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I haven’t been able to say it out loud yet “I have cancer.” I say that I have Lymphoma.
As if I don’t say it out loud, I can keep this secret from my body that it already knows?
Of course now I have to say that I have Chronic Lymphocytic Leukemia (CLL)/Small Lymphocytic Lymphoma(SLL), formerly two diseases that are now treated as one. And then explain that despite the word Leukemia, CLL is considered a non-Hodkins Lymphoma.
And that’s after I’m done comforting the people I tell.
How do you tell people you have cancer?
No seriously, I’m asking you.
The way I’m telling people is not working.
Maybe it’s because I have an instinct to try and take care of people. I like to lead with words like “early” and “treatable” as those were the words that were given to me.
Most responses fall into three general categories.
“You’re gonna die but let’s pretend we don’t believe that and pray”
I truly don’t give a crap whether someone thinks a person of data and science like myself is crazy for believing in Jesus. You believe in Love and marriage or breeding or R & B or chocolates on Valentine’s Day. I believe in Jesus. Honestly, BFD.
That said, sometimes I understand why my fellow believers who chose to express themselves in the holy roller way are losing people.
Can we please have one big prayer meeting at my house? Even monthly, I could do that. Instead of all of these wonderful God-fearing well-meaning people trickling in two at a time like hobos to pray for me.
I have no problem with prayers. But when you come to pray for someone’s life? Please behave like they’re not going to die. Especially when the person you’re praying for PROBABLY ISN’T GOING TO DIE. lmfao
And why it several versions of the same prayer? Jesus isn’t deaf you know. He heard me the first time and I already believe in my deliverance.
I sound like such a bitch.
But after you have gathered the only energy you had for the day to answer the door and entertain a non-family-member or non-family-friend coming by to pray for you for the umpteenth time, in full mourning voice?
You start to wonder if they are there for you or if there’s some kind of Holy-Ghost-catching contest taking place in your home that you don’t know about.
“You’re the one with the cancer but let’s make this about comforting me”
Now of course you know this entire vent is to be taken with a grain of salt. And is written in loving camaraderie with my fellow cancer survivors of every stage.
But there has been no time in my life where I have seen more proof that the Universe is absolutely hilarious.
As well as all the sweethearted close friends who actually know me and cried when they found out.
I love you too. But don’t make me cry please! If you cry I’m definitely going to cry – shout out to my Mom for knowing this!
It’s also a blessing to have people love you so much that you tell them that you have a form of Lymphoma and they go all full maybeline ruin on you like…
And it’s like “WHOA. No shorty, me, I have Lymphoma. You’re okay.”
I’m not kidding when I say that I really thought some folks misheard me. My older brother was a particularly touching one. He said “No! Not you, Tinu.”
And I promise you I know it was serious but in addition to being touched I wanted to giggle.
Not me? Do you know who you’re talking to, babe? All the effed up stuff that’s happened to me? No way was I going to be safe from cancer, LOL.
Surprise
The best responses though, are the ones that surprise you. This third category is where it’s at. From people you thought would cry but made a wildly inappropriate joke that is just your humor, to utter silence.
No really. Some people went silent. And I haven’t heard from them since.
Then there are the people who propose an alternative treatment that they swear by but have never tried, and don’t have your particular ailment. I’m used to those people from my chronic pain issues. Thanks for discovering the world’s only untested cure for cancer.
But even if it worked for someone you know, do I look anything like a guinea pig? Do you know my health history. Jeeze.
The other surprise people make up for it though.
The relative that spends God-knows-how-much money to arrive in the United States from 10,000 miles away a month earlier than planned, just to make sure you have a ride back and forth from every single chemo treatment.
Or another who comes with you to every single appointment so you’re not alone to get any form of bad news, or ever be without someone to hold your hand.
Or the one who tells her kids that every hour on days that you’re bummed, that they should give Momo (that’s me) her medicine, which is basically tickling until you nearly pee yourself.
And the ones you aren’t close to anymore, but who keep showing up for you.
Even on Valentine’s Day weekend when they definitely have their own lives and stuff to do. But they bring you their kids or some flowers or advice via a spouse who had cancer anyway. Whether they live 3 miles away or three hours.
Plus someone who was already functioning at best friend level who steps up their game to bring you enticing food because they know you’re losing your appetite.
Not to mention all the friends who bore the news so gracefully, who send you cash and gifts you didn’t ask for, to help arm you for this fight. You have no idea how much you might suddenly need these things, and how great it is to have people there for you to do these things.
It almost makes you into one of those tearful cliches that finds out through what seemed as first to be a horrible tragedy how lucky and loved she truly is.
PS- This is really me laughing at life, not you. However you respond to me having cancer is perfectly fine. But so are my various feelings about it! Just know the biggest feeling I had was gratitude.
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I LOVE THIS POST A MILLION TIMES.
Okay, that was loud, but I really did. And I love YOU, my friend.
One thing I learned when my husband got cancer? Everyone deals with it differently. Every. Single. Person. There were times we felt incredibly supported and times when we felt, “Whoa, what just happened?”
The whole experience was incredibly bizarre and not a little surreal, now that I stop to reflect on it. We had the people who thought he was going to keel over any second, and the ones who couldn’t understand why he wasn’t able to come out for “just a quick brunch” at a restaurant when his white blood count was low. We had supporters and those we had to support. That much of it happened just before I got involved in social media? To this day I don’t know if it was a blessing or a curse.
I was forced to remind myself – over and over again – that every type of cancer is different. That the TREATMENTS are different. And that they are constantly evolving. That meant that even people who had experienced something similar may have experienced something very different than we did at that time. And that people with no direct experience would have little real understanding of what our reality was day to day (and I say that as a caregiver, so I ALSO had to remind myself that this was his journey, not mine).
So thanks, cancer. Could you be MORE complicated?
Spoiler alert: he made it (despite the several times he ate fresh lettuce without washing it – ARE YOU KIDDING ME?!). I have every confidence you will, too. I think the very hardest thing for friends to do is walk that line between wanting to be supportive and standing back to let closer friends and family do their thing.
Your writing is so beautiful and honest.
Please know that I’m thinking of you and sending much strength so that you can KICK CANCER’S BUTT (<– not sure how family friendly this blog is, so keeping it PG). xoxo
OMG Mickey.
Having met your husband I never would have guessed he had cancer. But that’s pre-cancer me talking. Cuz now I totally see it. It has been a huge surprise to see how many open-hearted people have struggled on this path before me. Not that I was expecting a bunch of grumps lol.
Just not people who emanated joy. I believe I’m going to make it too. New complications have come up that seem like this will be a longer journey than I thought. But I’m going to get through this.
As for standing back, Mickey, I know we aren’t all wifed up like me and Amy or Allen or Jill. But you don’t need to stand back for anyone.
Also this is in no way a family-friendly blog. Have we fucking me? LMAO.
Hahahaha! Point taken, my friend.
And point also taken on the hanging back. Know that I’m here if you need anything, a chat, a ride, completely inappropriate humor, Facetime with Shiloh – whatever.
Being who we are it will come as zero surprise to you to hear that humor played a big role in how we dealt with everything from the chemo to the hair loss (“Look! Reverse mohawk ftw!) to even just finding parking spots at the hospital or discovering a simple meal that didn’t repulse him.
Of course, this is right after we completely freaked out (and by “we” I mean “I”) upon learning that his type was also non-Hodgkins – a type called diffuse large B cell lymphoma. I remember further freaking myself out doing online research, and crying, and researching and crying even more and then getting confused and finally just pulling my shit together and putting one foot in front of the other to do whatever it took to get through it.
As you will get through this. I refuse to believe otherwise. xo
PS: When I felt really bad I’d generally cheer myself up by waiting for those days to fight with the insurance company. It was largely useless but remarkably cathartic.
Tinu, the words, in the air or on the page, will come when they’re ready. Whether or not it deserves it, the “C” word — hey, look, a euphemism — has a power we give it. I dealt with mine by sarcasm (and, it turned out, more than a bit of denial of the impact it would have on my psychological health); you WILL find yours. And the good news is you’re finding out that there are people who will take the love they have for you and turn it into actions to support you.
You can do this.
Bob. (hah, the C word! Great minds.)
Regarding dealing with things…. sarcasm? Check. I have anticipated the impact though. I’m trying to get in to see a therapist before chemo starts. Which has been pushed back by a bunch of complicated bullshit.
Everyone has been so supportive. This article is completely in jest, and partly me trying to find a way to share all the aspects of this struggle, especially the funny ones.
You definitely inspired me to believe that this diagnosis was something I could handle. Thanks for that Pepe.
Peace and love to you my sister, and all the love your heart can hold!
Thanks sis. :)
HUGE HUGE HUGS to you. Gently.
Thank you for the huge gentle hugs. :) I’ll return them in person one day.
Yep, folks are funny, kind, loving, empathetic, silly, crass, insensitive, narcissistic and above all, here for you.
Folks are awesome. And of course I know they mean well. People do what they do because they are who they are. I take it personally sometimes but later I remember it probably has nothing to do with me, good or bad.
Cancer sucks. The word is ugly. Saying it is almost like saying a curse word. Having been on my own Cancer tour, and come out “on the other side,” (yeah right!) I send you love and strength and faith. Cancer changes your world, it seperates the “good” friends from the GREAT friends.
So true. I’m eager to hear about your tour if you wrote about it or would like to chat one day.
I just saw this. Like most people, I don’t know what to say except that I’m sorry and you’re amazing. And I kind of wish hallmark made a “cancer really sucks” card. Also, I promise never to refer to your “journey” or tell you that “things happen for a reason.” Neither of those things made me feel any better when my father and sister had cancer. But I will say is that you are a force of nature, and cancer is in for one hell of a fight!
All of those words were perfect. Also this article was totally in jest. I feel lucky to even have people who care to be told. I hope you sister and father are better.
Thank Christ I can swear…how the ever loving fuck did I not know this until now? I am so sorry you have to go through this on TOP of everyfuckingthing else but super NOT crying because I too know that this cancer is no match for the likes of Tinu. Sending love.
Sue babes! Don’t sweat it. I was telling people one by one, and then our group of mutual friends. Then I wrote about it but was too scared to share it or post it on FB.
Then I read an article that basically said the only thing worse than chemo is having to find, catch and tell everything living creature you know LOL.
So no worries. Life is still busy, I still get it, and of course we’re still cool. Thanks for not crying! LOL
“But there has been no time in my life where I have seen more proof that the Universe is absolutely hilarious.”
Geez- this is so the essence of Tinu: A little angst, a little sweetness, a little don’t-bullshit-me, lotsa eye-roll, the finger, the Punk sign. Let me say, Glowy Person, I simply want you to get better. So you can write more of your take-no-prisoners perception of the Universe. And btw your gifs and your subheaders are so perfect. Also pls publish this on Medium as it’s damn powerful. Okay?
Just published on Medium as requested me love. https://medium.com/@tinu/todo-practice-saying-i-have-cancer-3f1b65c01038#.k0ubz7gew – thank you for the encouragement.
Fuck cancer. It is no match for you, my friend. And for all the love that surrounds you, and all the fight that personifies you. We are here for you. And when we screw this shit up, you’ll set us straight. Just know you are loved. And that you are most definitely not fighting this fight alone.
Thank you Shelly. I’m getting great responses from my colleagues, you included. I shouted our group of mutual friends out in the Surprise section. I didn’t know you folks were going to show me THAT much love. I alway except love from you and that lot. And yet I’m always surprised at how much. Thank you for that.
I so agree w/ Shelly.
Bring on the inappropriate jokes.
My aunt played “the cancer card” with my uncle all the time. She’s like, “I get to do whatever I want – my husband has cancer.”
Is this the new Diva card? Whatever. Work it – as I know you will – and you have your maniacal band of cheerleaders behind you.
(waving pot Pom Poms?).
Again – such faith in you T.
Xo
Kkf
Pot Pom Poms! I think I just woke someone up laughing my ass off over here. And look on the bright side – now I have a much shorter case study submission. (INAPPROPS!!! LOL!)
I couldn’t have said it better than Shelly. This made me smile and chuckle a bit. After reading this I feel less awkward about how to respond properly with poise and empathy. Fuck that. We are sooo here for you and i will probably stumble, say stupid things and most probably cry a whole lot. But that is me. One other thing: I have a black book of the corniest jokes in the world. What do you call a woman with one leg!…. Eileen!;). Stick around, I got a bunch of them.
Hey Hessie!! Got your wonderfully fantastic email. Thank you for that.
And girl, yes, the WHOLE point is there’s no right way to respond or be told. Just speak from your heart. I think my favorite answer is “I don’t know what to say.”
Second only to corny ass jokes! I got that one!
Beautiful post! Big hugs to you @Tinu. wishing you all the best.
How do you tell people you have cancer? Just like to did in this post.
If prayers are what you want, I’ll pray, if not no,worries, I just simply want to be here for you. I guess virtually since I don’t live in Washington.
Lots of love and big hugs
I love prayers. I’ll take prayers. I welcome and openly solicit prayers. I just don’t want to stand up in my living room for two hours praying with people who barely know me. LMAO. That’s all.
Well damn baby cakes. Apparently you tell it with a lot of thankfulness, grace, and wit – made all the more striking given how that heavy that bag of sucks must weigh. But, I can only imagine that a woman who has always danced through raindrops can only continue the pattern in this, especially with the veritable armament of love you seem both surrounded in and emanating. In which, please always know mine is included honey sweetie star shine lovely. Certainly, if reciprocity has any part in how the world goes round, you’ve expended more than enough gentle care for others to have won the allowance of that energy back, manifest. And going by your name’s meaning, that seems a point of predetermination that should always win. muah*
OMG BRENDA. Now I’m crying gotdammit. YOU SUCK lol
IMG_7089.JPG
We’ll see if this beauty shows up.
http://m.huffpost.com/us/entry/helen-mirren-wishes-she-told-people-to-f-off-more_us_5600076ae4b0fde8b0cee0fcOkay not so much – here is the link:
That Helen is some kind of rock star, eh?
You know what’s on my list of weird wishes? Wishing that I would 1- spend money on myself first more 2- buy the outrageous but flattering clothes and find outrageous places to wear them instead of saying “where would I go in that?” and 3- do whatever my body tells me, especially skipping.
Not quite there yet because my money hasn’t caught up LMAO, but I’m getting better.
Sadly I have been telling people to fuck off since I turned 40. Not enough. But that’s what the cancer card is for right? SELF EMPOWERMENT.
Love you so much Kathy. I intend to spend a lot more time chatting with you and visiting you.
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Tinu, my bout with cancer took place in 1979 and 1980. My brother, whose stage 4 cancer in 2000 compelled his doctors tell him to go home and get his papers in order, is not only still with us, but marker free. The takeaway? Keep the faith.
Thank you for commenting. I’m still here. I’m more joyful- I wrote about how cancer revealed my life’s joy to me & made life more precious later in this series. Glad you’re both still here.
My “big sister” Leslie P. suggested your blog and spoon concept. I’m already hooked reading your first post and know how I’ll be spending my weekend. I’ll be alternating between binge watching OITNB and binge reading your posts.
I was diagnosed with several things this past month after being bedridden and sick for the last two and a half years and being misdiagnosed with Lyme disease. It’s so fresh and new, and of course overwhelming so I am very happy that I have been steered in your direction.
Sorry for the rant, but it’s just nice to “meet” you.
It’s nice to meet you too! I hope my writing is able to help you. Been slacking lately but I have new posts coming up soon. Mostly Spoonie stuff. If you go to Twitter, I’m on &Tinu. You could meet the community too! Say hi to Leslie for me!