I keep wanting to start this post with.. “a brain surgeon walked into a bar…” and then finish that sentence with some sort of witty or undeniably hilarious joke… but I have no jokes. And really, I guess I don’t have that many emotions about this whole thing at this point. I’m just bummed. Do you guys remember that incidental/accidental/whatever brain tumor they happened to find about 7 months ago? I never really followed up on that too much. I mean, it was a bit hard to really follow up on it when I was being poisoned with with c. diff., you know? So the lump sat there. And I wasn’t really too worried about it. I had ten million other health problems going on to worry about. And a new lump, when I already have ten million other lumps, well, it wasn’t on high priority to me. I mean, I know it should be, because a lump in my brain is different than a lump in my breast, but still, again: I was busy.
So a good chunk of time has passed and whether I liked it or not, I knew I would eventually have to see a specialist. And so I did. We headed to Miami, yes for a bit of a wonderful getaway, but also to meet with a neurosurgeon— you know, someone to really look at the films/cd/whatever and know whats going on in there. And so south we went. And we woke up bright and early on monday morning to meet with a doctor. And while I can be a huge pessimist at times or incredibly anxious and worried, I actually wasn’t too worried about this. I genuinely thought I would see the doctor and he would say, “so I looked at the films, but the lump is harmless and not much to worry about, let’s just follow up and see if things change.” But no, that wasn’t the response I got. Instead, it was a very stern and direct, “that needs to come out. you’re going to need surgery.” And not just any surgery, but the most serious sounding kind, brain surgery. I think I mostly felt disbelief. And a bit of fear. And sad, really sad. I don’t want to deal with the medical system anymore. I’m done with it. I’ve been done with it. I have no trust in it. And to be told I would have to lay on a table to have my head sliced open. I mean, I don’t want to sound vulgar or aggressive in thinking, but crap, I don’t want my head freaking sliced open. Or how Alex put it so kindly one morning, “I was looking into the surgery, it’s pretty easy, they just drill a small hole in your….” NO, I DONT want to hear it. There’s no way. And then to spend another night in the hospital? And hope that everything went okay when there are so many awful things that can happen in surgery and in hospitals? I can’t deal with that. I really can’t. And maybe this surgeon might be the best. Maybe he’s incredibly talented, I mean, I’m sure he is, but I still in no way want anyone cutting any part of me open, especially not my head. And we were told by the doctor I saw, to go get lunch and come back at two pm to meet the doctor who would be doing the procedure, the one to discuss everything and explain it all a bit more. And I debated. Do I want to get lunch and come back? Or do I want to leave? Just leave. And yes, most of me wanted to leave, but I know the reality. And even though I’ve raised my white flag long ago when it comes to my health, that I am still going to have to face this.
So we grabbed food and went to the hotel to check out. I was handed no more coconuts. I was to go back to another part of the hospital and learn about what my procedure would look like– would it be soon? Would it be later? What would it entail? We sat down in an office this time. And the second doctor agreed, that it would absolutely have to come out. The bit of good news, it doesn’t look cancerous. Finally, good news. But that it was in fact pushing down on a nerve– and squished between another. That the ringing in my ears could have started from this (though I don’t believe it has) or my vertigo could be caused by this. That I might notice a bit of a twitch or spasm— which I do, when I first wake up in the mornings (but not at all during the day). Or that I could have difficulty swallowing or muscle weakness in my face and it could cause my face to droop down forever. And just a bunch of other mostly superficial problems. And I told him, if I only had to worry about ear ringing, the surgery isn’t worth it for me. As I’m sitting here the ringing is deafening. It’s so loud and has been every single day this year since the second day of my hospital stay. I can tune it out and move on. But no, thats the start. He stated that these types of tumor typically grow. And even if it only grows 1% a year– that yes, it may not cause problems this year or the next, but I’m only 30— so what happens 10 years from now or 20 years from now when the mass in my head is much larger? I don’t know.
But here’s the thing. My rational side asks: but when did my symptoms start? Well, about 7 months ago. My ear ringing, my intense vertigo, my excessive teeth grinding/twitching at night— it all started 7 months ago. And I know this lump didn’t pop up out of no where the day I entered the hospital. And my ringing is in both ears— not just the one side. If this lump caused the ringing, it would only be on the one side, not both. And the vertigo? Well, I don’t know. It’s worse the week before I get my period each month— so maybe it’s my hormones out of whack. But I’m not the brain surgeon. And I don’t understand the blood vessel issue he was telling me about. Or really anything about tumors, except that in Chinese medicine, it’s a symptom of excess. And I can’t make this lump go away on my own (though, I’ll certainly wish it away each night).
I’m tired of being the medical case. The sad story or pathetically depressing story teller. One year ago, I was the happiest I had ever been, and now, it’s like I’m the biggest downer in the world. This year is really crushing my self esteem and my self worth. It’s hard. I don’t have much choices here— just pretend that everything is all rainbow and unicorn like or just open up and admit that my life has really went to shit this year. And I absolutely hate to be the biggest downer ever and make this blog the most colorful looking but doom and gloom sounding blog ever, but I’m not good at the whole staged life pretending thing.
All I can do now is wait for an MRI and some other type of scan (the name is escaping me) and see what happens. According to the doc, if it grew at all since my first, then it needs to come out now. If it didn’t, it buys me time. And then I can ask, do I want it out now anyway to get it over with? In 6 months? Or maybe in a year? There’s no perfect time. I certainly don’t want it now, but I know that whatever side effects the lump creates, they will be permanent— so I don’t want to just sit on it and let it grow and cause more problems either. It’s like a game of chicken.
Maybe that’s it. Maybe thats my joke.
“A brain surgeon walks into a bar… and says, ‘it’s like a game of chicken.”
Except thats not funny either.
—–
I’ve laughed and cried through this years troubles. But each new blow is making it hard to find the humor. I just keep reminding myself that life and happiness is about perception. That, I just need to work past all the physical and emotional pains and fears I feel and find a new way to go about looking at this and living through this. In the meantime, I guess I’ll keep you guys posted on what comes up next. How do you like my enormously bright and colorful photo to match this post? It’s not fitting at all, which I found it to be perfect.
45 Comments
So very sorry to hear of your news. Fellow brain tumor girl here—mine was also discovered after a real shitty year. I lost my high school sweetheart in a car accident, and then was in a separate one myself in which I broke my hip and pelvis. I also had a concussion, and when they scanned my brain they found a "cyst". A later MRI revealed it was actually a tumor. I also had the whole "this needs to come out now" response. I went to three separate neurosurgeons, getting a different opinion from all of them. Ultimately I decided to have surgery, mostly because I already suffered from off/on crippling anxiety (since childhood) and I couldn't let go of it. I knew I'd always be wondering if the damn thing was growing. I was absolutely terrified going into surgery, but it went really well. I was in the hospital for 3 days to monitor swelling, and was just really tired for a few days after. The only side effects I have now are frequent headaches, and I can't sleep on the left side of my head. Mostly, I wake up every day with absolute gratitude. You will certainly be in my thoughts as you make your decision and go forward.
God… I am so sorry. I don't even know you but I have been following your blog for a few years now. You have always been such an inspiration to me and my heart just goes out to you. I am so so sorry that this year has been so shitty. Is that OK to say here? I hope that the next year hold so much more joy and happiness for you. And I hope so much that you find yourself healthy again very soon.
Hi Drea, I've been reading your stuff all the way back in the LJ days. (: My heart breaks for you each time I read about the things going on in your life. Life is a rollercoaster for sure. I don't normally comment but wanted to reach out regarding your surgery. I understand your hesitation and it sounds like you have a solid plan moving forward. I'm a registered nurse that works in a medical intensive care unit and we take care of a lot of patients that undergo the brain surgery that you are discussing. (I live in SC but am from FL originally.) The neurosurgeon that works with us is PHENOMENAL and he did a lot of his training in Miami. I have seen only success after success with him. Brain surgery sounds scary. And it IS scary, but I think all surgeries are to a degree. I've seen very positive outcomes – a lot of patients just have to do a one night stay in the hospital for observation. I don't know if this is reassuring to you are not, but I'm hoping it is. I work closely with this neurosurgeon and could ask him for colleague recommendations in Miami if you'd like. Otherwise, I want you to know that I have been praying specifically for you a lot these last 6 months. I know you aren't a believer, but I have faith that this rocky road you've been on has a purpose greater than any of us. Your stories about your "c-diff journey" have been really inspiring. I work with c-diff patients but only see them in the acute care setting. I never think about their lives when they go home. So hearing your experiences have been very provoking and it has increased my compassion toward these patients.
I am so very sorry. I know all about being "the medical case" and I am sending you hugs and strength from afar. I don't know whether you are a religious person, but I'll keep you in my prayers!
Oh Drea, don't let your self-esteem be crushed by this. None of these is your fault. It's just that life happens. You have been incredibly strong and amazingly graceful in this trial – at least it seems to me this way and I've always been so touched by your courage. If you could talk to a good Chinese doctor or acupuncturist, they might offer some alternative remedies to help keep the situation at bay – but really you should try to find the good ones. All the best!!
I've been seeing a good acupuncturist again. I like her and her practice a lot. I discussed the tumor a bit with her– but I'm def. going to look into more options– especially if it hasn't grown yet <3
Hi. You're really not the biggest downer ever. And honestly, it does sound like your life kinda went to shit this year. I don't know anything about brain tumors, except my friend had one and a husband of another friend had one and both of those people had serious brain surgery and came out 100% and are living happy lives. I don't believe in God, but I believe in love and I always have hope. Your life and posts tell me you are a kind, loving being who is loved by many. Those who love you will hold you up until you can be your happy self again. And like I tell my teens, if we're lucky, life is a cycle of ups and downs. Hang in there. Your Up is coming. Peace and love – Tracie
Sending positive thoughts and wishes for your complete recovery your way.
It must be so hard to share this news. That's a tough decision. I'm praying that the Holy Spirit gives you wisdom and peace beyond understanding.
I think you should listen to and trust your gut (as a fellow C-Differ, I'm sure that sounds ironic!). Our medical industry is designed around money and fear and I think it's important for you to do your own research, get second and third opinions and make sure you really have peace about the way to handle it. My mother had a brain tumor and she opted to get the biopsy that they pressured her into only to find out it was bad news that completely ruined her quality of life. The biopsy ended up being a big deal because, I mean, they are messing with your brain. And she always said, she could have just treated the cancer as if it was the aggressive type she found out it was. By the way, I'm not at all saying this is what you have. I'm just saying that the medical people like to push their ways on us and maybe that's not the right way for each of us individually. Also, not to beat a dead horse (can't think of a vegan-friendly term similar to this!) that's all over the internet lately, but if you get a chance to watch The Truth About Cancer, there's an episode (I think it's the second or third) that has an interview with a girl who cured her brain tumor by rubbing frankincense on her skin near it and also taking it internally. It's definitely worth looking into alternative treatments, etc. I get a lot of strange looks from people who think I'm a snake oil sales(wo)man, but when the medical community has let you down so badly and actually almost killed you, you begin to get really angry and are desperate for other ways. Sometimes the Western way ends up being the best, but only you can make that decision for yourself. Either way, I just hope you have peace.
"the truth about cancer" keeps popping up lately— I will definitely be watching it soon. I'm really into shit like that anyway– and it now makes even more sense to watch it. I have doTerra frankincense. I have yet to take it internally– I don't know why I'm so hesitant o try it. But maybe its time I try.
Oh my, what a year you've had! I'm so sorry to hear of this latest. You'll be in my prayers.
I haven't got any advice, chinese, western or otherwise on how to deal with this. I'm just really, really sorry this is happening to you. Not fair. :-/
Holy f*#@! I am in utter disbelief at how truly effed this all is. I just want to cry at the top of my lungs for you, how unfair, come ON!!!!! I can tell you I'm so sorry and how much I hope for peace for you and I will continue to say these things. But can I just say today.. You do not deserve this shit. Sometimes it just well and truly isn't funny. Love and light, Drea.
I'm so with you Drea even if I'm not on the internet at all these days. I will be mum second time so my thoughts and emotions are all over the place but I will pop by whenever I feel I can.
I didn't want to hear about the lump, not this way. I believe that there will be sun for you, there will be good, healthy days. Take care and do what's right. If the lump has to go, I know everything will be fine because you deserve it more than anyone. I'm with you wherever we both are. xxx
hugs, thank you for sharing your health journey with us. i know this cannot be easy. just hold your family tight, and have them hold you. xo
Oh darling…. What can anyone say?? I hope you are feeling our love…
My father in law had a lump in his brain, and was also reluctant to have his head poked on. It turns out, he decided to get the surgery. I won´t sugarcoat it, it was a bit hard for a few weeks. He had terrible headaches (keep in mind, he is much older) and mood swings. It turns out, he was depressed and didn´t even know it. The lump was pressing the tiniest bit of his brain that regulated hormones. As soon as the headaches stopped (as a result of the surgery, not other side effects) his life improved GREATLY. He didn´t even know he was tired all the time, he just got used to it.
His strength, sense of humor, sleep, depression… everything changed. Truth is, you can´t know what the lump is really affecting until it stops affecting you. He went in and had it removed because it was affecting his vision. Turns out, it was affecting everything else and doctors couldn´t even tell, because the brain is such a complicated and amazingly beautiful organ and machine.
Every story is different, I just wanted you to know there is hope, a lot of it. It is easy to feel alone and depressed, but trust me, things WILL get better. Ultimately you and your family will decide what is best for all of you, but if my story gives you the tinniest bit of sunshine and hope, I am glad.
He is now over 60, plays 18 holes of golf every week. Goes to the gym every day. He looks better than me and my husband! really he does! Good luck with everything, you are a beautiful soul. Lots of light and love.
(Please let me know if you would be interested in me giving you the doctor´s info. We are from Mexico City and he works in a private hospital. It may be a little more expensive, but trust me, when you are in pain you want the best possible care and treatment, as well as privacy and attention)
I'm really happy to hear about your father in law. I have the huge fear that things will change with he surgery– but for the worse. Which I know isn't a good way to think about things, but its always a very real possibility with brain stuff. I guess I just have to wait for the next MRI (early december) to see what happens— and hope I turn out better than before, like your FIL <3
Hi Drea. I am so sorry this is happening to you bu thank you for sharing with us, since I've been worrying a lot about you in the last week or so. I have a friend from college who went through the same thing with a benign brain tumor being removed — and she is an awesome person who I can absolutely put you in touch with if you want. She would totally talk to you and let you know exactly how things will go! She got through it and her surgery was almost 10 years ago at this point and she's never looked back! Things got so much better for her after her surgery.
My sister was diagnosed with an AVM after having a seizure two Christmases ago and had brain surgery shortly there after. It was scary and the recovery was rough but almost a year and a half later and she's doing great! I'm happy to talk more about her experience with you if you'd like. It's a bit scary thing to think about and get through but the sooner you go through it, the sooner you can put it past you and move on with living. ❤️
I'd like to know what you mean by a rough recovery, if you don't mind. Painful? Stuck in bed? Anxiety? Worsened symptoms? Either way, I'm REALLY happy to hear she's doing great now.
I can so relate to your year…mine started with a miscarriage and then I started having a lot of your symptoms- vertigo, numbness in my extremities, weakness, spasms, feeling awful. The neurologist found a spot in my spine, a lesion. He didn't know what it was. The neurosurgeon said if they took it out, I could be paralyzed. So they can only watch it and hope it's not a cancerous tumor. Then they found a lump in my jugular vein. They wanted to take it out, but my daughter was having open heart surgery, so I had to wait to do that. Oh, then we had a second miscarriage. The thing I find interesting is in the meantime we found mold in our home. I know that you mentioned you had also? I'm starting to wonder if that has played a bigger role in this than I had previously thought. I've been researching toxic mold symptoms and all of those are listed, even miscarriage. I know how these things can just break you down, how they can make you feel hopeless. I have to say, the one thing that has helped me most is seeing an acupuncturist every week. I don't think I'd be functioning otherwise. Thinking of you and hoping this year is the last of these trials for you, hugs!$
I'm sorry to hear about your year :/ we both need a coconut. Did you have the mold removed? Did you move? We seemed to have taken care of our mold problem. Honestly, if it wasn't for the fact that I was incredibly sick all throughout my time in Massachusetts as well (over two months)— not just in my home, I wold def think it is just a mold issue. At the very least a combination. I did start seeing my acupuncturist this month. It usually helps— sometimes, like yesterday, it doesn't. I'm keeping a close eye on every inch of our home to see if anything comes back of course. And I'm getting the mercury removed out of my mouth soon— I just have to keep hoping something works, eventually. How are you doing now? Still same symptoms? Just managed with acu?
You are a warrior and you will win this struggle like everything else. Sending you all the good vibes! xo
You have overcome so much in the past, and Drea I know you will overcome this as well <3 Whatever your thoughts on religion, I'm praying for you. Truly, hard, passionate prayers. It will all be worth it in the end
This is a hard fight. It's the kind of thing that makes it difficult to know what to say. But we want you to know that we're hearing you and we're seeing you and we're grateful for you.
Thank you for your honesty.
sorry to hear this drea. might i make an unsolicited suggestion? my grandmother had a benign brain tumor for 40 years, she kept it at bay (and even shrunk it) with chinese herbal medication. she went in for diagnosis with a western doc because she had ringing in her ears, vision problems, and balance issues, then b-lined for a chinese doc who started her treatment with aggressive and disgusting herbs, then once the tumor stabilized (and she had zero symptoms), took less aggressive (and less disgusting) herbs for the rest of her long life (she died at 97). she did go back to the western doc for a followup, he was amazed that her eastern treatment had the results it did. this might not help at all, but just in case… 🙂
Yes, a most likely benign tumor I had shrunk and is almost gone and I credit my Chinese doctor for it!
I like this type of unsolicited advice. I was on a lot of herbs this summer after the c. diff. They were as bitter and as disgusting as they could be— but after a few weeks, I realized I didn't mind the taste anymore. I see an acupuncturist– who i think is really good, but they're herb game is not as strong. I asked her during my session yesterday and she showed me a pressure point to work on– but I'm definitely going to consider contacting the herbalist I saw this summer about a treatment plan <3
@foreveramble— what treatments did you do? acupuncture? acupressure? herbs? if it grew at all, I'll probably just have it taken out, if it stayed the same I'm going full force into anything I can do to see what happens and giving myself time before jumping into a surgery.
Drea how about this
A brain surgeon walks into a bar and says " Can I pick someone's brain for a sec the drinks on me"…….
Well my dad had brain surgery last year he is a strong healthy 70 and it was a successful surgery serious but successful. I know that will be come out of the surgery stronger and healthier. I will be thinking of you and your family and life does suck at time but it sure make the good times much sweeter.
thats a pretty good one.
<3
I still think you are worth it. I still think you need to keep fighting. It's really really hard right now, but it's also the darkest before the dawn. There will come a day maybe in a month maybe in 10 years, but a day will come when you will look back on this year and your heart will fill up and you will be so thankful and so in love with the life that you have, because you are going to get through it.
I don't even know what to say, I am sorry this year for you has been bullshit – total rubbish. You're doing an amazing job just to pick yourself up and keep going. You don't have to be happy tho, you know? The fact that you keep going is enough in itself, so don't pressure yourself to try and be happy go lucky, shit is hard right now. 2015 can eat a d*ck. I am so sorry.
Holy Moly, Drea! Holy moly…
There's nothing to say, except i'm glad you're writing it down for the rest of us. There's others out there who feel that way too. Some parts of life ARE just major downers i guess. Major downers where there's just nothing to do but complain. I feel you. And i'm so sorry. This just sucks. Sending love and wishing away that brain tumor too.
How honest and genuine. It's okay to be tired of being another medical case because you really are far more.With whatever you decide, now, 6 months, a year, whenever – choose what is best for you. Don't make the call with any one besides your family, your doctor and your own heart. Best wishes,
Janiece of http://www.cultureintheory.com
Be strong! You will overcome this too! Lots of hugs from Romania!
The only Romanian I know is, "da." which works. Thank you.
Oh Drea. My heart goes out to you!I've followed your blog for a long time and I really wish that someone could wave a magic wand and make you healthy!
You'll make the right decision. It will be hard to make, whichever way you go, but the right ones are always the hardest.
Just listen to your heart xx
marlowe says, "magic is not real, except at disney world" — maybe I should go there. <3
Oh Drea, I'm so very sorry that you're going through this. You really have had so much to deal with already. I'm sending you the biggest cyber hug. I wish there was something I could say that would help. One day at a time sweetie. You are in my thoughts. CJ xxxxx
thanks cj <3
Oh Drea. I've only ever contacted you once before via facebook pm. And all I want to say is big huge hugs to you. That's all. Anything else would be just words. xxx
FUCK MAN! That aint no humor tumor at all…thinking of you! I want to say it will all be alright, but you will probably hear that ! million times today. STRONGS! xoxo
fuck man, indeed.