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About midway through my Lymphoma journey thus far, I developed a kind of psychic ability, a superpower if you will.
My super-power is that I can tell when people have a super-rachet-ass question to ask me, but love me so much that they don’t want to risk being rude to ask.
By the way, if you don’t know how to ask me something without it coming out rude, silly, if we’re any type of friends, just say that, then ask.
I look at intentions. Even if I get upset, I’m not going to de-friend you or anything if I perceive your intentions to be good.
So today I want to give the short(er) answer to some of these questions, then get into more details another day.
For example, I can give you a brief summary today about why it’s so hard to visit me if you’re a friend.
Then if you’re one of the people who found this blog when Googling for tips, I’ll link them to my “living with cancer” series of posts as I create them, so I can give you my perspective on how to deal with the offense some people take at this, without losing the wrong friends.
Clear as mud, right? Well I call chemo brain, so suck it.
PS- If you don’t see your question here and you want to risk being rachet in public, without the potential of feeling the force of my rage, just leave a comment.
A CIVILIZED comment. I nuke trolls and jerks.
Here are the top questions about this cancer that you don’t know how to ask without being rude.
There are many more questions.These are the most rachet ones that I can answer in less than a half page each.
Wait, so what IS the deal with visiting you?
I know it’s weird right?
I want to see people but then I rarely go out, and I cancel a lot when you try to come over. Let me explain why that is.
One of the symptoms of Lymphoma is anemia, which makes you super-fatigued.
I don’t mean I’m a little tired.
I mean, when I wake up in the morning, even though I really have to pee I can’t spring out of bed, even after the meds and mega-vitamin doses got rid of that draining-out-my-life-force level of fatigue.
Nah, I have to wait there until my body cooperates and collaborates with my mind.
On top of that, once the steroid leaves my body after chemo, I’m exhausted when I wake up. I rarely get enough sleep, and my body is healing.
What’s the big deal right?
You’re tired sometimes too, so you may not get it, especially if you want to meet me out for a quick drink. (h/t Mickey Gomez.)
The best way I can explain it is, this isn’t normal tired. This isn’t even I-worked-all-day-then-came-home-and-cared-for-infants tired that new parents feel.
(I was the primary caretaker of toddler twins 24 hours a day during my sister’s pregnancy with her other twins. Fist bump parents.)
This is, I-can-barely-move fatigue. This is the type of energy-drain where if I have to be at the doctor’s at 9:30, I have to get up at 5:30 because every five minute activity requires ten minutes of recovery.
Literally I get up to brush my teeth, then lay back down. I actually fell down in the shower last month. It was the only thing I did all day and my body was like, screw you.
Yet at the same time, confusingly, I have this new spark of energy. I feel alive again since treatment started – including chemo.
But there’s a difference between energy and stamina. I nearly always have the energy to get up, cane-assisted. I often only have the staying power to get to the bathroom and back though.
Furthermore, it’s unpredictable.
If I’m already up and about, I might ride with my sister to the store or a relative’s house. But when I get there I will need a nap and probably won’t get out of the car.
So yes, you may see me out and think, “this heifer seems fine to me. Is she throwing me shade?”
No.
I’m probably also scared of getting infections. My immune system was already compromised before I got cancer. I’m not neutropenic or anything (* this is how you can tell I have been writing this for a month, as now, during the final edit, I am)
But the struggle is real. This shit is not a game.
I went to a slightly crowded place ONE TIME for my birthday and was in the ER the next night, with a subsequent cough that has gotten better but still hasn’t gone away.
My birthday was in April. It is July.
Besides, if you know me, you know I’m diplomatic but not subtle. If I don’t like you I’ll find a way, at some point, to tell you to fuck off in the nicest way possible, then progressively more blunt if you don’t get it.
Visitors are hard to deal with when fatigue levels are unpredictable.
Which is still okay if you can get in the house. But if you pop by, and no one else is home, and I can’t get the door because I can’t descend the stairs, you can see how having people come over unannounced might be a slight nightmare.
Especially if I’m coping and/or healing by sleeping all day and I’m in my detox-sweat-soaked nightgown and it’s 3 in the afternoon.
Why do you have hair?
The vitamin theraphy, targeted therapy, plus chemo cocktail my oncologist and I chose, due to my prior health conditions, doesn’t cause hair loss in something like 84% – 98% of people.
Also. Um, you’re still kind of fluffy
OMG, I keep forgetting to tell you.
So you know, I already had issues with my weight due to the chronic pain issue. Most people think it’s the other way around, that I had the two chronic illnesses because I’m overweight (not fat! Whole other essay).
Nah. It’s hard to lose weight when you can’t move and only get hungry once a week. Metabolism? Shot.
Now did I get chunky from overeating?
Yes, during a year of depression when I was treated with some horrible drugs for my back pain for about a year, flat on my back except when I went to the bathroom?
I gained 100 pounds. Some of it was from not being able to leave bed to burn the minimum amount of calories I needed to burn a normal weight meal plan.
But when this made me depressed I a- couldn’t afford to eat right or to pick it up/have it delivered to where we lived b- I often indulged in shitty food to feel food longer but also to self-soothe. Food, conversation and TV were my only outlets.
But then I lost 83 of the 100 I gained.
Not that I should have to explain myself to people or that it’s anyone’s damn business or that I’m not, quite frankly, damn good looking for someone in their 40s, my health notwithstanding.
But you’d be surprised how much unsolicited advice people want to give you when you have cancer. Or chronic illness for that matter. As if I wouldn’t just do the solution of losing weight and exercising if it was that simple.
Because if I’m overweight – it HAS to be because I’m lazy.
You don’t know what people are going through. Most of the overweight people I know got by it honestly, from not losing weight after a pregnancy, or a short period of poor choices in youth, or poverty (you try choosing to buy less meals that are more healthy for your family, instead of stretching that food as much as you can.)
You don’t know what people are going through. Politify your pie hole.
Anyway, to go back to the question.
Part of my treatment plan is a steroid. And I’m back on mild pain meds. So I’m not just not losing weight, I’m bloated and puffy about half the month, for various reasons.
Yay cancer.
That equals water weight plus steroid weight, plus sometimes I eat fast food, chips and ice cream and onion rings ok?
A lot of the time things don’t taste right and I have no appetite. When I have one I eat a lot of whatever is available and affordable. But I do try to eat right 5/6 days a week.
Why are you so annoyingly chipper? Can’t you just be mad at God like a regular person?
Because I have a lot of questions for Jesus and I may hae 2 to 9 years of lead time to write them all down. If not I still made the list for later!
Okay seriously though.
Listen, everyone deals with tragedy and trauma in their own way.
If you haven’t struggled in your life, getting cancer might knock you on your ass for the duration.
Even if your whole LIFE has been struggle, cancer might knock you on your ass for the duration.
Myself?
I’ve had over 20 years of practice having an invisible disability that I pridefully hid from my family when I could, 9 of which was in denial once it got too bad to try and hide.
So I was just starting to overcome the unnecessary shame and embrace my new life situation when I started having the cancer symptoms.
As I mentioned in the last post about joy creation, knowing I have the type of cancer I have is the kind you fight back against for years made me decide how to spend those years.
I’ve cried enough tears, had enough pain before this to last several lifetimes.
And it’s overwhelming sometimes. And I cried to my mother just the other night during what I’m now realizing was not my first panic attack.
But when I get out of those moments of being overcome, and I can actually CHOOSE whether or not to be happy or sad?
I’m going with the snarky laughter over whatever tragically comedic moment I find myself in. I’m taking that over being sad any day of the week.
Barring clinical depression? I’ll continue to do that. Wouldn’t you rather laugh than cry?
Do you have other rachet-ass questions? Do people ask you weird stuff? if so, please respond in the comments. I’d love to hear what other weirdness is out there.