You Can’t Handle the Truth

Posted: 09/06/2018 in Uncategorized

It’s been almost six months since I was diagnosed with cancer. I had surgery that went fine, but my small cancer was a highly aggressive subtype, though thankfully no lymph node involvement. I get 12 weeks of chemo, 5 weeks of radiation, and a year of monthly infusions, after which I’ll take a bone-sucking anti-hormone pill for 5 years, maybe 10. I have a darling little blog under my name that I post publicly. I wash off the darkness and keep smiling there. I’m going to use this site to say what it’s really like.

Let’s first talk about how cancer and chemo make you feel. Chew up some aspirin with no water. You should experience an awful, bitter taste plus a dry throat and mouth. That starts about 24 hours after chemo. Hang onto it for five days. Now, walk/jog 3 miles without warming up first. That provides the muscle/bone burns and aches, plus some breathlessness. Those are side effects from neuropathy, dying red blood cells, and general malaise. Finally, get a stomach virus for 2 days. Recover from it so that you’re not actively vomiting. But you still are staggering around, dehydrated, finding food hard to keep down. Most things taste as if you had a bad nosebleed. These effects start around the third day and last 4 days. Only by two or three days before you go back to chemo do any of these go away.

NOW, toss in a combination of constipation (rabbit pellets, no matter how much fiber you eat) and explosive diarrhea. Your hands get covered with your own feces in an effort to stay clean. You wash and scrub under your nails, only to find them flaking off. Every time you shower, you gasp for breath and your heart pounds afterwards because it is exhausting (though it does feel nice to be clean, especially around the poop area). The fatigue in my case is from anemia. Not bad enough to stop treatment, but maddening nonetheless.

That’s what it’s like. Every damn week, four or five out of seven days in my case. Some people have even worse side effects. It’s different for everyone, and I’m on an easier cycle than many. I don’t have mouth sores, for example. My doctor is very proactive on treating nausea.

So, feeling like this, shit still has to get done. Don’t think anyone is going to wait on you hand and foot. You’ll cook your own meals sometimes because you’re so hungry and weak, you’re willing to try anything, no matter how weird (I’m currently eating tofu slathered in soy sauce). You might have to cook for others, and the first time you feel bile in your throat because chicken and noodles smells so awful, you don’t know what you are going to do. You can’t whine and complain–“winners” and “fighters” don’t do that. Only needy shrews cry and refuse to get the jobs done. So, you shove your dwindling hair to the side and dry heave in the sink. Back to stirring the noodles. Somebody will likely fuss that you are only walking half a mile a day for exercise, you lazy creature.

People you thought were friends will send you “love and hugs”…yet nothing of substance such as a Walgreen’s gift card for all that Ensure and hemorrhoid cream or a takeout certificate for your family (who are, of course, starving because where’s our dinner?) A few will bawl right in your face, and wow, that makes you feel just awesome. (Err, thanks for letting me know I look awful and am sick?) True friends will fill your freezer full of food for the family or simply stop by with flowers or something pretty or a fun movie. They’ll listen if you want to talk about cancer…or never pressure you to mention it if you don’t. Others will say, “We don’t know how you do it! I couldn’t deal with this!” You’d be shocked at what you can handle. You have no choice in the matter.

Your house will go to hell in a handbasket. I don’t care how anal retentive a cleaner/tidier you are. Piles of dishes, piles of mail, piles of dirty clothes–it’s all part of the package. You’ll want to clean up around your bedside so badly, since you’re usually confined there on rough days, but then you’re gasping for air the second you start tidying, so that’s right out. Dust and magazines gather into cliques.

You desperately try to keep information about treatment and tests together in a folder. Then, your treatment schedule changes, or they want you there at 7:30 am (rather than 11:30) when you have an hour’s drive. Sometimes, providers fuss amongst themselves about what treatment you are getting, and why did it change, they ask, when you see a new nurse or resident? You have no idea. Your mind is still back in the waiting room.

Also, this whole time, you are wearing earmuffs. People’s mere words are hard to understand, much less string into sentences so you can construct a coherent response. You’ll get text after text after text after text. You’ll want to throw the phone against the wall. It’s probably just that people are checking on you with good intentions, but typing one more message with numb fingers is just too humiliating to contemplate because you can’t spell. Especially since you just noticed a wad of poo on your thumb.

You are going to scream at your kids and your partner/spouse at some point. To be fair, they’re going to be bit worried and pretty sick of you, too, with all the driving to appointments and you feeling like crap and not being the household organizer/cook/cleaner/mind reader or knowing why the checkbook and stamps ran away together in a sordid affair to some place you don’t know. My chemo hit at tax time this year. That was a hot mess.

But what about work? Gosh, don’t you wish you were independently wealthy. Because most of us are going to have to keep working at least part-time during treatment, to keep insurance or an income stream. You might have a nice boss and team, who send you thoughtful cards and emails and gift certificates. You might also have a crass boss or co-workers who sniff disdainfully at you the first time you show up with a steroid face and no hair, or ask you just when this whole thing will be done and over…because, really, there is no way you can actually do your job when you are an invalid. See, that’s a catch 22. You *do* feel decent some days and can work. And if you are like me, you must work. A good boss will meet you where you are, letting you take advantage of good days and lay low on bad days. An unkind boss will just be concerned about the bottom line–offering no quarter on deadlines, your mushy brain, or even your frantic emails asking for help. There will be silence and something akin to the sword of Damocles hanging around–will you still have a job after FMLA is over? Annual reviews still occur. Because you did the best you could, but some days, that meant writhing on the bed and dictating a reply to your spouse to send. My advice is if you have a supervisor you trust, let them help you. If you don’t trust them or don’t know them well, tell them as little as possible about your condition. Everything related to FMLA goes through HR, anyway.

And….my train of thought is now derailed. I think I’ve managed to drink enough water and eat sufficient yogurt to crawl to the shower. I’m sweaty and gross. Even though Thursdays and Fridays are my nadir, I put in a 6 hour day from bed, answering emails and phone calls. And so…many…texts. I think the dog might’ve snuck in and peed somewhere. Darned if I can tell whether it’s his or mine, though.

 

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