About a year and a half ago I was diagnosed with NHL, specifically Diffuse Large B-Cell lymphoma. At that time it was all spleen-central, and they took out my spleen, and all seemed fantastic, except for not having a spleen.
For those of you being all “Pfft. Spleen. What does a spleen even do?”, well, you’d be surprised. Your spleen isn’t sitting there playing cards with your appendix and watching soap operas. The spleen is a busy little hub of the lymphatic system, kind of screening out the big stuff before it gets sent any further. So, not having a spleen has meant I have gotten sick easier. If you have had a cold in the last year and half, I’ve gotten it from you, even if you live in stupid far-away-from-me places. (I’m looking at you, Wisconsin.)
But the thing about lymphoma is that you’re pretty likely to come down with a case of the cancer more than once. And this time around, there was no spleen to take care of the dirty work, so it’s all R-CHOP and radiation for this gal.
And now I’m bald and I have a rash on my head, and holy balls, you guys, I am really damn tired, and barfy, and my bones hurt really bad. I also noticed a marked increase in my complainy-ness.
But, I’ve been closed mouthed about this, and here’s why. YOU! PAY ATTENTION! I’ve been quiet about this becaaaaauuuuuse…
- If I get one single (((((((((hug))))))))))) about this, I might scream. I know you mean well, and you can’t hug me in person, and you want to send positive thoughts and all of that, and I swear I’m trying to be positive myself. But please, please, don’t bracket hug me. The cancer is making me feel pitiful enough. Which brings me to…
- I don’t want anyone to treat me differently. Don’t laugh harder at some lame joke, or look at me with those eyes you make when you look at a person who is sick. Don’t treat me like I’m sick. Beeeecauuuuuuse…
- I don’t want every conversation to be about cancer. I know, you want to know what’s up. You’re concerned. And know what? I’ll totally talk about it when I need to talk about it, and I promise you that if there is anything to tell you, I will tell you. Becaaaaaauuuuuse…
- I’m scared, too.
Most of the time I am keenly aware that I am kind of a larger than life person. Sounds a bit ego maniacal, but I am aware that I have had an extraordinary life, and that my life has impacted other people and will continue to do so. That’s no small thing. I have so much to accomplish, and I know know know that cancer isn’t going to kill me or stop me.
But sometimes I’m still scared, because I am human, and it’s hard not to be. So, if I’m not talking your head off about whatever phase I am at in my treatment, it might be that I need to process it before I can open my mouth. Wait for me. You know I’ll come around.
And yeah, I’m sorry that I didn’t tell you personally. Don’t take it to heart. Get mad if you need to, but, honestly, how can you stay mad at me? I have cancer. That’d be rude as hell, yo.
So, look forward to me cracking jokes and posting photos of my disgusting skull soon enough. Much love to all of the people in my life. I know I don’t make stuff easy sometimes. Too bad. Quit your whining and make me a sandwich.
I will totally make you a sandwich. But only because you’re generally awesome. Plus I’ll make myself one while I’m at it.
What were your first symptons? The reason I ask is becuase I have Sjogrens Syndrome….which makes it easier to come down with lymphoma, because of this, and I’m just not sure what my earliest symptoms would be. That is why I’m asking you this. What’s the prognosis for you?
You hate eHugs, and that’s fine. Words on a screen can never convey your thoughts as they would in person. That’s a hard feat to do. (Props to all you writers out there) Nikol, no pity party for you, but my thoughts are with you, if I see some way I could help in anyway (as broke as I am) I will offer my help. I think all of us who consider you a friend feel that way.
You have touched many of us via corny jokes, advice and all around awesomeness. I am so thankful to have met you and know you exist, continue staying strong and keep us updated, you know how damn nosy this makes us. Alrighty, no more mushy talk. I think I’m making myself sick. How about a heart? Is a heart emote ok?
Fuck it <3
I suppose, when people ask if they can help in any way, the biggest help (for those of you local) would be to spend time with Trast. He’s really an amazing kid, and he’s been really helpful and wonderful. I love him a ton. And I want him to still go out and have fun times. Last weekend, Dan took him to see a live show. He had a great time. I want more of that for him.
So, that’s how people can help.
Cold night sweats, being really tired and worn down.
Thank you, Nikol. After I posted that last comment…..I thought perhaps it seemed rude. I was also going to ask how Trast was doing….but I got my answer by reading your post. I’m glad he’s there for you. I have to go back and see the doctor every 2 months, just to keep an eye on the situation. I will respect your wishes….but it’s quite hard as I’m a very huggy kind of person……lol. But I will refrain from that. Scott could use a few hugs, as, understandably…….he’s quite worried about you, too.
By hugging Scott, you’re hugging me.
First of all, I love that captcha for this entry is devo. I think it’s a sign that you need one of their cool red hats to cover your bald head.
Another weird thing – when I just tried to type the work hats, I typed hates. Must be because I hates that you have to go through this.
I miss you and I love you, but not because you have cancer. I miss you because I always miss you and I love you because I have loved you since we first met.
Tell Trast that next time he comes to Wisconsin he should play D&D with Ashley and her crew. The boys tend to think that they are pretty hard core, so Ashley makes sure they always have pink cookies to remind them that they’re not that bad ass.
A spleen is like a spam filter.
Bald, rashy and prickly… yet somehow manage to be absolutely, fantastically beautiful. {bitch!} ;)
Then I will give him many hugs!…….:)
hi nikol first of all i don’t know where did you get this information about spleen, from what i studied and what my dad told me -he is a doctor- the spleen crates blood cells when we are a fetus and then the spinal cord do that job, yes it got something to do with the lymph system but it have a very small part and it problems are more then it uses so my father says if there were two solutions and one of them is to remove the spleen they will remove the spleen before even considering the other solution because it is so easy and it doesn’t have side effects. second of all you are right it will not stop you cancer it does nothing to people if it were discovered and cured early and we have it in the family two BC it is a lot worse well in fact it is the same but it is difficult for a woman to except it so it is nothing to worry about have good day
Thanks. I think.
I could tell you that some people very close to me are dealing with various cancers and I’m getting really good at leaving that subject alone. I could tell you that living with Crohn’s disease, I know firsthand how upsetting it is to feel reduced to being a condition to be monitored instead of a human being. I could even tell you that you totally rock the shaved head look. I could tell you any of those things.
Instead, I’d like to tell you a joke.
A vampire bat came flapping in from the night covered in fresh blood and parked himself on the roof of the cave to get some sleep. Pretty soon all the other bats smelled the blood and began hassling him about where he got it. He told them to go away and let him get some sleep but they persisted until finally he gave in.”OK, follow me” he said and flew out of the cave with hundreds of bats behind him. Down through the valley they went, across a river and into a forest full of trees. Finally he slowed down and all the other bats excitedly milled around him. “Now, do you see that tree over there?” he asked. “Yes, Yes, Yes!” the bats all screamed in a frenzy. “Good” said the bat, “Because I sure as hell didn’t!”
(I’ve heard it elsewhere, but I was too lazy to reconstruct it myself so I copied and pasted from: http://www.downloadtopc.com/joke/152/1/Vampire_Bat.html)
Nikol – hey, been there- done that….you’ll get through it and still be the funny and beautiful person we all enjoy. I’m too far away to make you sandwiches so instead, I’ll toast you with alcoholic drinks and await you to make some great bald jokes. We love you, ok? So get better!!!
Chin up, champ. Rob, Adam and everyone out there believes in you:
http://youtu.be/VZ2HcRl4wSk
Sidenote, that’s utterly shithouse news to hear. I;d totally send you a top hat if I could because a) it’d protect your head from the sun and b) Please. Top hats? Where is the downside?
Fierce with hair. Fierce without hair. You’re just fierce. And a total fucking inspiration. You go girl.
……………….
Consider those a donation to Aws Najjar’s post. Use them as you see fit.
Your various videos and columns have made me laugh over the last 5? years. I hope I can provide you with at least one.
Not a hug – promise. I know how being hugged while on chemo is incredibly suffocating. And virtual hugs – while well-meant – annoy the shit out of me.
Go ahead, be complainy. Be whiney. Be scared. Be strong. Be whomever and whatever you want to be at any time you want to be it. This is about you.
Just know you got empathy here should you ever need it.
Thanks, Lori! You’re the best.
I just wanted to say, you look great bald! I mean you look great anyways but yea. Not everyone can pull off bald and you are doing it!
<3
Rose
I just want to give you a heads up.
Most of the time I’m going to be normal, like you want. I’ll come over and we’ll go grocery shopping and it’ll be all “hey, that baguette looks like a dick.” “Hey that cloud looks like a dick.” “Hey look I’m touching this salmon with my dick.” “Look, that restaurant is called ‘Nguyen Phuc Dong.’” Etc.
But then some night I’m gonna get real drunk and I’m gonna call you and I’m gonna say shit like “no matter what happens, Nikol, I’m gonna be by your side supporting you and we’re gonna FIGHT this thing and we’re gonna BEAT this thing because you’re a FIGHTER who BEATS THINGS. My Grandmother’s cousin had cancer and she wen to Mexico and they did some crazy prayer with these sacred cactuses and you know what? She got CURED! I think so, anyway. Nobody said anything about her being dead and anyway she was pretty old. But LANCE ARMSTRONG, Nikol, he RODE A BIKE WITH ONLY ONE NUT which was probably EVEN BETTER for him because those bike seats really hurt your nuts, he was only in fifty per cent as much pain which probably gave him THE EDGE. To WIN. Like you’re gonna win. Against the Lymphoma.”
I’m gonna be pleading and weeping and huge gouts of BLAIR WITCH crying snot are gonna be spraying out onto my phone and it’s going to degrade into shit like “WHHHYYY, GOD, WHYY?? TAKE MEEEE!!!!” I’m gonna scream like a girl and a murder of crows will startle from a tree and the camera will just crane back and back and back until I’m just a little fist shaking speck weeping and snotting into my phone.
And what I’m asking you is: forgive me, when this happens. Let me have my one little moment of girly crying and then we’ll get back to talking about dicks.
Wanna know what’s ridiculous?
You just made me cry.
Probably some left over Whitney grief.
The greatest love of all is dicks, and you found it inside of you.
[...] so let’s take a minute to be happy about remission. Around a year ago I came clean with y’all about the whole cancerous cells mutating thing that my body was doing. It was like my lymphatic [...]
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