments had similar side effects. Some were worse one treatment vs. another, some came at the exact same time each treatment, but overall, it was pretty close. After getting AC, I pretty much had a good three hours after until things hit. When it did, it came pretty fast and furious. I spent most Monday afternoons and evenings kind of locked up in my bedroom. I felt so sick that I didn't want to talk. I just wanted to sleep it away. This was the hardest because I could barely kiss the kids goodnight. I don't know what I would have done without Wes and my mom (who spent each treatment night with us, just in case). Right about the same time as the nausea set in, my sense of taste and smell went crazy. Sometimes, it was just the smell of an alcohol wipe at the office that would make me throw up during treatment weeks. That usually lasted a good week at home. The first round, I could pretty much only drink cold sour things, like lemonade. Water tasted like metal all the time. Any kind of hot tea was awful. I drank a lot of lemonade that week. For round two, I couldn't stand the sight of lemonade. Each week was different. Most times, each day was different. Foods that I normally liked, I didn't want anything to do with. When I started to be able to eat, usually around day three, it was chicken noodle soup. First just the broth, then with some noodles. Each day was just a little bit better then the last, so each day I could drink more or start to eat or sleep less, etc. I did get lucky with the mouth sores, I only ended up having a couple each round, and they usually came the week after treatment. They weren't bad enough to keep me from eating or drinking, but they were there. My fingernails were very brittle, and still are. The first round I had a good deal of leg and hip pain, but that didn't seem to repeat itself too much. Once the first couple of days passed and the nausea started to lift after day three, that's when the fog usually set in. It's very hard to describe, but your brain just seems foggy. It's hard to concentrate. It's like there is something in between the nerves in your brain that just makes it harder to think. It's exhausting. Then the reflux would set in. Each treatment that seemed to get worse, along with the fatigue. One of the hardest parts was just keeping my spirits up during that week, because often, as soon as I started to feel better, something else would kick in and it just felt like every time you got up, you got kicked back down.

The second week after treatment was like night and day compared to the first week. I was in bed for probably the first 2 - 3 days, then at home resting for the full week of treatment. The second week I was back to work, pretty much full time. I still had some digestive issues, mouth sores, smaller things like that. But again, compared to the first week, it was like a walk in the park.

Obviously there is one more side effect that I didn't really touch on yet, the hair loss. I'm reserving that one for a post all on its own.

So, in an attempt to not make this post continue on for forever, I'll start to sum it up. If you made it this far, you deserve an award. :)

That, in a nutshell, is what the red devil was like. One thing that I learned very quickly about cancer and especially chemo, is that its very personal. Everyone is different. Everyone reacts different. A lot of it is hard to describe and explain to loved ones. And it's just as hard emotionally as it is physically. Not just for the person going through it, but for the people who have to watch you go through it. It's hard to see your kids react and change because of what you are going through. It effects everyone around you, and no matter how crappy you feel, some days it just seemed harder to sit there and watch it effect everyone you love. On your good days, your loved ones will have good days. On your bad days, your loved ones will have bad days. But that's a lot of weight to hold on your shoulders sometimes, especially when you don't even feel strong enough to hold yourself up.

I have to say though, it feels really really good to be through the worst. I

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