Before I actually started chemotherapy I spent enormous amounts of time searching the Web for articles, blogs, anything that would give me an idea of what it would be like. I never expected that my experience would be the same as that of others, but I just wanted an inkling as to how the process would work. What happens after I arrive? Does anything feel different? When do side effects start? Would it hurt? What happens after you leave? Are there food restrictions? Some of my treatments are done over days at the hospital, how would that work? Do I pack a bag? Can I wear my own clothes? Can I leave my room? What happens over those 5 days and nights?
I found a few things and they were quite helpful. Things I remember from those searches that have served me well include:

• V-neck shirts – Necessary for medical staff to access the port to which the IV is attached.
• Glob on the Lidocaine – The numbing lotion prescribed comes in a tube. This basically makes it NOT hurt when the needle accesses the port. Glob it on! No need to be sparse or conserve supplies; they’ll give you more.
• The medications entering via the IV don’t feel like anything at all.

These were helpful. Also helpful was the class we attended before the first treatment that talked about side effects, how to manage things, and what to expect. Unfortunately, you go to that class when you are SO overwhelmed. I remember being awake in the middle of the night after that class sitting in the living room crying. Kathy found me and when she asked me what was wrong, I sobbed, “I don’t remember! There was something I was supposed to do for 48 hours and I don’t remember!” (The answer, by the way, is double flush. If you’re receiving chemo, you double flush up until 48 hours after the chemo ends.)
The reality is that the nursing staff will never leave you in the lurch. They will always repeat information until you are comfortable. You have tons of papers and help sheets to read through when issues come up. Still, I feel like there are things I learned that I wish I’d known – if only because I like to know what to expect or not expect, or to just not feel like whatever I’m experiencing is crazy.
It’s also nice for caregivers to know what’s going on and what to expect. Right before a treatment or on the day-of friends and family are often worried for me. They might look sad, or concerned, or contact me on that day with a “good luck” or to check in to see if I’m still doing okay. What I learned during my experience is that treatment days are fine. Please save the worry and check-ins for 2-3 days after a treatment ends. That’s when I most need the reminder that I’m not in it alone, and when I am least able or willing to reach out and ask for the help or company.
The problem is that when I’m feeling fine, I’m fine. But I’m like Jekyll and Hyde. When I feel good, I tend to just not think about the days when I feel like crap. I forget to tell you that I wished for your hug and energy days ago, because once I’m out of that, I just don’t think about it. And, honestly, it’s the smaller percentage of my time.
So, I was thinking about how a treatment cycle goes and thought I would try to document it in some way. There are two types of treatments: One Day Outpatient and 5-Day Inpatient. I’ve most recently completed a 5-day inpatient and have the very long, boring details in a separate page. My hope, as I’ve said there, is that if someone else in the world finds themselves search the Web for just a hint of what it’s like…what they are going to be going through with chemo…maybe they’ll run into it.
The shorter version is this:

• During treatment I’m mostly okay. I get a little more tired on days 4 & 5 of the 5-day treatment; I blame that mostly on not getting enough sleep at the hospital, but I suspect it’s the chemo, too.
• The day after chemo ends, I get a shot of Neulasta. It won’t keep the white blood cells (my neutrophil cells) from dying, but it does help them bounce back more quickly afterward. Neulasta can cause bone pain, particularly in the legs and sternum. For reasons no one can explain, taking Claratin (yes, the allergy medicine) for 5 days helps – starting the evening before the injection. I’ve never really experienced the bone pain, but I’ve always taken the Claratin. So, yeah, I’m willing to take a medicine someone says will be helpful even though no one knows why it is helpful. Blind trust in nurses, they do this a lot, they know things.
• About 24-48 hours after a treatment ends, I get a horrible back ache. Horrible. Painful to the touch. Do not hug me then; don’t worry, I’ll let you know. Tylenol doesn’t help. It’s gone 24-48 hours after it starts.
• Nausea is what people worry about, but I don’t get it much. When I have, it feels more like motion sickness than plain old nausea. Oddly it helps to eat. Makes no sense, but there it is. By this point (more than 2/3rds done) I sort of know when it’s going to happen (just before dinnertime during the 5-day inpatient treatment) and try to make sure to have dinner earlier than later to avoid it.
• Fatigue is the greatest side effect. Also the most annoying. I have so many posts about fatigue, it’s not worth going into.
• Chemo brain, it’s real. If I’ve known you for years and can recount your family history but forget your name, I’m sorry. It’s the chemo.
• The day I most want company is the day I’m least willing to ask for company. Yes, it’s weird; I annoy myself, too. Sometimes, it might be because it’s backache day (see 3^rd bullet) and I probably just don’t want to put on a bra.
• I tire more easily closer to treatment days; it gets better as the days go on. After 12 cycles of treatments and 5 to go, I tire more easily even at the end of the cycle. Even though I feel good, by the end of the day, I’m pooped. And if I’ve been on my feet a lot, I’ll poop out a little earlier. Still, I’m fine. We all get tired. I just get tired a little more often than you.
• In the end, for an average cycle, there’s really only about 2 days when I feel completely like crap, another 2 where I’m just “ick,” and the rest are okay but with fatigue/tired or I just have no immune system so I’m staying at home more.

At this point in treatments, the chemo is beating up my bone marrow. Bone marrow does 3 things that I care about these days: production of red blood cells, white blood cells, and platelets. I honestly don’t know if it does more; these are the things we count. It’s just getting harder to bounce back. The reds are a constant throughout this adventure because, when they are low, they impact my energy levels. I “feel” when reds are off. The others? I don’t feel any different. So I might be feeling good while the numbers aren’t what they should be. My platelets are the current culprit. They don’t grow back as quickly as they once did. If they are too low, I’m at risk of bleeding (and not clotting). I bruise easily. And, low platelets delay treatments until I have enough of them to withstand a treatment. It means things can drag out a little longer than we hoped, but we’re still on track to get through all 17 cycles and still going for cure.