What it feels like to have the big “C”

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Now that I’m four rounds into my chemotherapy (five rounds…as of this coming Friday), I feel like I have a pretty good perspective on what it’s like to have cancer. And it’s interesting because I can compare and contrast my experiences with others who have cancer and more often than not, it’s usually not the same. Sure, I might find a few people that are my specific cancer and my specific stage, but even then you might experience side effects differently because you’re two different people. So here are some FAQs I came up with to get at the heart of what it feels like to have cancer, but really what it feels like for me…and these experiences may or may not translate to others.

Is cancer painful?

For me – the symptoms I experienced before I knew I had cancer were painful, at times. As I mentioned in an earlier post, I was on a continuous stream of Advil or Tylenol for months to counteract the pain I had in my neck, back and shoulder. The cough and pneumonia-like symptoms didn’t hurt as much as they were annoying and made it hard to breathe. But drinking alcohol was the worst – that produced excruciating pain at times. But luckily that was something I could give up pretty easily when I started to notice the trend.

After going through chemotherapy, though, those symptoms all went away. So right now I would say even though I might still have cancer, there’s no pain associated with it. The only pain – if I experience any – is a side effect of the drugs I have to take.

Do you get emotional?

Not really. To be honest, my emotions were way more out of whack before I knew what was happening to me. For months I had tried to find answers to what was wrong and each new failed attempt to figure it out set me on an emotional rollercoaster. I just wanted answers! The day I was diagnosed, I cried a little but honestly, I was just really relieved to have answers. Granted, it sucked that the answer was maybe one of the worst I could get…but it was an answer! And that meant there was a path to recovery that I could begin, regardless of the fact that it would not be an easy path.

I did get pretty emotional on the day where I got my staging, got to go over my PET scan with my oncologist and also had a bone marrow biopsy all within the span of two hours. Since that day I’ve had some fleeting moments of self pity, but they are brief and really just a reflection on wanting to be done with chemotherapy – not based on some sense of what will or will not happen in the future.

What’s the status on your hair?

Glad you asked! It’s still hangin’ in there, surprisingly. I thought I’d be bald by my third round, but I am far from that and I’m about to go into my fifth round. It’s cut very short, as I revealed in an earlier post, and I’m still slowly shedding, but it seems like there is still a lot of hair sticking around. The top is getting a little more thin which may result in a George Costanza type look, but the sides are still quite thick. I keep expecting that I’ll wake up to clumps of hair on my pillow, but that hasn’t been the case yet. And that also means I still have my eyelashes and eyebrows – which I’m REALLY hoping stay throughout the course of chemo, but I’ll feel lucky to have them for as long as I can.

Are you nervous about going bald?

Um, yes. But now I’ve had so much time to get used to the idea that I’m more okay with it now than I was before starting chemotherapy. So if it happens, it happens. I have plenty of things to cover it up with, so I’m not stressing about this.

What’s the worst side effect of the chemo drugs you’re on?

By far the worst is nausea. That is a beast I have to tame on a daily basis for a full week after I’ve had chemo. I have a lot of meds to help me do that, but some days even the meds are no match and I just have to tough it out. But at least I’m not vomiting.

After that – constipation. Wow. I had never had a problem with constipation before chemotherapy and it is NO JOKE. The good news about this side effect is that it’s very easy to get ahead of. My best friends are Miralax and Coalesce, these days. But the chemo drugs have a cumulative effect, so where I used to have to only take it for a couple days after chemo, now I take it every day…even during the good weeks.

Finally – mouth soreness. I have such a hard time describing this because I don’t have mouth sores…it’s just that my mouth hurts for a day or two…four or five days after chemo. Water becomes painful to drink. Everything becomes hard to eat. But this side effect is lessening. This past round it was way more tolerable than previous rounds. So who knows – it may or may not be an issue in the future.

Other side effects? Sometimes a brief pain in my chest or lungs, but usually pretty fleeting. My fingernails have more hang nails and are brittle. Hair loss, obviously. Dizziness if I stand too quickly. And some other brief things, but for now – this is all that I’ve experienced so far.

Are you worried about dying?

Well, I’m not immortal…unless there is something my parents forgot to mention to me. So yeah, I guess I’m worried about dying like any mere mortals. But no, I’m not exceedingly worried about death because of my current condition. I certainly don’t feel like I’m dying. Even when it’s a bad week it just feels like I’ve come down with a nasty virus. So…basically…I live each day by how I feel and I have yet to feel like I’m on death’s door, so I’m just going to keep going with that. And to be honest, it’s just hard to even think that I won’t come out of this okay. I don’t know where this optimism comes from, but it’s usually there, even on the bad days, so I’ll keep it up as long as I can.

How do you physically feel most days?

Well, it’s 50/50. After chemo? Physically I feel like I’ve been hit by a truck. I can move around, I can get stuff, I’m mostly self-sufficient, but I just feel awful. Mostly this is from the nausea. Around a week later, I start to feel back to normal. I feel like I should get up, get ready, and go to work. Like, my life is just as normal as yours…and it’s weird to be sitting around the house when I feel this good. Which is why I get weird about being productive because I feel bad that I’m sitting around the house when I feel this good.

Did you lose your appetite?

I lost my appetite for the couple months before I got diagnosed. I don’t want to say it was great, because obviously I was super sick and kept trying to trick my body and mind that I wasn’t…but I did lose ten pounds and was at at weight I hadn’t seen since high school. Yes, I was sick and getting the weight off like that made me feel weak and not great, but secretly I liked being at that weight for very vein and selfish reasons. But losing more would be really bad – especially while doing chemo. However, I don’t have that issue. After the first round of chemo, my appetite was back and now I eat WAY too much. My doctor and husband say, “There’s no such thing as too much when you need to keep your strength up.” But like…maybe I eat too much. I’ve put back on almost all the weight I lost (harrumph) and the last two weeks I’ve been really into binge watching shows and lying on the couch, generally. I’ll get back to walking soon, but with this round of treatment I allowed myself a lot of time to just lie around and not be productive. And nausea has the opposite effect on me. I want to eat more to fill the void and this happened when I was pregnant too. It was like I was really eating for three…not two. So yeah, appetite is great. Maybe a little too great.

What’s the family dynamic like now?

A couple things have changed in our routine, but mostly everything in my immediate family (like, the people living in my house) is quite normal. We all still get up in the morning. I still play with my son and converse with my husband every morning and every night…but maybe a little less so the first few days after chemo. Bedtime routine falls to my hubby most nights, but when I start to feel better I try to help out a little more with that. But while my husband is getting ready for work, I still make our son breakfast and help get him dressed and out the door. I don’t do daycare drop offs or pick ups anymore – too much of a germ fest. So hubby does that or family or friends help out with that when they’re in town. And then little man gets a bath right after he comes home so we can limit the spread of germs in the house. Throughout all of this, little man goes about his day like normal and only occasionally asks me when I’m going to have “nowhere hair” (a reference to a book we got him explaining the hair changes). I highly recommend it.

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But check back with me in a couple months…

Today, this is where I stand. Tomorrow? A couple rounds from now? Who knows what could change. But today, all is as good as it can be…given my current situation. I’m not going to call this my “new normal,” because it’s more like my “suspended normal.” This is my normal…for now. And I’m just as nutty as ever. Any other questions I can answer? Did I miss anything?

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5 thoughts on “What it feels like to have the big “C”

  1. Truly there is no end to the emoji’s is there? 🙂 Great post. I was thinking about calling you today to get filled in, but this did very nicely. Just kidding, I will still call! 😉 I am surprised your hair hasn’t fallen out yet…your hair must have a very strong attachment to you and is like “whatever, Jamie and I are NOT parting, no matter the drugs that descend upon us”…or something like that. I remember I lost my hair right before my 2nd treatment (and my treatments were 3 weeks apart, so it was pretty fast acting). Talk to you soon! (Oh, and I need to get on snapchat…did you make that video with it? I am so non technology savvy!)

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